A Life & Death Conversation with Dr. Bob Uslander
In this podcast, we talk about life, death and everything in between. We'll explore how to age more gracefully, have meaningful conversations, and what you can do now to ensure the best possible end-of-life experience for yourself and your loved ones. Let's get friendlier with death.
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What have We Learned After Two Years of Aid-in-Dying Bedside Care? – Dr. Lonny Shavelson, Ep. 31
11/20/2018
What have We Learned After Two Years of Aid-in-Dying Bedside Care? – Dr. Lonny Shavelson, Ep. 31
Dr. Lonny Shavelson is the founder of Bay Area End of Life Options, a medical practice in Northern California devoted to educating about medical aid in dying and supporting patients and families through this process. Contact Transcript Note: A Life and Death Conversation is produced for the ear. The optimal experience will come from listening to it. We provide the transcript as a way to easily navigate to a particular section and for those who would like to follow along using the text. We strongly encourage you to listen to the audio which allows you to hear the full emotional impact of the show. A combination of speech recognition software and human transcribers generates transcripts which may contain errors. The corresponding audio should be checked before quoting in print. Please note there is some content that is explicit in this episode. Dr. Bob: Dr. Lonny Shavelson is the founder of Bay Area End of Life Options, a medical practice in Northern California, devoted to educating medical providers about medical aid and dying, and supporting patients and families through this process. As you'll soon discover, Dr. Shavelson is an intelligent, articulation and passionate physician, who has a huge heart and is committed to providing excellent care to people dealing with terminal illnesses. He and I are bonded by a similar commitment. We also share a bond in that we were both emergency physicians in the past. We've seen the standard way people are cared for at the end of life, which is often not very pretty, and often not aligned with how they've lived their life. As you'll hear in this interview, Dr. Shavelson has experienced his own brush with death, which has created far more understanding and empathy than he could've imagined. I hope you find this discussion as informative and interesting as I did. Well, Lonny, I've been looking forward to this conversation with you for quite some time. I saw it coming up on my calendar. I was excited and woke up today really energized to have this conversation and be able to explore deeply, what it's like for you to be a physician that's in the same realm as I am, in support of medical aid and dying. Thank you for taking the time to speak to me and my listeners today. Dr. Shavelson: You're really welcome, I'm glad to be here. Dr. Bob: Yeah. So, just maybe give me a little bit of ... Give all of us a little bit of background, as to how you came to be the physician with Bay Area End of Life Options. What was your journey leading up to that, and what made you decide to venture into this? Dr. Shavelson: Let's see if I can condense this a little bit. When my interest in going into medicine in general, as happens with many people who go into medicine, comes from a family history of dealing with illness. I think many people in medicine if you ask them this question, why you went in, they'll start off with the, "I want to help people," answer. And if you dig a little bit deeper, you'll find there was some illness in the family in their prior history. So mine, very specifically, was my mother had Crohn's Disease. It's an inflammatory disease of the bowel. And because of that disease, imagine having cramps and diarrhea all of your life every day and having multiple surgeries on your bowel to try to accommodate it and bowel obstructions and all that. She was a pretty miserable person, and also in retrospect, severely depressed. So when I was starting at the age of about 14, I became not only aware of the fact that my mother was suicidal, but she enrolled me in pacts for her death. Part of the reason that I was guided toward medical school was because of the, my mother sort of wanting to know that I would be available, not only to help her in her illness but also to help her die. Dr. Bob: Wow. Dr. Shavelson: So we used to have conversations around the dinner table about my mother's dying. And I thought that was the normal way people grew up. I didn't, you know ... You know, if you grow up in a certain way, you assume that that's the way it is. You don't have any other experience of any other childhood to compare it with. So I thought discussions about death and dying were what people talked about during dinner. Dr. Bob: Not me, it wasn't happening at my dinner table, I'll tell you that much. Dr. Shavelson: Yeah, now I realize that [inaudible 00:03:48] doing that. We didn't have football and baseball on the TV. We had sort of philosophical conversations about death and dying, including suicide. Dr. Bob: Wow. Dr. Shavelson: So my mother- Dr. Bob: We had the Dick Van Dyke show, and the Andy Griffith Show. Dr. Shavelson: Well, we did some of that too. It falls short to what it was. So anyway, I grew up with death and dying discussions, including the potential for suicide as a rational way out of an illness. That was one thing that guided me, certainly into medicine, and when I got into medicine, I kind of left that behind for a long time, realizing it was pathological. It wasn't reasonable, especially in my mother's case. She was severely depressed I was her son. She had asked me to help her kill herself a number of times, and I had turned that down. But in the end, I knew that if she was very sick, and if that was what she did, and if it was more reasonable that I would then help her. And this was way before anything like medical aid in dying or what was then called physician-assisted suicide, was even thought to be legal at any time in the future. We were back in the 1970s by the time I went to medical school. Anyways, so that led up to ... You know, I got into my medical career as an emergency medicine doctor. Over time, I developed a dual career as a journalist and a photographer, as well as a medical doctor. So I worked about half time at each and actually moved fairly advanced in journalism with writing some books, with working with NPR as a reporter. So my journalism career took off in the same way that my medical career did, pretty much advancing over time. And to cut this to the chase, in 1996, I wanted to explore this question about what was then called physician-assisted suicide more deeply on an official level. The reason was that Jack Kevorkian was starting his nonsense, killing patients. And I always change that to killing patients who weren't his patients. And I thought that that was not a very good model of what we could look at for helping people die in the United States. But it really struck me that there was a significant underground, where ... You know, and I know, Bob, that before anything was legalized, if somebody were close to death and were really suffering, we would turn up morphine drips, we would increase medications in such a way that we knew we were participating in aid in dying. But with a wink and a nod to the families saying, "Give him morphine once an hour," type of thing. Knowing that would bring on the death. Because the patient was having severe suffering and was nearly unconscious and just needed to be helped along. That, and the presence of the ... I was going to say [inaudible 00:06:38] presence of the AIDS community. People were dying of Autoimmune deficiency disease. And they were really actively participating, but in the underground, of hoarding medication. So if you had AIDS, you could easily tap into the AIDS community and get thousands of tablets of morphine or methadone. It wasn't hard to do, because people were hoarding their medications with the intent of using it themselves. And if they end up not needing it, then they would pass it on to this sort of medical bank where medications were stored. That was the beginning of an interest I had in the pharmacology because they had the pharmacology to really try to do this right. Whereas individuals in their homes and in darkened bedrooms were talking with their family about wanting to die and then taking all of their, let's say their hospice medications. That often did not work. Anyways, this led to a book I wrote, called A Chosen Death, in 1996. And it was called the Dying Confront Assisted Suicide. It was about this underground ... I found families and doctors and nurses, and various people who were participating in a very significant underground. Where they were helping people, who requested aid in dying. They were doing it without charting a note; they were doing it without keeping any record of what happened. But I was able to write the story of five different families as they progressed through this. And in 1996, A Chosen Death came out. And the conclusion was very, very simple. When you look at what I call dark bedroom suicides when you look at those dark bedroom suicides, hidden, and nobody could talk about them, there were so many things wrong. One was that often because of inexperience; the wrong people were taking the wrong medications at the wrong times for the wrong reasons. And then taking medications that didn't work and having disasters follow. It just was a terrible scene, actually. And my conclusion was, this is going to go on like ... Comparison with abortion is very strong, is that there were back-alley abortions, and we were having dark bedroom suicides. What's wrong with the back alley abortions is that they were terrible, they were not supervised, they were not done well. And they would continue no matter what. What's wrong with the dark bedroom suicides was the same. So I made a very strong, I think argument in the book for legalization. Based on the fact that making this illegal was not working, was creating a disaster for families at the most important parts of their loved one's lives. That started, my political involvement for about three, four years I stayed very politically involved as the supreme court was writing its decision. In 1998, the Supreme Court made a decision where all nine justices decided this was not a constitutional right. But that the states had the right to do this. So in other words, there's nothing in the constitution that says that legal medical aid in dying should exist. But there's also nothing that prohibits the states from doing it. So one by one, I watched the states Oregon, Washington, Montana. It took 22 years more after I wrote the book A Chosen Death before we got this all legalized in California. And then, to bring it up to the present, when the law was legalized, I thought the way of starting it up was terrible. There was not enough primary education happening. Doctors were confused about what it was. The people who were looking at it were like, medical risk advisors and hospitals, and lawyers in hospitals trying to figure out their policy. And nobody was looking at the clinical practice of how this would work. So I decided to start up a practice with the intent of a couple of things. One was that I would be available to patients who could not find another doctor to do medical aid in dying with them. So if a patient had a desire for medical aid in dying or at least a question about it, and they approached all of their physicians, and the physicians said, "No," for a variety of reasons ... And Bob, I'd like to talk to you more about that in a bit. But if they couldn't find another doctor, then I would become their doctor and help them with the physician aid in dying. And that started up in day one of the new law, on June 16, 2016, and has been going ever since. And has grown so much, the request for services from my practice Bay Area End of Life Options has grown so significantly that I had to take on another doctor. So I now have Linda Spengler working with me, another physician. And then we took on a wonderful nurse, Thelia De Wolf, who is a hospice nurse. And we sort of borrowed her permanently and brought her into our practice. So we have a practice of three people now. To date, we have taken over 800 requests for medical aid in dying from different patients across the state of California. And for various reasons, we sort of brought that down by referring patients to other doctors or talking to their doctors about participating. There are lots of ways we'd windle that number down. So right now, about 240 patients have been in our practice, where we follow them for a request for medical aid in dying. And to be clear, when somebody calls us for medical aid in dying, it doesn't mean that we just give them medical aid in dying. There's a long, evaluative process. We work with them about their palliative care, we work with them with their hospices. We talk to them about ways they may die, and that this is just one of the ways that they may die or choose to die. And what that's resulted in now, we stay at the bedside when a patient takes the medication. It's the hallmark of their practice. Is that we don't feel that this should be the responsibility of the patient or the family to be taking medications at such a difficult and anxious day, the day that somebody is about to die. And everybody's worried about it. And when we walk in the door, the worry just goes out the window and they're able to do what they should be doing, which is pay attention to their loved one who's dying. And pay attention to themselves and how they're reacting, instead of being the ones who are mixing up medications and worrying if it's right, and worrying how it's going to go. And they're all alone doing this medical procedure, with the patient. We have been at every one of the bedside deaths. We'd been, I'm sorry, at the bedside of every one of our deaths, which are now 114 deaths at the bedside. The advantage of that is that we've been able to get really good at this. We get a sense of the social aspect; we get a sense of the family aspects. We get as a sense for the need of how much palliative care, and how to talk with the patient about alternatives. They don't have to do medical aid and dying. But if they really do decide that they want medical aid in dying, we are there for them. And that's the fundamental part of our practice. The other thing that having such experience does is it lets us travel the state a lot. We get requests from all over, and we travel quite a bit in order to help patients. And every time we go to a place where there's no access, where the patients ask all of their doctors, and they couldn't find anyone. We would then talk to the doctors in that community and usually find two or three. So a great example is we found that we were having to go very far up north for us to Paradise, California, near Chico. It's a three-hour drive. We get tired doing three-hour drives and coming back. So we started looking around and beating the bushes, and finding docs in Chico who might be open to it. And we now have a group of three doctors in Chico who are very open to starting their ... To adding to their own practices, their family practitioners. And they are now going to add to their practices medical aid in dying. And we are going to train them. And soon, we will not have to go to that part of the state again. And that's the wonderful part of this. Is that we don't want to have this practice of medical aid in dying become centralized to a small practice like ours. We want many, many doctors around the state to be doing this. And slowly we're seeing that happen, where there are areas of Northern California where we no longer go because we know the doctors up there who will. Dr. Bob: And that's phenomenal. Just being able to expand the access for people. And of course ... First of all, thank you for sharing that background, and kind of expressing in such great detail what your practice entails, how you support patients. Thank you for doing the work. I know that it's not easy. It can be extremely challenging, emotionally, and taxing in many ways. Because I'm also doing a very similar style of practice. As much as it's challenging and taxing, it's also very gratifying, right. I know that you feel the same way. That there are people who are suffering and struggling, and they've been shut down by many physicians, and they're just so grateful to find someone who's willing to not just support them in going through the process, but truly support them. And truly support their families, and make sure that they have all their questions answered, that they know all the options. And that the fear of this is, if not completely removed, certainly lessened. Dr. Shavelson: Yeah. You know the most common, repeated expression I hear is about what you just talked about. Is about fear. Commonly when somebody's dying, they've never done that before. And so they're quite afraid, what does it feel like when I get that close? I mean, you may know you have your cancer and all that. You know what it feels like. But when you're that close to dying, you don't quite know. It's really frightening as to where do you go, and how does it work, and how much suffering is entailed in the process of dying. So I'll sit down with a patient for an hour or two. And we will talk about what I call the how you die conversation. And the thing that, the response that's most common, is that they will tell me, this is the first time that I'm not afraid of how I may die. That nobody has explained that to them, and given them all of the options, including medical aid in dying. And really explain, this is how the process works. You may slip into a coma, and be quite comfortable. Or you may have an anginal agitation. Or you may be short of breath, and that can be treated symptomatically, but not completely. And we go through the how you may die conversation, and then every individual. And then they take a deep breath, and say, "My god, this is the first time since my diagnosis that I am not sitting here afraid of how I die. I know that I control it now." And that is the most moving, and tearful moment that I've ever experienced. Dr. Bob: Yeah, what a beautiful thing that is. And it's kind of crazy to think about, but I have that same experience over and over again. No one has told me, no one has talked to me about this. No one has actually talked to me about my death. All they talk about is how they can palliate me, and how they can comfort me and everything leading up to it. Dr. Shavelson: That's right. Dr. Bob: But even hospice folks. For some reason, there's just this reluctance. It's a fear on the part of the providers to actually engage in that conversation. Maybe it's their own fear; maybe they're afraid they're going to upset people. But it's just the opposite. Dr. Shavelson: Yeah. You know, I think Bob, that in a lot of ways, the entity of the legalization of medical aid in dying, has made it so, that before you offer somebody such a serious option, you have a real conversation with them. It's kind of almost built into the law, though I don't think that's necessarily the reason. The law really says that we have to explain all alternatives before we can accept a patient for medical aid in dying. And that's not what drives my conversations with the patients. What drives my conversations with he patients, is that they really should know what's up in their future, and how they're going to die. But that conversation about, how will dying happen, is oddly enough in legislature for the first time. And I think that's a healthy thing. There are many bad things about this law, but there are some good things about this law. And as it sounds like, your practice sounds very similar to mine, in that we spend time because we are not going to have this decision taken lightly, to take medications to end your life. We don't want that to be a casual decision. And therefore, we're going to have a really in-depth and truthful conversation with our patients. Dr. Bob: Right. And really, by setting up our practices the way that we have, it really facilitates that. I understand the limitations that a lot of providers have, a lot of physicians. They don't have the time, or it's very difficult to make the time to have the depth of conversation that is required to work through all of these different aspects of life and death....
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Debbie Ziegler Shares Her Daughter's Journey to End Her Life With Dignity, Ep. 30
11/15/2018
Debbie Ziegler Shares Her Daughter's Journey to End Her Life With Dignity, Ep. 30
Debbie Ziegler's daughter, Brittany Maynard at the age of 29 was diagnosed with a terminal brain tumor she chose to end her life. Her story was controversial and painful. Debbie shares her daughter's journey in life and how she ended hers. Photo credit: Simon & Schuster Contact Note: A Life and Death Conversation is produced for the ear. The optimal experience will come from listening to it. We provide the transcript as a way to easily navigate to a particular section and for those who would like to follow along using the text. We strongly encourage you to listen to the audio which allows you to hear the full emotional impact of the show. A combination of speech recognition software and human transcribers generates transcripts which may contain errors. The corresponding audio should be checked before quoting in print. Transcript Dr. Bob: Well, Debbie, thank you. I can't tell you how much I appreciate you coming and spending time. We've had a number of conversations over, since we met, which was probably a year or two ago. Debbie Ziegler: Yes. Dr. Bob: I think each time we talk, we get a little bit deeper into the conversations, and I think we both are very aligned in what we're trying to do with our time here. Debbie Ziegler: Absolutely. Dr. Bob: Yeah. I would love to use this time for you to share a bit about Brittany so people can really know who Brittany was. I think a lot of people know the name, Brittany Maynard. It's become, in many areas, a household name, and I think certainly in California, and a lot of people think of her as groundbreaking, but they don't really know Brittany. Hopefully, after this, after people hear this, they'll get your book, and they'll learn a lot about Brittany and about her journey, but I'm hoping that you can share a bit about that, because I think it would be really valuable for people to understand who Brittany was, what she did, and then what you've been doing to carry on her legacy and honor her, so ... Debbie Ziegler: Well, thank you for asking me to speak with you today. Brittany is remembered for the last act of her life, and those last minutes of her life are relived over and over again and spoken of over and over again. She knew they would be, and before she died, she asked me ... She said, "Mama, make sure people remember me for how I lived as much as they remember me for how I died." That is something that I try to honor her by doing, and one of the ways that I honored her was by writing a book about the way she lived, and I titled it Wild and Precious Life because Brittany did live a wild and precious life. She was very much in love with this world, and when she was terminally ill, she would say to me, "The world is so beautiful, Mom. It's just so beautiful, and I'm going to miss it so much." She did not want to leave this earth. Nothing inside of her desired that, but the fact was that she was terminally ill, and she had a terrible and gigantic brain tumor that had been growing for over a decade. When I look back at Brittany's life, I try to focus on the brain and how marvelous and plastic it was to tolerate the growth of a tumor for 10 years and to, as that tumor slowly grew, her plastic, resilient brain transferred function. I try to remember that. Even when I first find out she was sick, she had already lived a miracle, and it's important to focus that. The miracle I wanted to happen, which, of course, was that she wouldn't die, didn't happen, but a miracle had already happened in that she had lived 10 years with the brain tumor growing. Dr. Bob: What a beautiful awareness and a gift. It's so interesting because many people don't have that. Many people have a, are diagnosed relatively quickly after something that starts developing because it's created issues that can't be ignored or- Debbie Ziegler: Yes. Dr. Bob: ... their plasticity won't happen, and so everything changes from that moment on. Right? They're thrown into the health care system and start having procedures and treatments, and so ... You know that this is a fatal illness, even when it's caught early. Debbie Ziegler: Yes. I think that one thing that Brittany and I talked about quite frequently is that every person's disease is different, and it annoyed Brittany that people felt that just because their uncle, cousin, niece, had had a brain tumor, that they somehow knew her journey. The same thing happens to, I think, cancer patients with any kind of cancer. We have to remember, as we interface and speak with and try to love these people through their illness, that every body's illness is different. Just as our bodies are different, our cancer is different. It can be very, very frustrating for a patient to be told, "Oh, well, my aunt did this," or, "My uncle did that." Let's just try to take each patient alone and single and look at their disease and look at their illness separately and try not to bring in all these other judgments based on other stories. Brittany's illness, she had been living with, and the tumor had been growing very slowly, and so that allowed for that plasticity. If a tumor grows in your brain in a quick fashion, a much, much smaller tumor could kill you. Dr. Bob: Yeah, or in a different position, a different location in the brain. Debbie Ziegler: This would be the same for other cancers. It would be the same for people with any kind of cancer. Depending on how that cancer, how that tumor's growing, it takes its own cruel path, and so one of my big hot buttons is that we stop and remember that everybody's journey is different, and everybody faces their illness in a different way. The way my daughter faced it was by getting all the information she could get. She was almost an encyclopedia about brain tumors, about the types of cells that make brain tumors, about how those tumors progress in people of certain age groups. She read white papers. She had a good education, so she was lucky enough to be able to read that kind of paper that might put some of us to sleep. She was able to read it and really extract information for it, so when she entered a doctor's office, she was speaking their terminology, and she was very well read, so that is a different kind of patient. Dr. Bob: Yeah. I would imagine that for certain doctors, that would be a little bit ... I'm not sure if "intimidating" would be the right word, but they're not used to that. They're used to having, to doing the education and kind of doing it on their own terms. Debbie Ziegler: Yes. There is, and there is this paternal mold of medicine that's been in the United States for a long time where, for many years, we looked at our doctors as sort of an extra father in the family that what he said was how it went. We had this paternal model where we never even asked the doctor, "Well, what are my options," and we didn't have the internet, and we didn't have this quick way to get information. In the case of my daughter, she was actually checking out medical documents online and reading medical documents. We're in a different place, and we're in a different time. We're struggling with this old, paternal medical model, which isn't working for us well anymore. Then you add on top of that that if a doctor got a scan of Brittany's brain, one doctor said, "I expected her to be wheeled in on a gurney and unable to speak," because the tumor was in that portion of her brain that allows you to speak and vocalize, and it looked like that must, those skill sets must be gone, but because it had grown so slowly, those skillsets had moved, and she was able not only to speak but to speak very articulately. I do think it was a shock, and a little bit more difficult to deal with, with a patient who's very well read and very outspoken. My daughter was, even from a young child, a very purpose-filled person. I remember they observed her playing when they were analyzing whether she was ready for kindergarten, and they wrote in the report that her playing was purpose-filled. That came back to me as I watched her negotiate her illness, and I thought, "Okay, well, those things that made it difficult to mother her, that purpose-filled, stubborn, willful sort of way, was a wonderful asset to her when she was ill and needed to navigate her illness." People ask me all the time about how Brittany could make a decision like this so confidently, and my answer is that she had the innate personality to question and to, and she also had the educational background that she could absorb the scientific information and accept it on a factual level. The emotional part, matching her ability to be emotionally strong, matching her background to be able to understand the information that is terribly frightening, and which, honestly, I mean, I taught science. I couldn't read it in the beginning. It took me about a month to be able to read about brain tumors. I just couldn't do it. [inaudible 00:11:20]. Dr. Bob: You mean you couldn't do it because it was too difficult emotionally or because it was too, the information was too- Debbie Ziegler: It was emotionally. Dr. Bob: Okay. Debbie Ziegler: I also have a science background, and I taught science, so I could read it, and I could interpret it, but as her mother, having just heard that she had a terminal diagnosis with a brain tumor, emotionally I was unable to read about brain tumors for well over a month. This is a part of what happens to the family of the terminally ill person. Sometimes, they're knocked back into a period of denial where they're unable to look at the truths; they're unable to look at the facts. I think that makes it more difficult in some ways, and yet I'm told by psychologists that denial is something that helps us deal with crisis and eventually move on, as long as we move through it and don't stay in that place. I can testify to the strength of denial, and I can certainly say, from my experience, that it is very important to overcome it if you're going to help your loved one. It's something you must battle through and get to the other side. Dr. Bob: I think that's so powerful, and, I guess, recognizing that it's happening, being open to recognizing that, and that it's normal, and you don't have to rush yourself through it, because it is a process, but if you're not aware that that's what's happening, then it seems like it's the reality and it's appropriate, and would be much more difficult to get through it and be of support as you ultimately want and need to be, so ... Debbie Ziegler: Particularly if the patient gets to the point where they are out of denial. Many terminally ill people quietly, but firmly, believe that they have a pretty good handle on how much time they have. Something inside them says it's not going to be more than a few months, but they, if they're surrounded by people who are in denial, they have no one to discuss that with. They have no one to say, "Look, I'm dying." My daughter, because of her youth and because of who she was, said to me in the hospital one night, she was in her bed, and I was climbing on to a gurney next to her, and she said to me, "Mama, you get that I'm dying, don't you? I need you to get this." It just ripped my heart out, but at the same time, I realized, "Oh, my goodness. I have to look at this. I have to turn around. I have to stop running and pretending that I can find some miraculous doctor in some other country," which is what I was dreaming of at that point. "I have to turn around and look at my child who is telling me, 'I'm dying.' I have to be with her in that moment." I'm telling you, it's hard, and I'm also telling you it's really important for the patient, really important for the patient to be able to say, "The people that love me get it. They get it. I'm dying, and they get it." Dr. Bob: "And stop wasting my time." Right? "I'm-" Debbie Ziegler: Yes. Dr. Bob: "Be here with me, because we don't have a lot of time for what we need to do." Debbie Ziegler: In her case, she wanted us to listen to what her desire was for the rest of her life, what it was going to look like, because being told that she had about six months to live, Brittany immediately sprang into her list of, she had a bucket list of places she wanted to visit. She had a list of people she wanted to talk to before she died. She had a list of accomplishments that she wanted to be able to be a part of, which included, in the beginning, she wanted to write some articles. She decided she wanted to write articles because the medication she was on to keep the pressure in her cranium down from this gigantic tumor causing this pressure, she was taking a lot of steroids, strong steroid medication, and steroid medication at that level has some pretty gnarly side effects. It makes you get this round, very full face, which they refer to in medicine as a moon face. Brittany thought, "All right, because I don't want anybody taking pictures of my moon face, and that way, I can write an article and still have an impact and advocate for other terminally ill patients, but I won't be seen." Then as it turned out, and as many people know, that is not the path that it took, and she was asked to have her photograph taken, and then she was asked to be filmed, and then she was asked to be interviewed. All of this was done when Brittany didn't look like Brittany anymore, and she cried, and she said, "I just see cancer in that face. That doesn't look like my face. That looks like the face of cancer." I know what a sacrifice she made to do this for people. We talked about how it was normal at 29 to feel feelings of vanity, yeah, a little bit, as you're a woman and you don't want to look bad, and how she was going to overcome that. Of course, as her mother, I kept saying, "You're so beautiful, Brittany. You are still beautiful. It's just a different beautiful." She would be like, "Oh, Mama, you're my mom," but I just want people who are ill to know that those last six months that my daughter had were some of the most productive month of her life. She had a sense of urgency and joy. In between sadness and terror, there were these moments of great joy and satisfaction, as we walked through a particular place in nature that spoke to her. She'd call me, "Mama, come and look. Come and look at the banana slug. Come and look at the starfish. Come and ... " We shared those moments of joy because she faced her illness, and she was not going to waste that time. That required decision-making. That required saying, "No," to some treatments that she felt, after reading about them, we're not going to buy her any significant amount of time, and while she did those treatments and did not receive significant time, the treatment itself was going to deteriorate her lifestyle. Her quality of life was very important to her, and she said, "If I'm not getting any measurable upside here in the way of extended life, then I need to be looking at the quality of the little life that I have left," and so she remained focused on that, and she remained strong in the face of some pretty persuasive and, in some cases, almost bullying that went on in the medical system of, "You must do chemotherapy. You must start it on Monday." Even her oncologist, after doing DNA testing, told Brittany, "You aren't a good candidate for chemo." She said, "Your DNA, your markers, are indicating that you're not a good candidate. There's a very, very small percentage of chance that chemo would do you any good, and there is some chance that chemo could actually make your tumor grow faster because you have a glioblastoma now." Dr. Bob: Certainly, it would deteriorate her quality of life, which she knew, and yet still there were physicians who were part of her team who were pushing her. Debbie Ziegler: Definitely pushing that. She stayed with her oncologist, who she felt understood chemo the best more than the surgeon, and she said, "Your own hospital just wrote a paper about chemo not always being the right answer for the brain tumor patient, and so I'm saying, 'No.' I know that you know this within these halls, and I'm not going to do it. It doesn't have enough of a possibility of upside for me, and it has a definite downside that's very well known. The symptoms that will take away my ability to do some things that are very important to me," one of being that she wanted to travel to Alaska, and she wanted to ride in a helicopter in Alaska and land on a glacier. She wanted to go on a dog sled and cross a glacier. She wanted to move in a dog sled on a glacier that was moving on a planet that was moving in a solar system that was moving. We wanted to be moving in time and space, and we did it. Dr. Bob: That's wonderful. That's awesome. Debbie, at what point, at what point after the diagnosis, did the whole concept of medical aid in dying come into her awareness and start becoming a bit of a focus? Debbie Ziegler: For Brittany, her focus on aid and dying came much more quickly than anyone else in her family, because, at Berkeley, she had been in a psychology class where they had had a discussion about end-of-life options. Her class had heatedly argued about end-of-life options, and so Brittany had already thought about this, discussed it, and, quite frankly, been a participant in a conversation at a high level. As soon as she was told, and she did ask directly, none of her family could or would, because we were all in denial, she's the one that forced the conversation and said, "Is this brain tumor going to kill me? Is this a terminal brain tumor?" She was told, "Yes, it is terminal. At this point, until we have tested this cell structure, we don't know how long, but we do know this is what you will die of." As soon as they told her that, she began discussing end-of-life options. She did not know how long her life would be, but she did know that the tumor was going to take her life, and she knew enough from her science background of the course of action that a brain tumor takes that she knew she wanted to be looking into other options rather than just following a natural course. Dr. Bob: How fortuitous for her, not maybe fortuitous at all, but that she had had, been exposed to it. Debbie Ziegler: Yes. Dr. Bob: Not a lot of 28, 29-year-olds are- Debbie Ziegler: No. Dr. Bob: ... and so it could have been a very different process, and path had that not happened. Debbie Ziegler: The way she introduced the topic into conversation was, I think she was trying to spare us until she could discuss it with her parents, but she said to the doctor, "How can I get transferred into the Oregon medical system?" That, of course, to everyone in the room, seemed like an odd question, and in the back of my mind, because I am a science teacher and, of course, had read articles, I thought, "Oregon. Oh, my goodness. I know why she's talking about Oregon." I couldn't have told you the details, but I knew that it had to do with the right to die, and I knew what she was talking about the very first time she mentioned it. I knew where she was going. Within seconds, there were two people in the room. I'm sure the doctor knew what she was talking about, although he chose, at that moment in time, to not recognize it, to say, "Well, why would you want to do that? You're in a fine medical system here in California." It wasn't until days later that we had open conversations about why she was interested in Oregon. Of course, since that time, California has passed an End of Life Option bill. I feel that that is my daughter's legacy. I believe that it was her story of having to move out of California in order to die, in order to die peacefully, that touched a lot of hearts and made history in California. I smile when I think of our End of Life Option Act because, in my heart, it's Brittany's act. Dr. Bob: Well, it was Brittany's act, but she couldn't have done it without you. Right? You- Debbie Ziegler: She- Dr. Bob: You were her partner in that. Debbie Ziegler: She had help, and she had many, many...
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Understanding Palliative Care, Dr. Michael Fratkin Ep. 29
10/12/2018
Understanding Palliative Care, Dr. Michael Fratkin Ep. 29
Dr. Michael Fratkin founded ResolutionCare to insure capable and soulful care of everyone, everywhere as they approach the completion of life. Learn how telehealth applications are bringing a greater quality of living and dying to those in need. Contact Transcript Note: A Life and Death Conversation is produced for the ear. The optimal experience will come from listening to it. We provide the transcript as a way to easily navigate to a particular section and for those who would like to follow along using the text. We strongly encourage you to listen to the audio which allows you to hear the full emotional impact of the show. A combination of speech recognition software and human transcribers generates transcripts which may contain errors. The corresponding audio should be checked before quoting in print. Please note there is some content that is explicit in this episode. Dr. Bob: Dr. Michael Fratkin is the President and Founder of Resolution Care. Dr. Fratkin is a father, a husband, a brother, a son, a physician, and a very dear friend of mine. Dr. Fratkin is dedicated to the well-being of his community and the community of all human beings. Since completing his training, he's made his home and built his family in rural Northern California. He's served his community as a primary care physician in the community health system, as a medical director of the local hospice, as a leader in the community hospital medical staff, and has been a transformative voice for improving the experience for people facing the end of life. At a time of great demographic and cultural change in our society, Dr. Fratkin has created Resolution Care to ensure capable and soulful care of everyone, everywhere, as they approach the completion of their life. Resolution Care is leveraging partnerships with existing healthcare providers and payers to provide telehealth services that bring a greater quality of life and greater quality of dying. The palliative care team at Resolution Care openly shares their expertise and mentorship so that people can receive the care they need, where they live, and on their own terms. In this podcast interview, Dr. Fratkin shares his passion and his intimate experience as a provider of care. He's innovative; he's creative, he's dedicated beyond what I've experienced with just about anybody else who I've communicated with about palliative care and end-of-life care. I think you're gonna find this podcast to be incredibly informative and really interesting. Okay, Michael, thank you so much for taking time out of your day. I know you've got lots of irons in the fire and lots of people vying for your attention. So I really appreciate having time to connect with you. Yeah. You know, it's interesting. I always enjoy talking with you. We connect sporadically, not as much as either of us would probably want, but we have been pretty consistent in finding times to connect and catch each other up on what's happening with our lives and our different enterprises. And what's interesting is, after our conversations, I always think to myself, "I wish other people could have heard that. I wish other people had a chance to listen in and hear what we're developing, and sort of the passion that comes out in these conversations." They're so informative, for me, and I find it so inspiring to hear what you're doing and the service that you're providing and creating. So today we have that opportunity so that people are going to be able to listen in on our conversation. In the introduction, I shared a bit about what you're doing, who you are, but I'd like to have you just do a little synopsis of what Resolution Care is doing currently, where it started from its humble beginnings, and what your vision is for where this is heading. Dr. Fratkin: I'm a dad, I'm a husband, I'm a brother, I'm a son, I'm a whole lot of stuff. But I'm also what's called a palliative care doctor. And your group of listeners probably know a little bit about what that is, but the way that I describe it for people is that there are really three central elements. That number one, we don't take care of any patients. We support people as they find their way through serious illness. We support people with a team; we support their families. Our team includes nurses, doctors, social workers, chaplains, nurse practitioners, community health workers, and all the people that they don't necessarily see, but that are just as important to creating a container for our care, the back office, and operational people. So the first principle is, is that we are a person-centered, not a patient-centered, but a person-centered initiative. And that those persons, the reason I distinguish it ... It's not just the patients or their families, but the people providing the care that are centrally important to everything that we do. And then we build out from there. So the first thing is, we're a person-centered organization, using a team to accompany people with serious illness as they navigate it, right? Dr. Bob: I love it. Dr. Fratkin: So the second thing that we do is that we're really damn good at managing symptoms. Our team has quite a bag of tricks around the treatment of pain and nausea, breathlessness, and various other physical manifestations of illness. And we know how to use that bag of tricks. So symptom control is the second thing. And the third thing is, we help people and their families to navigate what is a completely dysfunctional, fucked up if you don't mind me saying so- Dr. Bob: Let's call that like it is. Dr. Fratkin: Of fragments and silos and conflicting interests, and stakes held. We help people navigate, somewhat, through the complications of their illness, but more so, we recognize that people are trying to make their way through a human experience, not a medical one. And so, we help them navigate through that, bringing the personhood that we are to accompany them with the wisdom, skills, and shortcuts and strategies that we know about navigating. So it's person-centered around the people we care for and us as well. We matter, too. It's impeccable symptom control, and it's navigational assistance. And really tough times of life in a really complicated health care system. So Resolution Care does that. And we use some technology tricks, video conferencing, all of our care is based in the home. And that's that. But I think I also wanna tell you about how I got here and why. Dr. Bob: Please do. Dr. Fratkin: So I came to far Northern California, Humboldt County, in 1996 and joined a community clinic environment as the only internist in a five-clinic system. And my job was to take on all the patient V patients and all the complicated conditions that provided kind of complex case management approach for the heavy hitters, the outliers, the hot spotters. They're called lots of things now, but they were just languishing without the attention they needed when I showed up in town. And for six years, I took the hardest cases in the system, and helped with diagnosis and treatment planning, and burned out rather quickly, because I didn't have a team. I then sort of shifted my attention to my deep connection with hospice work and became a hospice medical director, where I did have a team. But I also had a very constraining box around me, a structure of hospice defined by the Medicare benefit that was limiting our ability to do what made sense, rather than meeting all of the regulation and compliance that continues to accumulate in the hospice model of care. And I burned out again. And then, I did some hospital work. When I started, I was seeing 9-12 people in a day, and I really enjoyed being at the point of the sphere where people were sick enough to be hospitalized and to attend to them both with good medicine, as well as a respect, and frankly, love in the face of what they're going through. And that was great until they started to push me to see 15 or 18. And now, it's 22 patients in a 12-hour shift. And I burned out again. And all the while, paying attention to the rising credibility and relevance of the palliative care movement. So I became first certificated in 2000, and board-certified a few years after that, in palliative care. In 2007, I worked with the hospital to launch a guided care consultation service in the hospital. And as soon as I got started doing that, there was almost immediately, four or five times as many people as I could care for. And I wasn't able to scare up the resources in the hospital to build out a team. So for a period of years, I wrote business plans, I went to committee meetings, I tried to advocate for greater resources to do this good work correctly, and failed to do that. So in 2014, I had had it. Exasperated, fatigued, burned out, I guess for the fourth or fifth time. God knows I can't keep track. I was looking for a job. I figured I couldn't stay here in this beautiful community, because I couldn't figure out how to get a sustainable job with a team that builds capacity over time. And so, I looked for work. And as you know, Bob, a palliative care doctor these days doesn't have to go too far to get too many interviews. I had three interviews in three weeks in the Bay area, and on the way to the Bay area. And they offered me three jobs, quickly, were better resourced, better compensated, more controlled work hours, but none of them were where I lived, where I made my home, where my kids were born in my house. I live on this five-acre piece of redwood forest. My kids were born there. My dogs and cats are buried in the yard. And I didn't wanna leave. So come around spring of 2014, I started to think about maybe there's a way to build capacity, build a team, and share what I know to others so that they could make that work for the people they're caring for. And so, the three ideas were video conferencing, Project Echo, which we could talk about later, it's a telementoring structure that allows a specialist to share information to primary care providers, et cetera. We can talk about that later if you want. And then the third thing was crowdfunding. So in November 1st or 2nd in 2014, we launched an Indiegogo campaign and based on all of my relationships in the community and people's trust in my work, we were able to raise $140,000 in a little over a month. And in January 2015, myself and one other person walked into a donated office space and turned on the lights. Dr. Bob: What a great story, and a great confluence of ... And you being true to your vision, being true to yourself, to what you knew was the absolute right way to practice the ... And you took a risk, right? And you continue every day, taking a risk. I know it. We've had these conversations. I'm trying to remember when we first connected because I've watched this thing go from birth to flourishing. And flourishing may not mean the same thing to you that it does to me, because I know your vision is grander. Dr. Fratkin: Well I know where we met. We met around ... There's a group in San Diego of one old-timer, one mid-timer, but some folks that have been inspired for more comprehensive cancer care in the community for a long time. A fellow by the name of Dan Vicario and the dear, dear friend of mine. I call him my grand brother, Paul Brenner, a psychologist with a deep connection. A psychologist and physician with deep connections to really thoughtful and complete approach to people with serious illness. And it was through them that they connected me to you. Dr. Bob: Right. And I remember that part very clearly. And I've had the honor and the privilege of collaborating on patients with both of them. And it is really; it's magical to be part of that with all of their combined years of wisdom and their just beautiful energy. But I'm trying to remember the stage that you were at. It was probably early on, and- Dr. Fratkin: It was probably in 2015. And without getting too wonkish about enterprise development so that we can get to the topic at hand, 2015 was the year of getting rolling and getting the team. And we did that. By September, we had a nurse, a social worker, chaplain, and office staff, as well as a little bit of a head of steam, with a group of patients. 2016, we really started to grow. And 2017, we continued to grow and sort of learned how to be a business that was sustainable. And coming into 2018, I'll just tell you today, Resolution Care network is tending to about 164 people in their homes, from the Oregon border to the north, the Pacific Ocean to the west, all the way to the ... I guess it's the Idaho/Nevada border to the east, south, pretty much to the Bay area with a couple of other folks a little bit further south. We've got 29 employees. We have contracts with four health plans. And we're making an impact with this model of care that we're developing. Yeah. Dr. Bob: That's beautiful. And of those 164 current patients, how many of those are receiving physical ... Are you able to get to visit physically, versus doing it entirely through video conferencing? Dr. Fratkin: It's variable. The key element is, is we really do what makes sense. So if a person lives down the street, it makes sense just to drop in and see them and sit on their couch and eat their cookies and chat with them that way. If they live 150 miles away from HQ, we're much more likely to engage with them by video conference. And it's really ... That's kind of what we built into the model. It's a hybrid model, both boots-on-the-ground, face-to-face encounters, with teleconferencing or video conferencing. And we do that in a really nimble fashion so that there are some people who really can't wrap their head around it. And if they're close enough, we provide them with a more traditional home care model. We have people who are right down the street who are very comfortable, in fact, prefer not having somebody knock on the door and walk into their house, but prefer to control the framework of the encounter. And then, different specialties. For my fellow providers and me, we're probably in the 85-90% video conferencing channel. Our nurses are probably in the 50-60% of their direct encounters are done by video. Our community health workers, the other end of the polarity, do very little video conferencing, because that's kind of what their value proposition is, is to be right there in the home with time and engagement to suss out what's needed. Our community health workers extend the reach of our doctors, our nurses, our social workers, and our chaplains. And they're given a lot of room to figure out what makes sense for each person and their family. So it's a variable ratio of boots-on-the-ground to remote engagement. Dr. Bob: Right. And what's cool about it is each situation is unique, and it probably changes over time as well. And I think it's fascinating; the different disciplines have the option of doing it whichever way makes the most sense for the provider as well as for the patient and family. Dr. Fratkin: For sure. At an organizational level for organization people who might be listening, it makes such great sense to use the technologies to eliminate the inefficiencies of travel. What's interesting ... I think we've talked about this before, but when I started to do initial consultations with people, first encounters to carry the arc of ... Oh, there are 8 or 10 elements that I've gotten accustomed to, to feel complete within an initial encounter. When I did it in a clinic setting, or at home, it was a 90 to 120-minute encounter, easily, and really exhausting. But when I started doing those same initial encounters by video conferencing, over and over and over again, they came to a place of completion in about half the time. Dr. Bob: Why is that? Dr. Fratkin: I think it's because we are primates. I think that when you walk into a person's home, there's a whole lot of social primate behavior. There's a whole lot of framing that includes so much more than just the relational engagement, one-on-one, with another person. There's the environment; there's the space, there's how the person feels about inviting a person into their home. There's their level of attention to, let's say, housekeeping, or their level of anxiety about how much energy they have to do housekeeping. There are the dogs; there's the feeling like you're hosting a doctor in your home, or a social worker, whoever. There are the elements of ... If you're really, really sick, maybe you just didn't feel like taking a shower this morning, but the doctor's coming, so you have to put yourself through a whole preparation mode. All of those things are, frankly, in the way of a relationship of trust. They're complications. So I've come to accept that actually doing care virtually is better than real life. Dr. Bob: Fascinating. I find that fascinating, because I do some care, some visits remotely that way. The vast majority, 95+% of them are in patient's homes. So those social, primal, primate behaviors, to me, I find those really endearing. And I think it's almost like a friendship is developing at the same time as a doctor-patient relationship. But I'm not seeing the same volume as you, so I have the luxury of being able to do that at this stage of the game. Dr. Fratkin: I think that's true. I think there are some other things that are hidden in plain sight that relate to it. I'm sure you'll agree that one of the great challenges for hospice work, palliative care work, complex conditions, where people with huge loads of social challenges with sensitive, inspired, caring caregivers and healthcare professionals ... One of the greatest challenges to this work is learning about the nature of boundaries. It shows up in every hospice organization, every palliative care organization, in the hospital, where people get confused about where they begin and where the people that they're attending to begin, or where they begin and end. The I and Thou, to quote Martin Buber. That is very interesting and hard to teach. The way that most of us learn is that we screw it up. We get caught up with the other person's energies. We end up feeling we must keep them pleased. We don't necessarily ... Well, here's the teaching metaphor that I use. I'll see if I can create a visual of this for you and the listeners. Bob, do you remember way back when, in the dark ages, when you took Physics? Dr. Bob: Yes, vaguely. Dr. Fratkin: Vaguely. And do you remember studying the components of an electronic circuit? Dr. Bob: Even more vaguely. Dr. Fratkin: Okay. Things like resistors and transistors. Dr. Bob: Capacitors. Dr. Fratkin: Capacitors and stuff, right? Now, I bet you don't quite remember. Maybe you do. You're a smart guy. What a capacitor actually is. Do you remember what a capacitor is? Dr. Bob: In the interest of time, I'm gonna let you- Dr. Fratkin: That's good. Good call, Doc. A capacitor is this: it's two plates. Imagine tiny little squares. One of them's a positive, anode; the other is the cathode. I think that's right, a negative. And they sit inside of a circuit with a proximity to each other and a surface area. And the closer they are together, and the more surface area they have in association with each other, the higher the capacitance. Whatever the stuff of capacitance is that contributes to doing what's needed to an electronic circuit, which is way above my pay grade, is proportional to the surface area and the proximity. And I think that that's better than thinking about staying professionally or technically detached from the people we care for. What we've built is a system that constructs ... All I'm here to do is to give you the technically, medically best treatment. And I can't really allow myself to engage with the truth of what's going on for you as a human being, because that'll make my hands shake in the operating room. That'll make me not make the right choices on your behalf, or provide you with the right recommendations. And I think what that done is it's...
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A Life and Death Conversation, Dr. Bob Uslander Ep. 1
09/20/2018
A Life and Death Conversation, Dr. Bob Uslander Ep. 1
In this podcast, we talk about life, death and everything in between. We'll explore how to age more gracefully, have meaningful conversations, and what you can do now to ensure the best possible end-of-life experience for yourself and your loved ones. Let's become friendlier with death.
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Healing After A Loss, Ken Druck Ep. 3
09/20/2018
Healing After A Loss, Ken Druck Ep. 3
Dr. Ken Druck's work in personal transformation, male psychology, parenting, and grief literacy has awakened readers to their absolute best selves for almost four decades. In this episode, Dr. Druck and Dr. Bob talk about healing after a loss. Contact Transcript Dr. Bob: I'm here with a good friend of mine who I'm excited to have this conversation with. Ken Druck and I have had many conversations over the years, most of which end up being fairly deep and a lot of insights come out of them. I think we're just both in this space of really contemplating life as well as death just because of who we are and our experiences. I'm excited to have Ken share some of his insights. He'll do that in just a moment, but I'd like to introduce him to you. Ken's work in personal transformation, parenting, psychology, and the literacy of grief has really helped people become, I think, their best selves for almost 40 years now. When you look at Ken, you can't believe he's been doing this work for that long. He's the recipient of numerous awards including a Distinguished Contribution to Psychology, Visionary Leadership Award. He has really a lifetime of service to the community. He's recognized really as a lifeline to people all over the world, to individuals, families, and communities through his work, which includes the founding of the Jenna Druck Center to honor the life and spirit of his daughter, Jenna; and we'll talk a bit about Jenna and the foundation that he created. Ken really has kind of set a new standard of care and healing out of tragedies like 9/11, Columbine, Katrina, and Sandy Hook, and I look forward to having him talk a little bit about how those experiences have shaped his life and his perspective. Ken has recently come out with a new book called Courageous Aging: Your Best Years Ever Reimagined. In this book, Dr. Ken explores the fears, some of the myths and biases in our culture about aging, so it's a perfect setup here for this conversation. In the book, he also kind of debunks a lot of the myths and offers a path to help people immerse themselves in the wisdom that we've cultivated over the course of our lives. With that introduction, I would like to introduce and ask Ken to say hello. Dr. Ken Druck: Greetings, Bob. So good to be with you and in a conversation, in a life and death conversation. My goodness. What a wonderful forum you've created to be able to talk openly and safely about all these important issues that so directly improve the quality of our lives and the quality of our deaths. Dr. Bob: Yeah. Well, I appreciate that. The inspiration for this really comes from life, from just being in this space. You're the same way. You're having conversations with people, both personal and in your professional life. I think, like me, there are many times when you think, wow, if somebody else had been able to listen in on this conversation, how much value would they have received, how much insight into their own issues and their own struggles and their own sort of triumphs. The conversations I have with my patients, with their families, with people like you, I think are so valuable, and I don't want to keep it to ourselves, right? I feel compelled and pulled to really allow people in on these conversations, so thank you for being willing to join in. Dr. Ken Druck: Thank you for having me. Dr. Bob: Yeah, absolutely. In your introduction, I abbreviated it. There's so much more, and I think we're going to have a conversation that will last about 30 minutes. I know that the wealth of information that you have and the experiences and insights could go on for 30 hours or potentially 30 days. It's going to be a challenge, but we're going to try to keep this concise enough, and then probably have follow- up conversations as time goes on. I posed some questions to you in advance of our conversation, and I want to jump right in. I don't mince words, and I don't pull back. I just want to get this out there because I want this to be part of our conversation, and I want it to inform and infuse our conversation. What are your thoughts about death? Are you afraid of dying? Do you have fear about dying? When you think about death, what comes up for you? Dr. Ken Druck: Well, it's a great question that does go right to the core. For me, the fear or the feelings about death are a moving target. It's not as though you run a marathon and you cross the 26-mile line and it's done. I think things that happen over the seasons and the course of our lives ask us or challenge us or force us to confront how we feel about death, and I'm no different. The death of my daughter 21 years ago was an opportunity as well as a tragedy— the opportunity to face down my biggest fears of death. My daughter had died. I had to come face-to-face with that reality, starting with holding her body in my hands, in my arms, facing the idea that her life as we knew it had ended. I thought going all the way back to last year where my 92-year-old mother passed, and I had a chance to help her die. I think the things that happen that we react to or the losses we suffer effect and change and create opportunities for us to face down our biggest fears of death, to comes to terms with our life as it really is, life on its terms as it is, and to settle some of those fears. Now, are they going to be settled forever? Are we going to find peace or make peace and have peace forever and it's a done deal? No. Those concerns, those feelings, the sorrow, the love, the complex of emotions that come with dealing with death are going to bubble up and resurface. We want to make sure not just to wait for death to arrive or somebody we love to pass. We want to be proactive and take steps to get ahead of the pain curve, to get ahead of the fear curve. Dr. Bob: That's awesome. How do you do that? I know it might be hard just to distill it down into a sentence or two, but how do you get ahead of that? If there's somebody who maybe has fear because of an experience because maybe somebody in your family had a tragic death or a difficult death and, like many people, you live with this underlying anxiety or fear about this mystery and when is it going to happen and how painful is it going to be. How do you think people can get ahead of that? Dr. Ken Druck: Well, I boiled it down to what I call the five ideals of courageous living and how we face down the fear of death. I've got basically five things that I recommend. Number one, stay humble, find peace in your unknowingness because there’re sometimes in life where we just don't know, and we have to hold that unknowingness in gentle hands rather than trying to force and will it into knowingness. We're basically part of something so big that at times it's unfathomable. The true nature of the universe—where life comes from, where it goes when we die—is an unfolding mystery. All we have to do is look up at the stars to understand that. The second thing is to cultivate a calm mind that allows naturally arising fears and doubts to come and go and learn to breathe and release even those primordial fears. It's kind of a form of surrender, and we can learn how to make peace with life as it really is by summoning courage, by facing in. Third is to take the elephant out of the room by opening the lines of conversation, just as you and I are doing today by talking about death and discussing our thoughts and feelings with people we trust. Fourth, keeping the faith of whatever we believe in our heart to be true or what we wish to be true. It's okay to abide by a hoped-for narrative without knowing that it's 100% accurate or not. We don't have to know with complete certainty that oh, here's what it is, here's the program for death, I read it somewhere or somebody told me this is what it is, or this is my sense of it. It's okay to keep the faith, to have it be a gesture of faith, to believe whatever we believe in our heart is true. Lastly, it's also just fine to have faith in a divine truth without apology or justification. We can do that while respecting and honoring the rights of other people who have different views or different religion or different spiritual path that they're on and a different view of things. Those are the things that I believe we can do to cultivate a courageous attitude towards living and to face down the fear of death. Dr. Bob: That's beautiful, so really this is universal. I mean, it's regarding any fear or anything that might be challenging us or limiting us in our life, not specifically around a fear of death, but that seems to be a big one for a lot of people, right? Dr. Ken Druck: Yeah. You know, Bob. We've got these brilliant emotional systems. They're as sophisticated if not more so in some ways than all the other systems that sustain life. We have this emotional system, which gives us internal signals, radar signals, from inside of ourselves, right inside of our hearts, showing up as our emotions. When these feelings turn up, it's our job to learn how to manage them, to decipher them, to decode them, to understand them, and to utilize them as part of our radar, as part of our self management, and to use them to our advantage rather than oh, that's a negative feeling, I better shoot it. That's negative. We've been brainwashed into believing that there are negative feelings rather than understanding that some feelings that bubble up and surface are going to be sorrow, fear, anxiety, worry, frustration, that we need to read these feelings, not become prisoners to them, but to read them and to have them inform us about what action to take, to inform us that it's time to vent those feelings. We're not built to hold them in steel compartments inside of our bodies, but to vent them in a healthy and constructive way and to turn those feelings into something good. Dr. Bob: Yeah. I think that's powerful. I think people need to be given permission to feel, right? My sense is that so many people when they start to feel something that might be uncomfortable for them, and this is a pattern that develops over time, they feel something, they don't how to navigate that, they don't know how to manage it, and so they just choose not to feel it. They turn away from it. Dr. Ken Druck: They become flooded. Exactly. They become emotionally flooded. This is particularly true of us as guys. We learned at a very early age basic training as a male shows us that to feel is to fail. If you're feeling something unless it's anger because anger is a good. Dr. Bob: Yeah, that's acceptable. Dr. Ken Druck: If you're feeling something, it means you're not handling it, you're weak, you're dependent, you're less of a man. You're less of a guy if you're feeling something because sensitivity and emotionality are perceived as signs of weakness. We got to fess up. We got to suck it up and deal with those feelings. We shouldn't be feeling those things. We become self-denying, self-rejecting creatures. We push our feelings away to the point that we lose our radar. We lose contact with our own radar. When somebody says, "Hey, what are you feeling?" We don't know what they're talking about. What are you feeling? You mean, what am I thinking? No, what are you feeling? How is this working for you? You just got a diagnosis, a bad diagnosis. How are you doing with that? When it comes to some of the most challenging moments, the moments of truth in life, relationships and our health and how long we're going to be here in our living and dying process, those emotions are what gets us through. Those emotions are the very tools and knowing them, reading them, and processing those emotions keeps us alive every moment of whatever time we have rather than us beginning to die emotionally long before our time and disconnect from those people we love. Dr. Bob: Yes. I get it. I think most people who hear this will resonate to some degree with that but obviously, it's not easy, right? Dr. Ken Druck: No, not to summon courage. Just like every other work ethic, everything else, there are times that all of us can look back and count that we summoned more courage, newfound courage to face into becoming a mom or dad, face into taking a job or starting a career or going to college or, even as parents, letting our kids go to kindergarten or sending them off to college. We had to summon courage. We have to summon even greater courage to face into some of the fears and some of the issues that arise naturally in the second half of life, including facing into our own impermanence, the fact that life is a package deal, we don't get to live forever, at least not in this form, and we have to deal with that. How we summon that courage is clear. We do it the same way we've done it before. We face something. We talk openly about it. We air out. We don't try to do it all at once. We strengthen ourselves. We get ourselves into game shape and improve the condition we're in, our mental toughness by doing this, by talking about it, by taking moments of reflection, by summoning all of our abilities to comprehend, to surrender, to let go, and to arrive in the season of life that we're presently living rather than dragging the past around and regrets, remorse, unforgiveness, harsh criticism. Rather than dragging, we have to learn how to let that go. There's a whole university and school of thought about how to summon greater courage because it is a process that occurs over time that we can all plug into, and it's going to be different for every one of us. Dr. Bob: I feel like there's so much incredible value in what you've shared so far. I want to encourage people, the listeners, to go back and listen again. There's no way that anybody will be able to take in what's been shared here in one listen. I really especially, well, the whole thing—but I'd also like to kind of summarize because I think it's so critical. There are so many people who find themselves in this space of despair, of feeling like they can't climb out of that place, it's dark, it's pulling them in, and they don't know how they're going to do that, and to give them those tools to help people understand that even if they can't look at their own experience in the times when they've found the courage to look at others around them, to see that yes, people have been in this space before, and they have found a way out. I think that looking at the whole of human experience and finding examples of people in your own community or that can inspire you. Obviously, if you can find your own inner kind of compass and go back and identify those times of your own life, you'll hopefully connect with that. I see people who have just lost somebody or they're dealing with these terrible challenges from an illness or an injury, and they say, "I can't do this. I don't have the strength. I'm not going to make it. I can't get through this." I help them see, if possible, other people have done this. This experience is an experience that people have had for thousands or tens of thousands of years, and people get through it. It's not easy, it doesn't happen immediately, but you are part of this human race. You have the same inner strength and capacity as anybody else, but I want- Dr. Ken Druck: I like what you're saying. I want to add to that. Dr. Bob: Yeah, please. Dr. Ken Druck: Asking for help. Help is the least utilized four-letter word in the English language. Asking for help. When I think about all the people that I know that I've sent to you for help, you have been an inspiration. Sometimes we can't do this alone. It's okay to ask for help, to call in support, asking others how they did it, whether that's reading... I mean, I wrote the Courageous Aging book so that people would have something to refer to be able to see how others have done it, how other people have tried to run from some of these things and fail, and how other people have courageously learned to face into whatever they were dealing with. So reading a book, reading articles. I think also seeking inspiration. There's music that I play every day because without words it inspires me. It's music that comes from a source of inspiration that's coming through a great composer, so I listen to music. There are all kinds of ways of nourishing ourselves, whether it's music or great food or walking in nature. I think what you said before about remembering the past seasons of our lives where we had great courage and remembering I can do this, look what I did. I can do this. Lastly, it's surrendering at times. There are times where we're standing in a moment of inescapable sorrow or facing into unknowingness or feeling emptiness. Those are moments where it's okay to surrender into tears. It's okay to surrender to feelings of helplessness and powerlessness. Also, that surrender sometimes takes us into a sense of what's beyond this life— of what I call the great beyond, the enormity, to have a sense that we are joining. Wherever my daughter is, I'm going to be with her. Wherever she is or isn't, I'm going to be there. Wherever my ancestors, those who have gone before me are. And with those feelings, it's not only to make peace with ourselves, but it's to free up the next and final phase of our lives, which is paying it forward, paying the gratitude for the blessing that we've had, being given this life, being able to experience all the things that we sometimes take for granted. Being able to give our gratitude by paying it forward, planting a tree that we won't necessarily ever get to sit in the shade of, but that our children, our grandchildren, and future generations will be able to sit in the shade of that giving tree. That is one of the most important aspects of making peace and understanding that it's okay. Yes, it's scary. Yes, it's terrifying at times. Yes, it requires courage that I haven't had to summon before, but that I can do this, and I will go forward. This is the nature and the way of life. I don't get to play God, I don't get to live forever in the way that I know, and I surrender to it. Dr. Bob: It's no wonder why you are being asked to come and be with people who are experiencing tragic loss. You have such a gift of sharing that perspective, sharing the understanding of one who's been there and who has learned how to navigate it. I know that you would be the first person to admit that you're not finished with your growth and working through your sorrow that will never end, right? Dr. Ken Druck: It's okay. You know what, Bob, a mom once said it to me—she had lost her only son— and she told me after a couple of years I hadn't seen her. She said, "Ken, the most important thing I've learned is that it's okay that it's not okay." She said, "It's not okay. I reject the idea that my son had to die so young, that he didn't get to live out his life the way we had all planned. That was my dream, that was what I had put my heart and soul into. That was my future as well, and it's been lost to him. His life has been lost to him and to me and his father." She said, "But I've learned over time that it's okay that it's not okay. Some things in life aren't okay. I'm never going to accept that history as good." It sucked is what she said. "It just sucks that this is the way it is. This is the way it turned out. This is the way history will write it." She said, "But I also have found peace that this is the way of life. I'm not the only one who's suffered a loss of a child way before their time and had to face into the challenge of living out the rest of my life as an expression of love rather than despair. I accept that challenge and I've faced into it, and I'm learning how to live forward in my life and to make my life an expression of the love that never dies rather than to despair over the fact that my son died young." Dr. Bob: Conceptually it's powerful, but really in practicality, it is as well. I'm around, as you are as well, a lot of people who are...
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Why I'm Ending My Life, Bill Andrews Ep. 2
09/20/2018
Why I'm Ending My Life, Bill Andrews Ep. 2
Dr. Bob's patient, Bill Andrews had ALS and was terminally ill. Before Bill decided to exercise his right to die in California, he agreed to do this interview to help others understand the importance of the law and his decision. Transcript Dr. Bob: Hi everybody. I'm here today on the phone with a gentleman who I'm really interested in having everybody hear from and meet. It's kind of a unique opportunity on all counts to hear from a gentleman who has lived life very fully, really did a lot of things that many people only dream about doing in his life and before he was able to really see that life through, was afflicted by a disease that has no cure and is universally debilitating and in many cases fatal. He's become a patient and a friend and I've had an opportunity to really be amazed by his story and by his outlook and approach, both himself and his family. We only have a brief opportunity to hear from and learn from Bill because, well, you'll find out why in just a bit. I'd love to introduce William Bill Andrews. Bill, say hello to our listeners. Bill Andrews: Hello listeners. Dr. Bob: Thanks. Bill Andrews: This is Bill Andrews reporting in. Dr. Bob: Thank you, Bill. Thank you so much for being here. Bill, who's with you? You have a couple of your sons with you as well. Can we introduce them? Bill Andrews: Yes. I'm with my oldest son, Brian, and my youngest son, Chris. Dr. Bob: All right, and thank you guys for Bill Andrews: They can say hello, I guess. Brian: Hello. Dr. Bob: All righty. Sounds good. As I mentioned, Bill is a 73-year-old gentleman with ALS. Bill, how long have you had ALS? Bill Andrews: I'm going to say probably about—I'm going to guess about two years. Dr. Bob: Okay. Bill Andrews: I was diagnosed about what, a year and a half ago, Brian? Brian: One year ago. Bill Andrews: One year ago. Then it was very obvious that there was something seriously wrong. The precursor to this is I had broken my back. I used to motocross and do a lot of surfing and stuff and I had many, many ... I brought injuries into the ALS experience. Broken back. Oh, just all kinds of stuff, so when I finally couldn't deal with the kind of the day-to-day life of my current injuries and stuff, that's when I really got [inaudible 00:02:51 ALS because I couldn't stand up. I could barely walk. I was still trying to surf, like an idiot, but it became very difficult. Just a year and a half ago I was in Peru surfing. Dr. Bob: Wow, but you knew something was going on? You had already Bill Andrews: I knew something was going on. Dr. Bob: Okay. Bill Andrews: I knew something serious was going on. Dr. Bob: Then a year ago it was officially diagnosed and then what’s Bill Andrews: Correct. Dr. Bob: What are things like today? Bill Andrews: Horrible. I'm in bed. I get fed. I wear diapers. I'm kind of confined to my bed. We have a Hurley lift, I'm going to guess that thing is called. Dr. Bob: A Hoyer lift. Bill Andrews: Hoyer lift, and I just get into that and I have an electric wheelchair. Last weekend I was able to get out and see my kids play some sports and stuff, but that's about it. This is where I live now. At Silvergate, room 1-1-3 in my hospital bed. Dr. Bob: Wow, and a year and a half ago you were surfing in Peru? Bill Andrews: When was it? Brian: Yeah. It was a year and a half ago. Yeah. Yeah. Bill was surfing in Peru. Bill Andrews: But I knew there was something wrong, you know? I was struggling. Dr. Bob: Mm-hmm (affirmative). Bill Andrews: Really mightily. Dr. Bob: Yeah. As far as you are aware, and you've been dealing with this and obviously researching being treated. You've been in the system. Bill Andrews: Correct. Dr. Bob: Everybody, the best that medical care has to offer has been offered to you, I'm assuming. Bill Andrews: Correct. Dr. Bob: Here you are in this situation. What is your understanding of what will happen if things just are allowed to go on as they would normally? Bill Andrews: Well, as I understand it, I will not be able to swallow my food chew my food, swallow my food. Nor be able to breathe on my own, as I understand it. Dr. Bob: Right. Which is correct. I mean, the timeframe for those things is unclear. Bill Andrews: Right. Dr. Bob: Have the doctors given you any estimates? Bill Andrews: No. That's a moving target. No, they haven't. No. Uh-uh (negative). Dr. Bob: Okay, but that's inevitable for every person who has amyotrophic lateral sclerosis. Bill Andrews: I haven't heard of anything yet. I tell people, you know, I'd guess ... Because I have some friends that say, “Well, look, Bill, a cure may be right around the corner. You know, just stay in bed and they'll invent a cure and you're going to be fine." Well, that ain't going to happen. In my lifetime anyway. I don't want to go out with the tube in me and all that stuff. I feel at least now I'm reasonably good mentally and this is kind of where I'm at a good point right now. Spiritually, emotionally, physically. Dr. Bob: Great. Bill Andrews: That's where I am. Dr. Bob: That's where you are. Bill Andrews: Yep. Dr. Bob: What's your game plan? You want to talk about the strategy and what's been happening? Bill Andrews: Well, my game plan is—well, for the last couple of weeks I've been trying to wrap up a lot of little-unfinished tasks and chores that I wanted to complete, little projects, but I think they're doing just fine. I think my family ... I guess the big thing for me is that my family, that we're all on the same page. That to me was crucial. That we all understood what I was doing and why I was doing it and that this was all my choice. Looking at what the options are and for me, an option is not being confined to my bed the rest of my life and being kept alive. I don't want to be a Stephen Hawking, and another thing that I wanted to really pass on to my kids is that I'm not fighting the battle, I'm just kind of lying here. I'm getting taken care of. This ain't a bad ... You know, if you like getting taken care of, this ain't bad. I get my diapers changed, get fed, get dessert. People run errands for me, but the warriors are like my kids and the caregivers and the doctors like you are. You guys are the warriors. I'm just a ... You know, you're the warriors and right now I'm just kind of a settler. I just got to lie here but you guys are out there doing the battle. Dr. Bob: What an incredibly refreshing perspective to have. You know? You're not feeling like a victim like so many people justifiably do. You know, you're seeing it from so many different angles, not just your own. Not only through your own eyes, which is remarkable, I think. Bill Andrews: Oh, thank you. Well, yeah. About 30-something years ago I was diagnosed with a real, pretty bad case of malignant melanoma and I was only given a few months to live at that time. That was about 30-something years ago. My kids were there when I was diagnosed and everything, so I've already fought that battle. I had the tumor taken out of my arm. Had my lymph nodes excised. I fought that battle because I could see there's was a way to win that one, so there I kind of feel like I was a warrior, but here, ah, you guys are. Dr. Bob: Mm-hmm (affirmative). That battle, the melanoma battle, I've seen how that turns out in most cases, which is not the way it turned out for you. It was, at least back then - Bill Andrews: No, I was bad with the - Dr. Bob: You were well aware of that. I know. Bill Andrews: I was very, very lucky. Yeah, I was very lucky. In fact, kind of going a little off track, at the time I had it they were experimenting with BCG injections. Dr. Bob: Mm-hmm (affirmative). Bill Andrews: Up at UCLA. They were going to inject BCG in the initial site of the tumor for melanoma. Dr. Bob: Mm-hmm (affirmative). Bill Andrews: I sent my path report up to them and they rejected me because the path report looked so bad, that I probably was going to die. They didn't want that on the report. Dr. Bob: Wow. Bill Andrews: I kind of fought that one out anyway. Dr. Bob: Yeah. Bill Andrews: Flipped a little bit. Dr. Bob: You faced your mortality, right? You had no choice but to face your mortality at that point. Bill Andrews: Correct. Dr. Bob: You were what? Bill Andrews: Oh, there is no choice. Dr. Bob: Yeah. You were in your 40's? Bill Andrews: Yeah. Absolutely. Dr. Bob: With children that were young. Right? Bill Andrews: Right. Correct. Dr. Bob: Certainly not grown adults. Bill Andrews: They were there in the doctor's office with me, yeah. Dr. Bob: Yeah. Bill Andrews: Right. Dr. Bob: I think you were sort of alluding to this and assuming that, maybe assuming that some of the people out there who are listening know what we're talking about. But I don't think we actually discussed what the option is that you are taking to handle things the way that you feel best. Can you share a bit, share that? Bill Andrews: Sure. I, you know, kind of put a box on the board. I'll kind of equate this back to my melanoma. With the melanoma, I was given ... The doctors said, "Well, you kind of have three choices. 1: You do nothing because it appears to be fairly advanced melanoma and just see what happens. 2: You look for some miracle cure somewhere. Go to Haiti or somewhere and find a miracle cure. Or 3: Let conventional medicine dig in, and I took the third choice and I'm still here. With the ALS the choices seem to be kind of the same. I can just sit back here and wait until I can no longer breathe or eat. Or I can be kept alive by breathing tubes and feeding tubes and stuff. Or I can do with this choice that I'm making now, which is to go through the end of life in a peaceful happy way with ... I mean, I feel good about this, doctor, I really do. As long as my family's on board with me it's spectacular. I really don't think there's ... The choice for me, and this is easy, you know. This is the time and I'm not going to be kept alive. I watched a Stephen Hawking film on TV years ago and there was a lot of recrimination and stuff about, anger and stuff, by keeping him alive and I don't want that to happen with my family. Nor do I want it to cost eight trillion dollars to keep me alive. There’re factors that went into my decision. Dr. Bob: Many factors and the decision is still being made every day. Bill Andrews: Every day. Every single day, Doctor. Dr. Bob: Yeah. Bill Andrews: Yeah. Dr. Bob: For clarification, Bill is exercising his legal right in California to go through the end of life option act. To receive Aid in Dying, which means that he's made requests of his physician, who's me in this case, to prescribe a medication that will allow him to end his life if he chooses to take it on his terms at the time and place of his choosing. A second doctor who knows him well has concurred that Bill is of sound mind and has a condition that's terminal. Bill has submitted a written request saying basically the same thing. Four days from the date of this recording, Bill's plan is to get this prescription filled and take this medication with his family around him, his loved ones, and he will peacefully, quickly, and in a very dignified way, stop breathing and die. As I said, Bill's making this choice each day because there's no requirement. He doesn't need to take the medication. He can choose at any time not to, and it's just fascinating to be having a conversation with a man who has the presence of mind, the courage, the support from his family, and knows that there's a very good chance and in his mind an absolute chance, that his life will be ending in four days. I am completely honored and awed to be able to have this really frank conversation with you about what you're thinking and feeling and I remember our last conversation you just kind of blew me away when you told me that you're excited. This whole thing is in some way exciting to you. Are you still feeling that way? Bill Andrews: Oh, absolutely. No, this is a ... No. We're, you know we're ... You, I mean… It's great talking. Let me just kind of preface. You have this really kind way of speaking that most of my other doctors haven't had quite the effect on me that you have. Yeah, I'm enjoying this. I've kind of been a pioneer in a lot of things and this is just ... I'm really enjoying this and let me tell you, Doctor, the thing that's the most incredible thing to me, and this is more of a, really a spiritual and emotional thing, is being able to choose when you're going to die. I've always thought if I were to die the most noble way, for me, would be to be protecting my family, my loved ones, or even a dog in the street or something. If I were going to die, would be doing, I guess maybe doing good, but you never know when it's going to hit, but with this, I get to say the goodbyes. I get to do whatever unfinished business. I get to finish any unfinished business and it's unreal, kind of. Very interesting. I think this can do a lot of good. I was telling somebody this morning that if one were suicidal, the worst way to end one's life would be by suicide by cop or something. Where you actually in one's selfishness at ending your life, you end others. Dr. Bob: Mm-hmm (affirmative). Bill Andrews: Where I think that's horrible and I have friends who have done that, but for this, you know, I'm choosing the time. I'm choosing the place. I'm choosing the environment. I'm choosing the company and for me, this is by far, I can't think of anything better. I've almost drowned a couple of times. I've been in car accidents and all that but this is almost soothing. I hope it really works in the way that it's been intended to work and doesn't get prostituted or something in some way that it goes off track. Dr. Bob: You mean the whole idea of the ability to support people in this way with terminal illnesses and the physician aid in dying? You're worried that it could somehow get off track? Bill Andrews: I hope it doesn't is what I'm saying. Dr. Bob: Yeah. Well, there's a lot of protections in there and if I have anything to say about it, it won't. There's enough. You know? Bill Andrews: Yep. Yeah. Well, I know. That's why you know, you guys at the beginning are the ones that are going to chart the course and that's I think, really, really important. Dr. Bob: Yeah, and I think it's important for people to consider, to understand that this is so far away from suicide. When I hear the word physician-assisted suicide I understand Bill Andrews: Yeah. Dr. Bob: It irks me because I think that there's nothing remotely like the suicide that most people think about, which is to end, you know, your life because of some emotional suffering or situation that you're in. People who are using this option, like you, are dying. I mean, you would choose. I'm sure that you would give anything, anything, to be able to not be in that position. Right? In which case you would be— the furthest thing from your mind would be taking a medication and ending your life. Bill Andrews: Absolutely. That's absolutely true and I know sometimes I throw the word suicide out and that's only because maybe because it's simple to say that word but I certainly like your definition a heck of a lot better than mine. Dr. Bob: I guess I took that opportunity just to insert my bias on that. Bill Andrews: Well, I agree. I think you're absolutely not. Dr. Bob: This is your experience and you can think about it or talk about it Bill Andrews: Right. Dr. Bob: Any way you want. Bill Andrews: Yeah. Dr. Bob: Bill, I have the advantage of having a little bit more knowledge of your background and who you are and I think this whole conversation becomes more poignant when people have a sense of what you've done. Could you share a little bit about your background? Bill Andrews: Oh boy. How much time do we have? Dr. Bob: Let's do the Reader's Digest version. Bill Andrews: Well, we'll do a real quick one, yeah. My grandfather's a general in the army. The Air Force. My father was in the military. I was born in Chicago. We moved to California in the '50s and eventually, my family ended up in La Jolla. I grew up right across the street surfing and enjoying the ocean at La Jolla Shores. Graduated from La Jolla High School. Got a scholarship to the University of New Mexico as the United States was preparing for Vietnam. I didn't do real well with that experience with the military side of my education. Anyway, I kind of did an odd thing. I just worked. I have a very broad, broad work history. Not very deep. I know a little bit about a lot of stuff. I've done engineering. I've done clothing manufacturing. I've made garments overseas. I did some advertising programs for Pepsi-Cola. I was on the cover of Surfer magazine if that makes any big deal. I used to motocross motorcycles. I used to race motorcycles. An avid sportsman, fishing. Loved education so this is why this program that you're doing is so fascinating to me. I'm absolutely enjoying every second of watching this go through the process. Raised three beautiful children. Actually, their mother did a much better job at raising them than I did. I just love learning about this and I am so thankful that we've progressed to a state where we can talk about these things. Dr. Bob: Yeah. Bill Andrews: You know, maybe my kids have a one- sentence thing they can say. Not something too bad. Dr. Bob: I would love to get a little bit of the insight from them if they're willing. No pressure though. Brian: Hello, this is Brian and just—my dad's always been a real go-getter in life and wants us to be the very best we can be and always wanting us to be improving and really to be exceptional. Of course, it's been very difficult to watch him go from a very active person and suffering through the loss of being able to use his body. Back on that comment about the suicide, I'm finding a lot of comfort from knowing that you know the cause of death is ALS and that we're able to make this choice. The aid in dying is just fabulous for us that this was passed in California and we're getting the help to do this and your guidance. It's either, you know, going to be that path or watching him really suffer and go through a long and much more difficult process, having a result in a very short time from now that we get to avoid with this. Dr. Bob: Yeah. Brian: Feeling very fortunate and very proud of my dad and very thankful we have this choice. Dr. Bob: Wonderful and I have to tell you, you know, that giving him the gift of supporting him is incredibly powerful. I've had the opportunity to be with many of the family members. The children, the spouses, parents of people who have done the end- of- life option and they are all so at peace knowing that they gave that gift and it didn't always start out— they didn't start out feeling supportive or comfortable with it by any stretch of the imagination but having come through that together, recognizing how desperately important it is to the person who's dying to have that support and to have people with them at the time, you get to go on the rest of your life knowing that you gave that ultimate and last gift. Brian: Yeah. Yeah. Dr. Bob: Good for you and thank you. This might be helpful for people. When your dad first—and Chris, if you want to chime in too—When your dad first approached this with you, what was your initial reaction? Do you remember? Brian: Well we actually brought this forward ourselves in working with him. We were looking at researching ALS and talking about what we wanted to do in the time ahead from diagnosis and we decided we were going to really come together as a family and we took a great trip together, a road trip, and we spent a lot of time together and had a lot of great conversations. Dad's friends from surfing—he's got hundreds of friends— threw him an amazing party. It was a celebration of life while he was here and that's the way Dad wanted to do that versus waiting until he was gone and having a big...
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A Nurse's Personal Story About End-Of-Life, Jillian Alexander Ep. 4
09/20/2018
A Nurse's Personal Story About End-Of-Life, Jillian Alexander Ep. 4
A long-time nurse shares her personal story about her father's end-of-life experience. Hear what the aid-in-dying process was like for her and her family. Transcript Dr. Bob: The person I'm going to introduce you to today and have a conversation with is a woman who I haven't known very long but in the short time that we have known each other we've become very close friends and co-creators on this journey around exploring how to make the best out of life and helping to support people through complex illnesses and approaching the end of life. Her name is Jillian Alexander and I'm just going to tell you a little bit about Jillian and then I'm going to turn it over and let Jillian tell you more about herself. I think it'll be a fascinating discussion. Jillian has an amount of experience both from a professional standpoint and from a personal standpoint. We've had many conversations and I'm excited to introduce her to you. Before I go on and talk a little bit more about you, Jillian, why don't you just say hello? Jillian: Hello Dr. Bob, nice to talk to you. Dr. Bob: It's wonderful. Thank you so much for taking time to be with me. Jillian is a nurse, she's a registered nurse and has been for 35 years though if you look at her you would think that she actually finished nursing school when she was eight, so it's hard to believe that. She's been a registered nurse and has worked in both pediatric intensive care units and neonatal intensive care units, so a lot of her clinical work has been in the pediatric setting. In 2012, she completed a Master's of Science in nursing and she specialized in education. Now, she's doing a lot of educating of other nurses in obstetrics and pediatrics. Her personal experience with supporting people has been like many of us in the healthcare profession, we take care of anybody who asks us to and especially family members. Eight years ago Jillian's sister, Lauren, her younger sister was diagnosed with ovarian cancer and at that point Jillian took a leave from her job and spent three months with her sister when she underwent surgery with a port placed in her abdominal cavity so that they could administer chemotherapy directly into the area where the cancer was. She went to all of her sister's treatments and after that, her sister actually did really well, Lauren did well and had five years during which time she was in remission. But in 2014 the ovarian cancer returned and they started together as a family looking at treatment options, doing a lot of research, looking into clinical trials, traveling. Lauren was blessed to have fairly extensive resources available to her so she was really able to find the best care that was available at the time. Despite that, the cancer continued to spread and in 2016 it became apparent that the treatments were not effective, she was getting extremely weak, and having issues with bowel obstructions. That’s about the time that I was brought into the picture, so this was late in 2016. Jillian continued to live in the San Diego area, taking an extensive leave from her career, from the family that she had out there, and was an amazing advocate for her sister, to try to give her the best possible quality of life and support during what she knew to be the final phase of Lauren's life. Lauren passed away, I believe it was in January 2017, is that correct? Jillian: Correct. Dr. Bob: It was truly an incredible experience to be a) working that closely with Lauren and support her, but I was completely blown away and amazed by the level of commitment that Jillian showed by her sensitivity. We created something almost like a little hospital/hospice setting and we were able to give Lauren a very beautiful and very supportive environment for the final weeks, months of her life. Since that time Jillian’s her life has taken a completely different turn and I'm going to turn it over now and I'm going to allow Jillian to talk a little bit about what that experience was like and what's happened in her life since then. Jillian, a) thank you for being my friend, b) thank you for what you bring to people, and c) let's hear what's been happening for you. Jillian: Thank you, Dr. Bob. That was really sweet. The first thing I really want to say is that, even though I had been a nurse for 35 years, I really didn't know what to do to help my sister. She was so ill, she had a couple of extensive stays in the hospital where they would do another CAT scan and ended up putting a port into her lungs because they had to drain fluid from her lungs every day so she could breathe. I was really struggling to find her palliative care. I didn't really know exactly what it was and my sister was a real fighter. She didn't want to hear and she would say, "I hope they don't give me my hospice card this time." The “H” word was a bad word and so I didn't know what to do because outside of hospice how do I find someone to help me? I started searching and I had a friend, who happens to be a palliative care physician, who said, "They have to have palliative care, ask them." I started asking her oncologist to get me palliative care and they set me up for an appointment. But it was three weeks away and my sister was so sick, and I didn't know what to do to help her because she couldn't be at home in her condition without, like Bob said, a hospital type room in her home. I wanted her to be at home and she wanted to be at home. When they gave me Dr. Bob's phone number and I had the first conversation with him, I knew right away I had found the right person. I can't explain how desperate I was and how many dead ends I was facing when I tried to advocate for my sister even something as simple as helping control her pain. Because she had a bowel obstruction, she couldn't take medicine by mouth, and I knew that a fentanyl patch would help her, but the oncologist said she had to be in hospice to get a fentanyl patch. I said, "Well, why?" I couldn't get her the help. When I finally met Dr. Bob, within 24 hours we had her at home, on a fentanyl patch, with IV medication to control her pain when that didn't work, and everything we needed to keep her comfortable. Every medication and it changed everything from this aura of suffering and fear to there's somebody here that's going to help us go through the next phase of our journey. Finally, someone ... Honestly, Dr. Bob, you were the first one who said to my sister, "You're too sick to have treatment. Maybe if you get stronger,…” because she just wanted treatment, treatment, treatment, and nobody said that to her. Nobody said you can't have treatment; it was a relief to stop trying to find treatment somewhere. She was ready to go to Mexico and try anything she could because, like you said, she had the resources and the fight in her to try to stay alive. But you can't always win. Sometimes you're going to cause more suffering than you need to and that's where you helped us to make a bridge, so to speak, for that next experience, and made it palatable, and made her understand and accept what was going to happen. Dr. Bob: Jillian: It really was beautiful. Dr. Bob: From my perspective, I didn't know her that well, and we just met, and it was a really challenging. It was challenging on many levels but, knowing what a fighter she was and hearing from everybody and her husband who would not hear anything other than full charge, whatever it takes we're going to do it and we were not going to quit. I don't think we mentioned how old she was at the time. She was very young, she was 53, is that- Jillian: Mm-hmm (affirmative). Dr. Bob: I knew that she wasn't ready to just throw in the towel, but I think as we discussed the best approach we had to keep hope alive for her that there was a possibility that she could resume treatment at some time so we never ... I wouldn't say no treatment is going to help you. It was really no treatment is going to help you right now and it's likely to harm you. Now, the focus is on finding a way to be comfortable, to build yourself back up if that is possible, and we'll do everything we can to keep that possibility open. She was incredible. She had a naturopath coming in, she was getting infusions of amino acids and other types of supplements that would be beneficial. She had a masseuse coming in and helping to keep her muscles relaxed and she had a team. You were a major part of building this team, but I think what you are lacking and what I was able to come in and provide was a leader of the team, a captain of the ship, to help coordinate all the things that needed to be put in place and keep you and the family from being so incredibly overwhelmed. It was a gift for me and you stepped up like nobody I've ever seen. An incredible champion for her in an incredibly complicated environment. You were my teacher as well and I think. Jillian: I think what I would say about that is sometimes you have to meet patients where they are. It's not about you; it's about the patient and, even though I would've dealt with it differently because I know so much and I knew what was happening, we really tried to meet her where she was. She knew she was dying; she would say little things like, "I don't want a funeral,”—just blurt it out all of a sudden—or other things that she would want to happen if she died. She told me her dying wishes for her siblings and family members, but she didn't want to accept it and actually was taking a medication up until two days before she died that was maybe going to help her. I supported her in that too because I felt it was her journey and her decision to try as hard as she felt she wanted to try. Dr. Bob: Yeah, and she wasn't doing it for herself. She was doing it for her family because she had children, the youngest of which was 12, and leaving him was the main thing that was causing her so much angst. We weighed that when we looked at the pros and cons of that medication. We all came together and we felt like, well, this is a medicine that's probably not going to cause much harm. It's unlikely to provide many benefits, but emotionally, psychologically there was value in it for her. Jillian: Right. I actually felt like the medication might cause her harm but that it was still her decision to try to take it if she wanted. Dr. Bob: If it's okay to mention—one of her wishes, before she died, was to see you married, right? Jillian: Mm-hmm (affirmative). Dr. Bob: This was a pretty special moment because ... Is it okay if we share that? Jillian: Yes. Dr. Bob: Jillian had been divorced for some time and she had a man in her life who she was anticipating marrying at some point, but Lauren, she wanted to see her sister married and she didn't want to miss that. Literally a week before she died, she coordinated the family to come together at the home and was able to see Jillian and her husband share their vows and get married, which was just an incredibly beautiful experience and I was honored to be part of it. Jillian: You were the minister. You said, "And the power invested in me by Lauren," but she had been so sick I didn't know if she was going to be well enough to be participating. But she had this rejuvenation and had more energy than I'd seen her have in probably two weeks. Stayed up for four hours, and had a smile on her face all night, and was so happy. I'm not really sure why that was so, so important to her. I think she wanted my family, my mother, my siblings, my children to love my husband as much as she had come to love him. I think she wanted them to accept him and I think she wanted to thank him because he also had come to San Diego and was doing whatever she needed because that's the kind of person he is and she had just fallen in love with him. It was really amazing. It was New Year's Eve and I remember saying to her, "Why don't you want a normal dying wish? Like having Bon Jovi come to your house or something?" I was a little uncomfortable with all of the attention but it really was a beautiful night and I think any of us who were there will never forget how special it was. Dr. Bob: That's for sure. I will never forget it. She did, she rallied, and she was beautiful and radiant, and it was, I think this final celebration that she was able to create and make incredibly meaningful. Then she, like we said, she died less than a week later. You were with her there, supporting her in her last moments. Let's talk a little bit about what's happened for you since that time. Out of this tragedy that was able to ultimately be a beautiful and peaceful end-of-life experience, what's happened for you since then? Jillian: After that happened I think that what came together for me was the challenge of finding you and finding a way to give my sister a peaceful death at home. It started to really bother me that people were dying in hospitals and ICUs, and families were being asked silly questions like, "Do you want us to do everything with your 85-year-old mother who has pneumonia," and people were dying on ventilators. It really started bothering me that we weren't allowing people to be at home. I did a lot of reading and I thought, "I think that this is really what I want to do. I want to help people at the end of their life," because being at the end of your life and having a peaceful death and exit from life is as important as being born, which is where I practice on the other end of my spectrum. I do obstetric clinicals and I take nursing students to see deliveries of new babies. I feel like entering the world and exiting the world are both equally important and we are not doing a good job at helping people exit the world because our education with nurses and doctors is focused on not letting people die and keeping people alive rather than the inevitable. Since everybody's going to die, we need to spend a little time thinking about how that should happen and how we might want it to happen for ourselves. I'm getting my advanced practice degree in palliative care and that's what I really want to focus my career on because it's so important. I'm trying to get it embedded into nursing curriculums so that nurses learn about palliative care and how to get those resources at the end of life and don't have to feel so alone the way that I did when my sister was so sick. Dr. Bob: I think that's so beautiful and I know that Lauren is proud that her experience has motivated you to follow this passion, to follow this guidance, and put yourself in a position to be able to truly help people who are so desperate for the kind of support that you're talking about. I'm thrilled that someone like you —because I've seen your dedication, a senior level of commitment—is going to be entering this field to be furthering the mission and furthering their education of the next wave, the next generation of nurses and doctors. Good on you. Jillian: Thank you. Dr. Bob: You shared with me you have some other personal experience prior to what you went through with Lauren and I wanted to just ask you if you would share it. because I think it was a poignant story and it brings up a lot of the issues that we're still facing in most of the country with respect to helping to honor people's wishes at the end of life. There are now a few states including California that allow physician aid in dying for people who are competent and terminal, but the majority of the country is still without that support and the laws that allow that. You shared with me a bit about an experience with your father that highlights the challenges that come when somebody knows that they're dying and doesn't want to allow the condition to decimate their body and take them down the way that it usually does. Can you share a little bit about that experience with your father? Jillian: Sure. In 2000 my father was 71-years-old and I was living on the East Coast. He was living in California and he got sick, really sick and he was told that he had some type of problem with his liver but that he could get a liver transplant. My dad told me, "I think I'm going to be okay but I might need a liver transplant." The liver transplant is a huge operation especially for someone who's 71 years old. I hadn't seen him but was planning to go see him and my mom called and said, "He's so sick; I need you to come home right now." She was really freaked out and so I flew home that night and when I saw my dad he was extremely jaundiced and I knew he was sick. It was a Friday night that I got home and I was just really shocked. He had lost maybe 15 pounds in a couple of months since I'd seen him. His skin was bright he was weak. He had a lot of his medical records there, and I started reading them on Saturday. I thought, "Oh my gosh!” He had a very elevated liver tumor marker, alpha-fetoprotein levels. Back then, Web MD was a little bit newer and Dr. G. wasn't as advanced as he is now, but I could tell that it looked like my dad had liver cancer and so I decided that we needed to take him to UCLA where he was being treated. I called to get him admitted through a friend of mine that worked there. She said, "Sure. Come on in." I was getting my dad ready to go and she called me back and said the liver surgeon on call wanted to talk to me. I said, "Absolutely," and when I talked to him he said, "Your dad has hepatic cellular cancer," which is liver cancer, which is really bad. I knew it was really bad but I didn't know how bad. I said, "Well, what are we going to do? How can we treat it?" Imagining my dad was going to get chemotherapy or whatever they do for these bad cancers. But he said, "There's really nothing we can do and I don't really think your dad will even live for two weeks." I was shocked and I said, "What are you talking about?" That's a whole long story, but the point is that we stayed in town, my dad had a liver biopsy, and we found out that he, in fact, did have liver cancer. When I found out my dad had liver cancer from the doctor at UCLA it was a Sunday and it happened to be Father's Day but the doctor told me my dad only had 10 days to two weeks to live and I thought, Well, I have to tell my dad right away. He hardly has any time left if this doctor is right and he deserves to know.” On Father's Day, I told my dad I had bad news for him and it looked like he had liver cancer and there wasn't anything they could do to treat it. My dad got the biopsy and when he saw that valid and true he was so brave and he said, “Well, Jillian, not very many people get to know when they're going to die and how they're going to die.” He privately told me, "I don't want to be alive in a coma for five or six days. Will you help me?" He was too weak and too tired to do it himself. He asked me to help him get a lethal dose of medication so that he could take it when the time was right. He said, "I don't want you to feel guilty and if you don't want to do it I understand." Of course, I wanted to do it, it was my dad. I would feel the same way, but in 2000 this was not legal in California so I talked to an oncologist and I found out what he told me would be a lethal dose of an opiate and basically an anti-seizure medication. He told me how it would work. I discussed it with my dad, we got the medication in an elixir form, and it was about two ounces, and we put it in an unlabeled container vial by his bed. I didn't feel bad about it at all. I just wanted to make sure that my dad would know when to take it or that he wouldn't suffer, that I wouldn't have to make those decisions, and he kept telling me, "Don't worry, I'll know when to take it." One morning when I woke up he had been really sick the night before and every morning I would open the door and see if the medicine was there, open the drawer and see if the medicine was there. One morning when I...
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From Attempted Suicide to Intentional Living, Diane Forster Ep. 5
09/20/2018
From Attempted Suicide to Intentional Living, Diane Forster Ep. 5
Diane Forster is an Intentional Living Expert and author of "I Have Today". Diane talks about her attempted suicide, how she changed her life and is now helping others. Hear what helped turn her life around. Contact Transcript Dr. Bob: I'm here with my guest, Diane Forster, and I'm really excited about having this conversation with Diane. She's an incredibly dynamic woman. I was only recently introduced to Diane through a mutual friend, and this friend somehow knew that Diane and I were kind of kindred spirits and would hit it off and have a lot in common, and I'm excited about where this friendship is going, and I just immediately felt that Diane would be somebody who our listeners would really like to hear from. She has a very interesting story. She's made quite a dramatic shift in her life that was inspired by things that she'll be willing and happy to share with you. Diane, she calls herself an intentional living expert, and she's a coach, mentor, and facilitates masterminds. She is very well educated and trained in NLP and human interaction technology. She works with clients privately in their professional and personal goals, has really helped transform many lives, and it really comes from having hard her own transformation in her life. She's an author, a best-selling author of a book called I Have Today, Find Your Passion, Purpose and Smile Finally, and is the founder of I Have Today, which really focuses on helping women living more empowered, fulfilling lives. Interestingly, Diane's also an inventor, and I will let her share more about how that has happened and what being an inventor has brought to her life and means to her. So Diane, thank you so much for being here. I'm really looking forward to this conversation. Diane Forster: Thank you so much, Bob. Thank you for having me. I'm honored to be here, and I feel the same way, kindred spirits immediately. Dr. Bob: So, we're talking about life and death. As you know, my focus is on ... I mean, I think we have a lot of alignment. My focus is on helping people live a more peaceful and meaningful life in the face of challenges. I didn't necessarily come to this calling, or I didn't find it, it didn't find me for a while, but once it did, it's been driving me, inspiring me, pretty much every moment of my life, and it's about having a meaningful life, and it's about having a peaceful and self-determined end of life. So, you ... In our initial meeting, you really kind of blew me away with where you came from and what you were experiencing and where you are now. So, would you be willing to share a little bit about that? Diane Forster: Of course. I'm happy to. You know when I was in my late 20's, I got married, and I married a man that, we weren't really in love with each other, but we loved each other, and it just seemed like the timing to ... It was the time of life to do that, and I grew up with a mom and a dad who really, didn't really love each other ... Weren't in love with each other, but did love each other. Let me say that better. And so I never really witnessed any real romantic, intimate connection between the two of them, so I grew up thinking that's what marriage looked like. So, of course, I attracted a man into my life who was similar, and while we had a deep love for each other in some ways, we didn't have that connection, and I struggled in that marriage for many, many years, trying to make it work. And what was happening to me is I just didn't want to walk away. I didn't want to be a failure. I didn't want to give up on it. I thought I could make it work, and it just was not working, and my soul and spirit were chipping away, day after day, month after month, year after year until many years into it, almost 20 years into it, I just couldn't take it anymore, and one night, in June of 2011, I attempted to take my life. I just thought I can't feel this pain and loneliness anymore. And so what happened to me in the bathroom that night, was I had two full bottles of pills in my hand, and I was ready to end it all, and they got knocked out of my hand, and the voice that I heard told me, "You are not ending your life this way, Diane. You need to go get help. You need to tell your story because you need to help others." And being a very intuitive person, I just threw my hands up and said, "Well, you need to show me the way." And so, that was a pivotal moment in my life, and that lowest, lowest point for me was the thing that needed to happen for me to catapult me out of that state and out of that place in my life and really reach out for help. And so I did the next day and reached out to a therapist, and I said, "I need your help. I need to change my life." And so it took about six more months to get out of that relationship, but when I did, after a brief grief period, I went into a deep introspection and personal development and spiritual awakening and ownership of my part of that relationship not working and where I was in my life at that moment, the condition of my life, and I decided in that moment, I want an extraordinary life. I don't want to live this way, and so I really delved deep into everything that I could get my hands on to read and to watch and to attend and listen to, and what was happening to me, Bob, was I really starting to heal in a very profound way and live in a very different way than I had been living before. I was alive. I was awake. My spirit was nurtured and felt loved and what it was that I came to was I had no self love. I had such low self-esteem and low self love for myself, and I developed it in this process. I started writing a lot. Getting all these downloads, and so I would get this hits of inspiration in the middle of the night, and I would write poetry stories, and one night, in August of 2013, I woke up with a poem I Have Today in my head, and so I got up. I wrote it down right away, and it was I have today to love and be loved. I have today to start fresh anew, and it went on and on and on, and when I finished the poem, I looked at it, and I said, "This is way more than a poem. This is a movement. This is what God was talking to me about that night in the bathroom in June of 2011." And that's the moment that the idea of I Have Today was birthed where I really wanted to help and support mostly women because I knew so many women were feeling the same way I was, and I see this every day, so that was really where I started back in June of 2011 and where I am fast-forward to today. I'm now living a life that I've completely manifested, and I've completely reinvented myself, and am living the life of my dreams really intentional and purposeful every single day, and now I help others to do the same thing. Dr. Bob: Wow. I don't know that there's really another word that would actually be appropriate right now, but wow. I mean, you shared this with me the first time we met, and I remember having this feeling, the same feeling, but I'd forgotten part of that story, and it just kind of came back to me powerfully. So number one. Good for you. Phenomenal how beautiful that you went from this place of despair where you were really on the brink of death to where you are now, and not just having sort of reinvented yourself and found your own bliss, but taking that experience and taking that incredible pain that you were going through and using that to fuel the career that has now, I'm sure, been able to inspire and support many, many other people in finding their path out of that. Diane Forster: Yes. Dr. Bob: And not just taking people who are in despair and considering suicide, but taking people who are living an average life or what they feel is a mediocre life and being able to decide that they're going to have an extraordinary life too. Diane Forster: You said the magic word. It's a decision, and it is a choice, and it takes a lot of help. It takes a lot of support, but yes, it is something that you really have to decide for yourself, how do you want to live every day? How do you want to feel every day? And so along my path with it, I've developed a lot of different processes, a lot of three-step processes that I've made it easy for me to catch myself when I'm not living in the present moment and to help and support me on this journey to keep that positive momentum going every single day, moving it forward, feeling alive, feeling fulfilled, feeling the expansion and the growth and all of that. For me, I could've never imaged that my life would've taken the turn that it's taken, but I feel such fulfillment and joy every day helping and serving others to help them create the life of their dreams. Dr. Bob: Yeah. Well, so we were so aligned there, and what's interesting as well is that our journeys have been parallel. I don't remember ever being at that place of despair. I've been married for going on 30 years, and I love my wife more today than I did when we first got married, and I feel very incredibly blessed. It hasn't always been easy. I would be lying if I said that there haven't been challenges and struggles along the way, so I haven't had to deal with that, but I've had career burnout and stress and of course, my own struggles, and in 2011, is when I decided that I'd had enough of the life that I was living and settling for and decided that I needed more, and that's when I got inspired and started doing a lot of soul searching and a lot of reading and a lot of self development and became more spiritual and started on this journey, which has led me to the place where I am now. And then you mentioned August of 2013 as a ... What happened on August 13, remind me? Diane Forster: That was the birth of "I Have Today" when I wrote the poem. Dr. Bob: Okay. That's when you woke up with that poem. So, in April of 2013, just a couple months before that, I had my epiphany where I became very clear that I'm here to help people die, and from that moment on, providence has opened up incredible opportunities and allowed me to then take who I've become and what I've learned to be in this place of supporting people through complex and terminal illnesses. We are working in a different model in many cases with different people, but I feel like we've both received something so meaningful and deep that has allowed us to live with this ... To live on purpose. Diane Forster: Yes, yes. Dr. Bob: To live on purpose. To have recognized that we're here for something bigger and that we just put ourselves into it, learn what we can, and become vessels for people to have the kind of life that they desire and ultimately the kind of death that they wish for. Diane Forster: Yeah. That's beautiful. Really beautiful. Dr. Bob: So, thank you so much for sharing that, and I know I still have stills. I don't know ... When I get goosebumps and chills, it really feels to me that this is a universal truth, there's something really deep, connection that's happening. Diane Forster: Well, I feel it too, and it blows me away. It's cause it's so big. It's so big. My mission is so big, but I'm open to it and receptive to it and willing participant in the journey of it, and why not me? And why not you? This is our ... This has become our path. We've discovered it, and our mission on this physical journey is to do this sort of work and serve in such a powerful, and I feel blessed to be chosen. I know you do too. Dr. Bob: Yeah. Yeah. And I think one of the things that I'd like to put out there for everyone who's listening is we're not any different than you. Right? Diane Forster: Exactly. Exactly. Dr. Bob: You have a path. You have a calling, a purpose that's within you wanting to get out, and if you don't feel it yet, if you don't know what it is, keep looking for it. Keep searching. Keep reading. Keep meditating. Change things that aren't working for you because you're no different than us. You have the ability to have a major impact and to feel like you're in the flow of the universe. So that's what I wish that. Interestingly, I put a post on Facebook; I think it was yesterday about this. I went to buy my son a bicycle the other day. He's 11, and it was a birthday present, and I feel bad because we had put it off for a couple weeks, and he kept asking, "Where's my bicycle?" Well, it's coming. So I went to the store finally to get the bicycle, and the guy who was behind the counter was really friendly, and at some point, he just said, "What do you do for a living?" And I said, "I'm a physician." And he said, "Oh what kind of physician?" And I said, "I help take care of people in their homes with complex and terminal illnesses and make sure that they have the most support and the most peace and comfort possible." And he asked a couple more questions about that, and the kind of dragged out me that I feel like it's my calling that I'm doing what I'm here to do. And he was so ... He immediately kind of latched on to that, and he said, "What does that feel like? I want to know what that feels like because I want to be following my passion. I want to know what my calling is, and I think I might know, but I'm struggling against it." And so he emailed me, and he asked me if I'd have lunch and talk about that further. So it's just another example of when you're living in alignment with your purpose, and what you're here to do, people see it. They feel it, and they're drawn to it because that's what they want as well. Diane Forster: They do. They want to feel alive. They want to feel purpose-driven, and this is a lot of the work that I do too. I do these transformational sessions with people as well because they feel the pull. They pull the call, but they can't identify what it is quite yet, but they know they're meant to do something more with their life and their time here on this planet. They know it, and they feel that gap, that missing link, that piece there, and I get it. I see it every day with people, and I work with people all the time on it because, as you know, now that you're living it, me too, how it drives you. You don't drive it. It propels us forward. And you're right, Bob. Every single person has a purpose, and most of our purposes are defined from our pain. Like mine was defined from your pain, and yours was defined from a frustration and a pain point as well, and that's really where it comes from is through your pain, you might be able to identify what your purpose is. Dr. Bob: So that's where you need to start the search. Diane Forster: Start. Yes. Dr. Bob: Not to give up. Not to feel sorry for yourself, not to stay down and lick your wounds, but to use that as the fuel to inspire, to catapult you towards where you're meant to be. I love that. I feel inspired because we're talking about this concept. I read to my team yesterday. We have team meetings, and I have myself, my nurse practitioner, nurse, outreach director, practice director, and we're all very much on this path of ... We're all just incredibly excited about what we get to do every day, what we get to bring to our patients and to our families, and I read them this excerpt, which I'm sure you have read from Mary Ann Williamson, so I just feel like now would be a good time to do that. Diane Forster: Okay. Dr. Bob: To take a moment here and to let people who have not heard this excerpt from ... It was actually read by Nelson Mandela in his 1994 inaugural speech, and it's called ... I know you're familiar with it. It's called Let Your Light Shine. Our deepest fear is not that we are inadequate. Our deepest fear is that we are powerful beyond measure. It is our light, not our darkness that most frightens us. We ask ourselves who am I to be brilliant, gorgeous, talented and fabulous. Actually, who are you not be? You are a child of God. You're playing small doesn't serve the world. I want to read that again. I love that. You are a child of God. Your playing small doesn't serve the wall. There is nothing enlightened about shrinking so that other people won't feel insecure around you. We were born to make manifest the glory of God that is within us. It's not just in some of us. It's in everyone, and as we let our light shine, we unconsciously give other people permission to do the same. As we are liberated from our fear, our presence automatically liberates others. Diane Forster: Just love it. Of course, I love it. Dr. Bob: I know. Diane Forster: In fact, it's my favorite book. That book was so instrumental on my journey, a return to love. It was incredible. Dr. Bob: Me too. It's right up there on top. So phenomenal, incredible. Well, let's ... This is a life and death conversation, and we've been talking a lot about life, right? Diane Forster: We have. Dr. Bob: And I think that's appropriate. In this conversation, the majority of what we talk about is going to be about life, how to enrich life. How to have a fulfilling life. How to get through the fear and have the most joy and meaning and life, but the death part of it can't be ignored. Diane Forster: Right. I agree. Dr. Bob: And so for me personally, that sort of the punctuation mark. I see that we have this amazing life, that we have all this opportunity, and death is sort of the finale. It's the grand finale. We need to be celebrating death, life too, but celebrating death instead of fearing it, developing a more comfortable relationship with it, and preparing for it. Diane Forster: Right. Dr. Bob: And then, we get to have a more peaceful fulfilling life without having to worry so much about what comes at the end. Diane Forster: I couldn't agree more. I could not agree more with that, and I have had my own experience with death. I lost my mom. She was 53 years old, and I'm actually 53 right now, so I can't even imagine that experience for her. So that was over 20 years ago, and she passed away from colon cancer, and nowadays, it would've not taken her life, but back then, that was her path, that was her journey, and I noticed a lot of things transpired within my family and our nucleus during that time because my ... We were living in different states, but what happened in that journey and that time together for all of us, it really does bring out the best and worst in people. When I say that, I don't mean worst like the bad in them. It's just their level and capacity of dealing with something like this, something so big like that, and so a lot of what I teach is in my processes is about that every single moment of your life is a gift, even those different moments, and the way my mother got sick in her journey and her passing was such a gift in my life. I felt her love. I knew how much she loved me. She knew how much I loved her, and what came out of that was my father and my sisters and I became incredibly close. Now we were close before, but we came incredibly close and formed family traditions that we've been carrying on. My kids have grown up with them. My nieces sand nephews have grown up with them, and it really changed our relationship. I told you I'm really intuitive, and I believe it was my mother who knocked the pills out of my pills that night without question, and what I'd want to say to your listeners is that even though they cross over, and they die, and they stop their physical experience, their human experience, they are still around and aware, and you can still have a relationship even though you can't see them. You can still feel their presence and their essence around you, and that it's their journey. It's their path, and there's really nothing you could've done about it anyway. It's that guilt that we take on, but that's their contract with their experience of how much time they're supposed to have here, and so just to live intentionally, live in the present moment, and really just embrace them for exactly who they are and what their journey and their path is. So anyway, I just wanted you to know that I've had first-hand experience with losing somebody that I loved deeply, early on in my life, and...
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Euthanasia in the Netherlands is Helping People Who Want to Die, Dr. Rob Jonquière Ep. 13
09/20/2018
Euthanasia in the Netherlands is Helping People Who Want to Die, Dr. Rob Jonquière Ep. 13
Dr. Rob Jonquière is the Executive Director of the International Federation for Right to Die Societies. He shares how euthanasia is helping people who want to die in the Netherlands. Now, assisted suicide is also legal. Hear how this is impacting the country. Contact Note: A Life and Death Conversation is produced for the ear. The optimal experience will come from listening to it. We provide the transcript as a way to easily navigate to a particular section and for those who would like to follow along using the text. We strongly encourage you to listen to the audio which allows you to hear the full emotional impact of the show. A combination of speech recognition software and human transcribers generates transcripts which may contain errors. The corresponding audio should be checked before quoting in print. Transcript Dr. Bob: Welcome to another episode of Life and Death Conversation. I'm Dr. Bob Uslander, and I'm here today with a guest who I'm anxious to hear from. He's got a rich experience in caring for people at the end of life, and he's really on the forefront of the movement to assist people in having a more peaceful and dignified end of life worldwide. So, welcome Dr. Rob. Jonquière. Thank you for joining me today. Dr. Rob Jonquière: Good evening, yes. Dr. Bob: Yes. It is evening. For me, it's morning, for you it's evening. Dr. Rob Jonquiere: Sorry. Dr. Bob: Can you tell us where you're calling, where we're talking from? DrRob Jonquière: Amsterdam, in the Netherlands. It's evening here at this moment. Dr. Bob: Very nice, and you were just mentioning to me that you're in the midst of winter, but you're having some- Dr. Rob Jonquière: It's not a real winter, unfortunately. It's too hot. They are expecting a little bit colder next week, of course, in my youth, I used to go skating outside, and it is a long time since we have been able to do that, so probably the climate change, I'm afraid. Dr. Bob: Well, as you know, I'm in sunny San Diego right now, having grown up in the Midwest in Chicago, I had my fair share of snowy, cold winters, so I'm feeling fairly blessed knowing what's happening in the Midwest and the East Coast right now. Well, again, thanks for taking time. We met not long ago, a month or two ago, when you were here in San Diego at a conference, and I got to a chance to hear a bit about your background and what you're involved with, and I think we are kind of birds of a feather. We seem to share a belief system and philosophy about how people should be cared for and supported at the end of life. You live in a very progressive country, with respect to this, and you've been a pioneer for many years, so I'd love for you to share a bit about what you're doing and kind of give us a sense of how you came to be in this position. What was the path that brought you here? Dr. Rob Jonquière: Yeah. Well, actually, at this moment, I'm involved in the international movement as it is called, the Federation for Right to Die Societies, which is an international federation of 52 societies, like the Hemlock Society of San Diego is one of the members, and I am the executive director of that federation, which implies actually looking after the website of the federation and assisting the committee or the board of the Board of Directors of the federation, and I came there after I was retired. I had been retired from my work at the Dutch Right to Die Society, NVVE as the name is, and in my retirement, I'm not used to sitting still, doing nothing, and I'm very interested in the whole movement, not only in the Netherlands but also worldwide. When I was working at the NVVE, I was started work there about five days after the health minister brought her bill, an euthanasia bill in the Parliament, so I have been involved in all the debates actually right from the beginning in the parliamentary debates, and as Chief Executive Officer of the NVVE, I've been for eight, nine years involved in the practical situation after the bill was approved in the Parliament, and now we have our official euthanasia law since 2002, and having a law is not the end of ... Well, it is the end of a process, but it's the beginning of a new process, to get people to accustomed to the fact that we have a law where it is legal for a doctor to assist in euthanasia, and aid in dying as it is called today, and we have to see the patients get what they want and that the law is used as it should be. And, of course, it's interesting how I became to be the executive officer because my original profession is a family medicine, so I have been working as a family doctor in the eastern part of the country, and I know from the beginning, I always have been very interested in ... Well, let's say, not the patient with colds, or a little complaints or things like that, but especially the situations in which patients needed guidance, whatever they need guidance in, so I have been delivering babies on the one side of the life, and I also became involved in the end of life guidance, where automatically, in that period, first careful questions came from patients especially patients working in the healthcare field, about my position regarding euthanasia as it was known, but as it was illegal at that moment. And, of course, I had never got training on what euthanasia was, how you do it, or what kind of medication you use, so it's using your experience and trying to sort of help people die in a peaceful and dignified way, and of course having been given this kind of help, I have never reported it, because if I had reported it, I would have been persecuted and probably get before the courts, and I didn't want to do that- Dr. Bob: Of course not. Dr. Rob Jonquière: No, and my patients didn't want to have me in front of courts. They asked me to help. They said not if you're getting trouble, and of course, in the situations I'm talking about, it has been patients with terminal cancer situations, who actually were really at the end of their lives, suffering from their cancer situations, although we have been treating with all kinds of care and medication and help we could. Dr. Bob: So, I want to touch on that, I want to clarify a bit for anybody who would like that, this was occurring when you were a practicing family doctor. Dr. Rob Jonquière: Yes, the '70s, '80s. Dr. Bob: Okay, and you were doing the whole full spectrum of caring for people from birth to death, and you recognized that there were people who were suffering, and you obviously philosophically felt comfortable with providing that support, even though it was not legal. So, first of all, the statute of limitations, I'm assuming the statute of limitations, for that type of activity, is past so that you can speak freely about it- Dr. Rob Jonquière: Yes. Dr. Bob: About your experiences back then. Dr. Rob Jonquière: Well, I can, and I mean, even you can say that is kind of a Dutch culture. I mean, at that moment, I could not go to the authorities and say, listen, I've terminated a life of a patient because she was suffering terribly, so I just said, in my records, that she died because of her cancer, which was actually the case. I only speed up the dying process a little bit. Dr. Bob: Which is the same as the aid of dying laws here in the United States, where the patients are dying. Anyone who is eligible for physician aid in dying is dying. Dr. Rob Jonquière: Certainly. That is now, and of course, in the Netherlands, it is now absolutely normal practice in terminal cancer situations. People are in such a situation, and don't want to go to the real end of the suffering can ask for it, and will get euthanasia without any problem. Dr. Bob: Okay, so let's go back. So you ended your clinical practice. What drove you at that point to stop practicing in the way that you were in that practice? Dr. Rob Jonquière: Well, you know, the main reason is I have always been interested to not only do my work as a family doctor, but I always liked to work in organization, to support, to develop things, to do on education, or research, or whatever, so I did many things besides my practice, and actually that became a little bit too much for a work situation, and then I got the opportunity to become the head of the vocational training program for family doctors, which actually meant that I could go to work on a university. I had the opportunity to be involved in research, in education, in organization, and it was still inside the field of the job and the kind of work I liked, which is family medicine. So, not specifically my work in the field of end of life, just a change of work from being a, let's say a medical practitioner into a person on university working on a higher level. Dr. Bob: Got it, and through that period, were you still working in the end of life arena, helping patients at end of life? Dr. Rob Jonquière: Not intentionally. Not as a kind of idea. There were other things that I was focusing on. You can say that I developed, in that period, the vocational training scheme for nursing home physicians, which is a little bit that way, and whenever in the curriculum of the vocational training, the topic was end of life or palliative care, although they didn't give it that name at that moment, but end of life care, guiding dying people, yes, of course, I was interested in that because it touched a part of my practical work. Dr. Bob: Wonderful. And, then additional sort of responsibilities and opportunities, and then eventually found yourself really diving fully into the Right to Die organization, is that right? Dr. Rob Jonquière: That was also, actually, accidentally. I was looking for ... I don't know whether you know the issue of middle management. Working at a university, I was all the time in a middle management position, and I wanted to take one step further at being, having the end responsibility of something, and then I was invited, actually, to applicate for the job of the chief executive officer of the Dutch Right to Die Society, and of course, the main question they asked me, what is your opinion on end of life and euthanasia, because they were, at that moment, advocating. It's a large advocacy group for euthanasia in the Netherlands, and I could say, I'm in favor of it. I did practice the issue, and I thought it, indeed, should be legalized because I practiced when it was not legal, and I knew what difficult situation that was, doing something, which is very emotional but being allowed to officially talk about it. So that was is where I applicated for a job of the Dutch Right to Die Society, and from that moment I was indeed more than 100% into end of life, euthanasia, medical aid to dying, and all of the developments. Dr. Bob: And, you were there, you mentioned, that euthanasia has been legal since 2002. Dr. Rob Jonquière: Since 2002, yes. Dr. Bob: This was all happening right at the beginning of your tenure there. Dr. Rob Jonquière: Yeah. Dr. Bob: Well, fantastic. Can you describe for people who are listening what the different terms refer to? Dr. Rob Jonquière: The official translation of euthanasia is a good death, but in the Netherlands, we have since the middle '80s, the commission has looked into, and we have, in the Netherlands, defined euthanasia as the intentional termination of life on request of the person who is going to die. So it means that you do something, and the only aim of your action is that the patient is going die, and you only do that if the patient asks for it. So, if there is no request, you cannot practice euthanasia. You cannot practice euthanasia by giving medication, which, as a side effect, will terminate life of someone. Next, to euthanasia, which is an action by giving an injection, we have what we call assisted suicide. I know there is a lot of problems with the term suicide in the world, but we call it assisted suicide. There, as a doctor, you prescribe the medication, which causes death of the patient, but the patient takes the medication him or herself and legally- Dr. Bob: And, is that happening? Is that happening in the Netherlands as well, or has that pretty much gone by the wayside because of euthanasia being legal? Dr. Rob Jonquière: Well, the funny thing is that I've been speaking with my doctors of course, after the legalization, and all those doctors I spoke to said, well, I always want the patient to take the medication himself, so practice physician assisted suicide, still if we look at the figures in the Netherlands, we are lucky in the Netherlands that there is a very quality research and surveys going on what is happening, and there you see that between 85% and 90% or even more of the actions at the end of life is euthanasia, and only 5% is assisted suicide. So, officially, euthanasia is the main, so that's the reason why when we discuss the issue, we always talk only about euthanasia, but assisted suicide is the same, and you see that now some of the patients rather want to do it themselves. Some of the doctors, indeed, say if you want to die, you have to do something about it yourself, and I'm only prepared to give you the medication as you do in California. Dr. Bob: Okay. Is the medication being administered in the euthanasia cases, is that regulated? Is there a specific medication that everyone has access to? Dr. Rob Jonquière: Well, yes, it is officially one of an anesthesiologist, Pieter Admiraal, who you could call the inventor of the euthanasia medication, which is actually you bring the patient in a real deep coma, mostly by injecting barbiturates, an overdose of barbiturates, and after you have checked that patient really is in coma, and doesn't feel anything at all, you give again an overdose of a muscle relaxant, the medication anesthesiologist use when the patient is operated on. Dr. Bob: Okay. Dr. Rob Jonquière: Yeah, and that is now more or less a kind of protocol, and even if you look at our laws at this moment, it says, if you do it, you have to do it the proper way, which is you have to do it according to the medical standard, which is using that protocol, and the assisted suicide is just barbiturate, nine grams or 10 grams or so in a cloud of water. Dr. Bob: That's the same medication being used here, for the most part, the Seconal. Are there specific physicians who are trained in this, or what's that process like? How does a physician get certified or be allowed to do this? Dr. Rob Jonquière: Yeah, in the Netherlands and the Dutch law doesn't say that it has to be a certification. You have to be a doctor. That's the only thing you have to be. You have to follow the criteria of the law. The only certificate doctors are a group of second opinion doctors. Their obligation is, one of the criteria is that you have to consult a second independent doctor about case before you can perform the euthanasia, and these doctors are trained. Yes, of course, about the practicalities, about legal issues, but mainly about what kind of problems there are, and how to give a consultation to a colleague, if they are asked for it, but every doctor can actually practice euthanasia. Dr. Bob: Okay, like in California with the aid in dying, and the end of life option, it just requires a medical license, and the hope then is the physicians who are participating are becoming familiar, are becoming experts on their own. That's what we would hope. Dr. Rob Jonquière: I think that's what's happening. I mean, if you see in the Netherlands, we have of course what is it, 13, 14,000 family doctors, 85% of euthanasia is performed by family doctors, and you see of those family doctors, some 30%, 40% do it more regularly, which is still not more than two or three times a year in the average. So, they get used to how to do it, and there are manuals. We have papers or documents they can consult, and of course, that is where the second independent doctor can help. That doctor is trained. When that doctor comes, they can say, well, everything is okay, but, these and these things are not yet okay, and then the doctor can change that. We see more or less now, that sometimes, especially younger doctors don't go alone if they have to do it, but take an older colleague with them, so train themselves. Dr. Bob: Sure, we have mentors to help guide them. Is there opposition? Dr. Rob Jonquière: And, of course, that is also important of having a law. They are legally allowed to discuss their case. They can openly talk about, instead of having the fear that someone is listening and saying, hey, you have done something illegal and go to the police. Dr. Bob: Is there opposition in the Netherlands that is of significance? DrRob Jonquiere: There is. I don't think it is of significance. The main opposition is from the Orthodox-Protestant churches, and of course, we have the official opposition from the Catholic Church, the higher institutions. We see lower ... What do you call it? Clergy. Dr. Bob: Clergy, mm-hmm (affirmative). Dr. Rob Jonquière: Clergy working with family doctors, and then guiding their dying patients as well, but officially, the Church is against it, and practically we see 10% to 12% of doctors, mostly on religious situations, are not doing it principally, and then you have some 30%, 40% of doctors who are afraid, well, you know, don't know what to do, how to do, and don't want to go into that field. Dr. Bob: They just don't want to stretch themselves in that way. They don't feel comfortable for whatever reason. Dr. Rob Jonquière: Yeah. Dr. Bob: Well, that's fascinating. I that there's a lot of people around the world, and a lot of people in the United States that are clearly in favor of laws that are more favorable towards helping people having a peaceful end of life, you know, I hear so often when I'm taking care of people who are struggling with end of life challenges that we take better care of our animals than we do of our people here in this country, and of course, they are referring to the ease of which we can have animals euthanized but not allowing humans to have their suffering end that way. Dr. Rob Jonquière: What I have heard from one of my opponents once, as well, that's why there is a difference between a dog and a man, a human. Dr. Bob: Easy to throw that out, but just sort of deflect the conversation. So I appreciate ... I know that a lot of people will be very interested in just hearing more of the specifics of what is happening in the Netherlands. Dr. Rob Jonquière: Well, you know, the funny thing is, Bob, if you look at the attitudes in the population, yes, of course, maybe in the Netherlands it is a little bit higher than in other countries, but what I see in my function as executive officer of the World Federation now is that in practically all countries, even in what is seen as Catholic countries, you see a population of over 60% to 70% who are in favor of it. So, it is not the population which is a problem, it is the politician, and the politicians who many times have, of course, have broader responsibilities. You see in some countries, and I think in the United States certainly, you see more influence from the churches on politicians because they are dependent on that kind of situations, and that is the situation we don't know in the Netherlands, and in some other countries in Europe as well. Dr. Bob: The ability to influence politicians that way? Dr. Rob Jonquière: Yeah. Dr. Bob: With financial incentives and other types of influence. That is a problem ... and I know it is not unique to the United States, but it is especially problematic those influences, and in many cases, it comes down to fear and greed and how do you feel that the pharmaceutical industry or the insurance industry, the financial industry, how do you feel that they factor into this conversation? Dr. Rob Jonquière: As far as I know in the Netherlands, it's practically has no influence at all. That's of course because our system is based...
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How to Stop Fearing Death and Start Living Today, Cathy Spatuzzi, Ep. 17
09/20/2018
How to Stop Fearing Death and Start Living Today, Cathy Spatuzzi, Ep. 17
Cathy Spatuzzi is a yoga and fitness instructor who works with Integrated MD Care. She shares how she helps patients and her views on why she doesn't fear death and, instead, makes sure she is living in every moment. Books on End of Life Being Mortal, Atul Gawande Knocking on Heaven's Door, Katy Butler Find more in this blog post, Note: A Life and Death Conversation is produced for the ear. The optimal experience will come from listening to it. We provide the transcript as a way to easily navigate to a particular section and for those who would like to follow along using the text. We strongly encourage you to listen to the audio which allows you to hear the full emotional impact of the show. A combination of speech recognition software and human transcribers generates transcripts which may contain errors. The corresponding audio should be checked before quoting in print. Transcript Dr. Bob: Hello and welcome to A Life and Death Conversation. I'm here today with a good friend and a really valued member of my Integrated MD Care team Cathy Spatuzzi. I'm very excited to introduce you to Cathy and to hear some of her insights. Cathy and I have known each other for a bit, and we've shared some incredible experiences with our patients. We're going to touch on some of those, let you know what Cathy does and how she does it because I think she's really quite an expert in her field and I know that she loves what she does. So, Cathy, thank you for being here and joining us. Cathy Spatuzzi: Hello, Dr. Bob. Thank you for having me. Dr. Bob: Yeah, my pleasure. It's great to see you. I'll share that trying something new, our podcasts, the ones that I've done previously have all been recorded on the phone. Today Cathy is in the office, and we're doing it together. It's really nice to be able to look at her in the eyes as we do this. Cathy Spatuzzi: Yeah, I agree, face-to-face is very nice. Dr. Bob: Yeah. So Cathy is … her title is yoga and fitness instructor. I know that there's probably a lot of yoga and fitness instructors out there who work in various capacities but that doesn't really begin to explain quite what Cathy does because I've seen her in action and I've seen the results of her work. It's nothing short of magical; I have to say. Cathy goes in and works with some of our sickest and most frail patients. She works with people who have dementia. She works with people of all ages and abilities. They don't even know they're exercising. They actually just think they're playing games and meeting a really cool, fun, person. So Cathy, can you just share a little bit about how that happens, what you do, how you approach your patients and just share a little bit about how that magic happens? Cathy Spatuzzi: Sure. So I got my yoga instructor certificate, and I started teaching seniors. I took an extra class in teaching seniors, and I really loved it. Then I met Dr. Bob, and I've always been a physical exercising person myself, and so I've made up my own little program where I go into a person's home, and we have a whole hour of exercise. So we do physical weights, and whatever that person needs at the time, that's how I meet their needs. So we do dancing, we do marching. I bring some music sometimes. I have little balls that we do exercise with. They're bright and colorful. We play games with the balls. I also have just blown up regular balloons, and we hit the balloon back and forth and play a game that way. A lot of people that used to do tennis or volleyball, they remember that, and their muscles and cells remember that and they really get a lot of fun exercise just hitting the balloon back and forth. They tell me lovely stories. Most of my people are 80 to 90, some are a 100 years old, and they tell me fabulous stories. They all have a very positive attitude in life. Dr. Bob: I've met with people, I've been there after you've been with them and it really is pretty dramatic. A lot of our patients, because a lot of times they don't feel well, they don't have a lot of energy, they're dealing with pain, they're dealing with other challenges, and exercise is not something that they necessarily prioritize or look forward to, but that's not the case with you. They obviously don't feel like they're doing exercise. They don't feel like they're working. There's something else. There's another piece that obviously you're bringing to it, which, to me, it feels like you're just really connecting with them very deeply and appreciating them as human beings, and the exercise just happens as on the side. Cathy Spatuzzi: Yes, I agree. I don't think of it as exercise myself. I go in, and I have fun, yes, and I connect with that person one-on-one, find out what they like, what else do they like, then I bring that in with them. Dr. Bob: We've shared a couple of patients that had had some pretty remarkable experiences, people who were not expected to live more than a month or two who through combined efforts have gone on to live for a couple years, people who were not walking who are now walking half a mile to a mile without difficulty. Can you share maybe a little bit about what that's like for you to be part of that? Cathy Spatuzzi: It's a gift. I love all my clients, but to work one-on-one and to see a person that was maybe almost on their deathbed to come back and is living and they want to have a life. One of my sayings is motion lotion. If you don't move your body, you're going to get stiff, and you're not going to feel like moving so let's just keep moving. Some of my other seniors that are more fit, that's what they say, you have to keep moving, you have to keep moving, you have to keep moving. So I keep them moving. Dr. Bob: You keep on moving, and you keep it fun. Cathy Spatuzzi: Yeah. Well, you have to have fun in life, so why not bring it to your work? Dr. Bob: Yup, I agree 100%. So this is A Life and Death Conversation, and part of what we're trying to do is give people just a look into how we can have an easier time talking about topics that can be difficult: death, illness, debility. So as an example, we are doing that there. We're talking about things that might not come up in normal conversation. I, as you know, go right to the point. I don't mince words. I don't hold back a whole lot. I just want to ask you and get some of your personal perspectives on some of these things, if that's okay. Cathy Spatuzzi: Sure. Dr. Bob: All right. Tell me, do you have … and this is a question I ask all my guests. Are you afraid of dying? Cathy Spatuzzi: No, I'm not afraid of dying. Dr. Bob: You're not afraid of dying. Cathy Spatuzzi: No. Dr. Bob: Well, why? Can you share why you're not afraid of dying? Cathy Spatuzzi: My maternal grandmother always talked to me about death. Dr. Bob: Really? Cathy Spatuzzi: It wasn't morbid. It wasn't like, "Oh, I …" I don't know, she just always talked about it. It wasn't something under the covers. Dr. Bob: Just kept in awareness of it in the home? Cathy Spatuzzi: Yeah, like when somebody died, we'd talk about it, or when- Dr. Bob: Okay, how healthy. Cathy Spatuzzi: Yes, uh-huh (affirmative), and so I think I've just adopted her attitude and calmness about it. For me, thinking about dying, I think about living. So I'm alive. I can walk and talk, and do all these beautiful things, but let's be present doing it. If you're just walking through life in a fog, then you're not living, but when you think about you're going to die, maybe that's a point where you're going to wake up and start being present in your life. Dr. Bob: Do you feel like thinking about dying, talking about dying is responsible for you having a greater awareness of and maybe gratitude for life? Cathy Spatuzzi: Yes. I think I have gratitude every night before I go to bed. Dr. Bob: I guess, not being dead is a part of that, right? Cathy Spatuzzi: Right. Driving around and you see the beautiful clouds. You might see an airplane. Let's take each moment for today because maybe you will die tomorrow. Let's be grateful for what we have today, not think about what if, what if, what if it's going to happen. I pray that I have a beautiful day and then I have a beautiful meal and then I go to sleep and die. Not tomorrow. Dr. Bob: Not tonight, yeah. Cathy Spatuzzi: Not tomorrow. I got- Dr. Bob: Because I know you have some things to do this weekend. I know you have some plans. Cathy Spatuzzi: I know, yeah. I have plenty more years ahead of me, but that's what I've always thought about, nice and peaceful. Dr. Bob: Beautiful. Interesting. We both are spending time now with people who believe that they may not have a lot of time left, some of them because they're elderly and some of them because they have a terminal illness, and in some of those conversations, I hear people talking about how their time is so limited. Occasionally, they get into this pattern of feeling bad about it, and I wouldn't say necessarily feeling sorry for themselves, but focusing on how their life is going to be shortened and they're aware of that. I always accept that. I never try to convince them to think differently. That's their thought, and I would never judge that, but what I'm aware of is that there's no guarantee for any of us. I may have a patient who has a prognosis, a life expectancy of three or four weeks. There's a lot of people who are going to die unexpectedly before that person dies. We may be one of them. We have no guarantees, and so focusing on what we have today like you're talking about like you're suggesting being grateful for the fact that we are alive and that most of what's going on in our life is good, may not be perfect. Jon Kabat-Zinn, the creator of the mindfulness-based stress reduction program, had a phrase that I love and I repeated often. It's, "As long as you're breathing, there's more right with you than wrong with you." Cathy Spatuzzi: Yes, I agree. Dr. Bob: Yeah. Cathy Spatuzzi: That's beautiful. Dr. Bob: Sometimes if somebody is lamenting about the pain that they're having, the limitations that they're having, just remembering how many trillions of things are happening simultaneously in our body, the chemical process, the cellular division, the fact that everything is working as it's designed to, except for a few things, which could be significant things, it's still a magical design. Cathy Spatuzzi: Yeah, the body is an amazing piece of work. Dr. Bob: Yeah, and you're doing a great job of keeping it amazing. Cathy Spatuzzi: Thank you. Dr. Bob: Yeah. Cathy Spatuzzi: I love working with the clients, yeah. Dr. Bob: Yeah. Some of our clients die, right? Cathy Spatuzzi: Yes, they do. Dr. Bob: Yeah, they do. How do you deal with that? Cathy Spatuzzi: It's difficult at first. Dr. Bob: Because you spend more time with them even than I do. You're with them sometimes two or three times a week and getting very close, getting very connected with them. Cathy Spatuzzi: Yes. When they die, going into this though, I mean that's part of life, and I knew that but when they die, I go into myself and remember all the good times that we had together, but then that also brings up for me my own experience with my own family and dying. So then it's almost like I grieve all of them: my parents, my grandparents, a friend all over again, which isn't a bad thing. Yes, it's sad and, yes, I cry, but there's another layer of deepening, of healing, of comfort for me. Dr. Bob: So when a patient dies, when somebody who you've been working with a client, it sounds like you're allowing that experience to create another layer of connection with other people who have gone before them, with your family. It allows you to grieve all of death, all of the people who have gone. Cathy Spatuzzi: Yes, I grieve all of the people that have died that I know and then I think about where did they go … all the same, questions come up for me. Where did they go? Where does the spirit go? Where does the soul go? Where does the brain …? I've read a lot of books, and I still don't have any answers. Dr. Bob: Oh, darn it. I was hoping that you were going to give me the answer now. Cathy Spatuzzi: No, I don't have any answers, and that's okay. I'm comfortable with that. Dr. Bob: So you don't know but what do you think? Where do you think … what's your thought about what happens after we die? Cathy Spatuzzi: Well, I believe that the physical body dies. I would like to believe that there is an after realm, rather you call it heaven or reincarnation. Those are the things I don't know, but it would be nice to see some people again that have gone before me. Dr. Bob: So you're not positive. Cathy Spatuzzi: No, I'm not positive. Dr. Bob: What percentage of certainty are you that there's something else? Cathy Spatuzzi: 50/50. Dr. Bob: 50/50. Cathy Spatuzzi: Yeah, and I'm comfortable with that. It's because I've thought about it so much. Dr. Bob: Well, if there is … Oh, that's nice. You're like right on the 50-yard line there. So if there is something else, then that's great, and we'll be hopefully very pleased to find out, and if there isn't, well then we will never know, right? Cathy Spatuzzi: Right. I've asked some of my relatives that were dying. I said, "Now, when you get wherever you're going, wherever that is, give me a sign." Dr. Bob: And? Cathy Spatuzzi: I haven't gotten anything. Dr. Bob: You haven't gotten anything. I have. I think I've shared that, my dragonfly connection. Cathy Spatuzzi: I did have a feeling, but not necessarily like a physical sign, like a picture or something, but I've had feelings of my grandmother touching my hand. I knew it was her. Dr. Bob: Yeah. Cathy Spatuzzi: I knew it was her. Dr. Bob: Okay. So then- Cathy Spatuzzi: So maybe yeah. Dr. Bob: Yeah, I'll go with that. Cathy Spatuzzi: Yeah, yeah, yeah. Yeah. Dr. Bob: Cool. It's interesting because there are … I hear that people are very uncomfortable talking about death. I hear that all the time. People don't want to talk about it. They want to ignore it, pretend it's never going to happen. I don't have that experience with people, and maybe it's just because I draw it out. But in the conversations that I or maybe people who … Maybe those people like walk away when they see me coming; I don't know. But I actually find that people want to talk about it and given the opportunity, they're drawn to the conversation. It's interesting because I find some people want to talk about a bad experience and maybe it's because I'm a physician and I make it safe, but they want to share how traumatic this was and complain … not complain, but just put it out there and it seems like it's little cathartic when they talk about how difficult an experience was. Then there's another group of people who were really transformed by a beautiful experience around death and dying of a friend or a loved one, and they also want … it's cathartic for those people as well. I find it really fascinating how much people want to have this conversation when it's brought up in a way that's safe, and someone clearly wants to hear what they have to say, what their thoughts are. Cathy Spatuzzi: I have found that some people just need somebody else to listen. They haven't found that person, and maybe that's you. Dr. Bob: Yeah, maybe, maybe. I'll tell you that sometimes my wife, Sandy, it gets a little overwhelming for her because she's with me and we'll be either at dinner, we'll be at a party, and I start talking to somebody and she goes away and comes back, and we're deep into this conversation about how their mother passed away or the complexities of certain situations. I just find that that's sort of a natural thing that's happening. Cathy Spatuzzi: You have a gift. Dr. Bob: I don't know it's a gift, but it's an interesting phenomenon, so. Cathy Spatuzzi: Yeah. Dr. Bob: Do you have any experiences that were either challenging or really beautiful that you want to share? Cathy Spatuzzi: My maternal grandmother, Jenny, she was 80 years old. She fell and broke her hip. I was her guardian because my mother had already passed away years ago, which is a whole another story. But I was in the nursing home room right beside my grandmother, and she was dying. I could see her coming in and out of what I call crossing the veil. She wasn't exactly sleeping, but she was testing the veil and then coming back. She'd come back, and she'd say, "Oh, Cathy, you're here," and then we would talk and I was able to tell her how grateful I was for all the time that I got to spend with her closely after my mother died. She said, "Oh, I want to die," and I said, "Okay, I don't want you to suffer. It's okay." She said, "But I don't want to leave you." I said, "Grandma, it's okay. I'm going to be fine." Then the next day she died. So, and I've heard this similar kind of story from several other people and the person that's dying just needs permission. Dr. Bob: But you weren't there when she actually died? Cathy Spatuzzi: No, I wasn't in the room when she died. I was there the day before. Sometimes they don't want to die with you in the room. Dr. Bob: Yup, that happens frequently. Cathy Spatuzzi: Yes, yes. Dr. Bob: Which is hard, which is a challenge because you don't want to leave. A lot of times people don't want to leave. They feel like they're supposed to be there through the very end, to the last breath, and it's hard to know what's happening. So there are times when someone does step away, they go to the bathroom, they run out to get something for somebody, and they slip away, and that's the way it's meant to be. Cathy Spatuzzi: Yes, I agree. Dr. Bob: Yeah. When you describe … what was the word you used? Cathy Spatuzzi: Crossing the veil or testing, testing the veil. Dr. Bob: Crossing the veil. Testing the veil. Can you share a bit more about that? What made you believe that she was testing the veil and not just like napping or falling asleep briefly? Cathy Spatuzzi: I can't describe it any other way, but I could feel her body, her spirit, not really her physical body, but her spirit, her soul, and I didn't … I could see something but it's kind of this feel-see type of a thing, and I knew she wasn't exactly sleeping because I could feel it going out, this energy, and then coming back in. When she would come back in, you would see her body be more alert and then she'd open her eyes and then we'd talk a little bit and then … I could tell if she was sleeping versus doing this testing. Dr. Bob: Fascinating. Cathy Spatuzzi: Yeah. Dr. Bob: Yeah. Cathy Spatuzzi: It was great. Dr. Bob: That's great, yeah. I hear about, read about and I've seen people who I believe are in that place. Testing the veil, I haven't heard that description, but I like it. I truly believe that as people get closer to death, they're in two worlds, right? Cathy Spatuzzi: Yes. Dr. Bob: They cross. They slip back and forth. So if we really believe that, then it certainly gives us a little bit more comfort and assurance that there is something on the other side because that's what they're testing, that's what they're exploring. I've seen people in the last moments or hours of life reaching out, talking about people who they see, loved ones, and I know that a lot of people would write that off as hallucinations, as due to medications. They're not really there. But I completely believe that they are making a connection with the spirit world and those who they are going to be reunited with on the other side. I can't prove it. I know that there are books written about it, a number of good books, and we can put some of those resources on the website to share, but I implore people, I welcome you to read some of these things because it really does provide quite a bit of comfort. If you're uncertain or you're worried about everything just ending or what might happen after death, reading about the experiences of people who fully believe that they were on the other side and came back to be...
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How Music Is Helping Alzheimer's Patients – Alive Inside, Michael Rossato-Bennett
09/20/2018
How Music Is Helping Alzheimer's Patients – Alive Inside, Michael Rossato-Bennett
Alive Inside" is a wonderful film and movement that awakens the Alzheimer's mind and connects generations, comforting elders and rescuing youth. The film's Director, Michael Rossato-Bennett, shares how it all began. IntegratedMDCare.com " Note: A Life and Death Conversation is produced for the ear. The optimal experience will come from listening to it. We provide the transcript as a way to easily navigate to a particular section and for those who would like to follow along using the text. We strongly encourage you to listen to the audio which allows you to hear the full emotional impact of the show. A combination of speech recognition software and human transcribers generates transcripts which may contain errors. The corresponding audio should be checked before quoting in print. Contact Transcript Dr. Bob: Today's guest is Michael Rossato-Bennett-Bennett, the director of the film, Alive Inside, and the founder and executive director of the Alive Inside Foundation. Alive Inside is a phenomenal film, and I highly recommend you find a way to watch it. The Alive Inside Foundation is dedicated to healing loneliness and disconnection in all of our lives, but especially in the lives of the very young and the very old who are living with dementia. They partner with communities to connect the generations and shift our relationship with life, aging and growing up. The Foundation seeks to end loneliness using empathy, music, life story, and film. This interview with Michael is an intimate exploration into the mind and heart of a man who seems to have stumbled upon his purpose and has been inspired to create in a much more expansive way since doing so. I hope you enjoy it. So, Michael, your life has changed pretty significantly in the last several years. From what I can gather, what started as a project that you couldn't really foresee a whole lot coming out of, to what has been created in your life now and looks amazing. What's it like? Tell me the journey a little bit. Michael Rossato-Bennett: Well, like every life, probably the most important things are your failures. Those are what you learn from, like your woundings, your emptiness, your hungers. These are the things that actually fuel you. When nothing else makes sense, I'm deeply interested in what makes sense when nothing else makes sense, and I think that's a very apt conversation to have in this time because I'm sure I'm not alone. I think if everyone were honest, they would just say right now, "What the heck is going on?" Dr. Bob: How did we get here? Michael Rossato-Bennett: How did we get here? How do we tell our children your president doesn't tell the truth all the time? How do we say your government isn't really trying to protect you? We're confused. I mean I am, and I have been many times in my life. I'm going to get a little philosophical here, but I think anyone living in a predatory culture that doesn't quite know that they're living in a predatory culture, has a feeling of disquiet and confusion, and like all of us who are trying to do something in the world, our efforts are constantly called into question. What am I doing? Am I helping create a just world? Am I helping create a world where life is recognizing and aiding life, or am I deeply investing in a system that is reducing the quality of life, literally for the planet at this time? I think every one of our occupations, from farmer to doctor, has to wrestle with these questions right now, what is my place in this world that we've created, and, unfortunately, we don't get to remove ourselves from it I don't think. Dr. Bob: It's interesting. As you're talking about this, and I don't know if you have children or not, but as you're talking about this, I'm flashing on my 11-year-old son, who is right at the verge ... If I asked him what does it feel like to live in a predatory world, I think he would know enough about what I'm asking to form an opinion and connect with it. But I, also, feel like he's still living in this other world where he can slip back into this sense of comfort and not allow that to influence his day to day existence. Michael Rossato-Bennett: I mean this is at the core of everything I'm working on, and it's simply the recognition of the idea that we actually do mature, that there is actually an arc to our lives. When I was 21, I was competing my ass off to win the steak knives at my job for Cool Vent Aluminum telephone salesmen. I wanted to be the best Cool Vent Aluminum salesman because the sales manager told me that I was nothing if I couldn't book these appointments for his salesmen to sell this poor, older people aluminum siding and new windows. Dr. Bob: And you believed that? You believed that story. Michael Rossato-Bennett: I believed it. Dr. Bob: Yeah, you did. Michael Rossato-Bennett: I believed it, and really, honestly at that point, all I wanted to do was be good, be recognized, to succeed, to have some validation, and honestly, I didn't think that the people who were in authority, that the people who were older than I was, I didn't think that they didn't know what they were doing. I thought they knew what they were doing. But your 11-year-old son, he's awakening in a world where it's obvious that we don't know what's going on, that something is happening, and it's amazing what's happening. I mean basically what's happening is we're going through a major psychic, intellectual, spiritual, existential definition of what it means to be human, and what it means to be human together, and ideas that we've had for thousands of years are no longer functional in the face of these incredible tools that we've created in the last 20 or 30 years. The computer has just turned human culture on its head, and we are not ready for it. Dr. Bob: Right. Michael Rossato-Bennett: And we're innocents, and I think in a hundred years we'll look back and this and go ... Just like slavery. At one point, slavery seemed to be a pretty good business model. We try not to do that anymore, at least in a recognizable form. But in a non-recognizable form, we haven't given up that business model, and that's what we're dealing with. I mean you're a doctor, and I work in healthcare to some degree as well, and Marshall McLuhan is a great media thinker, a thinker about media, and he said years and ... Maybe 60 years ago or 50 years ago, he said, "The medium is the message," and I never understood what that meant, but I understand what that means now, that basically, the structures that we create determine the outcomes, no matter who is in them, or no matter what the outcomes are. When you have a lot of people making money on petroleum, you get plastic in the ocean. It doesn't matter what people do. In 50 years, we won't be relying on petroleum. We won't have the pressure to create as much plastic, and maybe we can solve that problem. Dr. Bob: Well, so fascinating. Great perspective. Love it. Not exactly where I was anticipating the conversation was going to go, but I love it, and I want to hear ... So you take that. I'm sure that your awareness is continuing to mature, to evolve, and it's influenced by and influencing what you are doing day to day to improve the lives of the human beings that you're concerned about, as we both are. What's happening in your life? I want to know what you're doing. What's the Foundation doing? How are you right now serving in a way that is trying to achieve the most benefit for humankind? Michael Rossato-Bennett: Well, I mean that's a big thing to say. Dr. Bob: I know. Because it's happening. What you're doing is serving humankind in a positive way. Michael Rossato-Bennett: Right, right. I'm not young. I'm not a child anymore, and you get to a certain point in your life, and you ask yourself, "Okay. What can I do to help other people," because helping yourself is kind of boring after a while. It just becomes boring. So you want to expand your relationships with other people, and it's interesting. Dr. Bob: I lost you for a second there. You said interesting, and then I lost you. Michael Rossato-Bennett: I was relating to these thoughts. Okay. Sorry. All of my thinking comes out of working with these elders with dementia and meeting them. You're right when you say my life has transformed. I mean I walked into my first nursing home, and I wanted to run because I'd had really some very traumatic experiences in hospitals when I was a child. They put that ether on my face. I don't think they do that anymore, and I struggled and screamed, and yelled, and fought. They finally just gave me shots in my butt. But that smell of health care, of the hospital, I swore I would never, ever step inside a hospital or a healthcare facility, place forever. I promised myself I would never, ever do that. Then here I am. I had been hired to make a website for a guy who was bringing iPods into nursing homes, and he thought that it would be a good, new thing to do, and so I did it. There I was sitting in front of a man, Henry. He was the first one that I really saw the power of music to wake the hidden vitality of a mind, a mind that had lost its capacity to connect with itself and with others. I didn't want to be there. It was very sad for me to see this human being, this shell, if you will, of a human being, who didn't seem to be able to come out of that shell. Then we gave him ... Millions of people have seen this clip. Actually, over 100 million people have seen this clip. Dr. Bob: Really. That's where it's at, at this point. Incredible. Michael Rossato-Bennett: Well, it was actually one of the earlier clips to go viral on Facebook. So it was still back when Facebook was becoming before they put all these clamps and started monetizing everyone's life. It was back when they were giving it away so that people would join, and so it's a completely different animal now, and that's what we're discovering right now, and a very dangerous animal as well. But anyway, so here's Henry, and we give him some Cab Calloway, and I get to experience a human being awakening. This guy, he starts moving, and his eyes light up, and he starts singing. He starts making poetry. When I took the music away, I thought he would turn off like a ragdoll. Dr. Bob: Like a light switch going off. Michael Rossato-Bennett: Yeah. Like the electricity was going off. But, no, there was this residual aliveness and connection, and he talked to me, and he was so beautiful. The whole world saw this. I mean I went to bed that night and my son ... That I posted it. No, I didn't post it. I put it on my friend, Dan Cohen's website, and some kid found it and started spreading it in the Reddit community. I don't know if you know what Reddit is. Dr. Bob: I'm a little bit familiar with it, yeah. Michael Rossato-Bennett: It's a community of young people on the internet, and my son is in that community, and he saw ... He came into my room. He said, "Dad, they're talking about your film on Reddit," and I was like, "Really," and he goes, "Yeah. It's gone from 300 views to 400 views," and I was like, "Oh, my God. That's amazing." Oh, my God, and then we went to bed. We woke up the next morning, and it was at 180,000 views. On the next day, like a million views. It just kept going. But the amazing thing was, for me, I mean I thought we'd discovered the cure for Alzheimer's Disease. I was like, oh, all you got to do is give them music, and it makes their Alzheimer's go away. Then there's, of course, a sad realization that, no, you're just waking up some very deep pathways that are actually spared. They're pathways that are very deep in this elemental brain. Not in the forebrain, which is really the core of I think what I'm working with right now, and that is that when you don't know where to go, sometimes the deepest parts of ourselves hold profound and unexplored wisdom, and I constantly go to those deepest places, like music. Music, by now, it's part of our DNA. It's literally been adapted to our DNA. I mean a child, an infant, a human infant will respond to a beat and other primates won't in the same way. Yes. Dr. Bob: I watched the film a couple times, Alive Inside. I've watched it a couple times. I just watched it again last night. I was, again, just blown away by the little toddler who was conducting. Michael Rossato-Bennett: Oh, my God. Dr. Bob: The natural instinct in him, and he's a little performer. But I agree, you can see it in almost every child from the time that they're able to interact with the world, that they respond to music, and they've been responding to it since they were in utero. Michael Rossato-Bennett: Yeah. Dr. Bob: And that never goes away, unless you lose your hearing. Michael Rossato-Bennett: Which is another enormous problem. About half of the people who staff thinks have dementia, they probably have a little bit, but more, they have hearing problems. It's an enormous problem in elder care. So what are we doing now? At first, I was like, "Oh, my God, let's get everybody who has dementia their music, and let's make that happen." In some ways, that's happening. Michael Rossato-Bennett: It's hard to realize what we don't know, right, or what we didn't know. When I was making Alive Inside, we had so much trouble getting people to try this, to give these elders their music, and it was really a struggle because it was a new idea. But then the hundredth monkey syndrome kicked in a couple of years ago, and now this idea has literally spread like wildfire across the world, and to such a degree that I think ... I was joking with a friend way back then. I said what's going to happen is some day I'm going to say I made this movie about how you can play music for people that's their music, that gives them an emotional reaction, and if they have Alzheimer's it will awaken parts of their brain that have been forgotten, and I said in five years, I have this feeling that people will go why did you make a movie about that? Everyone knows that. Dr. Bob: Yeah. Right, what's so different. Michael Rossato-Bennett: Everybody knows that. We know that, and that's where we are. Everyone in the world knows this now. I mean I had some part to play with it, but it's that hundredth monkey thing. When something is important, and you have a disease like Alzheimer's where there is no cure, and if you have something that can help, it's going to spread like wildfire, and I think that's what's happened. Dr. Bob: Well, of course, it's very helpful for people who have Alzheimer's to try to awaken that and to bring them a sense of joy and connection, but it's, also, incredibly beneficial for people without Alzheimer's, who are just lonely, right? They're just the people throughout the nation, the world, who are isolated or limited in their own homes, or in assisted living communities, or in nursing homes. The ability to give somebody, to connect them with the music that has been meaningful for them at various points of their life, brings joy, brings comfort, brings connection. There's no way to understate the impact. So understanding that I'm curious ... I'm in San Diego. I have a concierge practice, and I take care of people who are in their homes who are dealing with end-of-life issues. They have dementia. They have cancer. They have heart disease. It's a small practice. It's like a concierge practice for people with complex illnesses and who are approaching the end of their life. As part of that, we have integrated therapies, and I have a couple of music therapists who go out. They're angels. They connect with the patients, and we see them flower. We see them blossom. Some of our patients, with these therapies, music, massage, acupuncture, reiki, they go from being bedbound, and miserable, and wanting to die, to get re-engaged with life and getting- Michael Rossato-Bennett: And it makes sense. Dr. Bob: And it makes sense, total, and I go into nursing homes, and I'll see people there, and we just created a foundation. We just got the 501c3 determination from the IRS, so we're ready to make this thing happen. How do we take advantage of what you have created to implement and leverage that in San Diego? Let's talk about how this is actually happening on the ground. Michael Rossato-Bennett: Okay. Well, first of all, you've opened up some really big cans of worms here. Dr. Bob: I have a knack for doing that. Michael Rossato-Bennett: Most of the people who have dementia and Alzheimer's, they are not in institutions. They live at home, and we have a culture that defines people as valuable to the degree that they're productive, and it's deeply ingrained in us. It's ingrained in our religion, and our morality, and our laws, even to the point where we've created lots of meaningless work, just because people want to be working, and the dark side of that, not the meaningless work, but this idea that we have no value unless we're productive, is the elders that you're finding. What is their productivity when they're just sitting? They can see their death, and they probably feel they're not contributing. As a matter of fact, they might even feel that they're a burden, which is a horrible thing for a human being to feel. One of the things that I've been so intrigued about, about people with Alzheimer's, is they forget so much, but it's strange what they don't forget. They don't forget what they used to be. They don't forget that they're having trouble communicating, and they used to be able to communicate, or at least it seems like that to me. You opened up another can of worms, which is loneliness. The UK just appointed a minister of loneliness. 40% of Americans report problems with feeling lonely. We're discovering the dark side of social media, which is this capacity that it has to make people judge themselves, their real life against the sort of phony life that's presented one snapshot at a time and edited and Photoshopped. People feel this kind of not being good enough, and when you feel not good enough, you feel separate, and when you feel separate, you feel alone, and that is one of the greatest pains a human being can ever feel, and that's really ... I had a very hard time growing up and a lot of isolation, and I shut myself down in many ways, and that's why when I saw this older man, Henry, wake up, I was like, "Oh, my goodness. Oh, my God, we can wake up. We can be awakened," and that's what you've described with your music therapists go in, and these people are like, "Oh, wow, yes. There are rhythms of life that I can share with you, and we can sing, and we can do music, and it can even go back into my memory, and oh, I have these stories I could tell you." I decided that the place that I wanted to play with was trying to reduce pain. Like you, as a doctor, you want to reduce- You want to reduce the pain and the struggle, and one of the greatest struggles that I see is loneliness and disconnection. I feel like our culture ... There are things we all need to survive, and to live, and to thrive, and sometimes commercial society says, "All right. You want those things; you got to pay for them." So it puts walls between what we want and what there is, and that's not really the way life works. If you swim in the ocean and you grab a fish, it's not like you paid for it. Well, you swam for it. That's for sure. Or you pluck a pear from a tree. It's not like you grew that tree. I'm not sure that this sort of way we are creating safety for ourselves is working, and I think it's falling apart in many ways, and so, again, I go to the very deepest place. So I developed these headphones that you could give to somebody with dementia, and it has a little hole in it, and you can put their music in it, and you can plug your headphones into their headphones, and so you can listen together, and your eyes can meet, and you can be in the music together, and I thought that was beautiful. Then I made an app so that anyone could sit with another person and try and figure out what is that deep...
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What Would You Do If You Had a Limited Time to Live? A New Film Shares People's Ideas, Kimberly Ouwehand, Ep. 27
09/14/2018
What Would You Do If You Had a Limited Time to Live? A New Film Shares People's Ideas, Kimberly Ouwehand, Ep. 27
The Teal Chair, a film that was nominated for the Future Filmmakers Award this year at Sun Valley Film Festival was the brainchild of Kimberly Ouwehand. Find out why the hospice community outreach coordinator wanted to create this film and how its impacted her life and others. Note: A Life and Death Conversation is produced for the ear. The optimal experience will come from listening to it. We provide the transcript as a way to easily navigate to a particular section and for those who would like to follow along using the text. We strongly encourage you to listen to the audio which allows you to hear the full emotional impact of the show. A combination of speech recognition software and human transcribers generates transcripts which may contain errors. The corresponding audio should be checked before quoting in print. Contact Transcript Dr. Bob: Kimberly Ouwehand is a passionate Community Outreach Coordinator for Treasure Valley Hospice in Nampa, Idaho. When Kimberly got the inspiration to videotape people answering the question, "If you knew you had a limited time to live, what would you do," amazing things started to happen. She collaborated with a local group of high school students, and what came out of it is an extraordinary documentary called The Teal Chair. The film was nominated for the Future Filmmakers Award at the 2018 Sun Valley Film Festival. In this podcast, Kimberly shares how the film came about and how its creation has impacted her life and the lives of many others in her community. I hope you enjoy it. Share with me, the listeners, a little bit about your journey, your working in hospice, and how long have you been part of hospice? How did you get into hospice, and kind of where are you in that, in the course of your career? Kimberly Ouwehand: Well, I started out in clinical. I worked in internal medicine for about 10 years, 10 to 12 years, and kind of fell into hospice, because, and it's kind of a different animal, because you're in people's homes, and you're dealing more with people than you are the clinical side of things, and so I've been doing hospice for about seven years now- Dr. Bob: Okay, and in what capacity? Kimberly Ouwehand: I love it. I do outreach, and communication, and education, so kind of I'm a marketer for it, but I do a lot of hands-on and outreach. Dr. Bob: Got it. Kimberly Ouwehand: A lot of education. Dr. Bob: I think probably a lot of people don't realize ... Well, a lot of people don't realize a lot of things about hospice, right, but- Kimberly Ouwehand: Yeah, that's for sure. Dr. Bob: When they hear "marketer," they probably don't understand how much that involves being with families, and patients, and kind of in the thick of things, because I know I've been associated with hospice for a while now, and sometimes the marketers develop such incredible relationships, because they're the first point of contact for a lot of these folks and people who are in pretty somewhat desperate situations or very vulnerable. It's a really important role to be playing, don't you think? Kimberly Ouwehand: I do. I wish sometimes we didn't ... I mean, I hate to use the word "marketer," because traditionally it's pushing sales and things like that. I find myself making connections and building, like you said, building relationships so that people know, like, and trust you, and they'll call you whenever there's question, and they don't understand something. I feel like my reputation should be built on trust, and I feel like I've done a pretty good job of that so far. Dr. Bob: Good. Well, you've expanded beyond just doing the hospice marketing to take on a whole 'nother realm and project, so The Teal Chair. Tell us how that came about. Kimberly Ouwehand: Well, actually, it started out with just a very simple question. I was getting frustrated that people were waiting way too long to use hospice services. I mean, hospices, it is medical, and palliative and comfort care all at home, but hospice traditionally, especially for the older generation, feels like you're signing off on a death wish. They were missing out on a lot of other services, and I loved that hospice was all about surrounding the family with the patient and making it ... Well, it is one of the most important things you do in your life is die well, but I was getting frustrated, because it's a hard subject to bring up, and people were afraid to talk about it, and doctors were putting it off way too long. I wondered if we'd made it more of just a simple question, "If you knew you had limited time, how does that change the way you live today?" That question seemed a little bit softer, so I thought to myself, I thought, "Well, I have this teal chair," and I was just going to plop it in the middle of some public area and pull people off the street and just ask them a question, record it. It was going to be kind of a short YouTube video, but what happened was, I realized I had no video skills whatsoever, and my son had taken a video class at the high school, and I just liked the rawness of it. I didn't want it to be a production. I wanted it to be real. I didn't want it to be ... I just wanted it to be honest, and so I went and asked the teacher over at Eagle High School if he had a couple students who would do a YouTube video. He said, yeah, he had a couple students, and so he kind of ... I found out later he kind of coerced them a little bit to do this death video. Dr. Bob: They were resistant. You think- Kimberly Ouwehand: That's kind of- Dr. Bob: ... that there was resistance- Kimberly Ouwehand: Yeah. Dr. Bob: ... initially? Kimberly Ouwehand: There was a little ... Yeah, but he got five incredible students to ... Sorry. Incredible students to take part in it. The outcome was phenomenal. It took legs very quickly. Dr. Bob: Yeah. I can imagine if you get the support and you get sort of the passion of youth, and it's a creative process that the school could support. It's one of those things that if someone takes that initiative and puts the pieces in place, people want to talk. Right? They want to talk about these issues, and they just need to, it just needs to be presented to them in a, I guess in a safe way, maybe an inspired way that you're going to do good for other people. That's what I've found. When was the, like how long did it take to produce, and what's the status of the film, and I have a lot of questions, but- Kimberly Ouwehand: I know. It is an amazing story. We started out at a venue called JUMP downtown. It was a great collaboration. They were doing a Day of the Dead event, and I thought it was colorful and fun, and festive. The more I learned about the Day of the Dead, the more I appreciate it, and so I thought it would be visually stimulating for the students, so we went down there, and it just grew into one team did events, did the filming of the event on the outside, people looking at the altars. There was, a Before I Die Wall was set up there. I don't know if you know about that, but it's an amazing exhibit. Then the other half went up into the studio, and they were so excited because it was a professional studio. They had the green, and all the lighting and everything, and we were able to take 22 people off out of the event and bring them into the studio and ask them this question. "If you knew you had limited time, how does that change the way you live?" We interviewed people from eight years old up to I think the oldest we've interviewed that day was about 89. It was just, it was interesting. It wasn't scary. It was thought-provoking, and one thing led to another, and I said, "Well, why don't you submit it into the Sun Valley Film Festival for Future Filmmakers?" We made it instead of just a YouTube, to a 10-minute one that would fit the criteria, and submitted it, and out of about 120 across the nation, we were nominated. There were, I think, 12 nominations. We went to the Sun Valley Film Festival, and then since then, we're, it's going, we've sent it to Washington, D.C., to the National Hospice and Palliative Association, and I'll be submitting it into the American Public Health Association- Dr. Bob: Awesome. Kimberly Ouwehand: ... for educational pieces, because what happened is, it just started this huge conversation, and it's not only about dying, but it's about the different seasons you are in your life and what that looks like and having those conversations, because you never know if you're going to die suddenly or if you're going to have a chronic illness that will take a long time. Dr. Bob: One of the things that came to you when you were just posing the question to people, "What would you do differently, or how would you live, if you knew you had a limited time," did people ask you like, "What do you mean by a limited time? Like are you talking about days or months?" Did that seem to be an issue, or did they all sort of feel like they could take that and speak to it without getting more clarity? Kimberly Ouwehand: That's a really ... I mean, nobody's asked me that question, but some people did, like about how much time, but most people didn't ask. They just thought, "Okay. Where am I right now, and what's important to me?" Like the eight-year-old said he wanted to have a pizza party, and you just realize that the shorter, the younger you are in your life, your life doesn't expand very much, and then the teenagers, the college, they wanted to experience life as much as they could. They wanted to get out and just learn as much about the world and everything around them, and then it seems like, and I'm kind of stereotyping it a little bit, but the career, your middle-aged people would be more focused on balance of life, realizing really what is important, not working so much. The family becomes important... Working so much, the family becomes important. And then older people got it was usually something to do with a memory, revisiting a place or a person, or for sure it was all about family. Dr. Bob: I imagine some of them would want to have a pizza party. Kimberly Ouwehand: Yeah, I mean, and the conversations that's come out of it. When I set it up, I set up interviews, and we interviewed doctors, and we interviewed a couple of professional people. And we interviewed a hospice patient and a family who had hospice. When we were doing the interviews, I would think to myself; these kids are going to think it's stupid, it was a waste of time, they're not going to pull anything off of this interview. But what they did, and pulled, and put together, I was amazed. I thought he knows it's boring; they're not going to think it's exciting, they're kids, you know. But they pulled stuff off that I would never have thought of. Some of the pieces that I thought were really long, I had people come up and say that really spoke to them. So you really can't make it into one topic, it's a super broad topic that hits people in all different areas. Dr. Bob: Yeah, it's so personal. That's part of the idea of how do we spend our time, what's important to us, what do we value most? That's what we're getting at, and everyone has such a unique experience. So, I don't want to put you on the spot Kimberly, but what would you want to do if you knew that you only had a limited time? Kimberly Ouwehand: You know what, that's- Dr. Bob: Did you answer it? Were you interviewed? Kimberly Ouwehand: No, I was not interviewed. And I don't know if I really know what I would do because I feel like my life is centered around that already, that everything I do today, it matters. So I hope that when I do die, if I die suddenly, that people will look at my life as I've lived it, and the things that I've done, that I was nice, and that I was kind, and that I was just a good person, I think. But I don't have any bucket list things. I wouldn't do anything differently, really. Dr. Bob: I agree with you. I'm in that same place, and it really feels good to feel like I don't really need anything else. I probably would want to just be with my family, and have friends. I think about it, you being in the hospice world and me being, caring for people at the late stage of life and many of them in their final days and weeks of life, I think about it often. Like, where am I? Am I complete? Am I good? It's a really gratifying feeling to feel like I'm good to go. I would hate not seeing my son grow up and all these things. But I don't feel like there's anything undone or unsaid at this moment. It feels powerful to me. It sounds like you're sort of in that same place. Kimberly Ouwehand: Yeah, and I agree with you too, in the film, I asked one of the interviewers, what would he do? It was interesting because really, and I can see this with a lot of parents that they would hope that they had left enough of them with their children, that their children wouldn't forget him, and his values and what he was like. I think for parents, and I'm a parent too, but my kids are getting older now and more independent, I feel I've done a pretty good job. But I just would want everybody to know that I did love them. The parent thing is a little hard because you're leaving something that you can't follow up with, I guess. Dr. Bob: Kind of unfinished. You feel like you're not, you feel like there are a little bit more unfinished business and a gap that be left more ... I agree with you more so than if the kids were already adults and launched. Was there anything you can think of that was really surprising, that people said, that you, "Wow, that was really interesting," or crazy... Kimberly Ouwehand: Yeah, there was a lot of things that people that I took away from there, just with a little bit of different perspective. One person said, and I thought this was really interesting, and I think I live my life a little bit differently because of it, was, "If you give up one thing if you focus on one thing, sometimes you have to unfocus on another thing." In other words, you can't have it all. You can't focus on everything because then it doesn't, you don't hit the bullseye, basically. I thought that was interesting because I think sometimes we try to do too much, and we forget that you can't. And it's okay not to do everything. And we can't do everything well. And that's why we have people in our lives. That's why we have people like you doing podcasts that are reaching out to a whole different demographic that I can't reach, and I'm doing my thing that you can't reach. I think that put a new perspective on a stressful job, to be honest with you. Dr. Bob: I'm sure that the gift of being involved in that, I'm sure there were many gifts, but one of them was this new perspective and the wisdom that came out of people speaking from their heart, from this place of a different awareness than they would otherwise have. I wonder if, how many of the people that were interviewed, who were able to share what they would do if they had limited time, started doing more of those things. If the impact is not just on the people who watch the film, but the impact on the individuals who got to reflect on that. Kimberly Ouwehand: I feel like the interviewers that I knew, all said that they had conversations later, because their families ask, "What are you doing?" I don't know about the other interviews, that we did at the jump event, the Day of the Dead event because I kept that anonymous, so I didn't want to put names or tag any links on that. So most of them, I never really heard back from. Dr. Bob: It'd be interesting if there was a way to come back and interview those people again. Kimberly Ouwehand: That would be, I know. Dr. Bob: I think we talked a little bit earlier. I think it's so important to get the conversation about life and death, and preparing, and living intentionally, to the younger demographic, into college age kids, and high school age kids, and even elementary school kids. I just feel like we have become such a death-phobic culture and we don't allow ourselves to promote these conversations. I think it just continues to, this fear continues to escalate as we get older, and no one's having the conversations. Do you feel like the film, I haven't seen it, I'm looking forward to seeing it, do you feel like it's something that could be used in schools to help open up the topic and stimulate conversation and sort of a structured format? Kimberly Ouwehand: I really do. At this point, because it really only got finished, there's a 30-minute documentary, and that really didn't get finished until May. So we'll be doing more screenings, but we're talking with BSU, Boise State University to implement that as part of their curriculum in their nursing program. And then also, with the Boise State Center of Aging and their social workers, we will probably be doing a couple of presentations with that. The biggest resistance that I found interestingly enough is with the medical professionals, the ones that are already doctors and physicians. And that one, I've been very surprised at how resistant they have been in having it be presented as a topic. Dr. Bob: And why do you think that is? Kimberly O.: I think number one, they are busy, and they don't necessarily have the time, or maybe even the energy. I think a lot of times, after you get through medical school, you feel like you're an expert in whatever you're doing so you don't think anything outside of that, except for your bubble, I think. I don't know; I'm not a doctor. Dr. Bob: Yeah, no, well I am, and I think those are accurate. But you said there's resistance to actually them coming out and viewing the film, or somehow allowing it to be shown in different venues? I'm curious, it would seem to me that this is the kind of thing that anybody would benefit from seeing, and watching, and taking the teachings. I apologize on behalf of the medical specialty. Kimberly Ouwehand: Oh no, and I don't mean... Dr. Bob: I do. I find myself doing that. I find myself doing that all the time. I hear people talking about all the challenges they have with the medical- Dr. Bob: On all the challenges they have with the medical system and with physicians in particular, and I mean, I'm diverging a little bit, but I do see all the challenges, and I see physicians being stretched and very narrowly focused, and people suffer because of it. Both from when the medical care, as well as the physicians aren't open in many cases to thinking outside the box and supporting something like this project. Anyway, I do find myself apologizing on behalf of physicians [inaudible 00:22:39] to patients. Kimberly O.: I sound like I'm bashing doctors and physicians, but I really am not. I mean, again, it goes back to the focus physicians who are specialties. They need to focus on that. They can't be looking at every other angle, because they'll lose their focus. They'll lose their specialty. I think too; they are asked to do a lot. They're busier now than ever; the paperwork is crazy. Covering your bases all the time. Healthcare, in general, is just getting more complicated. I don't necessarily feel that they're being resistant, but I do feel that they can only handle what they can handle, and one more thing, even if it is outside of the box a little bit, might be just a little bit ... Until they understand it, I just think it might be harder for them to grasp. Dr. Bob: Right. I think you're being gracious, and that's nice, because these are the kinds of things that, yes, it's important to focus on your area of expertise and your practice and to try to maintain balance in your life, but this is the kind of thing that helps to further our humanity, right? Kimberly Ouwehand: It does. Dr. Bob: I mean, this is the stuff, every physician needs to work on their humanity, on their compassion, and on their empathy. It doesn't matter what you do, what specialty you're in, this kind of project is something that everybody should be at least open to bringing in and supporting. That's my thought. Kimberly...
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Peaceful Deaths for People & Pets, Liz Fernandez, DVM Ep. 26
08/31/2018
Peaceful Deaths for People & Pets, Liz Fernandez, DVM Ep. 26
Hear beautiful stories about end of life. Dr. Bob and Veterinarian, Liz Fernandez, discuss how there are similarities in their end-of-life work that helps people, pets, and families who are dealing with end-of-life issues. Note: A Life and Death Conversation is produced for the ear. The optimal experience will come from listening to it. We provide the transcript as a way to easily navigate to a particular section and for those who would like to follow along using the text. We strongly encourage you to listen to the audio which allows you to hear the full emotional impact of the show. A combination of speech recognition software and human transcribers generates transcripts which may contain errors. The corresponding audio should be checked before quoting in print. Contact Dr. Bob: Liz Fernandez is a doctor who makes house calls. She gets to know her patients and families intimately, and she frequently provides counsel and guidance as her patients head toward the natural end of their lives. In many circumstances, she lovingly administers medication through an IV that allows her patients to fall asleep and die peacefully usually in the arms of their loved ones. What Dr. Fernandez does is legal and acceptable because she's a doctor of veterinarian medicine and her patients are mostly dogs and cats. Although I don't perform euthanasia which is illegal in this country, I am with many patients as they die peacefully after self-ingesting medication that allows them to have a quick and peaceful death. In many respects, Dr. Fernandez's practice is very similar to mine. We both drive all over the place to make house calls, we both develop very intimate relationships with our patients and families, and we both help to guide and counsel as our patients approach the natural end of their lives. In this episode, we share some of the beautiful and some of the challenging experiences that we've had, and we discuss how it affects us to be in these emotionally complex circumstances so often. I hope you find it interesting, informative, and meaningful in some way. Liz, thanks for coming on the show, and I'm looking forward to having you share some of your insights from your really fascinating career. Can you just share with me a little bit what is it like? You have a unique model of practice for a vet, and what's a typical day or typical few days for you? Liz Fernandez: I practice in Ventura County. I work with small animals, and I do house calls, and most of what I do is Chinese medicine acupuncture, so most of my clients, my patients are older. I may see anywhere between three to six patients a day, and I drive all over the county. Sometimes I keep it localized in a smaller area, but my radius is about 60 miles from my house so it could be anywhere in that to give you an idea. Yes, I drive about 30,000 miles a year- Dr. Bob: Which is kind of similar to me. It sounds like your work is in many ways similar to mine; going out and meeting with older patients and addressing the concerns that they and their families have and supporting them. Liz Fernandez: Right, and so I have ... Since I see them ... I see them. I'll spend an hour or so. Each appointment is about an hour unless it's an initial appointment and it's usually about two hours. I may be seeing them once a week, or once every other week, or once a month, so I get to know the clients quite well and as their animals, either dogs or cats, for the most part, start to age and get near to that point when they're going to have to make some decision, we've already had probably at least a few discussions if not more; just some in general and some more specific. It's nice because I do have that connection already with most of the clients that I work with, and that makes it a lot easier to move into that idea of now we may not be trying to get them better, we're just trying to keep them comfortable. Dr. Bob: Got it. So you have the conversations ideally upstream about what will happen when things change, and you're looking now at a comfort-focused end of life scenario. It's interesting because you have an option to help create a very peaceful end of life for your patients that we don't necessarily have. Not necessarily have, we don't have. We don't have euthanasia. It's not legal; it's not available. Fortunately in California now we do have the medical aid in dying through the end of life option app, so there is another conversation that can happen when people are open to it, but everybody is aware that euthanasia is a viable and acceptable option at the end of an animal's life. Liz Fernandez: Yeah, and I find it fascinating because with the animals, we almost more often than not, people demand it for a multitude of reasons; the most common being, "I don't want my pet to suffer." That I totally understand and I agree with, and I support them in those decisions. It's just fascinating that ... And part of it I guess is with people we have more options in terms of supportive care to keep people comfortable and just have somebody there 24/7. That's pretty very challenging for most people. I have had clients that have the ability to have somebody with their pet 24/7 offer doing whatever it is that they need to have done in a home situation. It's not like they're putting him in the hospital or something and not being with them, it's just that they can manage all of those little things like if they can't get up from by themselves that somebody can take them and help them to get up and go outside and if they're not continent then they can take care of that in terms of changing the bedding and that sort of thing in helping them. But that's not the norm. For most people, it's just not an option. What do you do if you can't be there or if don't know someone who can be there or afford to pay someone to be there, what do you do? This other option is available especially when there's no hope of improvement. And so that's what happens. Dr. Bob: It's interesting to think about those scenarios because it's just natural to make the comparisons, right? This is between people and animals, and if you have a person who needs care to manage their ADLs because they can't get up by themselves, they can't clean themselves. That's not enough to justify having their life end. For some people, it may be that the complexities of creating care- Liz Fernandez: The other part of that is that a lot of times, it's emotional least distressful for the clients because they realize their own limitations whether that be physical, emotional, financial. All of those things factor in, and so they wind up making a decision because not that they think it's what is necessary that the animal is that near to death that that's what is appropriate, but because the entire situation is such that they can't handle it. If you have an 85-year-old woman who's got 100-pound dog and she doesn't have anybody else to help or take care of it, she may be healthy within herself, but to be able to meet all the needs of a big dog- Dr. Bob: That's dangerous. Liz Fernandez: Yeah, it's dangerous. Or even somebody who's 50, but they have a bad back. Dr. Bob: That part like knowing that the dog is not or the animal is not necessarily imminent, that close to death, or maybe it's not even suffering that much, right? It may not be in pain, it may just have these limitations, and if the family was able to meet those needs even though the dog is not living its ideal life like a human being who's 90- Liz Fernandez: Right. A lot of people feel like if they can't get up if they can't do those things, that they are suffering, that it is not a life that they would want, so there is that. I would say that with most of my clients they do a really good job of trying to make things work, but on the other hand, most of them have co-morbidities that are ... Like if their back legs aren't working anymore, there's a good chance that they probably have some other issues going on whether that be kidney disease or sometimes some underlying, whether it's cancer or heart disease or other things that make it even more challenging. I honestly can say that I don't find myself in situations where I feel that it's inappropriate. Dr. Bob: Well, imagine if you did then you would find other solution. Liz Fernandez: Exactly. I mean, we each have to do what we feel in our heart is right or for us, but I also try and tell people that there's not necessarily an objective right or wrong. There's a right or wrong for you in this moment, but not necessarily a right or wrong that is somewhere posted in a book somewhere that says that this is the way you have to proceed. Because we have to be honest and compassionate with ourselves as well as in the whole situation. Dr. Bob: Well, I read your book Sacred Gifts of a Short Life: Uncovering the Wisdom of Our Pets End of Life Journeys, and it's really touching, it's really well done and smart. Liz Fernandez: Thank you. Dr. Bob: It was great stories and as I'm reading it, I so often I'm finding corollaries to my life and my practice and my thought processes. One of the things that was really poignant for me is your ... One of the stories, I think it comes up a number of times when people ask how they'll know when it's the right time. For me being a physician who assists some patients through medical aid in dying, there are times when people get a prescription for a life-ending medication, and one of the big questions that they have and that their families have is when will I know it's time? When will I know that it's the time to take this? What their experience or if they're struggling to go through is what your families are dealing with. The difference, I guess the difference in my situation with human beings is that they're the ones making these decisions for themselves, no one can make it for them. And they recognize that when they do take this medication, they may be robbing themselves or ... They're clearly shortening their life, but they may be robbing themselves of some relatively reasonable time, and they don't know. There's no way to absolutely predict what the future is going to hold and sometimes they'll be inclined to take the medication sooner because they're afraid that things will change and they'll lose their ability. They'll lose their mental ability, the physical ability, so there's this back and forth dialogue they have with themselves and questioning. Almost every single time, I've told them, "You'll know when it's time. No one's going to tell you it's time. You're going to know, and when you know it, you know it. There's been a couple of people out of the many dozen who I have been with who have still been slightly, slightly, hesitant, reluctant questioning it and even to the last hours. What I recognize is those people are the ones who have younger children. No matter what they do, separating any moment sooner than they absolutely have to is a challenge. Those are the ones that tend to be a struggle. But like you said, they know when it's time, sounds like your families come to a place where they just know now is the time. Liz Fernandez: Yeah, and I have definitely tried to work with people and something that I do talk about in the book as far as just ... Because even in our profession we have a tendency to, and as a profession, this is so, and I have tried to steer away from this, but we're the ones that like to tell people when it's time, and people like us to tell them oftentimes. What I have found throughout my career is that if there is not complete 100% choice that's made by the person who's involved with the pet, then they sometimes feel guilty, feel pushed, feel resentful that someone else told them that they needed to do something when they weren't ready. I try to avoid that and make sure that they are comfortable and that they are listening to that place within themselves that we each have that I think it's so important not just to listen in this situation but throughout our lives, that we start listening to that, that we begin to trust it, and then we can act on it. This is a situation that really invites us to do this in a wholehearted way, and if we have practice doing that throughout our lives, it becomes much easier. What I ask people to do is to try and get very quiet and feel into their body and have someone else perhaps even present with them and feel into their body with the idea that, "I'm going to euthanize my pet today," and then just feel what happens to them. The person who's with them can watch whether there's a tenseness that happens, whether there's a clenching or a contraction, or if there's a relaxation and opening up because the body is reacting to the deepest truth. I think that can be very helpful. I had had a couple of situations where I've been with somebody as we move through that process and I've reflected to them what I have seen, and in one situation I said when you get your poll body relaxed when you thought about just going ahead and letting Sophie go today. Then we talked a little bit longer because it didn't seem like she was ready to go ahead with that. But what I told her and what we talked about was that it really was okay that she felt that way. That it was getting really challenging and very difficult to take care of her. When she actually accepted the idea, so her body was just asking, inviting her to become okay with that as a possibility, and recognizing it and forgiving herself for having that feeling, for feeling like I can't do this another day. And yet there were some things that we could try, and we wound up trying them. And then would about two weeks later, things have deteriorated further, and she was very clear, and she had no question. But what her body actually was doing when she relaxed was not saying that it needed to happen today as much as it was saying that she needed to accept that as a possibility and that it was okay that she felt the way she did. Once she became okay with this feeling that, "I can't do it anymore," she actually found the strength to be able to go on a little longer. But he had to accept that within himself first. Very interesting. And the opposite happened. Both of these situations happened within probably two or three months of each other, and the other situation was that the lady just did not want to euthanize her pet. And she knew. I mean, there were all sorts of signs from the universe, and from her husband, and her husband had a dream, and all of these different things and she just knew, and he was really not doing well, but she just couldn't let go. I said to her because again when we went through the process, not doing it is what gave her the most relaxation in her body. And I said, okay. Consciously and in her brain, I said, "Be okay with that. It's okay that you can't do it today. Because sooner or later if you don't do it for him, he's going to do it himself." And he's not really suffering; he was just in a point of not really eating anymore, but just not moving. You know what I mean? He wasn't in any kind of excruciating pain that we needed to address or anything. And once she could finally just say to herself that it was okay, she could forgive yourself for not being able to do what she really felt was the best interest of her pet. Because she just loved him so much and just, it's like ... When she completely surrendered to that, she sat with him for a few minutes and then she said, "Let's go ahead." Dr. Bob: It's beautiful. Liz Fernandez: Yeah, it's quite fascinating, but again if you start to listen deeply and can accept whatever happens or whatever wants to happen and trust it, then I think that we do have the answers within ourselves to make these difficult decisions. Dr. Bob: Actually I appreciate that you shared that. Because on a couple of levels, I think what you're sharing is so vitally important. On the one hand, I think that's what we need. Everybody needs ... Moving to the human realm, we all need to be able to go deep inside and become comfortable with the idea that one day we're going to die. Liz Fernandez: Yes, just have a good relationship with death. Dr. Bob: Yes. And not to say, "Okay, I'm ready to die." Not to say that I've got everything prepared or that emotionally, financially, legally, or whatever. But to just understand and feel this sense of acceptance and a sense of calm about it, and if you can't get there, then the work needs to revolve around figuring out why what is it that's keeping you from feeling that sense of acceptance or calm about it. But once you can get there, then everything is a bit easier, I think it's brighter, a little bit more ... It's almost like it's bonus time. Now I've accepted this; there's my ultimate endpoint, now let's get on with life. Liz Fernandez: Right. Part of why I wrote the book was not only just for clients, but for practitioners and then just the general public. Because the whole idea is what my book tries to talk about and what I'm passionate about is just that. It's the idea of having a relationship with death that makes it less scary. Be able to embrace it, to dance with it, to recognize it everywhere. Things are dying all the time. We push it away so much we deny even the idea. No one wants to say the word. It becomes this big scary boogeyman and the big monster under the bed. Dr. Bob: It does not have to be that way. Liz Fernandez: That's a cultural thing. It's like can we just start just have a keep the conversation going. Dr. Bob: And I think we are. I mean, that's part of what we're doing, right? That's why we have this ... That's why I have a life and death conversation. There are people like us who are not only comfortable talking about it but shine when we're talking about it. Because it's like being part of a club where you understand where this is coming from, where this conversation comes from. Not because we're morbid or want to talk about dying or don't love life, it's because we do love life. And we love life enough to say, "And one day this is going to end." And that's going to be okay too because that's We can maybe by doing this, by having these conversations and people listen to it and they think, "Wow, that's an interesting way of looking at it." Liz Fernandez: Broadening the perspectives because there is a sacredness to it. There is this deep sense of ... I mean, it pulls us into silence. I had the opportunity a couple of weeks ago to speak to a group of high school students who are interested in veterinarian medicine, and this is the topic we talked about. We talked about ... I just described the state that one gets into when one watches a sunset, and you're just completely present. That's kind of what meditation is, but it's also what happens when we are communing with death if you will. I mean, if we're present with someone who's dying, and that silence, it's just so full. There's so much life and love there. Dr. Bob: And sadness, right? There's loss, there's all of it, but it's the whole continuum. Liz Fernandez: It's all of it, exactly. And that's the other thing that I try and really focus on. It's the idea that it's not either or. You don't have to deny anything. You don't have to deny that you feel devastated or just horrible for whatever the experience is, and at the same time at some point, everyone who's ever gone through a grieving process knows that there is this ... All of a sudden flash will get in your head, and you'll start smiling and laughing when you're thinking of this person who you miss so dearly. You're feeling it all. That's what I mean I think it's important. That we allow ourselves to feel all of that. It's like clouds. They come, and they go, and your feelings and your emotions are going to be all over the map as part of the grieving process. One of the [inaudible 00:26:09], a friend of mine recently who passed away. She was very aware, and she lived so fully. I have another client whose dog is ... They called me a...
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What Death With Dignity Means to You and Your Loved Ones
08/17/2018
What Death With Dignity Means to You and Your Loved Ones
For decades Kathryn Tucker has been supporting people's rights to have a peaceful and dignified death. She's fought to protect the medical aid in dying laws. Listen to learn more about the End of Life Liberty Project. Note: A Life and Death Conversation is produced for the ear. The optimal experience will come from listening to it. We provide the transcript as a way to easily navigate to a particular section and for those who would like to follow along using the text. We strongly encourage you to listen to the audio which allows you to hear the full emotional impact of the show. A combination of speech recognition software and human transcribers generates transcripts which may contain errors. The corresponding audio should be checked before quoting in print. Contact Dr. Bob: Katheryn Tucker is an attorney who's dedicated almost 30 years to supporting the right of individuals to have a peaceful and dignified death in a manner that's consistent with their values. In this work, and in this effort, she and I are very aligned. She helped initiate and protect the medical aid in dying laws in Oregon and Washington State as well as California, and has continued to be a fierce advocate for this right on a state and national level. Katheryn's a graduate of Georgetown University Law School, and she's currently serving as the executive director of the End Of Life Liberty Project, which is now based at the UCSF/UC Hastings Consortium on law, science and health policy. Katheryn is recognized as a national leader in spearheading creative and effective efforts to promote improved care for people who are seriously ill and dying. And on this episode, Katheryn is discussing her passion for supporting and protecting people's right to a peaceful and dignified death. As well as her views on the current laws in place in certain states that allow terminally ill people to access physician aid in dying or otherwise known as death with dignity. I personally found this conversation to be highly informative, a bit provocative and incredibly interesting. I hope you do too. Well. Katheryn, I am so happy to have this conversation with you. And I really appreciate you taking time. I know you're a busy lady, and involved in lots of important things. So, again, thanks for sharing your time and your expertise with my listeners. Kathryn Tucker: Well, thank you for having me. My pleasure. Dr. Bob: Yeah. I feel like we have so many different things that we could talk about that are important, but I'd like to start out, you're a passionate advocate for people having the most peaceful, dignified end of life as am I. We have we approach it from different angles, but with the same kind of general mission, which is to allow people to be self-determining and have more control. You've been doing this for a long time, how did you become such a passionate advocate for this? Kathryn Tucker: I started doing this work when I was a brand new lawyer back in 1990, and I was the outside counsel to the first initiative campaign in the country to put before voters the question of whether dying patients should be able to receive physician assistants in dying. So, my work started that year with that campaign. I did become passionate about empowering patients with information and choices as a civil liberty, and one of the most profoundly personal decisions a person can make in a lifetime. Dr. Bob: So, was this something that you ... Is this a direction that you chose at that time back in 1990, or did it just fall into your purview based on where you were working and what you were doing? Kathryn Tucker: I was a young lawyer in a big law firm in Seattle, Perkins Cooley that supported its lawyers taking on pro bono work. So, I actually was casting about for some public interest work and came upon the campaign, Washington Citizens For Death With Dignity, and just volunteered to provide some legal support. Right at that moment, the initiative was being drafted. So, I got involved with that drafting. Then we had a long campaign that involved the defense of the ballot title in court, that's the words that the voters will see when they go to make their vote and is very important to the outcome of the vote. So, we had litigation about that. We had litigation around false political advertising because some of the claims that were being made about what the law would allow were so outrageously wrong that we challenged those in court. So, it turned out to be a year and a half working to get this in front of the voters. And it very nearly passed even though it was quite a broad measure, much broader than what was passed in Oregon a few years later. So, my work on that then rolled forward into doing some work on the Oregon Effort in 1994. But also the orchestrating of two federal lawsuits that were seeking to have the federal courts and ultimately the United States Supreme Court recognize that the choice of a dying patient for a more peaceful death with physician assistants was an interest that should be protected by provisions of the United States Constitution. So, that work then got underway, and 25 years later I'm still doing this role. Dr. Bob: You're still doing that. Do you ever wonder what would have happened if you never were asked to participate in that back in 1990- Kathryn Tucker: It would probably have been a less interesting and satisfying career. I think that this question which is that the intersection of law, medicine, bioethics is very fascinating, and there are so many perspectives and so many complexities that 25 years later it says interesting as it was when I first got started. So, I'm very grateful and privileged to be able to do this work.Dr. Bob: I completely get that. This work has been part of my life only for the past couple of years since the end of Life Option Act passed in California, but it's so complex, and it makes me feel so, I guess, alive and invigorated to be able to provide such a high level of support at such an incredible and vulnerable and intense time in people's lives. Kathryn Tucker: Right, absolutely. Dr. Bob: So, I commend you, and you're partly responsible for what's transpired and what's now allowing people to have this kind of control and peace. And so I thank you for all the efforts that you've put in. I know that you've gone way above and beyond, you've created a nonprofit to additionally provide support. So, 25 years after you began, what are you currently focusing your energy and attention on right now? Kathryn Tucker: Well, one of the things that I constantly try to do is have some perspective on whether the efforts that we have been engaging to expand end of life liberty are actually achieving that. My current view is that while the work we did with the Oregon Death With Dignity [inaudible 00:07:50] which became the first statute to permitted and dying, enacted by voter initiative in 1994 by the Oregon voters. But then subsequently followed in many other states that have essentially what's referred to as the Oregon model. Which is a very heavy-handed government regulation of the practice of medicine with regard to aid and dying. That very heavy-handed government regulation may have been appropriate and necessary in 1994 when no state had an open practice of aid and dying. And there were many unanswered questions about how an open practice would impact patients and the practice of medicine. So, the Oregon enactment was designed first to actually be able to run the gauntlet of the political process. So, it needed to have a tremendous number of what are referred to as safeguards. You'll recall that the Oregon measure followed a failed attempt in Washington State in '91, and then a failed attempt in California in '92. So, by the time we were working in Oregon in '94, it was the kitchen sink approach to protection, regulation and safeguard so that the contentions of opponents that this would be dangerous could be effectively combated by showing how many safeguards, in fact, were in place. So, that's the backdrop of why the Oregon measure has the multitude of restrictions, requirements, and constraints that it does. Following Oregon's enactment. Other states adopted virtually the same but in some cases even more burdensome measures. Because at that point they could say well, the Oregon approach has worked well. So, everyone in this forum can feel comfortable voting for this. That's been effective. We saw Washington State and Vermont and Colorado and California and Hawaii adopt what are called Oregon style aid in dying measures. The problem is we're now more than 20 years later; we've got abundant data that shows who chooses aid in dying and why, and how it impacts patients in the practice of medicine. So, we now know a lot more than we knew in the early '90s. I think it's time to move away from the Oregon model because what we have also seen, and a multitude of studies are starting to report is that very heavy-handed government regulation comes at a tremendous cost. It creates barriers to patient access, which I know you've seen in your practice. And it creates tremendous burdens for physicians, which of course you're also aware of, which means few doctors are willing, and patients find difficulty finding doctors, and it's very problematic. So, the advocacy that I am embarking into now is really to move the practice of aid in dying into a standard of care approach, which is how all of medicine is practiced Dr. Bob: Awesome. You are really gifted at articulating all of that, and I think you did a great job of sharing how things got to be as they are today. Could you go a little deeper into what the heavy-handed government regulations you're referring to are? Kathryn Tucker: Sure, and I know you know them very well. Dr. Bob: Right? I want our audience to be aware of what we're talking about. Kathryn Tucker: Right. Well, so, on the eligibility side, and I don't really quibble with this because I think this is where our culture accepts the practice of aided dying. The patient must be diagnosed with six months or less life expectancy. They must be mentally competent. So, this is a decision that can only be made by a patient who has the ability to make their own informed medical decisions. Then the physician involvement is limited to providing the prescription for medication which the patient can self-administer. Those three bright lines, terminal illness, mental competency and patient self-administration, I think are what this culture accepts and are appropriate however the practice is conducted. Whether it's subject to statute, or standard of care. But then beyond that, what these regulatory statutes require is a tremendous amount of process and procedure. The patient must make multiple requests. It must be oral and written; they must be witnessed. They must have a minimum 15-day waiting period, although in the case of Hawaii that's now been extended to a minimum waiting period of 20 days. There's a tremendous amount of requirement for the collection and recording of data. And all of that is apparent to the practice of medicine. And most medical practices, even practices that result in the death of the patient and in fact, can be anticipated to precipitate the death of the patient are practice subject to standard of care. Which means the practice and procedures that govern are those that have been shown to be most efficacious and to deliver the best care to the patient. That is something that can evolve over time as clinicians discover what is most efficacious. So, it's an evolving standard, which best serves the patient. Here, just to bring it into a concrete example, I think we can all see that a 15-day mandatory state regulated waiting period causes a tremendous amount of suffering that standard of care would likely not impose. Clinicians free to determine whether there should be a waiting period would likely have it be much shorter. They might say to the patient, and Dr. Bob, you can say what you might say. You might turn to your patient and say, "Why don't you sleep on this, and we'll talk about it at our visit next Tuesday, or we'll talk about it tomorrow on the phone." It wouldn't be an additional 15 days. Because remember, patients come to this choice when the cumulative burden of suffering is so horrific that they feel that achieving death is their best option. So, they're in tremendous suffering when they're ready to make that choice, and then mandating waiting another 15 days, which many patients don't even live long enough is just cruel. Dr. Bob: Agreed. I completely agree. So, that does seem to be the most significant burdensome aspect. It's interesting, I hear about how often people have these multiple struggles trying to find a physician who will support them. Once they do find somebody, often it's because they're part of a hospital system, and they've been referred to so and so, or their own doctor has finally agreed to. But they also have these processes in place that mandatorily referral to an ethics counselor or a psychologist or psychiatrist even though they've never had any hint of mental illness throughout their entire life. But when people find me, and I know there are other physicians, Lonny Shavelson, and there are other physicians who are truly focused on providing support and honoring the patient and not primarily focused on protecting themselves and worrying about the liability or the hassle factor. The process really can be very streamlined. It doesn't feel in many cases for the patients that we care for, overly burdensome aside from the 15-day waiting period. So, I know we've had conversations about that- Kathryn Tucker: You are to be commended for your willingness to put up with so much procedure. Because doctors are busy people, and to create additional burdens on the clinician as these statutes do, well beyond what would be done for example, with the provision of palliative sedation, of course, is another medical choice that patients can make, and physicians can provide. Where death is the certain outcome after some considerable period of time, while the patient essentially dehydrates to death without any of that paperwork, without any of that reporting of data. It just happens within normal medical practice, which I think is where most physicians are comfortable practicing. That's a difficult enough job as it is without layering a tremendous additional level of process procedure and second-guessing on top. Dr. Bob: Yeah. I'm in agreement. What I've come to discover since becoming willing to participate and support patients and families is, I have concerns about this becoming a more ... About having a lot more physicians support participating. I want patients to have easier access, and not struggle to find the support that they need. But knowing how much time and energy goes into providing that support, the questions the patients have, the families have, the multiple, multiple phone calls and emails and communications as this is moving forward, I'm very concerned that most physicians in a traditional practice don't have the mechanism or don't have the wherewithal to provide that support. So, we would certainly have to be able to address that. Because otherwise, people are going to be struggling not having the information they need, not having the support they need. What are your thoughts about a process that can be put in place to ensure that that's happening? Kathryn Tucker: Well, I certainly think that clinicians who are willing to expand their practice to include aid in dying are going to be those that are highly motivated to respect their patients autonomy and to want to make sure that the patient is able to make the journey to death in the manner that is most consistent with their very personal preferences and values and beliefs. So, this is a fairly unusual subset of clinicians that will feel strongly about that. I think that they will take the responsibility of ensuring that the patient's request is voluntary and considered and enduring. I think they will take that all very seriously in a standard of care practice. Those clinicians will provide it. So, it will self-select. Certainly, not everyone is going to make this part of their practice. And we know that, for example, 20% of surveyed physicians in a New England Journal of Medicine survey were unwilling to discuss palliative sedation with their patients. That's an option that is clearly accepted by both law and medicine, and it should be available to patients in all 50 states. Yet, a fifth of doctors don't inform their patients about it. So, we know that physicians self-select what they're willing to provide in terms of care, and not all physicians would provide aid in dying. I'd like to see the model that we've been able to open the door to in Montana, considered by other states. And that's the one state that now has nearly a decade of aid in dying practice subject to standard of care, not subject to statute. I think that that model should be more closely looked at by other states and by advocates. Because it's much more normal in the practice of medicine than to have statutory governance. Dr. Bob: Yeah, it's an interesting model. Do you know how ... Of course, Montana is not a very populous state. Is there any data on the numbers of patients that are taking advantage of that right in Montana? Kathryn Tucker: Right. Well, you asked the question that we all ask, and the answer is no. Which is as it should be, because, absent a statute, clinicians are not required to collect and report data to a state agency, which then publishes the data for public review. So, we don't know the answer to that question. We do know anecdotally, from talking to clinicians who have embraced aid in dying in their medical practice, that some clinicians are practicing, and some have been very public about that, and have been willing to talk about their experience in other forums, including in lawsuits, trying to expand and have life, liberty and other states. So, we have the experience and the testimony of participating clinicians, but we don't have survey information. And in fact, I've been working with some researchers who do research into the practice of aid in dying in various states and published studies that you'd probably read about that practice. To encourage them to embark into the kind of surveying that would allow us to answer that question in Montana. It's really, they're excited to do it, it's a question of finding the funding to support their work, and we are also planning a symposium in the state of Montana to bring forward the experience there, and hopefully interested clinicians and patients and health policy researchers from around the country will come to that symposium to learn more about the Montana experience. Dr. Bob: Great. Do you know when that's going to be happening? Kathryn Tucker: We have just chosen the date. It will be September 6, 2019. Dr. Bob: Okay, so about a year plus in the planning. Sounds good. I'll put that on my calendar. Kathryn Tucker: Great. Dr. Bob: Another model that I find interesting, we were talking about the concern about physicians, if more physicians were participating in supporting aid in dying, do they have the wherewithal to truly support the patients? I did an interview with Robert John Keir in the Netherlands, and we talked about the model there, which of course allows euthanasia, in a much broader scope. But they allowed physicians to serve as an attending physician without any specialized training or background. But every patient is required to be seen by a specialist in this infield. There's a select number of physicians who are trained to be able to do the assessment and to provide the guidance and support. So, they provide support for not only the patient but for the physicians who have the relationship with the patient. So, what it does, is it assures that every patient has the adequate support that they would...
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Where You Can Go To Deal With Death, Bill Palmer Ep. 23
07/20/2018
Where You Can Go To Deal With Death, Bill Palmer Ep. 23
Bill Palmer has dedicated much of his life to helping people get comfortable with death. Hear why he has hosted more than 75 Death Cafes and what he's learned from them and the people who attend. Note: A Life and Death Conversation is produced for the ear. The optimal experience will come from listening to it. We provide the transcript as a way to easily navigate to a particular section and for those who would like to follow along using the text. We strongly encourage you to listen to the audio which allows you to hear the full emotional impact of the show. A combination of speech recognition software and human transcribers generates transcripts which may contain errors. The corresponding audio should be checked before quoting in print. Contact Transcript Dr. Bob: My guest on today's podcast has been on a really interesting journey over the past several years. Bill Palmer is a successful executive coach and management consultant who lives in Oakland, California. After a personal experience with a loved one who died while being supported by an excellent hospice organization, Bill was inspired to come home to Oakland and start volunteering with other people on hospice. And then he began hosting Death Cafes. To date, Bill's hosted over 75 Death Cafes for members of his community up in Oakland. If you're not familiar with Death Cafes, you will be after listening to this very informative podcast. Bill has had incredible insights through many, many hours spent with hundreds of people openly discussing death and dying. From the very practical aspects to the emotional and spiritual issues. On this podcast, he shares some of the insights that he's gained with us. I believe this can help you become more comfortable having those meaningful and really important conversations that you should be having with your loved ones and with yourself. I hope you're as grateful for these insights and reminders as I was, as I was speaking to them. Bill, thank you so much for being willing to spend some time with us and share a bit of your experience and knowledge with the listeners. Bill Palmer: Sure you're welcome. Dr. Bob: You have an interesting life, I'm assuming. For some reason, you have chosen to dedicate yourself to helping people get more comfortable talking about death. How did that come about? What was the ... My understanding is that you're a business coach and that you're coaching people through different aspects of business and leadership. How do you become a Death Cafe leader from that place? What was your journey? Bill Palmer: The journey really started actually, quite a few years ago when my mother was admitted as a hospice patient in Florida. She received incredibly good care at the Hospice of Palm Beach County where she lived at the time. As a business coach, and as an organizational development consultant, I was struck mostly by the wonderful care that she and my family received, but I was also struck by the incredible business alignment and sense of higher purpose in that hospice. At the time, I thought it was unique. And since then I volunteered in several different hospices. I found that to be more the rule than the exception. Somehow, rather, and I don't recall exactly how I came across a guy named John Underwood who lived in London, and who was the founder of Death Café. It just seemed like a great idea to me at the time. I became a hospice volunteer because I wanted to give something back. It didn't especially require any special skill to be a hospice volunteer. Sometimes just sitting with somebody, visiting, doing a respite visit something like that. But Death Cafe appealed to me because I could bring to bear some of the skills that I feel I have in terms of leading groups and speaking with individuals in an open and honest and kind of free, willing environment. So, I decided I would take John's advice and example and do a Death Café, which is actually pretty easy to do. Dr. Bob: You have the model, right? He shared the model with you and ... From my understanding ... Tell us what a Death Cafe for people who don't really understand it. Bill Palmer: Well, first of all, there's a website called www.deathcafe.com, and it gives a full explanation not only of what a Death Cafe is but how to start one if you want to in your own community. A Death Cafe is simply a free and open ... Free meaning there's no fee to attend, a group meeting of people, whoever wants to come, who want to talk about any aspect of death that interests them. That could be anything from where do I get a will to, deep philosophical and religious concerns to, what are the regulations about scattering ashes to, my companion died 40 years ago and I'm still grieving to, my spouse died last week and I feel nothing. There's an incredible richness of experience and this is going to sound really strange, but they're actually fun. There's a lot of laughter in a Death Cafe. Some of that laughter is just nervousness about speaking about a taboo subject, but some of it is just appreciation of life. If I could make one generalization about the Death Cafes, people leave feeling strongly that what they're doing in their lives right now, whether they're close to death or whether they feel like they're very far away, takes on an added significance if they can find a way to accept the fact that we're all going to die. One thing that surprised me about the 75 Death Cafes I've led is the number of people who apparently, intelligent, responsible, normal people who actually don't really think they're going to die. Dr. Bob: They certainly act like that, right? Bill Palmer: Yeah. Like I said, responsible, taxpaying, voting, civic-minded people who don't have a will, who don't have an advanced care directive, who've never discussed their wishes for their care towards the end of their lives. It is just an indication of the power of the taboo that people who in most every other aspect of their lives behave quite responsibly. But in this one area, even after they see and hear about the chaos that ensues if you die without a will, if you die without an advanced care directive, if you die or become disabled, even after they hear stories about that, it doesn't seem to get them. Dr. Bob: Do you think that people are denying that they're going to die or that they just think somehow things are going to work out? They just don't want to ... They don't feel like they need to do the preparation because things just have a way of working out? Bill Palmer: Well, I guess on an intellectual level, of course, they know they're going to die. But I think on some kind of emotional level, like a child, they don't really believe it. But I think it's probably a little bit of both, is just if you've never sat down and filled out an advance care directives, and you're using a good one, I'd ask some pretty tough questions. For example, if you don't really know what resuscitation is like, you might think sure, resuscitate me. And if you find out what resuscitation is actually really like in many cases, you might decide something very different. Dr. Bob: Right, in most cases. I think people, they watch TV shows, they watch ER or St. Elsewhere, these shows that depict somebody having a cardiac arrest. They do a couple of things and then a few seconds later they sit up and everyone's relieved, and it doesn't depict the absolute horror that ensues when somebody's doing chest compressions and ribs are breaking, and there's virtually no chance of survival in the vast majority of cases. So, yeah, are those kinds of things discussed even at that kind of graphic level? Are people open to hearing those kinds of things when they show up for the Death Cafes? Bill Palmer: Yeah, I think so. Anyone who leads a Death Cafe, including myself, leads it with a very light touch. There's no schedule of activities. There are no small groups. There are no icebreakers or anything like that. It's just open conversation. If somebody brings that up, people listen, and I think people are affected by it. There is a great deal of information that gets shared. A common statement is, my family won't discuss my death with me. I will or someone else in the group will say, "Well, here are some great resources." The conversation project, for example, can give you some tips and guidelines and do's and don'ts for, how do you have this conversation with people that don't want to talk about it? It's not an easy thing. So, I think there's that and there's a sense of comfort and community and that people find out well, gosh, I'm not alone in this. Other people feel this way too, or are afraid of the same thing, or have had a similar experience. I think it's comforting to people. Dr. Bob: Yeah. Oh, it's rich, and like you say, it's a safe space. Interestingly, I haven't been to one for a bit, but when I went to a few Death Cafes here in San Diego, and they did break up into small groups like four people and then there were some sample questions to stimulate conversation. There was a little bit of discussion as a group. I think as I remember, representatives from the small groups talked about some of the insights that came out. But I felt like there were so many people in the room, there were maybe 50 to 60 people in the room, and I felt like we missed getting the insight from more people in that space. So, I feel like maybe the open format like you're describing could be even more effective if everybody who wants to speak has a chance to. Bill Palmer: Well, anyone who's interested in starting a Death Cafe can read on the Death Cafe website, very specific and clear instructions for leading one. I think that if someone is fortunate enough to get 50 or 60 people at a Death Cafe, that's nice, but I think it's an unwieldy number. I know that I've always limited the attendance of Death Cafe to 20. Even at 20, it can be a bit unwieldy. So, I think the smaller group dynamic works. I know I was asked to help with a Death Cafe that was being sponsored in a retirement community here in the East Bay in California. 40, 50 people showed up. Yeah, we split up into small groups, but it just wasn't as satisfying. It is just really difficult to manage. If anybody's considering doing it, I would strongly recommend that you limit the attendance. You can use a website like Eventbrite which is a free ... It's like Evite, or Eventbrite, one, they're pretty much the same. You can invite people to purchase free tickets, or just sign up for registration. Then you can limit it to 15 or 20. Dr. Bob: How did you go about finding a location? Because if you're there's no fee, I'm assuming you've done 75 of these, I'm assuming that you're trying to avoid spending a lot of your own money on these. Is there money available from any organization to help defray costs of putting these on? Bill Palmer: Actually, to be specific, The Death Cafe, you can charge a fee if it's to reimburse the cost. For example, if you rent some space or if you provide some refreshments, you can recoup the cost with nominal fees. I was very fortunate. There's a funeral home here in Oakland called Chapel of the Chimes. They have a long, long history of community involvement and a beautiful setting. They have a lovely acreage and their buildings are fantastic. They have a high commitment to community service. So, I called him up and I said, "Would you sponsor a Death Cafe? I.e. give us free publicity, give us free space?" They said, "Yeah, we'll do that, and we'll also provide coffee and cookies and donuts for you. Because it's right in line with the way that we want to be involved with the community." Death Cafe Oakland gets free space and a little bit of free publicity. They get 20 people a month walking in there who maybe otherwise wouldn't know about Chapel of the Chimes. They've just been great to us. Churches are likely spots, community centers are likely spots. Synagogues are likely spots, and funeral homes I think. There's an obvious disincentive for certain people, well, I don't want to go to a funeral home ever for any reason, but it's worked for us very well. Dr. Bob: Right? Well, my sense ... So, a great alignment, it seems like a great partnership as long as everybody's approaching it with the right intention, and it's comfortable. You don't want to partner with somebody who's going to be pushy and pushing their services. It sounds like that's clearly not happening. But the people who are coming to Death Cafes are probably the same people who don't mind walking into a funeral home. Bill Palmer: That's probable. Dr. Bob: You've got a bit of a self-selected group. Well, that's helpful. I appreciate that. So, you've done 75 of the Death Cafes. When was your first one? Do remember- Bill Palmer: March, of 2013. We actually had our 76th last night. Dr. Bob: Fantastic. So, you've spent 76, and then they're probably what, an hour and a half to two hours each? Bill Palmer: Two hours, yeah. Dr. Bob: Okay. You've had a lot of time to hear people sharing. I'm sure that you are well aware of some of the gaps and the challenges and the struggles around living and dying. Can you share some of the top insights that you've gained from the experience, and offer some of those to the listeners? Bill Palmer: I've thought about this a lot. Something that jumps out at me is that how we die in America is largely a function of race and wealth. Death Cafe in Oakland or the part of Oakland that we're in is a very different thing than a Death Cafe might be in a very different part of Oakland. That jumps out at me constantly. Another thing that jumps out at me is, we live in a secular world, many of us do. Certainly, here in California, at least in the East Bay, in the Bay Area. I'm not sure that that's a bad thing but another thing that jumps out at me is that the loss of rituals, of customs, and community, most religions supply ... Things are taking their place but if you look at the Jewish religion, or you look at Islam, or you look at Catholicism, really any of the major world's religions, Hindu, there are very specific rituals and customs around death that are a comfort, and that allow people to navigate or at least help them to navigate through what is painful and difficult. So, I think that a lot of the interest in Death Cafe and in the conversation around death, it's much larger than Death Café, is around some of the loss of those rituals and the lack of replacements for them. Dr. Bob: I started to write down the statement because I'm sure it was going to be something really valuable. Could you finish the statement, the loss of rituals, customs and community around the time of death has- Bill Palmer: Left a vacuum where people are alone. They don't have a way to navigate through that first, terrible few days, weeks, months. I just think it makes it harder. Dr. Bob: It's a vacuum, I can see that. So, people were coming to the Death Cafes in part to help to fill that void, that vacuum, or because they're afraid that that will be there? Bill Palmer: Yeah, I think on two levels. One is simply, what are rituals that I could participate in that I no longer an observant and fill in the blank. Catholic or Jew or Muslim or whatever. There are rituals that people have created in this country or reinvented in this country about dying at home, and how to care for the body of someone who has just died, against the medicalization and hospitalization, and institutionalization of death. So, I think it's both those things. Some of it is just information. What am I supposed to do? Where can I go to find some community around it? Dr. Bob: The practical issues that can really lead to a lot of stress and anxiety if they're not addressed or planned for. Bill Palmer: Yeah, exactly. Dr. Bob: Any other big insights that are jumping out for you? Bill Palmer: Unfinished business. I can't tell you. I haven't done an exact count, but probably in the 75 Death Cafes, we've had, oh gosh, 500, 600 people come through there. What I constantly hear is five years, 10 years, 20 years after someone died, that the unfinished business that I had with that person haunts me. I never forgave them, or they never forgave me. I had a sister, brothers, spouse, father, mother, son, daughter, and I never resolved what it was that drove us apart. To me, unfinished business in our relationships is the gasoline that gets thrown on the fire of grief. It just makes it all that much worse because you can't fix it once they're gone, they're gone. So, that's something that I hear over and over again. Dr. Bob: Do you offer resources ... it seems to me like ... I think one of the things that felt a little bit dissatisfying for me about the Death Cafes, was that there were people who are clearly looking for support and needing additional help and resources, and there wasn't ... Because it's not promotional, you're not giving out pamphlets or directing people specifically to resources. It feels like there would be an opportunity to bring in some experts and to have people bring in their specific questions to get that kind of guidance. What's the thinking on that? Bill Palmer: Well, I think the thinking is, and it may be flawed is that, above all, John Underwood the founder of Death Cafe did not want to commercialize. I've had any number of invitations from perfectly respectable, fine people who have a book, they have a program they have this, that or the other thing, and they want to come in and in effect, make a sales pitch. Under normal circumstances, I'd say that'd be fine. But I think it leaves us open to having to vet them, having to know what they say. My solution has been to, I've created a Facebook page for Death Cafe Oakland. I post resources there. If somebody says, "Well, gee, how do I start this conversation with my spouse?" I can mention the conversation project. I can also tell people to look on that Facebook page, which is open to the public. You don't have to have attended Death Cafe Oakland to see it. You can find wills, you can find an Advance Care Directive. You can find lots and lots of research. So, I agree with you that the one thing I do specify is that, and I say this at the beginning of every Death Café, is this is not grief counseling. So, if you're grieving, what I say is, please talk about if you want to, we will support you, but it's not grief counseling in the sense that I personally cannot offer you continuing support. Dr. Bob: Yes, it's not a support group. It's a forum, right? With a lot of people coming for different reasons? Bill Palmer: Right. I can refer them ... They can do a Google search as easily as I can on bereavement groups. There's many of them. But I agree with you, my solution is a bit of a compromise, and hopefully, it's workable, but probably every single person who ever came to Death Cafe Oakland who wanted a specific resource for a specific need sometimes didn't get it. Dr. Bob: You're staying true to a mission and that's honorable and it makes sense because you could open it up for all kinds of challenges if you don't keep the boundaries clear, and you're providing ... Again, you're doing this all as a volunteer, right? You have a career and you have to divide your time between things that allow you to pursue that and to ... I really applaud you, commend you for your passion and commitment to this. It's really remarkable. Bill Palmer: The irony is I get more than I give. I appreciate you for saying that, thank you. Dr. Bob: Just to quickly follow up on that, what have you gotten? How has it changed you to have this experience and to be part of this movement? Bill Palmer: Well on a very practical level, to avoid any hint of hypocrisy, I have filled out every form known to humanity with regard to my death, and I'm closer in terms of age, I've got a lot more behind me than I do ahead of me. I think that what I've gotten, the most valuable thing I've gotten about that is, if not an acceptance of it, but a clear idea...
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How Self-Compassion Helps The Grieving Process, Lydia Lombardi Good Ep. 22
07/09/2018
How Self-Compassion Helps The Grieving Process, Lydia Lombardi Good Ep. 22
Lydia Lombardi Good is a licensed clinical social worker. She shares the importance of self-compassion, what it is, and how to get comfortable with it and how it helps the grieving process. Note: A Life and Death Conversation is produced for the ear. The optimal experience will come from listening to it. We provide the transcript as a way to easily navigate to a particular section and for those who would like to follow along using the text. We strongly encourage you to listen to the audio which allows you to hear the full emotional impact of the show. A combination of speech recognition software and human transcribers generates transcripts which may contain errors. The corresponding audio should be checked before quoting in print. Contact Transcript How Self-Compassion Helps The Grieving Process Dr. Bob: Yeah. That's my pleasure. This is a Life and Death Conversation, and we talk about things that we can do to enhance life and bring more joy and peace to life, and of course, we talk about death. We don't shy away from the topic of death. We always explore a bit about how our guests feel about the whole end of life, death and dying, what experiences they've had, how the awareness of death seems to show up in your life. For people who come on and have these conversations, most of the time they're pretty comfortable speaking about death and sharing their experiences and thoughts about it. I'm just going to open it up and let you share a little bit. I know that you do a lot of work in grief and loss, and you've been in hospice, and have a lot of experience. So share a little bit about what the idea of death and dying means to you, and how it shows up in your life. Lydia Lombardi Good: What I learned from my experience with death and dying, working with clients, having my own personal experience losing close loved ones, is the more we think about death and understand that it is inevitable, and we are all dying a little bit every day, I think the richer a life we are able to live, and we are more mindful of the choices we make, and the people we choose to surround ourselves with, and the life we want to live, knowing that nothing is permanent. Everything is impermanent. And if we live a life without regrets and can be more present to our lives instead of staying maybe stuck in the past, or focused too much on the future, we can look back and say, "You know, I fully experienced all that. I don't wish to be back there again. I wish to be right here, right now, to live my life fully," knowing that we really only have one shot at that. So that's how it's changed me a lot in terms of my own choices, the way I live my life, the way I try to stay compassionate. A lot of it's talked today, and what I really am passionate about is teaching people to embody self-compassion and treat yourself kindly, the way you would treat a close friend. And the more we can do that, the better life we can have. The more chances we take, the more we can just fix up things as they are, instead of always wishing things to be another way, or for us to be another way. And when we do that, we're missing what's happening right now. Dr. Bob: Yeah. That's beautiful. And I think it's pretty common to hear people share that when they contemplate death, when they recognize, like you say, the impermanence of everything, it really allows us to stay more focused on what's happening right now, and feel gratitude, and just feel very present. I want to talk about the mindfulness, the self-compassion, and the mindfulness, because mindfulness meditation, self-compassion have figured prominently in my life and I've done my work there, I've gone through courses in mindfulness. And it's so interesting what you said, to treat yourself the way that you would treat a close friend. Do we do that? I mean, do we really do that? The stuff that we lay on ourselves, and the way that we diss ourselves, which is so common. Like, if we were doing that to a friend, would they stick around? Would we still- Lydia Lombardi Good: We wouldn't have any. Dr. Bob: We wouldn't have any friends. Share a little bit more about that, about how you came to that, what your journey has been to become a teacher of self-compassion and mindfulness. Lydia Lombardi Good: Yes. Yeah. So, I was working in hospice since about 2007, 2008. Right out of graduate school I started this work, and I think I understood it to the best of my knowledge. I'd had a lot of loss in my past, and a lot of trauma that I thought I had worked through and had done a lot of healing around and was in this work. And I think I had as much compassion for the experiences of my clients and patients as I could have at the time, for that point I was in my life where I was at and what experiences I had been a part of at that point. And then it was 2012; I lost my dad to cancer. He died of prostate cancer and endocrine cancer. So the three years prior to that, we were taking care of him, and it was a real aggressive form, so it was a really difficult dying process. So that following year I was in charge of settling what I call closing out someone's life. That process of closing up his home, preparing it for the next chapter, getting his belongings and setting up beneficiaries, that kind of thing, and doing my grief as best as I could, as much as I knew how at that time. And then, shortly before the one year anniversary, I got a call from the medical examiner's office that my uncle, who was one of my father's primary caregivers aside from myself, had taken his life. So then I embarked on that next journey. I was his only family here, so helping to then close out another person's life. And then two months later, I get a call. My husband's out of state at a bachelor party. And I get a call that he's had an accident and I need to fly out immediately to Arizona and be with him because he's had a traumatic brain injury. So I fly out there and spend 10 days in ICU with him until we were basically told that we need to consider letting him go because he was not going to recover at that point. So my real journey I think began there. I could make sense that my dad was in his late 70's, although for some that is still young, but he had lived a really full life. My uncle, I wasn't as close with. It was a different type of grief, but losing my own husband was a total ... knocked me off my feet. It was a total life-changer. So basically, learning about self-compassion and mindfulness started the year before, when my dad was going through his dying process, but really kicked into high gear after I lost my husband, simply for just survival. I was in survival mode- Dr. Bob: Yeah, self-preservation. Lydia Lombardi Good: ... trying to figure out, yeah, how do I survive all this. Three in a row, I'm totally alone, feeling like I'm totally alone. How do I keep going? How do I keep going? How do I make sense of ... if this can happen to my 32-year-old husband, what's going to happen to me? This feeling of just total lack of safety and security and anything that I once knew. So that's when things really, really kicked into high gear for me. And a couple of years later I ended up leaving hospice. I was working out as a bereavement manager, and I decided to start my own practice, focusing on grief and trauma. A lot of it because of all the work I did with amazing clinicians, and spiritual healers, and energy healers, and the amazing, amazing people that supported me through my past, inspired me so much that I felt I really needed to do this myself and work with individuals again, and step away from the program planning and go back to pure clinical work. And it's been amazing. Dr. Bob: I bet. Wow. And like many people, your journey has taken you someplace because of your own personal experience. I mean, you have the training, you have the structure of having worked in a company, but once you had your own personal experience and were down in the depths, and then figured out what you needed to do to survive, and then I'm assuming beyond surviving, starting to thrive again, you recognized that you needed to be in a position to share that on a deeper level. Lydia Lombardi Good: Yeah. It's been tremendously healing, although I didn't jump into it necessarily to do it for my own healing. I wanted to make sure that was taken care of on its own, so I wasn't coming to work with clients doing my own work. But feeling complete and on a really steady path with my own healing empowered me to know the tools that work for people, and to empower others to consider some of these healing modalities. And mindfulness and self-compassion were right up there. They were the primary methods for me in terms of my healing. A lot of people as what does that mean. When I heard, "Self-compassion," I frankly, four, five, or six years ago I never knew what that even meant. It's not a term a lot of people in western culture understand or use. So really learning what that meant, and practicing it for myself, so I could know how to show others to do that. Dr. Bob: So why don't you try to explain it and let people know, because there's probably a lot of people here who ... you know, the self-compassionate conjures up some images and some thoughts, but I think you could probably do a really good job of helping people see what it really is to learn self-compassion. Lydia Lombardi Good: Yeah. So, self-compassion defined more is bringing yourself to the same attitude and understanding that you would do for others, or a beloved friend. So asking, how can I care for and comfort myself at this moment, instead of judging and criticizing. How can I bring kindness and understanding, and patience, when I'm confronted with a personal feeling or loss, instead of beating myself up. And then honoring and accepting your humanness. And with grief, I think where I see a lot of people, and I did this myself, we put ourselves in a timeline immediately. I was talking to a woman the other day, and she said to me she just lost her fiance a week ago. And she said, "I'm trying to be happy. I know I need to be happy, so I'm just going to be happy, and I cry when I need to, but I just want to be happy." And I said, "You know, why do you have to be happy? You just lost your fiance. Can you just honor what's really happening with you? You're sad, you're angry, you're all these feelings ..." that she was telling me before she said she felt she had to be happy. We try to pressure ourselves to move faster than we actually it's reasonable for our healing. And this is actually what stuns our healing when we try to pretend it's another way. We try to pretend that ... you know, you'll hear people saying, "In a year you should be better. Just give yourself that year." Well, for some people a year it's just begun. The trauma is just starting to settle, and now all of the sudden there is space for grief. Or the realization or the beginnings of acceptance begin to occur after a year, for some people longer. None of that's wrong; it's just is. But with self-compassion, we can give ourselves that space to say, "Whatever's happening is just right for me. As long as I'm not hurting myself or I'm hurting another person, this is what I need to do in order to move forward and to heal, step by step." Dr. Bob: So how does that happen? How does somebody learn self-compassion? How do you go from having the normal chatter, the typical berating and judging that most people have ... has become sort of their pattern, to having this self-compassion, and what's the process? Lydia Lombardi: I think the first part is learning you're being able to become aware of the voice inside you and what it's saying, so really listening to that. So if you start to notice your pattern of self-deprecation, or being really hard and punitive with yourself in difficult times, starting to become an observer of those thoughts instead of allowing yourself to become hooked to them. The problem is, a lot of us, me included again, we get so used to those thoughts, they just become ... we get on autopilot with them, which becomes kind of a way of being. But by practicing things like mindfulness, or meditation, we allow ourselves to slow down a little bit, take a breath in between thoughts, and start to notice the thoughts instead of getting hooked. For example, I used to notice I would get really frustrated with myself when I would get really, really down. Like, a year or two after my husband had died, I would all of a sudden have a really bad day, a really bad grief day, and I used to think to myself, "Gosh, where is this coming from? What's going on? Why am I feeling this? Gosh, I've done all this healing, and I've done all this work. Why am I sobbing now? Something must be wrong with me. Maybe I'm just not doing enough work to heal." And all these questions, instead of just catching the thought and saying, "You know what? There I go again. Can I just have the feeling that I'm feeling and let it rise and fall naturally, instead of resisting?" Because we find, when we push against it, and we create this resistance, we actually create more suffering for ourselves. And this is a real Buddhist concept as well, that pain is inevitable, but pain with resistance equals the suffering. When we can just settle into the pain and just feel it, it's like when we have a good cry. When you're stuffing it down, and it's that nod in your throat, it hurts so bad, it's so uncomfortable, but then when we just let ourselves ball, all of a sudden you notice you come out of it and it's like, wow, I feel so much better. Why didn't I just let myself do that before? Dr. Bob: It's a catharsis, yeah. Lydia Lombardi Good: Yeah. Dr. Bob: I think we need to allow for more of that. So, a big thing that's coming up for me as you're describing this process is awareness, self-awareness. That's the first step, right? Because if you're not aware, if you don't have an awareness of what's truly taking place, there's no way that you can influence it, or impact it. Lydia Lombardi Good: Exactly. Dr. Bob: And again, going back to this, sort of the analogy of treating yourself like you would treat a friend, imagine if you were with somebody and they said something just kind of off the cuff, and your response was, "Well, you're an idiot. Like, what a stupid thing to say." Or, "There you go again, making a fool of yourself," those kinds of things that people are so comfortable saying to themselves, thinking to themselves, that if they were being said out loud to a friend, they would never tolerate that. Lydia Lombardi Good: That's right. That's right. That's exactly right. Why is that okay to do to ourselves? Dr. Bob: Yeah. It's not, but we do it, and we keep doing it. And I think we just believe that this is the way that it is. People become so accustomed, and I think it deflates you just like if you have a teacher who's always telling you how stupid you are, or a parent who's always telling you how disobedient you are, or sloppy, or whatever. That has an impact, and it will keep us from really feeling the depth of I guess the beauty and the magic of life. Lydia Lombardi Good: Yes. And it holds you back from that experience that you deserve to grief. And sometimes that sounds really strange when I say that to people, the love you had for that person needs to be expressed through your grieving process. Someone told me years ago grief is the twin of love. You can't have one without the other. So, why are we suppressing this grief expression if it's simply an expression of our love? And whatever that grief presentation looks like. For some it's crying, for some it's sharing stories with family, or memories, or whatever that looks like, memorializing, ritualizing the person. But you're entitled to that experience. That's how we're able to move forward. But when you don't allow that experience to yourself, it's still there; it's still going to be there. A lot of people will say time heals everything. It's actually time and attention. Time alone doesn't do a thing if we're not giving it the attention that it needs to do the healing that we deserve. Dr. Bob: Time can actually just cause more festering and the wounds to deepen. Lydia Lombardi Good: Right. Dr. Bob: Yeah, if you think about it kind of like an infection in your system, yes, there are some self-limited infections that will get better over time, but there are some that if they're not addressed, if you're not aware of them, and deal with them, they'll eventually cause incredible suffering and ultimately kill you. Lydia Lombardi Good: Exactly. Exactly. I use that wound example a lot. Dr. Bob: Yeah. Interesting. And one of the other things that came up, and I'm sure that this is something that's very much in your awareness and in some of what you teach, is the concept of the gap, the space, that most people just remain unaware of. So we go back to awareness. And I think it was Victor Frankl who originally made this quote. I actually saw it in one of Steven Covey's books, but it's a quote about between stimulus and response, there is a gap, there's a space. And it's within that space that our freedom and our power come from. And the fact that we have that space to choose what to do with, how to respond, if we're going to respond, what to do with that stimulus, that feeling that came, the words that someone spoke, if we recognize that we have this power, everybody has this power to take a space, take some time, and choose what to do with it, it is too incredibly empowering. Most of us are just reacting all the time without giving any honor to that space. Lydia Lombardi Good: You're right, you're right, and that space is where all the magic happens ... Dr. Bob: That's where all the magic happens. Lydia Lombardi Good: ... where physiologically we can settle our nervous system, we can move into a more parasympathetic nervous system and really think critically, shift those thoughts to a different part of the brain and be more skillful in our actions, exactly. Dr. Bob: Yeah. Lydia Lombardi Good: And maybe that just means that we still don't know what to do, and maybe skillful means stepping away and just taking a break and thinking more about what to do next, instead of jumping right in and just making a reactionary decision that could actually lead to more harm. Dr. Bob: Right. Yeah. That awareness, and it's something that I've tried to teach with my children, with others, and of course I forget. I still at times react ... Lydia Lombardi Good: Sure. Dr. Bob: ... and then when I realize that I've given up my power, I'm giving up my power to choose a response, then I actually exaggerate it, where I start ... I'll give it a full two or three seconds, when somebody says something, rather than having an immediate response prepared and going right into it, I will exaggerate the space. And sometimes it can almost be a little awkward. People wonder what you're doing and why you're not answering, but it just kind of reminds me and allows me to feel empowered and to feel a sense of peace and control again. That's a really great exercise. Lydia Lombardi Good: Absolutely. Absolutely. We're not used to that in our culture. You're very right. We always feel like we need to fill the space. And I think that's a big part of the problem too; even when we're consoling a person who's grieving, we have a hard time just sitting with their raw emotion or the feeling, or just saying nothing and just being present to their experience. We have a hard time with that. We feel like we have to say the right thing, or jump in and fix it, or push the tissue box to them real quick, to make sure their tears don't get out of control. We can be messy and just sit with snout rolling down our face. Just say it's okay. This is what's happening right now; it's okay. We don't have to fix it; we don't have to talk over it and make it pretty, put a bow on it. Dr. Bob: That's one of the things that's been such a gift...
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Going Through The Dying Process, Chelsea Berler Ep. 21
06/22/2018
Going Through The Dying Process, Chelsea Berler Ep. 21
Chelsea Berler is a successful entrepreneur, and author and an inspiration for many people. Tragically, she is also dying from breast cancer at the age of 34, but you won't hear Chelsea describe what she's going through as a tragedy nor is she a victim. Listen and please share this episode with others who need to hear it. Note: A Life and Death Conversation is produced for the ear. The optimal experience will come from listening to it. We provide the transcript as a way to easily navigate to a particular section and for those who would like to follow along using the text. We strongly encourage you to listen to the audio which allows you to hear the full emotional impact of the show. A combination of speech recognition software and human transcribers generates transcripts which may contain errors. The corresponding audio should be checked before quoting in print. Contact Learn more about Chelsea's nonprofit organization, The Foye Belle Foundation, by watching the video below and visiting her website: Transcript Dr. Bob: Chelsea Berler is a friend, a successful entrepreneur, and author and an inspiration for many people. Tragically, she is also dying from breast cancer at the age of 34, but you won't hear Chelsea describe what she's going through as a tragedy and she certainly isn't a victim. Dr. Bob: She has an amazing perspective on life and on death, which she shares with me during this interview. Anyone dealing with life challenges or has a loved one who is will certainly benefit from listening to Chelsea's heartfelt and loving words. As well as from the book that she recently published 'The Yellow House on the Left'. Listen in. Dr. Bob: Looking at your picture, your Skype profile and it looks exactly like you, but I'm assuming that that's ... I wouldn't see all that flowing blonde hair. Chelsea Berler: I look very different right now, I'd probably look like a teenager going through puberty because I am on some massive steroids and I'm getting hair where I haven't had hair before, and of course my hair's starting to grow back from the chemo. So I'm looking mighty, mighty different these days. Dr. Bob: Yeah. Well, I imagine that that's just one of the many lessons, right? Chelsea Berler: Absolutely. Dr. Bob: To learn humility not get too attached to certain appearances. Chelsea Berler: You're right. Dr. Bob: Well Chelsea, thanks for reaching out. I mean we're having this conversation because you had reached out to me recently just to touch base and honestly, I didn't know that you were dealing with any of this. That was a big surprise to learn that you were on this journey and I appreciate it in the thing that stuck out what your phrase that you wrote was, I would love to see you do more with people that are directly in the path of your work. Dr. Bob: Would you be willing to share a little bit about what that means to you? What's your thinking around wanting to connect with people who are directly in the path? What does that look like? Chelsea Berler: You know, it was so interesting how it kind of came to be is, of course, we've been connected for years and had worked together in some capacity or the next, and we play in the same circle of really great people. You were on my mind the other day because I was ... One thing I've been spending a lot of time doing is listening to podcasts and one of the biggest reasons is, is because of my current state, I have this ringing in my ears pretty consistently. Chelsea Berler: What helps is listening to something or listening to music or things of that sort, I was actually on the podcast app and just trying to search for a podcast that was inspirational, podcast about death and dying and all that. And I thought, "Oh, Bob has one." I went and looked up, and I started listening to all men. I really enjoyed them, and then I got to thinking, you know, it'd be so great to listen into other people's stories that are going through death and dying. Chelsea Berler: I'm assuming, in some situations people often aren't in the mood to be sharing any stories or feeling good enough to do that, oh who knows, young or old. But I thought maybe there was, and maybe there was an opportunity for you to be able to add some of those stories, and I thought, oh, I would also love to share mine just because it's rather unique to in hopes that it will also help someone else that may be in that same situation looking for a podcast or trying to find something like that, that kind of helps them with the process as well. So that's kind of how I came to reach out and be like, "Hey, Bob!" Dr. Bob: I'm so glad that you did and I'm so glad that you were open and that you're feeling up to doing it, I know that it's kind of day by day in terms of how that goes and so thank you. I spent a little time over the last couple of days reading some of your posts and the articles that you have on Huffington Post and just kind of getting more familiar with your journey. Dr. Bob: So first of all, you're an amazing writer and I knew that before but I'm seeing a different style, and it's a different theme of course but your ability to express yourself and the pain of it, the wonder of it, all of it, just the full catastrophe in the middle of the night. So I appreciate that you're willing to share and I know that there are people who are benefiting from that, everything that you've put out there. Dr. Bob: A lot of people just kind of shrink into their own world and don't want to contribute it anymore. Thank you for being somebody who's not doing that, who's continuing to shine your light out in the world despite the challenges that you're dealing with daily. Chelsea Berler: Yeah, and something to piggyback off that and I know that we'll get into this story a bit, but I actually decided right when I found out I have been writing and so I have another book with that, it's going to be done this week, I'm having helped from a writer that actually helped me write my last one, and it's basically on death and dying. So in all the right ways and it was mostly because I had these Huffington Post articles that I never in a million years thought I would be dying from this cancer. We all were focusing on a cure, which was very much the what was going to happen. Chelsea Berler: Since that didn't we pulled together these Huffington Post articles and wrote, she's been helping write this next book that will be out soon too, and I think that it'll be a really great contributor. It's going to be called 'The Yellow House on the Left,' so that'll be fun too. So I'll keep you posted on that. Dr. Bob: When do you anticipate that it'll be available? Chelsea Berler: I think that it'll go to print end of next week and then it'll be about two weeks until we can get that in our hands. We've been rocking and rolling on that, and I think it was just one of those things where I thought, it now is time to put all of these things into writing because I do think that there will be people that would be helped by these stories and my story and I wanted to get it out as quickly as I could, but I was like, "Gosh, could I actually make this happen?" Because day-to-day my challenges get worse for sure and so I think we'll make it. Dr. Bob: Awesome. I can't wait in that, and I'm looking forward to seeing it and reading it, and of course trying to spread it, spread it out to those who will benefit from it. Chelsea Berler: Thank you. Dr. Bob: Why don't you tell listeners what's going on, what do you, what are you dealing with day-to-day right now? Chelsea Berler: I turned 33 last year in March and my husband at that time was traveling every week to Europe for work, so he would spend basically Monday through Friday in London and Paris for work and then he comes home every week. That's been our life forever, he travels during the week, and we see each other on the weekends, and it's been lovely, that's the life that we love to live. Chelsea Berler: He was traveling a lot, and so we decided I'd love to take a big trip and go to Europe, and in lieu of him having to come home for a couple of weeks and kind of see his life there, following him around, enjoy some time in Europe because I had never been, and so we were really excited about that. Chelsea Berler: So came May, I flew over there, and I had the best trip of my life, it was truly so much fun. It was great to just see not only how busy, and crazy his life and lifestyle was over there–like the guy is like the energizer bunny–but it was just fun to just immerse yourself in another country for a while, and so we did that. That was a lot of fun. But I noticed while I was there, I was like, I could not keep up with him and to be honest, I can barely keep up with him and how like he does have high energy and I'm probably more chill. Chelsea Berler: I just noticed I was really tired and I thought, it could be jet lag and the time difference. We were between London and Paris, so it's six, seven hours difference and maybe I was trying to kind of get used to it. Then when I got back, there was about a month in between where I was still really tired. But again, I just thought, maybe I wasn't eating well or whatever, and so I started working on a program with a friend [Christie Smear 00:10:26], you probably know her. Dr. Bob: I do know her. Chelsea Berler: Wells Fargo or The Wealthy Thought Leader can. Anyways, I started doing like a cleanse with her and like I was feeling really good, and my energy was a little backup, so I was excited about that. Then in July I noticed a lump in my armpit, and it literally like, just was like in my armpit and I thought, "Well, that's weird," I'm young, you know, at the time of 33 years old and so it didn't even phase me that it could be like something crazy, but I thought, "I'll get it checked out and see what's up." Chelsea Berler: So I had just a regular gynecologist appointment that was already scheduled like my yearly exam because when you're 33, they don't have you do mammograms or anything until you're at least 40. I went in for it in end of July, I think, and she's like, "You know, it's probably nothing." Like she felt around, made sure everything looked okay. She's like, "This is probably just a lump that it's no big deal." So she said, but of course, we want to go ahead and by protocol and have them check it out, do an ultrasound on it, and maybe a biopsy just depending. Chelsea Berler: I was like, "Yeah, no problem," so we weren't really quick on scheduling it. I think I had it scheduled like a week later and they did a biopsy, and when the doctor went in and did it, he said, "You know, I'm going to do a couple more." I didn't really think much of it. So he did a couple of different biopsies in that area, and then about a week later, the doctor called my gynecologist called and said, "Do you want to come in and talk about your results?" I was like, "That's weird. Can you just let me know, you know, what you found?" She said, "Well, it all came back cancer," and I said, "What does that mean? Like cancer? Like what?" Chelsea Berler: She goes like, "I don't know, I can't interpret the results, but I need to put you in touch with an oncologist that you can meet with to discuss the outcome." At that point, I just broke down in tears, and I handed the phone to my husband who was drifting fully, and he had, of course, a lot of questions. "Can you give us more ..." I don't know anything other than these biopsies tested positive for cancer and she didn't know too much about the type or whatever. Chelsea Berler: We ended up connecting with, so she gave us a referral for an oncologist, and so it was a week after that, that we were to meet them. So we, of course, were like for an entire week, knew nothing other than we just have to meet with this doctor and we'd go to meet with her, and there was actually, we live in the Gulf of Mexico, and there was a hurricane before that ended up not hitting us. But of course when something like that happens, everything closes, and we didn't even think two thinks about it. So we went to the doctor's office, and there's a big sign that says they're closed. Chelsea Berler: The day we were supposed to figure out what was going on, we were standing in front of the doctor's office with like, "Sorry, hurricane happened last night. We're not open today." We came back home, and we were just like, this is the worst feeling in the world to know like someone found cancer and you hang, don't know anything about it and you can't get into the doctor. Chelsea Berler: The next morning we called of course and said we had an appointment, it looks like yeah, we're closed. No one called us. And they said, "Well, come in today at 4:00," because we basically begged them like, "Can someone just tell us what's going on at this point?" That was kind of a frustrating moment because it just felt like we were in limbo a bit for a couple of weeks. Chelsea Berler: Finally we met with her that next day at 4:00. She is amazing; we have the best oncologist ever. Basically, she sat there and said, "Tell me what you know so far so I can fill in the gaps." She told us that I would test it positive for triple negative breast cancer, and she wanted to go ahead and do all the genetic testing and figure out this type of cancer and rate it and all of that. She couldn't do that until we did like a full PET Scan and did all of the more specific test to kind of understand what we were dealing with. Chelsea Berler: We went ahead and did a pretty extensive genetic testing that all came back negative. Thankfully, because I also have several sisters, a mom, it had been impacted, so we know that I didn't have it genetically. Thankfully that was great. But it also stumped us because she said, for me being so young and we're having triple negative, it's awfully confusing how one like me would get something like this. Chelsea Berler: Then the other thing was we went ahead and did the PET Scan, and it looked to be pretty severe. One thing about triple negative breast cancer is it's a pretty aggressive cancer. Triple-negative breast cancer is probably the hardest one I think to combat a bit because it's not hormonal based and a lot of people like that I did chemo with were much older than me and all hormonal based breast cancer. Chelsea Berler: We were kind of dealing with that from both ends, but we ended up having the PET Scan, and everything, and she called it initially early stage 3C, but basically I'm stage four because I could have done clinical trials and all of this other stuff. We basically classified as stage for triple negative breast cancer at the time. Dr. Bob: Where else was it in addition to the lump that they had biopsied in the breast, where else at that point? Chelsea Berler: It was in my lymph nodes or is in my lymph nodes in my armpit, and then also we saw activity above the clavicle, and it was pretty tiny activity above the clavicle. They felt really confident in my care because we could do a double mastectomy although it was only in one breast, I told them right away I was like, if we're taking one, take it both. What we were going to do, the plan was is to do six months of chemo to shrink everything, and we felt really confident about that, and then we wanted to do a double mastectomy, remove the lymph nodes and then the rest of the tiny activity we saw above the clavicle we wanted to hit with radiation, and so I had a team of a surgeon, the oncologist, and the radiologist, and we all got together, they all were like super confident, like kick this. Chelsea Berler: We did the six months of chemo, I started that in September and not only did it go well, I mean I was sick as a dog and it was awful, but it went so well that when we met with our surgeon, because we were meeting with our surgeons several times, like once a month we would go in and get a mammogram and check everything and see how things are progressing. This last time when I was finishing chemo, not only did the tumors shrink so much that she said, "You don't even need a mastectomy anymore, I can do a lumpectomy and remove everything." She felt so confident, and our surgeon is amazing, she's like in her early, I think she's in her early 70's, she has seen it all it's just like, well-recommended around here are amazing. Chelsea Berler: She was just like so confident, like don't worry about thing, I think let's do a lumpectomy. We left that appointment thinking, "Holy crap, this is amazing," and they were raving about how amazing chemo is in that situation because should I have not want the chemo away we would be removing all kinds of things trying to get this cancer out. Chelsea Berler: Anyway, so my last mammogram I did was December or January. No, wait, February. That was when my last chemo was February 14th actually Valentine's Day. We did that last mammogram, and we got to go in and see it, she's like, "Come and look at this." She literally put like the pictures of the mammogram, but there was never a moment that we talked about, it was so tiny for a moment. We're excited. We had to talk about death or dying, because it wasn't even on this entire journey, because no one has been talking about that potentially happen. Chelsea Berler: There was never a moment where we talked about this could kill me, there was never a moment where we had to talk about death or dying because it wasn't even on the table. Like there was no one talking about that as being something that could potentially happen because the plan and what they were working with they just felt really confident about it. Dr. Bob: That's really interesting. I wonder if you were 73 instead of 33 if that conversation would have been different. Chelsea Berler: Yeah. Maybe. Maybe I had a lot of issues through the chemotherapy process like my white blood count was ... I was struggling a lot, so I ended up having to skip several chemos, and so they called me this unicorn. They were like, you know how you meet people and like for example, you hear a herd of horses, and you know their horses, you hear, you can hear what they sound like, right? But then you look back, and there are horses, but there's one unicorn. This unicorn that's not quite fitting in any pot, and so I was basically a bit of a problem child for them from the start when it came to even the chemo process because of course I'm with all these other patients that are going through this process, and mostly they're going through the way they need to be going through it. Chelsea Berler: I felt like almost every time I would go I would have these issues of like not being able to get chemo or being too weak or whatever. I'm like, "I'm the youngest one here by like a lot." Like I would say the next person in line in terms of age was probably in their 50's that I was with, so I was like, "Why is the young person, am I having so many problems?" I got through it, and it was so successful that we were also a bit surprised because we were worried that it wouldn't be because of the issues that I had been having. Chelsea Berler: My tumors and lymph nodes are shrunk so much that it was just amazing. At that point we scheduled surgery, so we have to wait at least four weeks after your last chemo to have surgery, so I think we scheduled it for like five and a half weeks after that. I had my birthday March 13th, I turned 34, and two days after that I got put in the hospital because ... A week prior I started getting these really weird headaches, and they would come on for about five minutes, and they would be just extremely painful for like five minutes, almost like I was having a contraction in my head, and then it would eat often go away. Chelsea Berler: It would happen like almost 10 times a day, and I was feeling like I kept saying to people like, I'm having these weird headaches, I'm having these weird headaches. I was telling the doctor, and she said, it could be, or coming off of chemo. It could be...
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We Croak: the App that Makes You Think About Dying, Hansa Bergwall Ep. 20
06/08/2018
We Croak: the App that Makes You Think About Dying, Hansa Bergwall Ep. 20
Hansa Bergwall is the creator of a new app called "WeCroak". Out of his own personal meditation practice, he determined that death contemplation could be beneficial, not just for him, but for many people. Note: A Life and Death Conversation is produced for the ear. The optimal experience will come from listening to it. We provide the transcript as a way to easily navigate to a particular section and for those who would like to follow along using the text. We strongly encourage you to listen to the audio which allows you to hear the full emotional impact of the show. A combination of speech recognition software and human transcribers generates transcripts which may contain errors. The corresponding audio should be checked before quoting in print. Contact You can download the app from your iPhone or Android device. You can also visit Hansa's website to learn more and download his app. Transcript Dr. Bob: So, Hansa, I'm totally curious about this. What prompted you to put an app out there that is going to notify people several times a day to think about death? What was the impetus for that? It's fascinating to me. How did that all come about? Hansa Bergwall: So I'm a daily meditator and have been for a while now. And regular death contemplation is actually a really millennia old part of most serious meditation practices. So that's how I first got ... I learned about some of these ideas. And some of them are pretty intense, much more intense than what I'm doing, meditating in [inaudible 00:01:19] grounds, where bodies decompose as a way of laying them to rest, to know about your impermanent nature. Stuff that would be hard to do today living in New York City. Hansa Bergwall: And then I came across the Bhutanese formulation of the practice that was, one, recommended for everyone and just really simple. It was just think about it five times a day that you're impermanent, that one day you will die. And you must do that in order to be a happy person. Immediately, it appealed to me as the kind of death contemplation that I wanted to add as a compliment to my meditation practice. So I just tried to do it myself. I thought, oh, this will be easy. I'll just think about it five times a day. And what I found was it was actually really hard. We have this pretty stubborn cognitive bias that we don't want to think about mortality all that often and it's hard to do, so I would get through my day and get to the end of the day and realize I hadn't done it even once. Hansa Bergwall: So that was when the idea of something to remind me came about and the idea of WeCroak, the app, which sort of fell into my head as a fully formed idea that honestly I never thought would go anywhere 'cause I'm not a coder and had no way of making it a reality until Ian Thomas, my cofounder, happened to rent my extra room on AirBnB and we got to talking one night and I basically told him/pitched him my idea for WeCroak and he wanted it on his phone, too. He never thought it would go anywhere. And we made it together for the next couple of months, so it happened really quickly and really fortuitously, organically out of me trying to do something that I thought would help. Dr. Bob: That's crazy. So if Ian hadn't rented your room, there's probably a pretty good chance that this never would've come to fruition, right? Were you going to go out and seek an app developer? Had you gotten to that point? Hansa Bergwall: I had. I made a couple of inquiries, and it was going to cost me $10,000 or something like that if I wanted to develop this on my own. And I didn't have that kind of money sitting around, first of all. And, second of all, sounded like a lot of money to spend on something that I was quite skeptical would be broadly popular. So really we made this kind of as almost ... We were talking about it when we started as it was like an art project or something that we really wanted for ourselves, maybe to share with our friends, and we wanted it in the world. That was how we went about it. Dr. Bob: Great. Without any huge expectations or goals that would potentially disappoint you if you didn't achieve them. That's usually the best way to start something. Hansa Bergwall: Yeah, and what it allowed us to do is we stuck to our guns a little bit, the Bhutanese folk saying is five times a day. So we had a lot of people asking, like, oh, shouldn't you toggle it, so people only want one? We're like, but that's not the recommendation. We're going to do this tradition. We're going to do it right. So because we have our day jobs and other ways of making money, we could really make it be something that we thought would be a real mindfulness tool. Dr. Bob: Great. So when did it actually become available? When did you complete the development process and put it up there for people to download? Hansa Bergwall: So I first had it on my phone in August of 2017, and it started right away reminding me five times a day that I'm going to die with a quote that I had picked out. And it was really fun. It was this creation that we had done. There had never been anything like it before. For the first few months, it was just a few of our friends and us. I think there were 80 people on it tops as of a few months later, kind of working with it and enjoying it. And then I do communication and PR for a living, and so I had reached out to just a couple people about the idea, and the Atlantic magazine covered it in December, and that was when it really started to take off in the world, and it has to a huge degree since then, beyond our wildest expectations. Dr. Bob: That's awesome. So how many downloads? I'm sure you're able to track that. How many people have downloaded it at this point? Hansa Bergwall: Yeah, so as of a couple of weeks ago, we just crossed our 40,000th download. Dr. Bob: Wow! Hansa Bergwall: So that means that 40,000 people around the world have elected to pay 99 cents for an app to remind them that they're going to die five times a day and we estimate we're going to deliver our seven millionth reminder on May 7th. There's been a lot of these little reminders going out, interrupting people's days. They happen at randomized times, and that has been the journey since December. It touched a nerve somehow. [inaudible 00:06:53] not the only people that wanted these reminders, wanted to remember that life is precious and time is limited. Dr. Bob: Have you gotten feedback from people? Have you had people who have shared any of what's come up for them or any interesting stories that have come out? Hansa Bergwall: Yeah, of course. It's a strange thing because we know these reminders are going out, seven million of them, and mostly it's like we have no idea how these are affecting people. Except when you hear back from people every once in a while. A very common response is that it helps pull people back to what's important, gives them a little bit of perspective and they use that for everything from getting off addictive social media or technology, to getting out of anger or having better relationships just by not sweating the small stuff as much, to seize the day kind of moments of, hey, I'm just gonna go do this thing I wanted to do because otherwise I may not do it in my life and I want to. Hansa Bergwall: So that's the most common response is people just using reminders to live a little bit better. And then there's this other category of people using it in much more serious positions and those, to be honest, moved me to tears a few times where I'll hear from people who are using it to help them in the grieving process for this woman said her son had passed away, and somehow it was helping. Another woman reached out to say she was having a hard time dealing with a mother dying of dementia and that it was helping her appreciate the time that they did have at the capability that they did, rather than just get into the poor me and my life kind of story. Hansa Bergwall: Just last week I had a young man reach out of the blue to tell me he'd been using it and mourning the death of 20 friends to the opioid epidemic over the last year. It gets out there in the world, and you realize that this kind of information is pretty powerful in that it's useful whether you're just trying to live a little bit better or if you're really facing some of life's hardest moments. Dr. Bob: Such a simple, simple concept to imagine having that kind of impact. Are you getting a sense that it's the reminders that are making more of an impact or the quotes that people are reading and that are touching them? What are your thoughts on that? Or what are you hearing? Hansa Bergwall: I think it's the whole thing. First, we're doing the Bhutanese formulation of just think about it often. Five times a day. That alone is powerful enough if that was all it did. And then the quote part of it is we live in a society where there's a tremendous amount of noise, distraction, technology, addiction, screens, everywhere that keep us from being really present where we are often. So in order to keep it fresh and keep it interesting, we introduced the quotes as well as the randomization of the timing so that it would interrupt you at times you couldn't predict. Kind of like the idea of how an eight ball, it only has maybe eight answers, and yet it can be interesting for quite a long time just because of the randomness of you don't know which one you're going to get. Hansa Bergwall: So that aspect keeps people engaged, on their toes, where just the many coincidences of life, there are those moments where the randomness of the time and the randomness of the quotes selected feels like it's speaking directly to that moment because we have a database of quotes. They're all worth looking at I think, but people never know what kind of quote they're going to get. We have quotes from people writing from the palliative care community or poets or philosophers or meditation teachers or even comedians. So people really don't know are they going to get a funny quote, are they going to get a quote about what it's like at the end of life. So that aspect of surprise I think keeps people from just glazing over and tuning out as quickly as they otherwise might. Dr. Bob: Yeah. I think that's an interesting aspect of it as well, the randomness, the just being open and receptive to receiving something that is kind of unexpected. And it probably says something about each of the people who are willing to pay the 99 cents and download the app is that they are looking for, I guess, input from the universe that could be valuable. My alert went off not long ago and the quote that came up this morning was, "If a man has not discovered something that he dies for, he isn't fit to live." And you know who that was? Hansa Bergwall: I think it's Martin Luther King. Dr. Bob: Exactly, yeah. Hansa Bergwall: Jr, yeah. I do know my quotes. I have a lot of them in there. Dr. Bob: This was a test, and you passed it, but I imagine ... How long will it go before I would see that quote again? Is it months? Hansa Bergwall: Right. Just to give you a little backdoor to the programming stuff. So every time it selects a quote at random from a database of about 400, we're updating to about 500 very soon. And you can get any random quote within that database at any time. However, we make it so that you don't get a repeat within, I think, it's a two week period right now, and I might have to double check that for you, but it's a little while. You can see it again in just a couple weeks if, by luck, that's the one that it selects, but there might be others that you haven't seen at all. We try to keep it so that you can't predict, that you're just on a loop or something like that. Sometimes you might get one every couple weeks just because that's what the ghost in the machine wants to give you, to really put that one in your face. Other times there'll be one that you just haven't gotten because of that randomness. Dr. Bob: Because of randomness. And that's part of the beauty of it. It reminds us of the random nature of life. So it's achieving two things. It's reminding us of our mortality and that we need to be looking at this day as something very special to be grateful for or this hour or this moment. And it also reminds us that, man, things are just random, and as much as we might want to control and predict, that's not really the way it works. Hansa Bergwall: Yeah, we like to say that the reminders can happen any time, just like death. Dr. Bob: Yeah, in my experience, I was an ER doc for 20 plus years, and very early on in my career, I became very clear about just how random life is. I like to say that the vast majority of the people who ended up in the ER that day woke up that morning not expecting that that's how their day was going to go and that's where they were going to end up. It was great life lessons early on for me. And now I'm at the other side of it taking care of people who are at the very end of their life, which is also an incredible classroom for me to be in. So how has this affected your life? What's different now in your life than it was in August when you started this project? Aside from being more aware of the fragility and randomness and that there are people out there who are interested in this. Any other major differences or new trajectories? Hansa Bergwall: Yeah, there are a lot actually. I would say that the wonderful thing about thinking of death often is that it's always true and it's amazing how few things that we know for sure are true in this world that we can really hang a hat on, but this is one. That our time's limited by an unknown amount. We might get the full natural human life cycle or might be much shorter. We don't know. Any decision we make every day, if we're not keeping that close, we're not living on true ground. That makes a big difference, to live life on ground that's more real. I think I'm making better decisions on a day to day basis in a number of areas and there are particular qualities that people have used death contemplation to nurture for a long time that I'm noticing coming up in my own life. I'll give you an example of some things that I've learned. Hansa Bergwall: One is courage, just the courage to do what I want to do, talk about what I want to talk to, make a big move that I want. It's one of those elusive things. Sometimes I think even having an awkward conversation or calling someone out on something that hurt you, or something can feel like an insurmountable burden, but death contemplation kind of gets you there. And I've learned since that samurai used to do daily meditation on all the horrible ways you could die on a battlefield because they knew to truly be the best on a real battlefield, which fighting on true terms meant that you could die any number of ways at any time no matter how good you are and accepting what a battlefield is and that you could die at any time. And by accepting that, you can really find the courage to do what you needed to do. So that's an extreme case, of course, but I'm noticing that I have more courage to just face the daily things that come at me in life. Dr. Bob: But what about the small battles? Hansa Bergwall: The small battles. Battlefields are not part of my life, but everyone has fear to a certain extent, and the courage to get through it is important. Just the sense of appreciation and thankfulness of I'll get a reminder, and I'm walking down the street, and I realize, oh, I'm walking really fast. I think I'm an in a habitual hurry. I'm actually not late for any appointment or anything. Maybe I'll slow down. And it's spring here in New York, and that happened to me just the other day and all the sudden I'm noticing daffodils by the side of the road and birdsong and all the sudden my life is filled with this richness that I was about to just habitually rush through. Hansa Bergwall: And there are others as well. Compassion, to a certain extent. When you are constantly remembering that you are going to die and that is the nature of life, and some misfortune follow someone that you know or something like that, you feel it in the heart a little faster than I did before at least. So all these things that I'm now learning about that people have used, these kinds of practices to nurture, slowly, bit by bit, start to happen in your own life. So I'm more a proponent of this kind of practice than when I started. I think it makes a big material difference in my life and I'm still discovering to all the possibilities of how that's true. Hansa Bergwall: And I think it's a great compliment to things like yoga or meditation practice or these other kinds of things, which are great things to do. I do them. And I think it compliments it because it's that grounded, feet on the ground, real-world kind of stuff, rather than getting off into, say, positive thinking or these things that can maybe take us a little bit away from the truth, which I think can be problematic. Dr. Bob: Yeah, when you contemplate truths, there really is no greater or more concrete truth than I'm going to die. There are no gradients. We don't know how, when, where, but that fact and, like you said earlier, alluded to, there are two absolute truths in life. That we're going to be born, that we were born. We wouldn't be here unless we were. And that we're going to die. And everything else really is kind of up for grabs. They used to say taxes, but we know that that's not necessarily true. So I like that. So, for you, the things that have really become more relevant or solidified in your life are the sense of courage, a sense of gratitude and appreciation in the moment and then compassion, which, if people ... For 99 cents, if people get that without a whole lot of other effort involved other than looking at your phone or device a few times a day, that's a pretty sweet deal. Hansa Bergwall: Yeah, and one thing we're proud of is, because we didn't make this like some of the big tech firms, to make money off of people's attention 'cause it's free with advertising or this or that, we're actually really proud that even though people are getting five notifications a day, even our people who are opening it all the time are spending less than a minute in the app per day. They just read the quote. We're having a pretty big effect for a very small Hansa Bergwall: amount of time. We're really proud of that because there's just so many things that can eat up our precious time, which is or limited life when you really think about it. The average person checks their smartphone 85 times per day, and I think the latest numbers that I heard were people were spending as much as four hours on their mobile devices and computers. Just on their mobile devices, not even computers like that, per day. You can leave 24-hour news on all the time. So there are all these things that can take up so much of your attention all the time, and we can get lost in them, so I'm kinda proud how it just grabs your attention and then lets it go immediately so that you can decide what you want to do with that information. Hansa Bergwall: There are other apps out there that maybe remind you to breathe or notice that you're on social media and like, hey, do you want to stop? To me, that would feel like nagging. I wouldn't tolerate it. Dr. Bob: Yeah, little judgmental. Hansa Bergwall: Yeah, and this is just telling something that's true, and then it's up to you, whoever you are, each person, to decide what you want to do in that moment. Whether to pat yourself on the back, you're doing exactly what you want to be doing, or switch course. Dr. Bob: I love it. I love the simplicity of it and that everybody can take what they choose from it. Are you developing anything else or are you ... Is this going to be leapfrogging you into other realms around this space or are you kinda just going about your other business and allowing this to just be? Hansa Bergwall:...
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Aid in Dying What It Means to Those Who are Terminally Ill, Ep. 19
05/25/2018
Aid in Dying What It Means to Those Who are Terminally Ill, Ep. 19
Please Note: This was recorded as a Facebook Live earlier this year prior to the recent ruling to overturn the California End of Life Options Act 2015 by Riverside County Superior Court Judge. In response, California Attorney General Xavier Becerra filed an emergency appeal seeking a stay of Superior Court Judge Daniel Ottolia’s ruling that invalidated the less than two-year-old medical aid-in-dying law. "It is important to note the ruling did not invalidate the law or the court would have said so explicitly in its order, so the law remains in effect until further notice," said John C. Kappos, a partner in the O'Melveny law firm representing Compassion & Choices. If this law and the right to die with dignity is important to you, we urge you to learn more from the organization that helped get the law passed. Note: A Life and Death Conversation is produced for the ear. The optimal experience will come from listening to it. We provide the transcript as a way to easily navigate to a particular section and for those who would like to follow along using the text. We strongly encourage you to listen to the audio which allows you to hear the full emotional impact of the show. A combination of speech recognition software and human transcribers generates transcripts which may contain errors. The corresponding audio should be checked before quoting in print. Need more information? for a free consultation. Transcript Dr. Bob: On this episode, Elizabeth Semenova and I speak very frankly about what it's like to support people through Medical Aid and Dying. We explain the process; we discuss who asks for this kind of support and why there are still so many barriers. This was originally captured as a Facebook Live and repurposed as a podcast because this information is so vitally important. Please share the podcast with everyone and anyone you feel would benefit from listening. Thank you. Dr. Bob: I'm going to do a little bit of introduction for myself, if you're watching this and you have been on the integrated MD Care site, you probably know a bit about me. I've been a physician for 25/ 30 years, somewhere in that range. Over the past several years I've been focusing on providing care for people who are dealing with complex illnesses, the challenges of aging, the challenges of dying. During these few years, I've discovered a lot of gaps in the health care system that cause a lot of challenges for people. Dr. Bob: We developed a medical practice to try to address those big challenges in those big gaps that we've encountered. It's been really remarkable to be able to do medical care in a way that is truly sensitive to what people are really looking for and what their families are looking for that is not constrained and limited to what the medical system will allow. It's not constrained by what Medicare will pay, what insurance will pay. We allow people to access us completely and fully and we are there to support them in a very holistic way with medical physician care, nursing care, social working care and then a whole team of therapists. Massage therapists, music therapists, acupuncturists, nutritionists. Dr. Bob: So that has been really fascinating and phenomenal. Elizabeth came along in the last several months. Really, she was drawn primarily to the true end of life care that we deliver and has been truly surprised how beautifully we are able to care for people who aren't necessarily dying as well. Elizabeth: Absolutely, yeah. Dr. Bob: So we can talk about all the different aspects of that, but we are here today to really talk about Medical Aid and Dying. Because, shortly after we started this practice, back in January 2016 California became one of the few states in the United States that does allow physician-assisted death. Dr. Bob: It allows what is also known as Death with Dignity, Medical Aid in Dying. The California End of Life Option Act passed in June 2016. At that point, a person with a terminal illness, an adult who is competent, had the ability to request a prescription of medicine from their physician, from a physician. That if taken, would allow them to have a very peaceful, dignified death at a place and time of their choosing. Since June 2016 we have become essentially experts and kind of the go-to team in San Diego for sure and actually throughout a good portion of Southern California because other physicians are reluctant to participate or because the systems that the patients are in make it very difficult or impossible for them to take advantage of this law. There is a lot of confusion about it. It's a very complex, emotionally charged issue. We as a team, Elizabeth and I, along with other members of our team have taken it upon ourselves to become true experts and guides so that people can get taken care of in a way that is most meaningful and sensitive. In a way that allows them to be in control and determine the course of their life leading up to their death and how they are going to die. That's why we are here. We want to educate; we want to inform, we want people to not be afraid of the unknowns. We want to dispel the myths. I'm passionate about that. We work together, and I think we do a very good job as a team, of supporting patients and families. I'd like to have Elizabeth share a little about why this is so important to her and then we are going to get into some more of the specifics about what's actually taking place, the requirements, how the process works and if there are questions people have we are going to answer those as well. We are going to go for about 20/ 25 minutes, and if it turns out that we don't get through enough of our material then we will have another session, but we don't want to make this too long. We want to make it concise, meaningful and impactful. Elizabeth: Okay. Dr. Bob: All right. Elizabeth: Okay. I started as a hospice social worker, and I became an advocate for Aid and Dying because I learned about the law. Learned that there were not a lot of options, policies, procedures in place, in Southern California when I started working in hospice for people to take advantage of and participate in the End of Life Option Act. Elizabeth: There were very, very, very few resources. There were no phone numbers to call of people who would answer questions. There were no experts who, well not no experts, who thoroughly understood the law but it was very hard to access that information. Elizabeth: I did my best to find it and became connected with some groups and some individuals who were experienced with and understood the law and became really passionate about pursuing advocacy and allowing as many people to have access to that information as possible. I started working on sharing that information and being a resource and learning everything that I could so that other people could have that. How I became connected with Integrated MD care and with you, I found you as a resource for another client, and we started having conversations, and I learned that it was possible to be supportive of people through this process through the work you were doing and I took the opportunity to become a part of it. We have done a lot to support a lot of people, and it's become a really special part of our work and my life. Dr. Bob: Why is it so important to you? Why is it so important to you for people to have access and the information? Elizabeth: I really believe that every life can only be best lived if you know all of the options that you have available to you. So how can you make choices without information? Right? So when it comes to something like this which is a life and death situation, quite literally, there are limited resources for people to make informed choices. What could possibly be more important than having access to information about what your legal rights are to how you live and die? With California only having begun this process of Aid and Dying. Exploring different perspectives and legal options and philosophical positions on the subject, I think it's really important to open that conversation and to allow people who support it as well as people who are against it to have those conversations and to explore how they feel about it and why. Then of course for the people who want to participate, who want information, resources, support in the process they have every legal right to it, in my opinion, they have every moral right to it and if there are no other people who are willing to support them I feel it is my duty to do that. Dr. Bob: Awesome. And you do it well. Elizabeth: Thank you. Dr. Bob: Yeah it's kind of crazy to think we have this legal process in place. People have spoken up and said, we want to have access to this, and we believe it's the right thing. Despite the fact that we have a law in place that allows it, it was so difficult, and it's still is to some degree, but especially in the beginning, it was like a vast wasteland. If somebody wanted to find out how to access this process, no one could really give them adequate information. There were organizations that would tell them what the process is and how it happens but there was no one stepping up to say 'I'll support you.' There were no physicians, and there was no one who was willing to give the name of a physician who was willing. It was very frustrating in the beginning of this process, in the first, I would say, the first year and a half. Still, to some degree, getting the right information, getting put in touch with those who will support it is difficult or impossible. Even some of the hospital systems that do support Medical Aid and Dying their process is very laborious, and there are so many steps that people have to go through that in many cases they can't get through it all. Our practice we are filling a need. Our whole purpose in being is to fill the gaps in health care that cause people to struggle. One of my mantras is 'Death is inevitable, suffering is not.' Right. We are all going to die, but death does not have to be terribly painful or a struggle. It can be a beautiful, peaceful, transformative process. We've been involved in enough End of Life scenarios that I can say that with great confidence that given the right approach, the right information, the right guidance, the right support it can always be a comfortable and essentially beautiful process. Elizabeth: Something that is important too also is to have people who have experience with these processes these struggles that people have. Not just anyone can make it an easy process. Not just anyone can make it a smooth process. You have to have it those obstacles you have experienced what the difficulties are and where the glitches are and in order to be able to fill those gaps you have to know where they are. Dr. Bob: Right. Elizabeth: Sometimes that comes from just falling into the hole and climbing out which is something we have experienced a few times. Dr. Bob: Having been through it enough times to... and of course we will come across- Elizabeth: More... Dr. Bob: Additional obstacles but we'll help...and that doesn't just apply to the Medical Aid and Dying it applies to every aspect of health care, which of course, becomes more complex and treacherous as people's health becomes more complicated and their conditions become more dire, and their needs increase. Hospice, yes it's a wonderful concept, and it's a wonderful benefit, but in many cases, it's not enough. Palliative Care, in theory, great concept, we need more Palliative Care physicians and teams and that kind of an approach, but in many cases, it's not enough. What we are trying to do is figure out how to be enough. How people can get enough in every scenario. We are specifically here talking about Medical Aid and Dying. In California, the actual law is called The End of Life Option Act. It was actually signed into law by Governor Brown in October 2015, and it became effective June 9th, 2016. I'll note that just yesterday the Governor of Hawaii signed the bill to make Medical Aid and Dying legal in Hawaii. The actual process will begin January 1st, 2019. There is a period of time, like there was in California, a waiting period, while they're getting all the processes in place and the legal issues dealt with. Elizabeth: Which you would think, that would be the time frame that health care intuitions would establish policies, would determine what they were going to do and how they were going to help. Dr. Bob: One would think. Elizabeth: You would think. Dr. Bob: Didn't happen here. Elizabeth: That didn't happen here. Dr. Bob: So maybe Hawaii will learn from what happened in California recently when all of a sudden June 9th comes, and still nobody knows what to do. What we are becoming actually, is a resource for people throughout California. Because we have been through this so many times now and we have such experience, we know where the obstacles are, we know where this landscape can be a bit treacherous. But, if you understand how to navigate it doesn't have to be. Elizabeth: We have become a resource not just for individuals who are interested in participating or who want to find out if they qualify but for other healthcare institutions who are trying to figure out how best to support their patients and their loved ones. TO give them without the experience that they need without having the experience of knowing what this looks like. Dr. Bob: Yup. Training hospice agencies. Training medical groups. At the heart of it, we just want to make sure that people get what they deserve, what they need and what they deserve and what is their legal right. If we know that there is somebody who can have an easier more supported, more peaceful death, we understand how incredibly valuable that is, not just for the patient but for the family. For the loved ones that are going to go on. So let's get into some of the meat of this. I'm going to ask you; we can kind of trade-off. Elizabeth: Okay. Dr. Bob: I'll ask you a question. Elizabeth: Okay. Dr. Bob: You ask me a question. Elizabeth: Okay. Dr. Bob: All right. If you don't know the answer, I'd be very surprised. In general who requests General Aid and Dying? Elizabeth: A lot of the calls we get are from people who qualify. So I don't know if you wanna go over the qualifications... Dr. Bob: We will. Elizabeth: Okay. Dr. Bob: That's the next question. Who is eligible. Elizabeth: Sorry. A lot of the people who call are individuals who are looking to see if they qualify and want to know what the process is. There are people who are family members of ill and struggling individuals, who wanna support them in getting the resources they might need. There are some people who just want the information. There are some people who desperately need immediate support and attention. Dr. Bob: Do you find, cause you get a lot of these calls initially, do you find that it's more often the patient looking for the information or is it usually a family member? Elizabeth: It's 50/50. Dr. Bob: Oh 50/50. Elizabeth: I think it depends a lot on where the patient is in the process and how supportive the family members are. Some people have extremely supportive family members who are willing to make all the phone calls and find all the resources and put in all the legwork. Some people don't, and they end up on their own trying to figure out what to do and how to do it. There are some people who are too sick to put in the energy to make 15 phone calls and talk to 15 different doctor's offices to find out what the process is. A lot of people start looking for information and hit wall, after wall, after wall. They don't even get to have a conversation about what this could look like, much less find someone who is willing to support them in it. Dr. Bob: Great, thank you. So who is eligible? Who does this law apply to? That's pretty straightforward, at least in appearance. An adult 18 or older. A resident of California. Who is competent to make decisions. Has a terminal illness. Is able to request, from an attending physician, the medication that if taken, will end their life. Pretty much 100% of the time. The individual has to make two requests, face to face with the attending physician and those requests need to be at least 15 days apart. If somebody makes an initial request to meet and I determine that they are a resident of California, they are an adult, they are competent, and they have a medical condition that is deemed terminal (I'll talk more about what that means) if I see them on the 1st, the 2nd request can happen on the 16th. It can't happen any sooner. The law requires a 15 day waiting period. That can be a challenge for some people, and we will talk a bit about that as well. In addition to the two requests of the attending physician, the person needs to have a consulting physician who concurs that they have a terminal illness and that they are competent to make decisions and the consulting physician meets with them, makes a determination and signs a form. The patient also signs a written request form that is essentially a written version of the verbal request and they sign that and have two people witness it. That's the process. Once that's completed, the attending physician can submit a prescription if the patient requests it at that time to the pharmacy. Certain pharmacies are willing to provide these medications, and many aren't. But, the physician submits the prescription to the pharmacy, and when the patient wants to have the prescription filled, they request that the pharmacy fill it and the pharmacy will make arrangements to have it delivered to the patient. The prescription can stay at the pharmacy for a period of time without getting filled, or it can be filled and be brought to the patient, and at that point, the patient can choose to take it or not. The patient needs to be able to ingest it on their own. They have to be able to drink the medication, it's mixed into a liquid form. They need to be able to drink five to six ounces of liquid, and it can be through a glass or through a straw. If the patient can't swallow, but they have a tube-like either a gastric tube or a feeding tube as long as they can push the medication through the tube, then they are eligible. The law states that no one can forcibly make the patient take it. They have to be doing it on their own volition, willingly. Okay. So, that's pretty much the process. Is there anything that I left out? What is a terminal illness? That is a question that is often asked. For this purpose, a terminal illness is a condition that is likely or will likely end that person's life in six months if the condition runs its natural course. Most of the patients that we see requesting Medical Aid and Dying have cancer. They have cancer that is considered terminal. Meaning there is no cure any longer. It's either metastasized, or it involves structures that are so critical that will cure them. In most cases, there is no treatment that will allow them to live with a meaningful quality of life, past six months. Of course, it's difficult to say to the day, when somebody is going to die, but there has to be a reasonable expectation that condition can end their life within six months. We also see a number of people with ALS, Lou Gehrig's disease, amyotrophic lateral sclerosis. That's a particularly sensitive scenario because those people lose their ability to function, they lose their motor function, and as it gets progressively, further along, they lose their ability to swallow. They can lose their ability to speak and breathe. The time frame of that condition can be highly variable. We see people with advanced heart disease, congestive heart failure, advanced lung disease other neurologic diseases. Elizabeth: The gamut. Dr. Bob: We see the gamut, but those are the majority. We've talked about who's requesting this for the most part, who's eligible? A patient who is competent has a...
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How to Protect Seniors a Conversation with District Attorney Summer Stephan, Ep. 18
05/11/2018
How to Protect Seniors a Conversation with District Attorney Summer Stephan, Ep. 18
District Attorney Summer Stephan shares what San Diego initiatives are in the works to protect seniors from abuse and fraud. She shares information about her programs and efforts to help keep our most vulnerable citizens safe. Note: A Life and Death Conversation is produced for the ear. The optimal experience will come from listening to it. We provide the transcript as a way to easily navigate to a particular section and for those who would like to follow along using the text. We strongly encourage you to listen to the audio which allows you to hear the full emotional impact of the show. A combination of speech recognition software and human transcribers generates transcripts which may contain errors. The corresponding audio should be checked before quoting in print. Contact Transcript Dr. Bob: In this episode, I speak with San Diego County District Attorney Summer Stephan, about her passion for protecting elders from abuse and fraud. Summer is leading the way to create a blueprint for a program that brings together many agencies and organizations throughout the county that typically work in silos, including the medical community, in an effort to create programs that protect our most vulnerable members of the population. I for one was inspired by her passion and her commitment, and I will be joining in this effort. I hope you enjoy the conversation. Summer, thank you so much for taking time out of your busy day. I'm sure that you have a pretty packed schedule most days, huh? DA Stephan: Oh, well, it is. As a district attorney for the second largest county in the state of California and the fifth largest in the country, we are hopping at all times, but protecting seniors is really a passion for me, so any chance I can get to talk about it and share information and things we've done, I love to do it. Dr. Bob: Fantastic. Well, I'm excited to hear some of ... I've read up and gotten familiar with some of the initiatives in your areas that you're really committed to and devoted to. I mean it spans of course from children to seniors, the whole gamut, but I understand needing to place emphasis on protecting seniors, because there's so many, and the numbers are growing, and I think that they're becoming more and more vulnerable over time. And you mentioned while we were talking a bit ago about really wanting to engage the medical community in partnership to help with these protections. Can you expand on that a little bit? What are your thoughts about how we as physicians who are working with the senior community, can be of support? DA Stephan: Well, I think that we're finding in a lot of our obstinate crimes or ones where the victims are especially vulnerable, that engaging the medical community is of really big value. And I've come at this through a 28-year journey of public safety and prosecution and working with vulnerable children, domestic violence, sexual abuse, and elder abuse. And we find that whenever you can get a well-educated and trained medical community to spot the warning signs, you can really do a lot better. It's something that I've done consistently in sexual trauma of having doctors really be able to detect that. In human trafficking, we are engaging the medical community on the warning signs of sex trafficking and human trafficking with our victims. And in domestic violence, we've done it for years to look for those telltale signs, document them, and engage police where necessary. But we've kinda left out the elder abuse area. And it is just as important if not more important. Seniors, generally they are so vulnerable to crime because their contacts with the community become less and less as they age. They're not showing up to work necessarily on a daily basis, they're not at school, so the regular places where people may spot those signs are not there. And so the ability ... But they often do still keep a medical appointment, or they have to be seen by a doctor for their eyes, or some issue with their health. And I feel, and my team of experts feel that that is a perfect opportunity to really touch base on the whole well-being of the senior, make sure that they are doing well. Really asking additional questions if there were signs of malnourishment or pain, it's incredible that amount of intersection that medical professionals can find. I mean we are ... Something as simple as even the pain killers or medications for some of our seniors that are suffering from cancer and different pain ailments is getting stolen by caretakers. And our seniors are left to stand for their pain. So that's just one thing. Sometimes they seem like their financial situation has really changed, and they're talking about moving from their home and poverty and things like that, that are also tell-tale signs. So we really believe that the medical engagement is gonna be critical. Dr. Bob: I can see that. I mean it makes so much sense. As you're talking about some of these things, that's actually ... I'm getting chills to think about how vulnerable some of these people are. And they're at a point in life when they become so trusting and dependent. And then if somebody is taking advantage, there is just reluctance to call them out on it, because then they're even more isolated or they're at that person's mercy. So there are so many factors at play that would keep people from getting out from under some sort of abuse of relationship. So, really, we need to look at any advantage that we can find and the physicians and the nurses and the people in those offices or whatever they're going, getting their blood drawn if they're going to get X-rays. I think it makes so much sense to create an army of people who have the same mindset, the same perspective of trying to protect our most vulnerable people who don't have enough protections in place. DA Stephan: I completely agree. I mean you've really hit it on the nose. It is creating that army of eyes and ears and touchpoints that are natural, where our vulnerable populations may have that kinda rare human touch of someone who actually cares and is there for them, and taking full advantage of that. So that was kind of part of the genesis for me bringing together in San Diego, a regionalized coordinated plan, blueprint, to combat elder abuse and to protect our seniors. And we had a blueprint, if you will, for domestic violence, child abuse. But while we were doing a lot of work on seniors and crimes against seniors, we were working in silos. So the prosecution, law enforcement lane, the aging and independence services, the medical community, all kinda working in separate venues. We weren't seeing the whole coordinated vision for how we can do better. And what drove me into prioritizing and recommitting to this, is that San Diego very very fortunate for this, and really a credit to our whole community that just has a beautiful spirit. We are one of the safest urban counties in America. We are at a 49 crime rate low. However, the one outlier is that crimes against seniors went up by 38% in the last five years. And for me, how our civilization treats our most vulnerable, our children, and our seniors, and our disabled, is really gonna be how we'll be judged, how we will be judged as a civilized society. So that just didn't sit well with me at all. And I am in a full combat mode to bring those numbers down. And we brought together small stakeholder groups to iron out where the gaps are, where the needs are. We then went to a larger stakeholder group. We drew out a blueprint of a coordinated plan so that we don't miss these touchpoints. What is really incredible is that we're seeing so much similarity between seniors not reporting and how under-reported the crimes are as we see in areas of sexual assault and human trafficking, strangely enough. It really is that element of shame. Seniors report to us, when we uncover their abuse, that they felt ashamed to tell someone, they felt it made them seem weaker, they felt stupid for falling for different fraudulent schemes and buying, for example in a case we did recently, fake gems that took out all of their retirement money as an investment. They felt silly for falling for those scams, and they didn't report them. So other seniors became victims as well. So it's really that kinda shame element. And then the element that you brought out so astutely, and that's that a lot of the abuse is really by caretakers who are sometimes family members, often in San Diego, and I know across the country, it's an older son, who is taking care of a widowed mother. That's our number one target for abuse. And that older son is ripping off the mom, they often have mental health issues and drug addictions, and the mom is ... This elder mom is just a victim continuously. Dr. Bob: And there's probably some really blurred borders there, right? The boundaries of that, where does helping your child and abuse begin. So that's probably a really difficult one to go after, but if the numbers show that this is one of the big areas, then obviously we need to figure that part out. DA Stephan: We do. And in San Diego, what we're trying to do is we're trying to offer the seniors an understanding that our goal isn't gonna be just to lock up their son. Our goal is to also provide mental health treatment, drug addiction treatment, offer treatment for the son, so that the mom is not alone. But we also are not gonna permit that abuse. It just can't happen. So really we have a very excellent elder abuse unit with trauma-informed people that care, victim advocates that talk to our seniors about look, if you don't come forward, if you don't go through this, this is only gonna get worse. But if you let us help, we will do everything possible to also help your son find treatment, find resources, so that you're not alone in this. So it's a very balanced approach to the issue. Dr. Bob: That's wonderful. Well, so we've been talking for about 13 minutes now, and I'm totally inspired to try to provide support and throw my hat in the ring in some way. So when we're done with this interview, I do wanna make sure we follow up. Because my practice, my whole model practice it was developed to protect people from the gaps that exist in the healthcare industry and the general care industry, because there are all these places where people, especially older adults, seniors, people with illness, where they're so vulnerable, and the system is not necessarily intentionally abusing them, like some of these other criminals, but the system is creating abuse just by nature of not meeting some of the basic needs of the people who are moving through the system. So there's a lot of alignment. I see our healthcare system just unable to really meet a lot of the complex needs, and so people are just sort of pushed along into what's most convenient, and what's most sort of accepted, and then they find themselves, I call it kinda like down the rabbit hole, looking up and thinking, "How did we get here, how did we find ourselves in this place that is so foreign and so unfriendly." So I think it's just a natural additional kind of commitment to try to help figure out how the medical community can partner better with you and your organizations to further protect these folks. DA Stephan: I agree. And these collaborations, they just really ... I call it the multiplier effect. I think the time for kind of silos and people thinking that they just care for their own lane, it doesn't really work when you're dealing with vulnerable populations. We need kind of to build those intersections in all of the world, to kind of work together. One really unique thing we're doing here in San Diego that I think is something to be copied, is we've developed a website called ChooseWellSanDiego.com or .org, Choose Well San Diego. And what it is, it's sort of like a Yelp for senior homes, to create a way where we track the complaints, complaints of falling, complaints of neglect, different things that may not result in criminal action, but they are sort of an incentive and a motivation for homes for seniors to do better, to provide... level of care. So we have about 100 now rated in our area and are creating ... We can't force them into the Yelp system, but we sort of make sure that we start to get them the majority in there, then if you don't see a particular home that you're trying to place your elder in on that list, then you have to wonder why aren't they participating, and what do they have to hide, so- Dr. Bob: Well, that's great. It's a great thing to promote for sure. DA Stephan: Yeah. So it's things like that. And then the other thing I'm really a believer in is everyone no matter how well-intentioned they are, doctors who care, and community members who care. I think having an easy, handy protocol like with questions to ask, signs to look for, that's what we've done in domestic violence, in sexual abuse, in human trafficking. Those sorts of easy, simple ways to detect harm, to look beyond what is right there in front of you, and look for vulnerabilities and signs of abuse, having something handy. And I'm sure with your experience; we would love to get your input on what would go on a card like this, what kinds of questions should medical professionals be asking. Dr. Bob: I would be happy to. I would love to participate. And then, of course, the next step in that is what do you do with the information, right? Where does it get reported or how does it get followed up on? I know that one of the challenges that physicians and other people who are in the healthcare continuum that they're struggling with, is just time, is not having enough time to deal with the basics of the encounters. And to then add another piece on this of trying to do this additional questionnaire screenings, or if you do identify something that seems concerning or suspicious, to take the time to file a report and do the followup. So all of those processes, of course, need to be streamlined and clear as to what the steps to take are. DA Stephan: Yeah. I mean for sure. I mean in California we have mandated reporting for elder abuse, but it needs to be simpler, more streamlined, more upline, so that people aren't spending more time on those sorts of things as opposed to actually doing the care. And it makes it easier to expand the reporting. So those are all issues that we are grinding away, but this blueprint, this regional blueprint gets us started in the right direction, and with a unified commitment from our community to move forward and make lives better for our seniors, healthier, and let them live in dignity in their later years is really really an important thing. Dr. Bob: Yeah. Well, I just wanted to tell that I'm proud to be a San Diegan, and I've been here for about seven, and I love it, and I don't think I'm ever leaving. I appreciate the work that you're doing; I know that you're ... I can tell how dedicated you are to improving the lot for everybody here. I do wanna make sure that we followup, 'cause I want to contribute to this really important initiative and programs. So thank you for taking the time. DA Stephan: Well, I'd love to meet you in person, and definitely we will be in touch with you. I mean you've been doing this important work and shedding light on these issues with the increase in dementia, and Alzheimer's, and all of the the different areas that make our seniors vulnerable. We all need to give them our voice and our attention. And I really appreciate you too.
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Helping Seniors Transition from their Homes, Jami Shapiro, Ep. 16
04/13/2018
Helping Seniors Transition from their Homes, Jami Shapiro, Ep. 16
Jami Shapiro helps seniors transition from homes with her company Silver Linings Transitions. Learn why she is so passionate about this work and how she can help you or your loved ones. Contact Note: A Life and Death Conversation is produced for the ear. The optimal experience will come from listening to it. We provide the transcript as a way to easily navigate to a particular section and for those who would like to follow along using the text. We strongly encourage you to listen to the audio which allows you to hear the full emotional impact of the show. A combination of speech recognition software and human transcribers generates transcripts which may contain errors. The corresponding audio should be checked before quoting in print. Transcript Jami Shapiro: Thanks for having me. Dr. Bob: Yeah. It's great to have you here. Jami Shapiro: This is exciting. I was really looking forward to this conversation, so I'm glad to be here. Dr. Bob: Yeah. Why is that? Jami Shapiro: Well, death and what you do, it has just really become ... I guess I should describe what it is that I do so that it can set the stage for people. Dr. Bob: Sounds good. Jami Shapiro: Okay. I own a company, as you mentioned, called Silver Linings Transitions and we started as a senior move management company, which is actually part of a National Association called The National Association of Senior Move Management, and I have to step it back a little bit because about 13 years ago, I was diagnosed with thyroid cancer, and I was 34 years old, and it was life-changing for me to have to wait on the diagnosis and at the same time, one of my closest friends died of ovarian cancer. When you look at cancer as a 34-year old, you realized, "Oh, this is borrowed time." A friend of mine who had cancer as a freshman college said that getting cancer was like getting a front row seat to life. Dr. Bob: Wow. Jami Shapiro: Right. I started to look at my own life, and I knew that what I was doing wasn't fulfilling for me. I ended up moving to San Diego from Florida with my now ex-husband, when he took a dean position out here, and it was an opportunity for me to explore what it was that I wanted to do and the first job that I had was actually working at a cancer foundation started by a family who had lost their daughter at 39 to gastroesophageal cancer stage four, and no one knew because we weren't talking about it or what the symptoms were. I loved that they took their tragedy and they turned it into something, which was really very close to who I was. Around the time that I needed to put my daughter into private school, a friend of mine approached me about starting a business selling things for seniors on eBay. That was how we were going to start. Then while she was researching that, we found out about The National Association and they were going to be having their conference in San Diego two months later, and went to that conference, and that was that light bulb that everybody hopes to get, and it was like, "This is what I'm meant to do," and the people that do the work that I do, which is helping seniors when they're transitioning from their homes. It can be the home they've been in for 60 years. It can be the condo that they've moved into, but going into a senior community typically or sometimes into a smaller space is actually very ... It's a tough transition. It's medically identified as relocation stress syndrome, and they say that it is the most difficult transition a person will make in their lifetime. I don't know compared to what you're helping them transition through, but it's tough. Dr. Bob: It's significant. Jami Shapiro: It's significant. Dr. Bob: It's significant, and it's probably under-addressed and under-recognized in general. Jami Shapiro: Absolutely. Right. Then, what their staff represents to them. That's what we're doing is we're helping them go through the mementos of their lives, so I started it that way with a partner. Then, things happen the way life does, and my partner ended up going to work with her husband because he had actually started a business as well. Then, I had to look at how am I going to do this business by myself because I planned on having a partner. I've got three children. Anyway, I ended up shortly after that, putting something on Facebook that I was looking for help because I'm actually as great as my company is, and you have to be very organized to do the work that we do, but I'm not organized. I knew I had to find somebody that was. Initially, I was looking for a partner, couldn't find the right partner. Then, I put something on Facebook in a group of women that I, in San Elijo Hills, we have a little women's site. I posted something, and the first person that responded to me was a woman who had been a stay at home mom for 18 years, and she couldn't find anyone that would hire her. That was when the second epiphany happened, and that was women when they're transitioning back into the workforce whether they're going through a divorce or their kids are going to school, it's tough for women to compete with the younger women and then to have the flexibility, so that became my team and that was women transitioning back into the workforce. Then, right after that, I started, my marriage ended. It was like I'm starting a business simultaneously and going through a divorce. Then, I realized that women including me, if we walk away from careers and even though I worked, we didn't find my retirement. We find it his, and even though I'm getting half of his retirement, I'm starting at a lower level than he is. Then, you've got the issue of benefits. My long-term objective is actually to help the seniors and the other clients because we now help divorcing clients. We help when there's a death, and we go into the home, but it's also to provide meaningful work for women, a platform that will give them to get the confidence to get back up into the workforce, but I see this really ... In my vision, it's national. That's where I'm going. Dr. Bob: That's awesome. That's really great. It's like a trifecta. You're helping several populations that clearly have needs. Many of those needs are unmet, and you're doing it from a place not ... It sounds like, not necessarily because you want to be a billionaire, but because you want to have meaningful work. You want your life to mean something, and you were fortunate to have that wake-up call at 34 when you realized that, "Wow. There really is a limit to all of this," and you needed to do something now. That's awesome. Jami Shapiro: Yeah. Dr. Bob: That's pretty wonderful. Jami Shapiro: Well, that's actually why I called the company Silver Linings Transitions because I would never have gotten to that place if I haven't had that experience. Dr. Bob: Yeah. Well, I love that. It really resonates with me because for me, I've been accused of being an eternal optimist and even in the phase of situations where it really seems like it wouldn't be the appropriate response, I just have this sense of optimism that things are going to work out and I always look for the silver linings, and I talked about that because there always is one. Jami Shapiro: You're absolutely right. There's always a lesson to be learned. Dr. Bob: Yeah. No question about it because we can't control what happens in life. Jami Shapiro: Yeah. That's exactly right. Dr. Bob: What we can control is our response to it. Jami Shapiro: I just wrote a blog about that yesterday actually, and it ended exactly that same way. Absolutely. Dr. Bob: Good for you. Jami Shapiro: Yeah. Dr. Bob: I love the fact that ... We talked about this before we started recording that there's definitely some similarities and alignment in our ... Not just our chosen, I guess career path. Jami Shapiro: And who we're serving, right? Dr. Bob: And who we're serving, but I think what we're trying to accomplish. Jami Shapiro: Our why? I think we both talked about the fact that we both feel like this is a calling. Yeah. I'm also an eternal optimist and I'm so grateful actually that I am because I have a lot of family members with depression, and I know that it's really difficult, and I feel like if I can talk about God because that's really helped me with everything that's gone on is to know that He's given me these talents and there's some reason that I have them, and there's something I'm supposed to do with them. Dr. Bob: Yeah. If you didn't, well, then you wouldn't be fulfilling your reason for being here. Jami Shapiro: That's exactly right. That's right. Dr. Bob: Right? It's so cool because there's ... In your work as well and in mine, we come across people who are in really difficult circumstances often, and they're going through challenges, and it's fascinating to see how people respond to those challenges because I can be talking with a person who's in their 80s, 90s or over 100 who's struggling, and looking at uncertain future, but likely challenging, but they don't feel victimized. They still see the positives in life, and they still feel grateful for what they've had and what life has been for them, and even what's coming. Jami Shapiro: That's right. What they can do. Right. We need to identify what it is we still can do. Dr. Bob: There's such an opportunity, I think, we're not a psychologist. We're not a psychiatrist. We're not the therapist, but in everything that we do, I think there's an opportunity to help to share this sense of the possibilities. Jami Shapiro: Absolutely. Yeah. Dr. Bob: Right? That there is a silver lining to everything. Sometimes people don't want to hear that in the moment, but I think representing that, living it by example is very important, and it sounds to me like you're doing that. Jami Shapiro: Right. It's interesting because I do get to work with seniors when they're going through the mementos of their life as I mentioned, and so we actually ... I have a partner, Bryan Devore, he's a realtor, and we worked together now. He does his own Silver Linings Transitions, but most people who are selling a home ... Well, everyone selling a home will have to move, and a lot of the clients that we come across are seniors who will also need to sell their homes, so we offer that as a bundled service, but we ended up working with four clients together last year. Two of them embraced moving into a senior community. One of them had his name tag on when we met him, and he was excited about going, and he was going to have his meals there, and the other woman put herself on a waiting list and brought my company in, so we could get her ready for that transition, and those two are thriving. Then, there were two situations where we were called in, and they were kicking and screaming going there, both had put deposits down, but neither one of them wanted to be there. Both of them pass within a month of moving, and it just shows like you're right. You don't have a choice in a matter. The only choice you have is your response to it. Dr. Bob: Yeah. It's powerful. Jami Shapiro: We started a TV show actually that we're going to start filming in March, and I'm really excited about showing people what senior community really is and following people who are transitioning into those changes. Dr. Bob: The communities that you're helping people transition to, is it any size? It can be a large assisted living or independent living or small residential care homes? Jami Shapiro: Sure. We've even done an 8,500 square foot ranch in Santa Fe home into a smaller three bedroom house. Anytime there's a downsize and we actually ... I don't want to plug the business because that's something the conversation is about. Dr. Bob: Please do. You're plugging something that's needed, and valuable. Jami Shapiro: We're working with a family now, and there's a little bit of health stuff going on and they are needing to move out of their son's school because there are some issues going on and there are some boundary changes, and so my team is going in and getting the home organized and helping them move because people would say, "Well, do you have to be a senior?" I said, "No. We don't discriminate based on age." We really help, and Bryan is selling the home for them, and as I mentioned, if he sells their home, then he provides Silver Linings Transitions free for our clients. We actually have a website called packedforfree.com, and we actually created a little thing that looks like a Reese's because what's the best combination in the world? Chocolate and peanut butter and next is selling your home and moving. Dr. Bob: Right. Helping someone transition. Jami Shapiro: Right? Move services. Exactly. Dr. Bob: Well, I just moved a little over a month ago, and we're pretty good at moving. We moved a number of times. I think we just changed. Jami Shapiro: Me, too. Me, too. Dr. Bob: ...When I was looking at the website, and the idea that really appealed to me is you get up in the morning, you leave your bed unmade, you go out, you enjoy your day, you go back to your new place, and everything's in place. The idea of that was just like incredibly overwhelming to me. Jami Shapiro: Yeah. For us ... Dr. Bob: I wish I would have known about you. Jami Shapiro: You know what? I wish that every time somebody said that, I got a dollar because I'd be a wealthy woman. Dr. Bob: I know. Me too. Yeah. No doubt about it. Jami Shapiro: Yeah, exactly. Dr. Bob: For me, and probably for you too, it really makes me sad when I hear somebody say, "I wish we had known about you when my mom was ill, or a few months ago when we were going through these challenges." Jami Shapiro: Right. I think one of the things that also we are different than a moving company because the women that I'm hiring are so compassionate, and it's funny. Most of them have found Silver Linings Transitions. One of them when I was first starting the business, and I wanted to take credit cards, I had to have my ... My home was where I was going to work out of the company or work, and she came in to look at my home and make sure I was legitimate, and we've got into a conversation and her father had just passed away, and she was helping her mother go through all of his belongings, and she's actually my head manager now. That's how she found me coming into my kitchen, and then I have another woman whose husband was on jury duty, and he happened to hear somebody talking about the company, and she approached me. People are coming because I think they feel that calling too, and I think it's so evident when our clients work with us that we are just really compassionate and ... Dr. Bob: That's what they want. That's what people want. Jami Shapiro: Yes. Dr. Bob: They don't want someone who is just going to come in and handle the transaction. Jami Shapiro: Right. They would be heard. Dr. Bob: At this day, for some people, yes, it's about cost, and they have to be conscientious about that, but I think for more people at that stage of life, it's about trust, knowing that they and their things are in good hands and that it goes smoothly. Similarly, I think there's alignment there as well that there's such a ... The norm is that things don't go smoothly. The typical situation is people struggle. They try to find the resources, and they're searching, and they're getting recommendations and they piecemeal it together. To be able to say that anxiety, time, frustration by having a teen that they can really trust and feel good about working makes all the difference in the world. Jami Shapiro: Right. I noticed that about your team as well, and it's having a comprehensive solution. I know when I had thyroid cancer actually, I was very fortunate that I lived in Jacksonville, Florida and there was a Mayo Clinic, and the leading person who dealt with thyroid cancer endocrinologist happened to be in Jacksonville. Then, it ended up that we couldn't go because the insurance have that goes. Dealing with Mayo where everything was in one place, and as a patient, it was so comforting versus them having to leave that system and then have to exactly piecemeal it together. There's nothing worse than going through something really tough, and then having to manage all the pieces too. Dr. Bob: Right. The situation itself is stressful, and then to add on top of that all the frustration that comes with trying to get the right support. Jami Shapiro: Right. Dr. Bob: The healthcare system is the prime example of that, which is why we exist. I would be very happy if there was no need for us. Jami Shapiro: Oh, no death. I say [crosstalk 00:15:34]. Dr. Bob: Well, I would be wonder ... People were going to die, right? Jami Shapiro: Yes. [crosstalk 00:15:39]. Dr. Bob: We're not going to stop that, but if everybody has the right support and the right guidance. Jami Shapiro: Absolutely. Dr. Bob: Because the medical system acts like death is not going to happen. They don't talk about death. Jami Shapiro: Right. I'm not supposed to talk about it either. I was telling you we go out and we give talks. The talk that I've done lately is, "Do you own your stuff or does your stuff own you?" Because so many people are prisoners to these rooms, they're not even living in because their stuff is there. They're not even enjoying their stuff, and that's a whole conversation that I still want to address, but when I talked about it, and we're talking about downsizing and going through the mementos of their life, I've been told not to talk about death. We want to bury our heads in the sand. I actually went to ... An attorney was giving a talk on advance directives, and he said that only 10% of people even have a discussion with their spouse about what their wishes are. It's just like we just want to bury our head in the sand. Dr. Bob: Yes, we do, but we're trying to do something about that. Right? Jami Shapiro: Yes, absolutely. Dr. Bob: And people like us, which is why we're having this conversation, which is why people like us who, for some reason, somehow had become comfortable with the concept. It's so important for us to be out there leading by example and encouraging the conversations. I think that there's a shift happening. There's a movement underway, the death cap phase, and maybe I have a warped sense of things just because I'm so immersed in that. Jami Shapiro: Yes. Dr. Bob: But I do get the sense that when I'm out speaking with people, and they learn what I do, it opens up this flood sometimes of wanting to talk about the experiences they've had. You and your team find yourselves in situations where you're having intimate conversations, and people are in a vulnerable time, so you're probably experiencing some of this as well. Jami Shapiro: Absolutely. Dr. Bob: I'm amazed how freely people talk about the experiences that they've had in their life around death of a relative or a friend, and I would say it's probably equally divided between people who talk about how difficult and challenging it was and their frustration with the system and fear about what might happen next time, somebody that they love or they become ill, but there's another group of people who want to share what an incredibly transformational experience it was because they somehow found the resources they needed. They had a great hospice team. They have advocates, and so it seems so ... The goal really seems to be to try to get those people who have had those scary, challenging, frustrating, horrific experiences to not have to deal with that but to be able to be in that other camp where it is a beautiful, peaceful transformational experience. Jami Shapiro: Right. You said something that you're noticing, and you think it's because of the work that you're doing, but I also am ... I've sort of become, I would say more spiritual, and sort of realizing a collective soul now. I actually had read back in my 20s the book, "Many Lives, Many Masters," by Brian Weiss, and ended up having a conversation with...
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"I was scared of death!" How Najah Salaam Helps Those Nearing End of Life, Ep. 15
03/30/2018
"I was scared of death!" How Najah Salaam Helps Those Nearing End of Life, Ep. 15
Najah Salaam at one time feared death. Today, she helps those nearing the end of life. Learn how she overcame her fear and why helping others is so important to her. Contact Note: A Life and Death Conversation is produced for the ear. The optimal experience will come from listening to it. We provide the transcript as a way to easily navigate to a particular section and for those who would like to follow along using the text. We strongly encourage you to listen to the audio which allows you to hear the full emotional impact of the show. A combination of speech recognition software and human transcribers generates transcripts which may contain errors. The corresponding audio should be checked before quoting in print. Transcript Dr. Bob: Welcome to another episode of A Life and Death Conversation. I'm Dr. Bob Uslander. Today, we're here with a special guest of ... a woman who I've come to consider a dear friend, who's been part of the journey since we began Integrated MD Care. I'm going to introduce you and allow you to hear some of the insights and some of the beautiful, passionate words from Najah Salaam, who is the owner of Multi-Dimensional Healing. Najah's an acupuncturist, massage therapist, and truly a beautiful human being who brings light and healing to many of the patients in our practice. Najah, thanks for agreeing to talk with me today. Najah Salaam: Thank you, Dr. Bob, for a really sweet introduction. Dr. Bob: Well, I could go on ... I could actually use almost the full half hour or so that we're going to be talking just to tell people how wonderful you are and how much I've appreciated having you in my life, and being able to have you collaborating with us and caring for our patients. Najah Salaam: Oh, yeah. It's my pleasure. I love the work that we do. I mean, I could go on for half an hour about you, too. Dr. Bob: Well, we're going to shorten our little love fest, and we're going to actually get into a discussion. If you would, I have the honor of knowing more about you and your background, and what you do and how you do it, but would you be willing to share a little bit about ... kind of where you're from, and how you came to be doing the work that you're doing? Najah Salaam: Yeah, sure. I actually moved to San Diego in around like 2009 from the East Coast. I'm originally from New Jersey. At the time when I ... right before I moved here, I was working for a large marketing ... I'm sorry, an outdoor advertising company in New York City where I was the marketing coordinator. I was kind of at a turning point where I was feeling like this big push for me to make some changes in my life. I wasn't really happy with the work that I was doing there, so I wound up finding San Diego through a friend of mine who just insisted that I come and visit. It just grew on me more and more. I started coming out here. I think I was out here like four or five times, and then like the fifth time, that was it. I was like, "I can't go back on this plane anymore." That was it. I had to move. So with that move, I decided to make some major changes, and get out of the field that I was currently working in altogether, and to embark on something totally different. I had an experience with acupuncture back in like 2001 when I lived in New York City that was so profound that it just imprinted on me at that time, but I was so young. It was before I even finished my undergrad. I knew once ... like if I decided to go down the path of an acupuncturist at that age, that that was ... like there's no turning back. I felt as though I still had some unresolved things to do like finishing my undergrad, which I really needed to do for myself, so I decided to put acupuncture on the back burner in 2001. Then I finished my undergrad, and I worked in the city in New York City, and then it came full-circle. Then it became like, "Okay, now what am I doing because this is not fulfilling. This is not nourishing my soul." So that's when I decided to make the move across the country. Pacific College of Oriental Medicine, the school that I had originally had that impactful acupuncture treatment in New York, the school actually started in San Diego. So when I moved here and I was looking up acupuncture schools, it was a no-brainer for me to just go to Pacific College of Oriental Medicine, because that was the school that had resonated with me so strongly those years ago. That's what began my journey. I was at a better place in my life. I felt like I was more mature. I was ready for this next chapter, where if I would've started it back when I was about 20, I wasn't quite there yet. So I needed that time. I needed that time to really discover myself and to find the things that really resonated with me on a really deep level, and that, of course, was helping and healing people and just sharing my knowledge and studying and making sure that I had a lot to offer to all people. So that kind of began my journey here as an acupuncturist onto the four-and-a-half-year journey into studying Chinese medicine and all of its modalities and acupuncture and herbs. I graduated in 2013. So I've been licensed since 2014, and I've been practicing ever since happily. Dr. Bob: Well, it's a wonderful gift that you've found that. I totally understand needing to mature and needing to ... Timing is pretty critical. You found it a little bit sooner in your life than I did. I had my direction. I found medical school. I went into emergency medicine. I certainly was able to serve and support people, but it really took a lot longer to truly find that deep calling and listen to it and move in that direction. I'm glad that you found that pretty relatively early in life. You've got a lot of years left to be providing your unique blend of healing. When I was looking for an acupuncturist, I reached out to a couple of people who I trusted and had been in the acupuncture realm for many, many years at the university. I took them out for breakfast, and I said, "Hey, this is what I'm looking for to add, a phenomenal, heart-driven acupuncturist who wants to be part of this really cool collaborative team. Do you know anybody who might ... who you think might work?" The group that I was with, it was unanimous, "Call Najah," because they had worked with you. They had been part of your training. They had been how you interact with people. I think it was especially important that they saw you working with cancer patients and elderly people. When people think of acupuncture, I think in general, they're thinking of people who are younger and getting through sports injuries or just trying to ... part of a wellness type program. It may not be thought of quite as routinely in caring for people who are extremely ill or approaching end of life. Can you share a little bit about how you kind of moved into, I guess, becoming comfortable and passionate about working with some of the patients that we're caring for? Najah Salaam: It was quite a journey because I think when I first moved to San Diego, I was really scared of death. I had a really weird relationship with death, and with the elderly. I didn't have much experience with working with the elderly in that way when I first moved here. Then through my studying at school and learning about the spirit and learning about the energy, and how the energy that is in us, it just continues to move and go even if ... once the body is no longer there. It's like a never-ending life force that we all have, and really learning that. I became so comfortable with the idea of death and dying as it just being like another part of life. With that, it gave me enough ... I felt like strong enough and confident enough to go and work with a delicate population. So like when we had like the last year of our school, we have like your internships where you were actually going out into the field, and we have externships rather. So the externships, you get to pick where you'd like to go. So there are all different ones. There's like you can work with children. You can work with the homeless. You can work with HIV and AIDS patient. There are all sorts of internships or externships that you can do. The only ones ... I thought about it long and hard, on the groups of people that I felt as though I could feel the most ... like I can help the most, and I can really like give it my all and be really comfortable. I just kept on coming back to the senior center and then the cancer center. It was just something about being at that tail end of life that I found comfort in with just helping soothe and care for people that are maybe uncomfortable at that stage. It just felt like a natural calling to me. Once I've figured it out, once I figured out where I fit, I just kind of immediately went to the senior center and did two semesters at the senior center, and then I did three semesters at the cancer center, and then actually volunteered after I graduated there for another semester. Just, because it was a hard place for me to leave. I didn't want to leave there. Dr. Bob: I understand that. You said you developed a greater degree of comfort with the whole concept of death and dying. Do you feel like that happened as a result of these relationships and the encounters you had with these folks, or do you think that had happened before, and that's partly why you felt so comfortable? How did that come about?Najah Salaam: It's like a mixed bag, honestly, because like when I was young, I was thinking about this before, like my first encounters with death, and when was my first experience. I was like, "I don't know if I've had anyone." And I'm like, "Oh my gosh, yeah." From the time I was about 13, there were people around me that were dying, and not even dying because of old age, or they were sick, dying from just tragedy from a young age. So I was seeing ... death was around me. I was seeing people literally just being plucked away. So they were here one minute and then they were gone. That was kind of my first exposure to death, was when I was about 13. The whole time, up until I was about 27, it just became like this thing where it was like this big unknown. Then along the way, I started reading some books. Like my parents, thankfully, they're like very spiritual people. So they always had really great books at the house. They had one book, Conversations with God by Neale Donald Walsch. I started reading the first book. It was just like, all of the questions that I was having in my mind were being answered like little by little with each chapter that I read, and then reading future books. He wrote so many books, but reading later books as well, all of that started to really explain to me like more about this whole process. Even though I was still more scared about death when I was ... right before I moved out here, it was kind of like I wanted to know. I came here with this question. Like I really wanted to know about death. I had to ... because I didn't feel comfortable with it. Then while I was in my studies at Pacific College, I had a really great teacher who's my massage teacher, actually, Robert Leak. He talked in like energy. He was the one that started to really open up my mind to the whole concept of death and dying and the whole entire span of existence, so to speak. I had one semester with him, and we were always talking about energy. He was always giving us really cool tips and information. I remember one time, in particular, he said, "Let's all go outside and ... share energy with the trees. I'm going to show you how to do this." I was like, "Wait. What? What do you mean share energy with the trees?" He was trying to show us how there's energy within everything. So we all go outside in the backyard, like the back area of our school, and there's a bunch of little trees there that were planted. So he shows us how to do it. There's a certain way that you approach a tree, and you're looking to have the tree like invite you to come and share energy with them. It was like this really, really weird kind of like experience. Because I never thought that I would ever be essentially tree hugging. I never thought that I would be doing that. But in doing that exercise and learning how to just tap into the energy within you and then learning how to share that energy with another living thing on this earth was really powerful. So I just remember it like at that moment, I started to really think about like things in an energetic way that there is this whole chair. Then, I went to a yoga retreat down in Costa Rica. Then, I had a really profound experience there with a tree, believe it or not, this huge banyan tree. Our tour guide took us to see this tree because it was like ... I mean, you could walk through this tree. It was so big. I remember walking up to it and just being in total awe, because the tree, they grow up and then they have these like branches that come out. Then the branches grow down, and they reroot. So the tree just becomes massive. If you let it grow, these trees will just continue to grow. I just remember putting my hands on the tree, and it was like a flash hit me and I heard this voice that said to me, "What is alive in you is alive in me." That was the moment that I understood; I understood this energy that goes through all things. I understood that it's never-ending. Because I realized like it was such a profound experience for me because I had already had all these things about life and death and dying. Then to have this moment with this other being telling me that this is ... we share this in common, it's the same thread that's within you is within me, that's never-ending. Then, it was like boom. It was like a light went off. And from that moment, I was like, I understand. That was the moment that made me really understand that dying isn't really dying. So in my mind, I wanted to be around people that were at that tail end of life as a way to make them comfortable with the fact of this next part that's coming, but in my mind, in my heart. I always know ... I know deeply now that it's just a continuation. Just getting people comfortable enough with that continuation of life to me is a huge, huge gift to share. That's pretty much how I got to be comfortable enough that I would want to be with people at that end stage. Dr. Bob: That is so beautiful. I didn't know that story, so thank you so much for sharing it. That's really beautiful, powerful and it explains a lot. I mean, you have clearly an elevated consciousness, in my mind, as far as I can tell whenever I'm with you, so there's something, I think that tree, I think that connection that you made. When you think about it, the trees have been around ... they've been around longer than any other living organism, in terms of having been through the years, the decades, even the centuries at times, so there is wisdom there. And this energy, if you can connect with it and appreciate that, that's a beautiful thing. I recently was having a conversation with somebody who we're talking about green burials. We really want to try to help provide for better, more meaningful rituals around death. That's one of the things that we're going to be working on with our practice, is to not just sort of end the relationship at the time when a patient dies, but help the family and find the best ways to honor people. But in the conversation, someone told me that they had read about a gentleman who planned to be buried beneath a tree, a specific tree, because it was his desire that as his body decomposes and goes back into the earth as its elements, that it feeds the tree, and it nourishes the tree, which then will provide nourishment and connection with the world around, which I thought was a really cool idea. Najah Salaam: Yes. Yeah, I totally agree. Dr. Bob: There's another interesting connection... "Conversations with God" by Neale Donald Walsch was very profound. It had a huge influence on me as well at a time when I was really searching and looking. I had lots of questions about the meaning of life, the afterlife, how are we all connected. A lot of answers came forward in that book. So I'm not surprised that you had also tapped into that as well. Najah Salaam: Yeah. We both did. Wow. Dr. Bob: Yeah. Now you're working in a few different capacities. You're working with massage. You're doing acupuncture. You've had the gift of working intimately with a number of the patients in our practice as they've been gifted by having you as part of their journey. Can you share a little bit about what it's like to be working with some of these people who are really, as you know, that they're, in some cases, in their last days or weeks of life? What's it like to be in that space with them? Najah Salaam: Before I go to see someone, I'm like debriefed on their case, so you know a little bit about them. So you can't help but kind of paint a picture in your mind a little bit before you go. But then when you get there, every single time, every time that I've gone to a patient's house, no matter how sick they are, I'm always blown away by how much life they have in their eyes and in their spirit. Like, their spirit is really bright even if their body is really not cooperating and it's like pretty much failing them, they still have so much brightness around them. Time and time again, I'm pleasantly surprised, because everyone has that. Even when their body ... there's different signs of the body that clearly are showing me ... like the one patient that we had, John, and he had like lots of ... He had like edema down on the legs. So there are clear signs that his body's failing him, but his eyes were so bright. His spirit was, to me ... he was still joking and laughing ... He had just had so much life in him. It's been an honor to be around patients when they're at that delicate stage, and they're also vulnerable at that moment too. They're letting you in, which is a very ... I mean, that's something that every single time when I leave the patients, I am thanking the universe, I'm thanking God for giving me this opportunity to allow this person to let me into their most vulnerable moments. So, yeah, ... I look forward to every patient. Every time I go to see a patient, it is literally the highlight of my day that I'm invited in to care for someone at this late stage in their physical life. I'm always honored. I'm always honored. It gives my life more meaning and more purpose. It's, yeah, it just for me, all around, it's just a beautiful thing to be a part of. Dr. Bob: I love that. That's so clear in the way that you interact with these folks. That's part of what makes it so special and meaningful all the way around, is you're not just going in there kind of as the expert who's going to treat them and fix the issues. You're going in there as a person who truly appreciates and is so committed to making a connection and understanding what they need at that moment, and then feeling this sense of gratitude and appreciation for having been able to make that connection and receive as much as you give. Najah Salaam: Yeah. Dr. Bob: Which is such a huge ... I mean, I think it's missing. I think we don't have nearly enough of that in people who are providing care in our healthcare system. So finding someone like you is such a rare gift. I have seen the way that people speak after they've been treated by you. It goes so far beyond what might happen physically, the relief that you are able to provide through your massage or through your acupuncture. It's just been truly wonderful, beyond description, to have you as a member of the team caring for some of these patients. When you speak about their spirit that is intact and alive and that you're able to tap into, regardless of what their physical condition is, what's happening with their bodies, that's such a huge thing to be keeping a perspective on and aware of. That's really one of the main tenants and...
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Dr. Karen Wyatt Founded the End-of-Life University after a Tragic Incident Ep. 14
03/16/2018
Dr. Karen Wyatt Founded the End-of-Life University after a Tragic Incident Ep. 14
Dr. Karen Wyatt founded the End-of-Life University. Hear how her father's suicide lead her to learn about hospice and a career that focuses on helping educate people about end-of-life care. Contact Note: A Life and Death Conversation is produced for the ear. The optimal experience will come from listening to it. We provide the transcript as a way to easily navigate to a particular section and for those who would like to follow along using the text. We strongly encourage you to listen to the audio which allows you to hear the full emotional impact of the show. A combination of speech recognition software and human transcribers generates transcripts which may contain errors. The corresponding audio should be checked before quoting in print. Transcript Dr. Bob: On this episode, I'm speaking with Dr. Karen Wyatt. Dr. Wyatt is a family practice physician who specialized in hospice medicine for many years, and more recently has created the End of Life University, which is an online site that provides education and tools for people to learn about and become more comfortable with approaching end of life and having the most peaceful and dignified end of life possible. She's also an author, has written several books, including What Really Matters, Seven Lessons for Living From the Stories of the Dying. She also wrote a book called the Tao of Death and A Matter of Life and Death. She is a speaker and a great advocate for excellent, compassionate end of life care. During our interview, there were a couple of little connectivity issues, so there's a couple of very brief glitches. I hope it doesn't take away from the valuable content. You'll get some phenomenal insight and inspiration from this interview. Thanks for tuning in. Thank you, Karen, for being on our show today. Dr. Karen Wyatt: Hi, Bob. Thank you so much for having me. Dr. Bob: We had a chance to talk a couple of weeks age when I was interviewed for your podcast, and it was a great conversation. I think we both recognize that we have so much alignment, so many things in common regarding our careers and kind of where our priorities are, where our visions are trying to take us. You probably see this as well. Most of the people who are really passionate about providing great care for people at end of life have a personal experience or a personal story that kind of fuels their drive and their passion for that. I know you have one as well. Can you share a bit about how you became so aware of the importance of providing really phenomenal end of life care and making appropriate preparations? What's your story? Dr. Karen Wyatt: Yes. I'm happy to share that, Bob. It started for me a long time ago, when I was just a young doctor, brand new in medical practice, and I had trained in family medicine, but honestly had no training whatsoever in end of life issues. I hadn't received any ... at all around death and dying, which is shocking really when I look back and think about that. I really didn't have any knowledge or awareness of end of life issues and what was happening in that arena. But at that time I was in my early 30s, and my own father committed suicide, which was a horrific tragedy for me and my entire ... , but particularly devastating to me, because I was a doctor, because I had done extra training in psychiatry, just so that I could treat people with depression, and I had worked with some suicidal patients in my practice. The fact that I couldn't help my own father just completely tore me apart and really caused me to question, "Am I even a good doctor? Should I even be doing medicine?" I floundered for about three years with just overwhelming guilt and grief after my dad's death. One day I got the idea to call hospice, even though at that time I wasn't even really sure what hospice did. I knew so little about it, but this inspiration just popped into my head, "Call hospice." I called and had a chat with them, the hospice in my community, to see if I could volunteer in any way. It turns out their medical director had just resigned 30 minutes before I called, and so she said, "Actually, we have a job for you right now." Knowing almost nothing about hospice, or death and dying, or end of life care, I became a hospice medical director. From that moment on, my training started in really learning about dying. I was trained by the nurses. Our hospice at that time had nurses who had worked there for 10 and 15 years, caring for dying patients. I just followed them everywhere. I sat with them, and I just soaked up all this wisdom, and experience, and knowledge from them, all things that, looking back, I know I should have learned as a doctor. It was embarrassing that, as a doctor, I knew so little, but once I started making home visits to patients in hospice, I realized this is where I'm meant to be. This is the kind of medicine I was meant to do all along. It felt like I was home in a way like I'm doing what I'm supposed to be doing now. It was a huge relief to me professionally to be finally offering the kind of care I wanted to give. I loved the fact that hospice was team-oriented, so I got to work with other people, with nurses, and home health aides, and the social work, and the chaplain, and we would all meet together to provide care as a team. That really fit perfectly with how I thought care should be offered to all patients, not just end of life patients. I spent many years doing hospice full time. I left family practice, did only hospice for a number of years. I just had profound experiences there, and I can say really by just immersing myself in death and dying is the way I found my way through that horrible grief and guilt that I was carrying after my dad's death. Long story, but as it goes, I ended up deciding I wanted to write a book about patients I had cared for. ... It took me many, many years to actually do that, find the time and get the book written, but I finally got that done, and I ended up leaving medicine in order to start writing. That happened eight years ago. Now I haven't been in clinical practice. I've been doing more writing, and speaking, and educating for the past eight years. Dr. Bob: Do you feel like the time you have devoted to A, caring for patients and being a part of that amazing hospice team and the work that you've done as a teacher and a writer, have you eased your conscience? Have you gotten to a place where you're not feeling guilty about what happened at this point? How has that worked? Dr. Karen Wyatt: Yeah. I would say it's much better now ... what I've begun to see over time, and it took a lot of years, is my dad was on his own path. He made his own choice and that really I couldn't have interrupted it. It was his decision, and he was determined to do what he did, and that my life intersected with my dad's life, because I was on my path, and his death is really what shifted me I think to a place I needed to be and a place I needed to go, and that without his death, I probably would never have ended up in hospice, and not that I'm saying that's a justification or the reason why my dad died, but it all fit together in that way and kind of brought me to a place where I needed to be. So, I was able to let go of feeling responsible for my dad, and allow my dad the responsibility for his own choices, and feel like I at least was able to make something beautiful out of the tragedy that happened. Dr. Bob: That experience, it's interesting, because I talk to so many people who go through a death, they go through what's a tragic loss, and ultimately there's something powerful and amazing that comes out of that. I couldn't say that that's ubiquitous, and it happens in every case, but I know a number of people, and myself included, where death has resulted in a transformation of some sort that clearly would not have taken place without the death having occurred. I think about the silver lining of life and death. For myself, the first real, peaceful death that I ever encountered or was part of that experience was my friend, Darren Farwell, who died at 32 back in 2001, and for me that was what planted the seed of wanting to provide this amazing type of care to people, you know, this interdisciplinary, holistic, compassionate type of care, because I got exposed to hospice for the first time. Then additionally, his wife ended up creating a foundation to help ... He died of melanoma, and his wife, Rhonda, created a foundation to help support education about the dangers of the sun and then built a company called UV Skinz that makes UV protective clothing and swimwear, which has grown into a phenomenal company. I see these UV Skinz being worn all over the beaches of San Diego and Hawaii. I talked to so many people over time who have been able to make something remarkable happen as a result of having experienced a death in their life. I'm assuming that you've had similar experiences. Dr. Karen Wyatt: Oh, yes. So many times, through the interviews that I do as well for End of Life University and just people that I've met, in this grief work really, that sometimes as our way of working through grief we take up a project or make a change in our lives. It can be profound, but all of these people, as you're describing, talk the same way, that it was a transformation for them. They really feel like they became the person they were meant to be, who they were meant to be, true path, true calling, once they worked through the grief that they experienced from tragedy. Dr. Bob: Interesting. It's not necessarily the death, the loss, the change that occurs because of that. It's the work that goes into the grief process and sort of the rebuilding of a life after the loss. I'm sure it's all part of it, right? Dr. Karen Wyatt: Yeah. Dr. Bob: But I guess that's probably an important component of it, the work that goes in, and what we learn about ourselves, and the other support that we may get that guides us after that experience. Dr. Karen Wyatt: Yeah. So true. It all fits together, but I think death really awakens us and helps us learn to cherish life and then make the most of it too when it hits us that wait a minute. I won't be here forever. This is limited. I need to make sure that I make the most of every moment that I have. Dr. Bob: I mean, wouldn't it be nice if somebody could have that awareness and gain that awareness without having to go through that experience? I guess maybe that's partly what we're trying to do, right? Dr. Karen Wyatt: Yeah. I've wondered about that, like is it really possible for someone to grasp that? But yes. I think most of the information I disseminate has that purpose behind it, that if only someone hears this, will learn something, will open their eyes a little bit and recognize that natural part of life for everyone, so they need to pay attention to it and be aware of it. Dr. Bob: Yeah. Well, the work that you're doing now, you're very prolific. You're putting out a lot on your website, and you're creating groups. I know you created The Year of Reading Dangerously, a book club to help people get exposed to books that are out there that could give them a new perspective and bring more value. Can you share a little bit about what you've experienced through creating that one program? I know there are others, but I wanted to kind of focus a little bit on that one. Dr. Karen Wyatt: Yes. Well, it's interesting. I got the idea at the end of last year. It would be really cool to do an online reading group or book club, because I had written a blog post about how to start an end of life book club in your community, and I heard back from several people that because of that blog post, they had done a year-long book group, reading books about death and dying. I thought, "But what if I could do it online and have a bigger group [inaudible 00:14:15]?" I had no idea if it would resonate with people if anyone would even be interested and would sign up. I just posted it right around New Year's Day. I posted a little message on Facebook, you know, for my Facebook followers and said, "I'm starting this reading group. You can sign up here if you're interested." That was right before I went to bed one night, and I woke up in the morning, and ... already ... reading group, and within a week I think I had 600 people on the list. That post about the reading group had been shared 57 times, so people were sharing it with other people they knew. Now we have 830 people who signed up for the reading group. We're just reading one book each month during the year of 2018. ... Each month I'm doing a conference call discussion of the book. Most of the authors of the books I've chosen for this year have agreed to come on the call and actually be there for a Q&A session. Dr. Bob: Oh. That's phenomenal. Dr. Karen Wyatt: It's really exciting and really fun. I've been fascinated to see the people who are joining the group. At first, I thought it'll just be all the same people. It'll be all the same people that already do this work who are interested, but I'm getting a lot of people are writing in on the Facebook group, "I know that it's time for me to start looking at death and dying, and I thought this would be a good way to get introduced to it." I'm excited. It was just a fun, little experiment, but it turns out that it does seem to be something people are looking for. Dr. Bob: Well, clearly. I'm part of that group now as well. It seems like there really is a growing sense of desire for people to connect around the topic of death and dying. I started a meetup here in San Diego as well, called Reimagining End of Life Care. The idea is I just want to bring people together from all different walks of life who are interested in talking about, sharing ideas, looking at the issues, trying to bring their own unique perspective and gifts, whether that's a nurse, or a doctor, or a social worker, or an Uber driver, or somebody out in the community. There are 120 people in the first couple of days joined this meetup group, because I think it's just something that's sparking interest. People are getting more comfortable exploring. I think people recognize that if you just allow things to happen by default, there's a good chance that they won't go well. There's more awareness of that. Dr. Karen Wyatt: Yes. Definitely. I think this interest has really grown just in the last three to four years. I don't know if you've experienced that, but it seems like there's momentum now behind it. More and more people are starting to wake up and be at least less afraid of talking about death and dying. They might still be afraid of death itself, but they're less avoidant of the subject now. Dr. Bob: I think that there's growing awareness. There are the death cafes that are popping up. I guess I'm a little bit unsure whether it's just the world that I'm living in, and so I'm much more aware of it, or if it's really happening. I'm going to assume that it's really happening. I'm going to make that decision to choose to believe that it's happening, and we are part of that momentum, and we can help I think, through our experiences and through our desires, try to help to guide people to understand what they can do, what each individual can do to have A, the best possible end of life experience for themselves, to help guide others in their sphere of influence. I think like you clearly believe that the best way to have a good experience or the best chances of having a good experience is to be ready, is to be prepared, is to understand what the potential issues are, what you need to put in place to make sure that you have the best chances of having your end of life go the way that you would want it to go. Dr. Karen Wyatt: Exactly. If you even think about it, would you ever go on a journey to a place you've never been before without preparing for it ahead of time, without reading about it and learning what you need to do in advance before that trip? Getting ready for the end of life, it's really similar. You're just learning as much as you can and preparing yourself, so that you can make choices in the moment when you need to, and that you're ready for whatever might come up on that journey that you're going on. Dr. Bob: You know, I like that analogy. There are people who don't want to plan and are going to take a trip, and they're just going to start driving, right? They may know what their ultimate destination is, or they may not even know what the ultimate destination is, but they're okay with things just kind of happening and rolling with it. There are people who will live their life that way, and not plan, and not prepare, and take their chances. That's okay. That's your choice. The problem though with that is that if that's the way you choose to proceed, somebody may end up taking the flack for that, right? Your loved ones, your family members, somebody's may end up having to make choices that they're not prepared for and have to deal with kind of the fallout, which we see all the time, right? Dr. Karen Wyatt: Yeah. So true. Yes. Exactly. The loved ones might be left with terrible grief, and guilt, and a burden of having to make decisions, and that's something we all need to remember. How do we want our loved ones ...? How do we want to leave them when we do go? Dr. Bob: Sometimes people, they need a little bit more incentive than just doing it for themselves. We all know that it's important to plan and to create advanced healthcare, or we should all know that it's important to have advanced healthcare directed, to have a will, to have these things set up, so that your loved ones won't have to try to figure it out in the heat of things, but I think one way to help to inspire, encourage, incentivize people is make sure that they understand that they'll be gone or they'll be unconscious, but it's the people they care about who are going to potentially carry this burden and potentially carry guilt around with them and regret for the rest of their lives. Do it for them. If you're not going to take care of your documents, and your paperwork, and put things in place for yourself, do it for your children. Do it for your siblings. I think it's a really important message for us to share. Dr. Karen Wyatt: Absolutely. I do know many people who say, "I don't care that much what happens to me, so why should I plan." Your message is perfect, because you do care about what happens to your loved ones, and you want them to have as much peace of mind as possible. Dr. Bob: You've put a lot of things in place, and I really encourage everyone who's listening to go to Karen's website, because there's just a wealth of information, resources, and tools that are out there that can help people move forward with this kind of planning. Can you share a little bit about how that's all kind of come together? Dr. Karen Wyatt: Yes. I started End of Life University actually after I wrote the book, the book I mentioned of stories about hospice patients, and it came out six years ago. I decided I have to do something more than just putting a book out there in the world. That's when I started doing interviews for End of Life University with people who work in all aspects of the end of life arena. I do two interviews every month on End of Life University, and your interview is upcoming in March, the one I did with you. Then I repurpose some of those interviews and have a podcast on iTunes, just like your podcast, that comes out weekly, but I keep getting more and more ideas. I start something good [inaudible 00:23:32] new idea, like, "Oh, wait. That's not enough. I need to do something more." Besides the interviews, I created ... for end of life planning, called The Step-By-Step Roadmap to Planning for the End-of-Life. So, it's just a little course, a self-directed course that walks people through the steps they need to take in order to get their paperwork done, and I'm working on other...
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Nurse Shares Views On Dying, Jen Durrant Ep. 12
02/09/2018
Nurse Shares Views On Dying, Jen Durrant Ep. 12
Nurse Jen Durrant of Integrated MD Care shares her views on dying and why she believes it should be more accepted in society. Note: A Life and Death Conversation is produced for the ear. The optimal experience will come from listening to it. We provide the transcript as a way to easily navigate to a particular section and for those who would like to follow along using the text. We strongly encourage you to listen to the audio which allows you to hear the full emotional impact of the show. A combination of speech recognition software and human transcribers generates transcripts which may contain errors. The corresponding audio should be checked before quoting in print. Dr. Bob: Welcome to another episode of A Life and Death Conversation. Today, I'm going to introduce you to a very dear friend of mine, and a colleague, member of the Integrated MD Care Team, who I'm very excited to introduce to you and let you get to know her a bit because she is a remarkable human being. She is a remarkable nurse, and she is a true, gentle, compassionate, and healing spirit. I know I built her up quite a bit, and she's embarrassed, but that's too bad. Jen Durrant, please say hello to our listeners. Jen Durrant: Hello, listeners. Thank you for embarrassing me, Dr. Bob. Dr. Bob: That is one of my skills, so Jen is a nurse. She is the Director of Nursing for Integrated MD Care, my comprehensive, in-home practice for people with complex and terminal illnesses, and Jen is someone who I can truly say understands what it takes to truly care for people, and she has a wealth of knowledge, and wisdom, and has just been a joy to work with. Jen joined us in our practice just a few months ago, but I've known her for several years. Jen, do you remember when we first met, because I do, and if you don't, that's okay. Jen Durrant: You remember it better than I do. Dr. Bob: I do remember it better than you do, so I remember a few years ago, I was working as a physician with a hospice company. I was doing palliative care and hospice, and I was called out to see a patient because the family was having a lot of struggle with what was going on. The mom was dying, and the family was having a hard time giving up hope of her getting better, and they wanted her to have more treatment, and it was clear to everybody around that she was not in a position to benefit from treatment, and she really, truly was in her last if not hours, then days of life. I came in to try to just be a support, and help guide the family a bit, but I didn't have to do any of that, because when I came in, I saw Jennifer, who with the hospice admissioners, working with this family, and what I saw was a person who was so gentle in her approach, sensitive to what the family was going through, but firm in her conviction that the patient really needed the support of this hospice team, and should not be subjected to any more aggressive types of treatments. I'm not sure. You may not remember that exact moment, but I'm sure that's a familiar scenario in your work in hospice over the years. Jen Durrant: Yes. Especially being a hospice admissions nurse, I was usually the first contact. Sometimes even the physicians hadn't had that discussion with the family yet, so I was used to stepping into those situations, and supporting the family, and helping them see what was really happening with their loved ones. Dr. Bob: Yeah, and I just remember being really impressed. I had not met her before, and I hadn't actually been involved in hospice all that long, so I was learning as well, and I remember thinking, this gal knows what she's doing, and she's doing it really, really well. At some point in the future, if I ever had my own practice, I'd be looking for someone like her to join me. Fast forward a few years, and I was no longer working with that company, and Jen was no longer working with that company, and I was looking for a nurse to join the practice. I heard through the grapevine that she was in transition, and looking for a new home, and I reached out, and it was ... I wouldn't say it was love at first sight, but it was a match, and it's been a great experience, and I think that we have a lot of great opportunities to work together ahead. I hope you feel the same way. Jen Durrant: I do feel the same way, except for me, it was love at first sight. Dr. Bob: I want to ask a little bit, so we've gotten through that. I've told everyone how wonderful you are, and as you know, I share that pretty freely, because I do think you're wonderful. I want to ask, how did you get to the place of being so comfortable in that position, stepping into situations that are so emotionally charged, and everybody kind of coming at you in many cases, needing answers, needing the solutions. How did you come to be comfortable in that role? Jen Durrant: I think it started when worked in pediatric hospice, as a nurse in pediatric oncology, as a nurse assistant, and many times the patients got better and went home, and we got pictures from their high school dances. Sometimes they didn't, and we were there as the kids were declining, and they were getting sicker, and the family ... They're not usually prepared to lose their child. The parents are supposed to go first, and I just found that I had a knack for holding space for them, and mostly what they needed was someone to listen to them, and you didn't have to solve all their problems. They just wanted to be heard, and from then on, I knew that I wanted to work on end of life, and so after nine years of being a nurse assistant, was finally just take that part out. After nine years of being a nurse assistant, I finally decided to go to nursing school, so I could more fully support people in that phase of their lives. Dr. Bob: When you went to nursing school, did you know at that point you wanted to work at end of life work in hospice? Jen Durrant: I had no idea hospice or palliative care even existed, and so once I learned about that, I knew that was exactly what I wanted to do. Dr. Bob: Yeah. Jen Durrant: Yeah. Dr. Bob: It's a good thing. One of the things that I've noticed about you, and it's commented on by patients and families, is your calm presence. You don't get excited. You don't get worked up. You just, you're a very calming supportive presence, and you do. You listen, you hold that space, and yet you also are firm, and provide the right guidance, so people feel very confident in your presence, so I appreciate that. Jen Durrant: My pleasure. Dr. Bob: Yeah. I could tell. We're going to get that piece out, too. I know I asked you to prepare a few things in preparation for our podcast, and because this is a conversation about life in death, I want to ask you first, what are the things in your life that you treasure most? What is most important to you in life? Jen Durrant: That's easy. That's my family. My son, my spouse, my extended family, my friends I consider family, they're all most important to me. Dr. Bob: Yeah. I get that. What do you think about death? What's your ... Just kind of from a high view, what ... When you think about death, what comes up for you? You're around a lot of death. You see people die. You're in the presence of people dying, and you're not a stranger to death, so what's your feeling about it? Jen Durrant: It's a natural part of life, and just so much as birth is a natural part of life, so is death, and I'm very comfortable residing with people that are dying, with the families that are supporting the people, their loved ones that are dying. I don't feel afraid of death, for the most part, I should say, but I feel it should become more normal, normalized process, and less clinical, not a clinical experience. Dr. Bob: Mm-hmm (affirmative), less of a medical phenomenon, and just more of a normal part of life. Jen Durrant: Right. Dr. Bob: Like it used to be. Jen Durrant: Mm-hmm (affirmative). Dr. Bob: Yeah, and I think we're trying to move the needle more in that direction, and I think part of our goal of our practice is to help people get to the place where when death is inevitable, that they're no longer struggling against it, or fearing it, but it's becoming ... It's just; this is the part of life that we all share, right? We share two things. We're all born, and we all die. There's very little else that we can all say absolutely we will share in this life. I think your comfort with that is a really important part of how you're able to provide comfort to others in that space. Yeah, but we're not always ... I think one of the things that I want to also talk about is the life part, because our practice, while we are really good at helping people die peacefully, we're also really good at helping people feel better, and experience some more, a greater sense of joy, and peace, while they're still living. Can you talk a little bit about how you see your role in that? Jen Durrant: Yes. I think being around people that are passing away and their families is actually really life-affirming for me, and I take that to our patients, and to our families, and I feel I'm able to encourage them to say yes to life and try things they may not have considered before. Dr. Bob: What are some of the things that you have encouraged patients and families to try to enhance the quality of their life, that they may not have been open to, or thought about? What are some of those things that you're really excited about being able to bring to them? Jen Durrant: Working with you has broadened my horizons, and being part of the practice, so really encouraging them to try the alternative therapies that we offer, and the practitioners we team up with. I think a lot of people get stuck on just the medical solution to the problem. They want a pill to take their symptoms away, and so we really explore what does acupuncture look like? What does cannabis therapy look like, or massage, music therapy, being able to talk with a social worker, and pain, for example, going at it from all angles. Yes, we'll medicate to make sure you're comfortable, but let's try some acupuncture. Let's try massage, or maybe it's a spiritual pain or existential pain that they really just need to be heard and have someone to talk to, so I feel we take a more broad approach, and it's really nice to be able to open their minds to alternative therapies, instead of just medication. Dr. Bob: Yup. I completely agree with that, as you know. You've been in the traditional hospice world, and now you're working in this world, which is a private model that doesn't have the same constraints. What's it like to be practicing here? How do you ... I guess from the perspective of a nurse practicing in this realm, and what do you think it's like from the perspective of a patient to have, to be part of our practice versus a traditional hospice model? Jen Durrant: As a nurse, it's really freeing. I felt very constrained by the hospice model. Most of the time I felt I was providing 10% of my time towards patient care, and supporting the family, and the other 90% of the time sitting at my computer charting to Medicare guidelines, and everyone needs to fit into the hospice box. Whereas here, there are no boxes, and we're really thinking outside the box to support the patient and family in ways that weren't possible when I was working with hospice. I've been learning a lot, and learning how to support patients and families in ways that don't just include medications, or offering a visit from a chaplain, but really being able to be with them, become part of the family, and support not just the patient and the family, and the caregivers, and I think from the patient's point of view, they're really just getting a lot of extra support, and love, and involvement that they don't get anywhere else. Dr. Bob: Yeah. That's what I see. One of the things that I recognize with our practice is, there's something unspoken. It's hard when you talk about what it is that we provide that's different, the knowledge that the patients and families have that there's somebody available to talk to at any time of the day or night, and it's not going to be a bother. They're not going to get a runaround. They're going to speak to someone who knows them and cares about them, and who they've developed a trust with. I think that that is ... There's no substitute for that, and it immediately, from the moment they realize they have that, it immediately reduces their stress level, and their anxiety, and I think that allows people to sleep better, to feel better, to eat better, and I didn't quite get how important that was, how vital that was, until enough people had told me that, I just feel so much more relaxed, and know that I can call Jenna for anytime, day or night. Whether it's two in the morning. Jen Durrant: That's right. Dr. Bob: Do you have any particular experiences with dying people, or in death that were really especially impactful or meaningful, that came up? Was that one of the questions that you explored? Jen Durrant: Yes, there are so many. I'll share a couple. One, I was with a patient with his wife in the hospital. I went to do a hospice evaluation, to see if they were appropriate to start service and get them started. When I got there, the patient was already passing away, and I told the family, "We won't have time to get him home. If we try, he may pass away in transport," and they were not comfortable with that, and I could have pushed through with the admission, and made them do a bunch of paperwork, and answer a bunch of questions, but I decided not to, and I just stayed for an hour, and provided support, and guidance, even though they weren't officially under our care. Just to see that peace come over the patient and the family, just because they had a supportive presence there, was really powerful. They felt like they were floundering in the hospital and the system, and just having someone to support brought them peace, and I was there as he passed away. I didn't provide any sort of medical care, because they weren't our patient, but just to be there and watch him transition peacefully really meant a lot to me, and it meant a lot to the family. I've attended a couple more difficult deaths, where the patient's suffering, the family's suffering even more so because it's hard to see their loved one having difficulty, and sometimes I didn't have all the tools I needed to ease symptoms, as far as medications with hospice, and it was really just being able to support the family through that hard transition. I believe as a patient's passing away, even though they may have symptoms, they may have trouble breathing, or make strange sounds when they're breathing, I believe the patient isn't conscious at that point, and perhaps their soul's already floating above their body, and that they're not experiencing that discomfort. I know everyone else may not believe that, but because I believe that they're not really experiencing that, I can help support the family and say, tell them they're not conscious. They're most likely not feeling this pain. They'll be okay. It brings them a lot of comfort just knowing even though they look like they're suffering, there's a calm presence telling them, and supporting them through the process that it'll be okay. I'm here for you. What can I do to help you feel better? It's really an honor to just be there, to guide them, and support them, and ... Dr. Bob: I am sure that it is incredibly impactful, and it changes that experience for them, right, an experience that they could be completely out of control, and terrifying, that they would potentially feel guilty about for the rest of their life, maybe decades. You change that. You couldn't necessarily say the person who was dying, that wasn't the role you were playing, but just to be there, to make sure that they had a better sense of what was happening in a calmness. When they look back at that experience, it will be very different than it would've been otherwise, so I'm sure that ... I know the feeling of the power of knowing that you saved people from having potential years of angst, and regret. That's really phenomenal. Jen Durrant: That's my hope. Dr. Bob: That's our hope. That's what we're doing. Yeah, we're here to support the patients, and comfort them, and guide them, but that's just a piece of it, and those patients will die, and they're gone, living on in the memories of their loved ones, but the memories of their loved ones, and the way that the loved ones then go on in the world, is really part of our work, too. Jen Durrant: Right. Dr. Bob: That's really meaningful, and you get that, which is why you're part of the team, so, and thank you for that. Jen Durrant: Thank you. Dr. Bob: Yeah. What do you think happens after we die? Do you have any direct knowledge of that, or are you ... Can you speak from a factual place, or can you only speak from what you believe? Jen Durrant: Both. Dr. Bob: Really. Jen Durrant: Yes. Dr. Bob: Okay, well, share. Jen Durrant: [inaudible 00:22:47] I've been with a lot of dying patients, and in the process of dying, they will reach out to people only they can see. They will have conversations with people only they can see. I had a really strong experience when I worked in pediatric oncology. There was a patient there. He was 21, and he was only in the pediatric ward because he had relapsed multiple times, and so he came back to the children's hospital to continue treatment. He was about six-four, tall, African American kid, and so he took it upon himself to make friends with all the little ones, or with the new patients, and help them feel supported, and like they had a friend that would understand what they're going through. There was a little boy who was five, and they just bonded. They were both terminal at that point, and that patient would spend hours with this little boy, just talking with him, and telling him not to be afraid. He said, "When you pass," it's making me emotional, "When you pass, I'll be there waiting for you. I'm going to go first, so you don't have to be afraid." The patient passed, let's say, on a Wednesday, and the little boy passed the very next day, at exactly the same time, and before he took his last breath, he looked up, and smiled, and put his hands up in the air. To me, that's a fact, that there is an afterlife, and there are people that are watching out for us. Dr. Bob: And waiting for us. Jen Durrant: Mm-hmm (affirmative). Dr. Bob: That's beautiful. Jen Durrant: It is. Dr. Bob: Thank you for sharing that. I'm sure that ... I think that that will be comfortable for many people, so that's ... Based on that, and other experiences and just your life evolving, you're confident and comfortable with that? I guess confident may be a stretch, but you feel pretty comfortable that when we die, there are people wait ... You'll see your loved ones and people waiting for us? Jen Durrant: I do. I've seen it too many times to be able to say there's anything else different. Dr. Bob: Yeah. I'm in complete and full agreement with that, so have you ever had any messengers, or messages directly that you feel were from loved ones, people who have died? Jen Durrant: I do, more so in my dreams. There was a patient when I was a brand-new hospice nurse. I was really close with her, and her family. She had a young daughter about my age with a son about my age, and the daughter was doing all she could to care for her mom, who was very near death, and so I was highly involved in their care, trying to support the patient, and support the daughter as much as I could, probably doing things out of the scope of my practice, but I was okay with that. The night before my patient passed, I had a dream about her, and in my dream, she was up and walking, but she was trying to take her clothes off, and telling me that her clothes don't fit anymore, and it's time for her to take them off, and find something...
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Why Palliative Care Means so Much to Dr. Tim Corbin, Ep. 11
02/02/2018
Why Palliative Care Means so Much to Dr. Tim Corbin, Ep. 11
Dr. Tim Corbin joins the Integrated MD Care team. He shares his experiences as the Director of Palliative Care at Scripps Health and why working with terminally ill patients is so meaningful to him. Note: A Life and Death Conversation is produced for the ear. The optimal experience will come from listening to it. We provide the transcript as a way to easily navigate to a particular section and for those who would like to follow along using the text. We strongly encourage you to listen to the audio which allows you to hear the full emotional impact of the show. A combination of speech recognition software and human transcribers generates transcripts which may contain errors. The corresponding audio should be checked before quoting in print. Transcript Dr. Bob: Welcome back to A Life And Death Conversation. I'm Dr. Bob Uslander, and I'm here today with my good friend, Dr. Tim Corbin, who has recently joined the ranks of Integrated MD Care after working for many years in various capacities as a hospitalist, a palliative care and hospice physician. Tim, I'm excited to have you on the show, and I'm excited to have you as part of our team, Tim. Dr. Corbin: It's good to be here. It's been a journey to get here, and it's a really exciting future for me. Dr. Bob: Well, we've been talking about working together for quite a while now, and timing is everything. Just so listeners are up to speed on you and what you bring to our team, tell me a little bit about your background, your training, and the work that you've been doing up until now. Dr. Corbin: Sure. Well, I'm internal medicine trained through my residency and became board certified in internal medicine. I went into private practice for a few years. I had the romantic vision of being able to take care of my patient completely in my office at home, in the hospital. I realize in the changes of healthcare that that just wasn't practical. It became more difficult at that time to make a living doing that, believe it or not, with insurance changes, and the evolution of HMOs, and all those sorts of things. What I really loved, being in the hospital, taking care of patients who were facing more serious illness and ultimately became a hospitalist as that movement was developing, so spent over 10 years being a hospitalist and taking care of patients in the hospital. But all along I've been doing hospice medicine. There was just a part of me that identified with patients, and I saw that need, and it was very meaningful work, so always a percentage of my practice evolved around caring for patients on hospice and at home. Palliative care became one of the fastest growing specialties in medicine, you know, kind of in the last 10 years. Having done hospital-based medicine as well as hospice work, I was in a position to really gravitate towards that, and it really spoke to the style of medicine that I like to practice, and I again saw a huge need, and so began developing really hospital-based palliative medicine services, and started one in 2008, and then ultimately became the director of the palliative care service at Scripps Health for four or five years. Dr. Bob: It seems like you were in a really well positioned for palliative medicine, being internal medicine trained, having all that experience in the hospital, working with hospice. I think, like me, what you recognized was there's a gap, right? Dr. Corbin: Absolutely. Dr. Bob: There's a gap between treating people aggressively in the hospital and then sending them off to hospice, where the entire focus is comfort and essentially waiting until the end of life. There's this big gap there, where people still need more care. Dr. Corbin: Having done so much care at home, I think I would see in the hospital what patients were often missing. You know, they were receiving their care in the hospital setting, and I always thought about the possibilities of doing some of this at home, where patients prefer to be and can be more comfortable if we had the abilities to do that. That was clearly a huge gap that's been improving, but in my careers, that was a huge gap for families and patients, so I recognized that pretty early on. I always used to joke that hospital medicine, you know, being a hospitalist and internist, strengthened my care, caring for patients at the end of life, but the opposite was true. Me doing hospice medicine and caring for so many patients when they were dying really strengthened my ability to be a better doctor upstream, as an internist, seeing patients in a hospital or even in a clinic setting. Dr. Bob: So, can you expand on that a little bit? Why is that? What do you think that results from? Dr. Corbin: I think for myself, if I'm effective as a palliative care physician, I'm guiding patients through the process of end of life, if patients and families don't recognize that there was a possible issue that could have caused more pain, or suffering, or difficulty, but I've been able to help guide that that never becomes and issue, because I have kind of a prospective insight about what may be coming, and so part of it is a skill of anticipating when we may not have good outcomes or beneficial care and not providing care that doesn't provide that. The way you set what beneficial care is and what quality is is really having those conversations with patients and families so that you gear your care towards what best supports them as a patient and a person. Dr. Bob: Yeah. What they want, what their goals are. Dr. Corbin: What they want. Dr. Bob: It's so true. I think that most physicians who don't take care of people who are dying or who don't see them in their homes, the traditional office-based physician, really have no idea what those challenges are and what's happening with people once they're no longer able to come to their office. I don't fault them for it, but there's a certain amount of ignorance or just lack of experience. They can't anticipate it, which if they can't anticipate it, they can't do anything about it. ` Dr. Corbin: You can take a history and a social history and ask patients, but when you're in the home, and you see for yourself, you see aspects that will affect patients' medical care. Now we're getting in the realm of talking about the social issues and the emotional issues, even spiritual issues. You go in a house, and you can tell a lot about what's important to a patient, and you can immediately identify conflicts and what we're doing medically that don't align with that. Dr. Bob: Right. That don't support that. Sure. Dr. Corbin: In fact, many times I would say, "You know, let me come see you at home next week," and patients laugh out loud, or they're taken aback. They say, "Well, I can come see you in your office." I say, "No. I really want to come see you at home," because I anticipate that later I will need to come to their home–in a fair amount of time–but also, again, it gives me that insight, and there's something about being in a home environment, where you break down some barriers of trust. You can be open with each other to really talk about what's most important. I had a very elderly patient who had a lot of medical issues going on. I thought I was going to her home to talk about that, but her cat kept bothering us while we were trying to have our interview. What it came down to, one of her biggest stressors was, "What's going to happen to my cat? Who's going to take care of my cat?" These things were affecting her ability to make medical decisions about what she wanted and what choices she wanted because she was worried about who's going to help take care of her cat. Dr. Bob: If she were coming into your office, she probably wouldn't feel like that was worth your time, right, to bring that issue up. Dr. Corbin: Right. If I were really an astute clinician, I'd notice the cat hair on her maybe, and I would be able to ask those questions, but I'm usually not that good. Dr. Bob: The second part of that is that someone who's in the patient's home may see the cat, and the cat may come up in conversation, but they wouldn't really be so perceptive or be so concerned about that dynamic, so it's not just the fact that you're there. It's also the fact of who you are. Dr. Corbin: Too often what we see as important to physicians and clinicians is medically based. It's disease based. We don't often think about the social dynamic of patients and how that may affect their health and their decision making. I think that is so true in the hospital setting because patients become institutionalized. I mean, you're giving up your freedom in many aspects, because you become a patient, and you become a patient within a hospital that has certain processes, and rules, and you don't have access to your home. This is something that is tolerated, obviously, by many patients, and we give amazing care, but when you start having patients who that's not really the most appropriate place for them to be, then we have to start creating better solutions than using the hospital as a way to kind of take care of patients who really don't want to be there or don't need to be there. Dr. Bob: Right, or don't need to be there, or it's detrimental for them to be there. Let's segue into that. We'll go back and talk more about what you're doing now because you've made a shift, and you're no longer in that position of running the palliative care and hospice program at Scripps Health, much to many people's dismay over there and joy on our side. But I wanted us to talk a bit about the hospital experience, the gaps that people experience, the challenges, because me, having my experience of being an ER doc for so many years, seeing people coming in various states and conditions, you as a hospitalist, palliative care physician, hospice physician, I think we're in a unique position to help people understand some of the challenges and risks that they face when they are in the hospital dealing with complex illnesses. You can I could spend hours, and hopefully, we will, talking about the different challenges and gaps that people face and ways to help avoid being harmed by them. Well, let's spend a little time focusing on what happens in the hospital, what doesn't happen in the hospital, what happens when people are preparing to be discharged, and where are the gaps, and what can people do to help prevent any further turmoil or challenge? I mean, you mentioned when you're in the hospital, you're in an institution, right? You're in their territory, so you lose some of your freedoms. I think that people who work in the hospitals, they lose sight of that. I mean, they're busy. Everyone's working hard. No one's lollygagging around, for the most part. I will make generalizations. In general, I think that people in healthcare really do care. They really want to do the job, and they really want to take good care of people, so it's less of a personal personality issue, and I think more of an institutional system problem, that we just don't have enough staff. We don't have enough people to provide the kind of personalized, supportive care that people are looking for and need, and that's largely a financial issue, right? I mean, what's your perspective on that, having spent so much time in the hospital? Why don't people feel, in general, like they're well cared for? Or do you think that they do? Dr. Corbin: I think in many cases they do, and in many cases, they don't. I think one of my family members, in their personal experience, made a comment that in the hospital they felt like they were a cog in a wheel, where there's this path of workup, and diagnosis, and treatment that is on a course of, you know, kind of standard medical treatment that, again, a patient gets put into. A patient's in a bed. The physicians discuss having, "Well, we need to get a CT scan." It's ordered, and all of a sudden someone shows up to the patient, and they're whisking them to the radiology, and the patient doesn't understand why. When you sign yourself up in a hospital, you're signing yourself up and agreeing to the treatment that needs to be done for your particular issue. As physicians and clinicians, we're trained to treat that condition. You know, there's kind of a process and an algorithm to that, to a certain extent, and we don't often go off course. To not do something could risk missing a diagnosis or risk of there being downstream harm, and physicians are very sensitive to that, whether it's from the standpoint of malpractice or not providing a standard of care. The standard of care becomes doing everything, which is not always appropriate. It's not always beneficial care. I tell you, patients often recognize that, and they understand that and are willing to take that risk, if you will, so there becomes this disconnect between what the treating teams are doing and what the patients really want. The patients, it's not that they don't want to be hospitalized. They may say, "You know, I'm weaker at home. I'm 90 years old, but my quality of life's pretty good, so I don't mind coming in and getting treated for pneumonia, but I'm not really up for getting a bunch of CT scans and being poked and prodded and this sort of thing," so where is that balance? In many ways, it's the physician's job to cure and to treat fully, but we're not always taught how not to do everything, so I think patients need to recognize that. There are many times patients bring up the fact and want to have this conversation. So, in the last 10 year, palliative care teams have developed in the hospitals, which are multidisciplinary teams made up of physicians, and nurses, and social workers, and even chaplains to really address patients' emotional, social, spiritual needs, as well as their physical needs, but really it developed as a support team to help support patients with serious illness through the hospitalization, which is kind of crazy when you think about it. Our technology and ability to treat patients is so, you know, high tech and the ability to keep patients going and keep patients alive is so extended that we need support teams to help- Dr. Bob: To protect them. Dr. Corbin: ... to help fend off, you know ... It's kind of like the ability to turn off your cellphone and ways for patients to connect with you. It's very interesting when you start thinking about the ... I always joke that I hope I don't have a job as a palliative care doc one day because that means that our healthcare system is treating patients with the values and the principles of palliative care that we don't need specialists in palliative care to do this. I think we'll always need our expertise and specialty, but there's so much work to be done in that realm of taking care of patients holistically. Dr. Bob: So, a huge issue that we touched on is that when people are in the hospital, sometimes the care is appropriate, and then there are times when it just goes beyond what they would want or might seem necessary because that's just the way it's done. My sense is that it's the path of least resistance. A person is in the hospital. They've got a condition. Something else might be identified. Then they get a consult with the kidney specialist, and they get a consult by the cardiologist, and a consult by the infectious disease guy, and the pulmonologist. Everybody gets a piece of this patient. Everybody gets paid, but everyone's ordering the tests that they feel are appropriate, potentially the treatments that they feel appropriate, and then before you know it, there are six different physicians treating the patient, and they're now a week into it, and they've been tested and treated way beyond they may have ever wanted, because those conversations are not happening. Dr. Corbin: Let's think about each of those physicians who are seeing those patients, who are amazing clinicians, really good docs, want the best for the patients, want the best outcomes, so intentions are all perfect and good, but in today the chances that any one of those physicians has a long-term relationship with that patient is almost zero. We now have sub-specialists, who do nothing but round in the hospital for their group. We used to have just hospitalists. Now we have cardiologists that are hospitalists. We have GI docs that are hospitalists. We have neurologists that ... when you get admitted to a hospital, you have this new team taking care of you, and no one has had that relationship over time. If you, as a patient, have defined what is most important to you and what your true goals are for your life, what gives you dignity and respect, and how you want your life to go as you become sicker, no one has appreciation for that. That's one reason we have palliative care teams, because we sit there for three hours and try to understand this, so we can affect what we decide to do with patients. If you don't have those conversations, as my family said, you become a cog in a wheel, where we're going to treat whatever's going on as we do everybody, and there are tremendous pressures to then get you out of the hospital. You know, we always want a shorter length of stay. Dr. Bob: We do everything- Dr. Corbin: When I first started as a hospitalist, patients stayed in the hospital five or six days. Now it's down to below four days, three days average length of stay. Tremendous pressure to see patients, make a diagnosis, start treatment, and then get out of the hospital. So, you don't have the luxury of time to sit there and think about what you want, or you don't want, because people are coming up to you constantly saying, "We need to do this next and this next." So, it can be completely overwhelming. Families and patients get in a crisis mode. You know, I tell families and patients, "It's really not a good place, in a hospital, to be making life or death decisions, when you're in a crisis mode, where you're emotionally stressed. You haven't been sleeping well. Family's flying in from out of town everywhere, and you're being asked to make decisions that hugely impact what your future is going to look like. You really need to try to have these conversations earlier." Dr. Bob: Very critical information, the timing of that, when you do it, but a lot of times it's not being done. Dr. Corbin: Absolutely. Dr. Bob: So, we now find people who are facing this. They're in the hospital. They're being asked or kind of demanded to make a decision about what's next for them, which may mean going home with certain treatments. It may mean going home and being in hospice. It may mean going to a nursing facility. But they're being pressured, because of what you were just describing, where there's pressure on the physicians to discharge patients and get them out of the hospital quicker, which in some cases is appropriate, but it puts this new sense of time pressure on families to make decisions, and they're getting it from the hospital discharge planners, and the case managers, and now the doctors. So, what do you do? Dr. Corbin: Yeah. You started this conversation talking about gaps in care. I think the gaps are that, you know, our healthcare system's kind of in silos. You see your primary doctor. You go to specialists. When you're in the hospital, you have your hospital team. When you leave the hospital, you may go to a facility, like a skilled nursing facility, which has its own team. So, the patient needs to speak for themselves. We talk about healthcare now should be more patient-centered and family-centered, where the patient should have the autonomy in decision making to make decisions that are best for them, but they're constantly facing a new team. I once looked at social workers' touches on a patient who had cancer very early in their diagnosis all the way through to the end of their life, and they had five different social workers over the course of like a two year period. You know, they had a social worker, outpatient oncology social worker. They...
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Creating Peace at End of Life, Julie Chrisco Ep. 10
01/27/2018
Creating Peace at End of Life, Julie Chrisco Ep. 10
Meet Julie Chrisco, a nurse practitioner with Integrated MD Care, who is passionate about helping people have the best experiences as the age as well as creating peace at end of life. Transcript Dr. Bob: Today I am really happy to be introducing you all to one of the newer additions to our team here at Integrated MD Care, Julie Chrisco. Julie is a nurse practitioner who's got tons of experience working with people at the end of life, both in palliative care and hospice. She is I think as passionate about this work as I am, which is why she's here working with us. Julie, welcome. Julie Chrisco: Thank you. Dr. Bob: Absolutely. You're very, very welcome. Thanks for taking the time. I'm really looking forward to having people get a sense of who you are and why this work is so important to you, and what you bring to it. This whole life and death conversation idea is really just to allow other people to listen in and hear the discussions that are so meaningful and poignant. I think as we have conversations day in and day out about some of the aspects of care for our patients and the ways that we're trying to support them and enhance their lives, and the challenges, I think so much of it is just so fascinating. I wish that people could be more consistently listening in and hearing these things because it would make, I think it would be ... It's very, not only is it interesting, but I think it is helpful for them to see how things can be addressed, and how challenges can be overcome, and how the final phase of a person's life can be supported. Again, thanks for being here. You know what, I'm going to jump right in. I'm going to talk a little bit about some of your background, and we'll add that in. Bottom line is you've been a nurse for many years. You've been in the hospice world for quite a while now. You're a nurse practitioner doing deep, deep work with people who are dealing with challenges, who are in many cases dying, taking their last breaths. Is it okay if I ask you a couple personal questions? Julie Chrisco: Sure. Dr. Bob: I figured that was the case. One of the things that I like to do with the guests who come on the show is to get a sense of how they feel about death, about the experiences that they've had, so that, because obviously there has to be a certain comfort level with death to do this work right? Julie Chrisco: True. Dr. Bob: I mean if you were afraid of talking about it, if it was anxiety provoking, I imagine you wouldn't be really effective at taking care of people who are in this phase. I'm just going to put it out there. What are your thoughts? Do you have any fear of death? What are your thoughts about death? How do you view it? Julie Chrisco: I can truly say I'm not afraid to die. I'm not going to lie, but there are things that I question, and I wonder, but I wouldn't call it fear. Fear is one of those loom and doom type things that I don't, that's not my perception of death. I've been involved with a multitude of deaths from patients that iv cared for to family members. In my opinion, death is just as life as part of what exists. Births come, and death comes too. It's just it's all part of the continuum of life. Therefore, I am not fearful of ending my life. I wonder and I worry maybe, I don't know if worry is even, I just I truly honestly want to capacitate myself, or be encompassed in a group of people, or my family, who are on the same page as myself because I know that end of life can be super peaceful, and comfortable, and wonderfully meaningful. That's what I need for my end of life experience to be, but I also know that there are tragic end of life experiences that happen where people don't, aren't allowed the ability to have that sort of thing. I don't fear that. I don't fear a quick, instantaneous death. I fear more of the human suffering that can go on. But I know that if you encompass yourself in a team of like-minded human beings and people who are on the same page as you, that doesn't have to look like that. Being in this work for as long as I have, I've seen so many beautiful end of life experiences. I will say that I have a really strong faith in the Lord and the hereafter. I truly believe that the hereafter is way better than the human suffering that goes on here on Earth. Yeah, there is, it's a peaceful feeling to think that there's not going to be pain and suffering in the hereafter. That looms in me, or resides in me, in a way that death is not scary to me. Dr. Bob: I imagine ... Well, thanks for sharing that, and I resonate with that very well. I also have this sense of how critical it is to ensure that the final phase of life, before we move into the hereafter, that the final phase of life is as you described supported and peaceful. I think we've both seen that that can be accomplished. That with the right planning, with the right conversations, with the right support, death, the actual act of death, does not have to be traumatic and painful and a struggle. Would you agree with that? Julie Chrisco: Totally. I mean I have truly seen some situations where I've walked in and thought, "Oh, this is not going to go well." With the appropriate conversation and the team, and the family, everybody being on board and everybody collaborating to an effort to make this final chapter of a human's life the best that it can possibly be, it has been so beautiful that it often times brings me to tears because what a great way to transition. Just like you want your pregnancies and the birth of a child to be very beautiful and peaceful and wonderful, you also want that for your end of life experience. It can go really, really well, and it can be one of those things that sort of almost takes your breath away, or it brings you to a moment of complete humbleness because of how well orchestrated it can be. Dr. Bob: I love that. The orchestration part is to me; I get this image of like a beautiful symphony that everything is working together. Really it can bring you to tears. It's odd, not a lot of people would think about death that way, but I think those of us who are in this field and in a position to put those things in place, and have seen how a well-orchestrated end of life experience can go, it does feel that way. It feels like you're creating almost a work of art- Julie Chrisco: Right. Dr. Bob: By doing that. Why doesn't it happen? When doesn't it happen? In your experience, what keeps people from having that really peaceful beautiful end of life experience? Julie Chrisco: I think there's a multitude of things. I think there's the resistance to death. I think that's a huge component. Whether that resistance to death is a personal thing, like an actual patient, has the resistance to the death and therefore they sort of resist all levels of transition, or if there's a family, or friend, or whoever, caregiver situation where they're super resistant to the end of life. I think that can create turmoil and chaos in that. Another huge thing is for the patient to not have been allowed the space to explore what the end of life experience is going to be for them. I think it's a conversation that you and I are accustomed to, but I would say the norm amount of people in the world, it's not a conversation they're having. They're not telling their children or their grandchildren, or their spouses, this is how I want it to be, or they aren't even going there in their mind because if they go there in their mind, that means it's imminent, that might make the process happen faster. All those types of things I think are huge obstacles for people not being able to have the picturesque end of life experience that we all grant, or we hope for everyone. Dr. Bob: My sense is ... Yeah, I agree with all of that. My sense is that there's just a lot of avoidance. It takes a unique; I think it takes a unique sort of caregiver or healthcare professional to break through that. I feel like there's a discomfort with a lot of healthcare providers as well. Most physicians, unfortunately even doctors who are taking care of a lot of older adults, it seems like they're not having the conversations about what is coming. Julie Chrisco: Right. Dr. Bob: I see that there's probably a number of different reasons for that. One is just their inherent discomfort. They don't get trained in it, and they don't quite know how to broach it, and it creates a certain amount of discomfort. The other is I think lack of time. In the traditional healthcare system, the physicians just don't have time to be starting that conversation because it's not a 15- or 20-minute conversation. Julie Chrisco: Right. Dr. Bob: It feels to me like so much struggle can be avoided if we somehow are able to find the right mechanism to have the conversations with the patients and the families, and figure out to sort of break through the discomfort with that and resistance. That's a talent I think, so I'm not quite sure how to get the masses. I know how we do it with our patients. We have the luxury of having these relationships. We're in their homes. We have multiple opportunities to broach this. But in the kind of traditional system, we need to figure out a way to get the providers comfortable opening up those conversations. Julie Chrisco: For sure. Dr. Bob: Yeah. There's work to do still, right? Julie Chrisco: Of course. Our work is never-ending. Dr. Bob: I'm sure that in the course of your work, as in mine, we encounter people who are nearing death. They may not be, well sometimes they're days away, sometimes they could be weeks or months away. When you encounter somebody who is clearly afraid of dying, and sometimes they don't quite know why they just know that the whole idea is really just terrifying to them, what are your, how do you tend to approach that? Do you have a process or a system that you use? Julie Chrisco: I would honestly, I will say that I think the fear of death stems from numerous reasons. It's really important for me as the provider to sit down and have a conversation with them about where does this fear stem from. It could be the fear of the unknown about what happens in the hereafter. It could be the fear of how this process will go, the symptomatology that may evolve. Will it be painful? Will I suffer? Those types of things. Or it could be a fear of what's going to happen to my loved ones when I'm gone. Being a mother of young boys, I would honestly say that the only worry I have about not being here tomorrow would be how will my kids function the way that they function now without me. I think you have to start the conversation by really understanding what fears them. Older patients don't really so much worry about their kids and how they're going to function because they're adults, and they have their own lives. I guess getting to the source of what the fear is, whatever the reason for the fear. Then I would encourage a conversation about the reason, and try to understand why and where it stems from. I may want to show them some of my own personal stories about death and dying to create a perspective on the situation. Because I've been so blessed to be involved in numerous end of life, from young people to old people, and personal family members, I can gleam a little bit of personal perspective, even though that's not always necessarily what they want, but I just try to help them understand, or try to have them identify the fear and realize and determine whether it's a true fear, like if it's a real thing, or if it's a fear that they've sort of built up. Real fear is, yes, there's a lion coming at me, or I'm going to fall off a bridge. Or is something that they're just, they've built up to be a fear and when you can break it down, or minimize and talk through all of the components of the fear, is it a legitimate fear or is it something we can talk through and work out. Death, as I've said, can be a beautiful continuum of life. I would strongly reassure people not to fear the unknown. There's a large difference between perceived fear and real fear. To focus on the fear of the unknown is really a perceived fear, and you can ... When you identify that it's not a legitimate fear, it's something that we've sort of created through a conversation in our heads, then you can minimize that quite a bit. Dr. Bob: Yup. That's awesome. That's some really great insight and advice. I completely agree that the, I think the key, in my experience, the key is like you say identifying the fear, bringing it into the light. When it's lurking in the shadows, when it's just stuck back in the recesses of our mind, occasionally shooting out its little tendrils, there's no way to really deal with it, manage it effectively. It really does need to be brought out. In that way, then we can help people understand where it stems from and get a better sense of like you say, whether it's based on reality or it's based on some stories that they've been told or have for whatever reason come to believe. Julie Chrisco: Right. Dr. Bob: I'll tell you with my patients, like you I get to know them incredibly well. We spend a lot of time together. One of the things that I truly feel the most blessed about and have the most gratitude for is being in that space of communicating with people, sharing intimately with them when they know their life is coming to an end. The wisdom that comes up, just the true humanity that gets shared, and I get to be a part of, is a gift beyond anything I could have imagined. What I find is that very few people have this sort of existential angst, especially as you get into the really later years. Most of them either believe in an afterlife of some kind and they're comfortable with that, or they think that everything is just over, there is no afterlife, it's just this is it, when they're gone, they're gone. Those people, for the most part, are comfortable with either. What is really keeping people awake and kind of freaking them out, is how they're going to die. What's it going to be like at the very end? Are they going to be in pain? Are they going to be struggling to breathe? Are they going to be aware of what's happening and unable to do anything about it? I think that this is a fairly ubiquitous fear that the final moments of life are going to be terrifying. When we get to assure our patients and their families that that will not happen, that we are incredibly skilled at making sure that there is no struggle that people will perceive of when their life is ending, it almost, it changes everything for them. Julie Chrisco: Yeah. Dr. Bob: They can have this peace that well whatever is happening is happening. I can't necessarily change what's going to happen, but now I feel like I don't have to worry that it's going to be terrifying and that I'm going to struggle. Once they have that, and once the families feel that way, there's just palpable relief. Everything from that point forward feels a little bit better, or a lot better, or amazingly better. Have you experienced that as well? Julie Chrisco: Yeah for sure. For sure. When you can ... I mean just even in a conversation, an hour or a two-hour visit with a patient and family, and allowing the conversation to happen. Then when you leave that visit, they're like a whole different body of people. The patient feels better. The family feels better. Everybody's sort of at ease in a place that you didn't know existed for them because when you met them, or when you started the conversation, everybody was so angst and everything was intense. Really it's my goal when I communicate with people is to generate some ease, to generate some comfort in knowing that A, I'm going to be there. I'm your resource, and I'm going to be there no matter what you need. You can call me; you can reach out to me. I'm here for you. And to create that whole I've been through this hundreds of time, and I can tell you from past experiences here's the way it can be, and here's what we're going to do for your loved one to make sure that it looks like that. Dr. Bob: Yeah. That's a beautiful thing. Not everyone does that. That doesn't happen universally. One of the things that I tell people about when they're looking for that support for the end of life phase, when they're looking for a hospice agency or physician care, that they really have to, that there are people who care as deeply as we do and are willing to be there and make those assurances, but it's not a sure thing. People need to be, and families, need to be advocating strongly for themselves and on behalf of their loved ones to find those resources, to find those people who can give them that assurance. It's there, but it's not a given that just because you get on hospice that that's the kind of support and care and assurance you're going to receive. People like you, and I'll say me, we're out there, but we're not everywhere. Julie Chrisco: Unfortunately we're not. Dr. Bob: I think, and I don't know why ... Well, I guess I do know why, but I feel like it's so unfortunate when people are having this experience, and they're living with this fear, and those fears are either not addressed, or they're not brought out. People will sometimes continue having that intense level of fear up until the time that they're taking their last breaths. If the conversations haven't happened, if the connection hasn't happened where somebody is coming in to personally assure you that they will be there to give you and do whatever is necessary to maximize your comfort and minimize your distress, there are unfortunately people who are dying with a lot of distress and fear. Would you agree with that? Julie Chrisco: Yes, definitely. Dr. Bob: So what really irks me, and I guess part of what our mission is, is to see that that doesn't happen when it can be avoided, which is I would say the vast majority of the time. Julie Chrisco: Yeah. Dr. Bob: We continue to have great work to do. I'm really grateful that you have the same passion for that, and the philosophy, and just the comfort of being that person who's going to be there for people to support them regardless of what they're going through. I didn't get a chance to sort of introduce you more thoroughly and talk about all of your incredible accolades, and your education and training, but I do want to if I could just read the last part of what you have in your biography because I think it's really poignant and it will help people get a better sense of ... I think people get a sense of who you are just from listening to this conversation, but I'm going to read this anyway if that's okay. Julie Chrisco: Yeah, that's great. Dr. Bob: Julie is extremely passionate about allowing patients to do what is best for themselves and creating a journey that augments their wishes. She enjoys working with a team of professionals to enhance the quality of life for our patients and their families. Julie is currently working at Integrated MD Care, that's us, where her love of human beings and her drive to produce the highest level of care go hand in hand. That's beautiful, and that's what it's really about right. It's about love for people. Julie Chrisco: And that at the end of the day is why I love my job, and I can get up every morning and say I love what I do. Really all this work is connecting with humans and then using some knowledge that I gained through nursing to make it a little better. But at the end of the day, really it's just about making a human connection and allowing people to know that I'm going to do the best I can for them, and provide the best level of care, and love them no matter who they are, what color their skin is, where they come from spiritually, no matter who they are as a human being. That's the benefit of this work, the human connection and the relationships that I get to build with these people. That's what makes getting up every morning so meaningful for me. Dr. Bob: I get that, and I so appreciate it. That's why you are such a...
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Faye Girsh Talks about the Right To Die, Ep. 9
01/19/2018
Faye Girsh Talks about the Right To Die, Ep. 9
(619) 233-4418 In this episode, Faye Girsh talks about the Right To Die and why she continues to support the movement. Faye was the President of the Hemlock Society USA from 1996-2002 and Senior Vice President of End-of-Life Choices (Hemlock’s temporary name) from 2002-2004. She had served on Hemlock’s national board and essentially succeeded its founder, Derek Humphry. While President of the Hemlock Society she started the Caring Friends program, in 1998, which provided free, personal information and bedside support to Hemlock members considering a hastened death. For the last 25 years, she has appeared in debates and speeches all over the U.S. and has been on national TV and radio, including Court TV, Good Morning America, and Nightline. She was a speaker at the World Federation Conference in Melbourne, Toronto, Tokyo, and Amsterdam and has spoken at law schools, medical schools, civic groups, universities, and to many other audiences in this country, Great Britain, Canada, New Zealand and Australia. Transcript Dr. Bob: Well, hello and welcome to another episode of A Life and Death Conversation. I'm Dr. Bob Uslander, the founder of Integrated MD Care and the host of this series of podcasts. I have a very special guest with me today. All of my guests are special in some way or another, but Faye Girsh is a phenomenal woman. She is truly a ... I don't know. Some people I've heard to describe her as a marvel and an inspiration, so I'm thrilled to introduce you to my dear friend and co-conspirator, Faye Girsh. Faye Girsh: Hello, Bob. If you're looking for a wonder woman, I'm not it, but I'm very happy to expound on our mutually interesting subject. Dr. Bob: Fantastic. And many people would argue that point and would call you a wonder woman, because you've had a fascinating life, and I know a very interesting career, and the things that you've devoted yourself to and committed yourself to are of great importance to many of the people who are listening, because this is a life and death conversation and to me, you have really lived a very inspiring life, and you never shy away from the conversation about death. And you're somebody who has really devoted herself to helping others have the best possible experience of life and as well the best possible experience of death. Faye Girsh: Thank you for all that. Dr. Bob: And thank you for all that you've done, because what I get to do in my career, some of what gives my life and my career a great meaning is a direct result of the work that you've done over the years. Faye Girsh: It's very encouraging now that there are so many people working on this very important issue for all of us. Dr. Bob: And the issue that you're referring to it's called by lots of different things. When you're talking to somebody about what it is that you do and what you've devoted so much of your life to, what are the words that you like to use to describe it? Faye Girsh: I guess choices at the end of life, if I have less than 30 seconds, that people should be able to die the way they want to, in a humane and peaceful way, with their friends and loved ones present, and consistent with their own values and beliefs. That's the 45-second version. Dr. Bob: Actually, I think it was probably closer to 20 seconds, and it's- Faye Girsh: 20 seconds, okay. Dr. Bob: ... very descriptive and appropriate, I think. Faye Girsh: It sounds very simple too, and it's definitely not simple. In fact, the progress towards it is absolutely glacial because many people don't believe that we should have a choice in how we die, which to me is amazing and also very unjust, unfair. Dr. Bob: Yeah. I agree. And you can spend a lot of time exploring how we got here, and I'm sure there's some value in that because it helps those of us who really do believe that people deserve to have that choice in how, where and when they die. It helps us to see where the challenges remain, by looking at the barriers and the things that have been blocking that- Faye Girsh: You know, I'm reading an interesting book now, Bob, called Modern Death. I don't know if you've seen it. By a Pakistani American doctor named Haider Warraich. I don't know how you pronounce his name exactly. But he talks about how the way we die has changed so much in the last 50 years because of technology, insurance, hospital, everything. It explains a lot to me about how things have changed from when I was a kid, and the doctor would make house calls, and I assume that if we were dying, he would have given us a nice injection and sent us on our way, with the agreement of the family, but it's a long way from that now. It's a little bit back to what you do when you visit people at their homes, which is so unusual these days. Dr. Bob: That does sound like an interesting book, and I'd like to make sure that the listeners have the resources that our very experienced guests are recommending. So "Modern Death" is the name of that book? Faye Girsh: Yeah. Dr. Bob: I'm going to pick up a copy. I appreciate that. Faye Girsh: Subtitled "How Medicine Changed the End of Life". Very interesting. I haven't finished it yet. I don't think he is necessarily a proponent of medically assisted dying, but he certainly leads up to where it should happen. Because I do think that probably 40 years ago, your GP – there weren't specialties then – your GP would come to your house and if you and your family decided that your suffering was unbearable, something in his black bag would help you through to the other side, just to use all these euphemisms. But that's changed, and the laws have changed. The laws are changing for the better for sure, as far as giving you more choice at the end of life, but it becomes very legalistic and formalistic. And maybe that's good because now there are safeguards, but when men safeguard, they're another man's obstacles. It has become cumbersome and complicated sometimes for people to have a peaceful death. Dr. Bob: Well, it seems like it used to be a pact between the doctor and the patient and family. We didn't need all the legislation; people trusted that their physician was going to be there and help them make those difficult decisions knowing it was time. We also didn't have all the other options available. We didn't have all the intensive care units with all of the life-prolonging technology. We didn't have skilled nursing facilities, where people could be housed for months or years- Faye Girsh: Well, actually we didn't even live that long. We didn't live long enough to have a prolonged and agonizing death. We didn't die of these degenerative diseases that we have now. So, yeah. I mean, this book explains a lot of that, but this is something that we've sort of accustomed ourselves to over the years, ways to keep people alive. Faye: I live in a retirement community. I'm 84, and it's getting close myself, and it's very interesting for me to see people, my friends, get old, get disabled, wind up in the care center, or the memory unit at worst, and die quietly. We really don't know how the end comes for most people unless they are very close friends. And then we get a little picture frame, and a white rose in the mail room and says we died. No telling how we died, or what we went through before we died. And then a little obituary says he died peacefully in his sleep, which is usually a lie. And then a little tombstone says, "Rest in peace," but before that, sometimes there is no peace, and sometimes these steps to getting dead are very difficult. Dr. Bob: Yeah, as I'm aware of through my own experience and career. That's an interesting ... it's really fascinating to think about that, living in these communities, many of which are very nice, right? They're beautiful. They're like luxury hotels or cruise ships. Faye Girsh: They are. Right. Dr. Bob: And then there are all these folks who come to the dining room, or you see them in the common areas, and at the activities, and then you just don't see them anymore. Faye Girsh: That does happen. Or you see them on walkers, and then in wheelchairs, and then you don't see them. Or if they're your neighbors, they move to the care center, which we have a very nice arrangement. And then the next thing, sometimes as you know, is their little picture and white rose are up there in the mail room. It's fine. It's a good way to experience death. We don't talk about it very much here, but I've appreciated knowing that, because in my life I wasn't among people who were dying, but now, that's what happens. And what I hope is that people can die the way they want to. And I know you spend time here too and you know the people who live here. They accomplished a lot. We say our motto in Hemlock Society is, "Good life, good death," which we actually stole from Christian Bernard, I think, who wrote a book. The heart transplant doctor wrote a book, I think, called Good Life Good Death. And many of us here have lived a very good life, but we often don't have a good death... I've only been here four years ... but who went out to [inaudible 00:10:00] parking lot and shot himself because he had early dementia. And other people who've struggled with dementia then wind up in the memory unit here for years. In fact, we're having a situation now with my very good friend, whose wife has been there I think now eight years. And they have treated her without consulting the family, but now the family has put their foot down, absolutely no treatment. So she gets nothing. No vitamins or anything. And she's never been healthier. And finally, the family's decision to withhold food and hydration. And of all the things that have happened, is the caregiver has protested and said she would sue the institution here for murder. So, that's a very interesting development. Dr. Bob: I wasn't aware that was happening. Faye Girsh: Well, if I were at lunch now, which I usually would be, I would be talking to this man whose wife it is and trying to enlist one of his children to speak at one of our Hemlock meetings on this subject, which is the refusal of treatment in dementia. A very complicated subject, because a demented person can't speak for herself or himself, but the loved ones can, the person who's been appointed as health care agent can. But often those wishes are violated. I will have another speaker at our January meeting, whose mother-in-law has been in the institution. Those who know Bonnie, was once a very active, beautiful, intelligent woman, and they had been coerced, shamed I guess is the word, into providing treatment for her twice, because she has to have her hip fixed because she fell. She has to have her ulcer treated. Even though she knows nothing it is has made an advance [inaudible 00:12:18]. She doesn't want treatment. So these things are very complicated, refusing treatment, medically futile treatment that's given so often. And hospice is not saying that they can fix everything, but really they can. They can fix a lot of the pain even, but alone the existential suffering that people have because they can't do what they are used to doing, they don't want to be doped up at the end to alleviate the pain. They want a peaceful way out, and yet they either don't know what's available to them, or they can't find a doctor who will help them use even our California law, The End of Life Option Act. So we have a long way to go. We are about to finish our 30th year as Hemlock Society of San Diego, and we're looking for new directions to go in. And for me, dementia is the direction because it seems so hopeless to be a long-time demented patient with no way out. Dr. Bob: That is just ludicrous, to think about that when there are so many people, there are so many people who, as you say, lived wonderful lives, they raised children, they had careers, they contributed, and if they were able to look at the scenario and to see what's happened to them and what's being done, and you ask them what they would want, we know that they would want to not be there. Faye Girsh: That right. Dr. Bob: They would be ready to ask somebody to mercifully end their lives. And I'm a physician, and I know that there are laws that prohibit that, and we can't just take it upon ourselves. And even if people have indicated that they would never want to be alive in those circumstances, our hands are tied. But it's just a crazy, crazy situation- Faye Girsh: Fortunately, we can look North and see what Canada is doing. And Canada is making much more progress than we are, which is not surprising of course. But the Canadian law that went into effect the same time the California law went into, that is June 2016, permits active euthanasia. That is a patient can ask for a lethal injection. It's so much better than what we have to struggle with, these expensive bad-tasting drugs that you have to be able to swallow, to use. That's not such a good solution. And also, Canadians have made their laws much more liberal. That is, it doesn't just take a doctor to do it. A nurse practitioner can help you die that way. And in our law in California, you have to have a psychologist or psychiatrist to ascertain that you are mentally competent, and another doctor to determine that you are terminal, in addition to the first doctor. But in Canada, that's not the case. A lot of different people can ascertain that you're mentally competent. And again, it doesn't have to be a doctor to provide the lethal injection. And the criteria is not a terminal illness as ours is, which to me, it is not even relevant to the question of how much you're suffering, and how long you've been suffering, and how long you have got to suffer. A terminal illness means you're going to die within six months, which in some cases is a mercy, but some of these neurodegenerative diseases take years of suffering before death occurs. So, I think we have to look to Canada to change our laws. And we've had the Oregon-type model as our model law now in six jurisdictions, five states in the district of Columbia, but that law has existed now for 20 years. To me, it's inadequate, and it's time to move forward and to look at what other countries are doing. And then, there's a whole collection of ... No, that's not true. There are some doctors and some organizations, and I'm thinking in particular of Doctor Philip Nitschke, who started in Australia and was the first doctor in the world to give somebody euthanasia at their request, under a law. And that was back in 1996. He's now living in Holland, but he doesn't believe that we should try to change the law at all. He believes that people should be able to do it yourself, get what's necessary, whether it's drugs or mechanical devices or whatever, and do it ourselves because he knows that doctors are resistant to doing this and the law is very slow to change. That's one point of view. I don't totally agree with it. I think it's very helpful to have somebody there, somebody with an organization like Final Exit Network, to be there with you, and certainly a doctor to be there with you if you can find a cooperative doctor like Doctor Bob Uslander to see you through this, because it's not just a one moment decision, you swallow something and you're dead. It's a decision that should be decided over months with consultation with your loved ones. But that is very difficult and complicated in our country. Dr. Bob: All of this is complicated for sure, so I appreciate you sharing your passion, and your viewpoints on this. If it's okay, I want to make one slight correction to one of the things that you indicated, about the process for the End of Life Option Act in California, in that it doesn't actually require a psychiatrist or a mental health specialist to weigh in- Faye Girsh: No. You're right. Dr. Bob: Only if the attending physician or the consulting physician feel that there is a mental health issue or a psychiatric issue that is impacting the person's ability to make a decision. Faye Girsh: You're right. It doesn't happen very often actually- Dr. Bob: No. Faye Girsh: That a mental health professional is required to make the decision about competency. I think in Oregon has happened very few times. We have- Dr. Bob: Yeah, because a physician is- Faye Girsh: Better data from Oregon than we have from many places else. We have 20 years of data that the government of Oregon has collected. No, you're absolutely right about that, Bob. Dr. Bob: Again, thank you for sharing. We definitely have strides to make. I think we both are feeling grateful that we have come to a place in California where people do have more choice and more options, but we do still need to continue pushing forward. There are still some issues and problems with the existing law. It doesn't address the needs of the people with cognitive impairment and dementia, and those are really challenging situations. Faye Girsh: And doctors are not being educated about what this law entails. I have a new primary care doctor that I talked to the other day at Scripps, and she didn't know anything about it. There's never been even, not only a policy described by Scripps but no education about the law at all. She didn't know what to tell me. She's going to find out and tell me later. But this is not acceptable. This is a law now, and even though everything is voluntary, so it's completely voluntary on the part of the doctor, the patient, the hospice, the pharmacist. That doesn't mean that people shouldn't be educated about it, and that's what we try to do in Hemlock. I just gave a speech to bunch of elder law attorneys, and before that to an Episcopal convention. And the more people we can talk to the better, but that's a drop in the bucket compared to the people who don't know what their rights are. And some hospitals have gone all out. Kaiser's very helpful in that respect, but my hospital, Scripps Clinic, they don't seem to know anything. It requires a massive educational effort, and it requires a little more cooperation and enthusiasm on the part of doctors and institutions, and definitely on the part of hospices. I think it's a disgrace that no hospice that we know of in this county will actually provide a doctor to do this for you. Many of them will refer to you, which is fine, but I think hospices should be able to assure a patient who comes for hospice care that if their suffering becomes too great, or they've had enough, that somebody will help them achieve a gentle death, which is what happens in Canada now, especially in Quebec, which has been the leader in this. The formally very Catholic province now, very progressive. And in Belgium and Holland. Their hospices will also provide peaceful death, voluntary euthanasia, but not ours. Dr. Bob: Not ours. Faye Girsh: And ours maintain that they can do everything in make dying fine for you and many of them can. I have no question about that. But for many people, there needs to be another option. Dr. Bob: And I always think about that when we hear from the palliative care and hospice folks, who are all very well-meaning, and compassionate, and they make it very clear that if the suffering becomes too great, then we can medicate people into unconsciousness. It's called palliative sedation, where you get medication so that you're no longer aware of your surroundings, no longer feeling pain, no longer feeling like you're struggling to breathe. And once you get medicated to that level, you will no longer be able to eat or drink, you won't have any nutrition, and eventually, you'll die of dehydration. And I understand that that is possible, and we for years have been doing that for or to patients. And my response to it is, if somebody has another option if somebody has the option of actually taking something on their own that will prevent that from being necessary, that they have the control, they get some of their power back, why wouldn't we want to make that available to them?...
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Founding the Hemlock Society, Derek Humphry Ep. 8
01/12/2018
Founding the Hemlock Society, Derek Humphry Ep. 8
Derek Humpry is an author and principal founder of the Hemlock Society (now Compassion & Choices). Derek shares his poignant story about helping his wife, who was terminally ill, end her life and how he founded the Hemlock Society. Derek's website: Transcript Dr. Bob: Welcome to A Life and Death Conversation with Dr. Bob Uslander. I'm very excited to introduce you to today's guest, who is a gentleman who I recently had the pleasure of meeting and listening to during a presentation at a conference. And I just knew when I met and heard him speak that he is somebody who you needed to hear from. I could go on for quite a long time listing his achievements and his accolades in this introduction, but I don't want to take too much of our valuable time away from the conversation, so I will just give a little glimpse of the instruction to Mr. Derek Humphry, who is the founder of the Hemlock Society of the USA, past president of the World Federation of Right to Die Societies, and Derek has been an incredibly strong proponent of people having the ability to determine how and when they their lives will end when they are struggling. He's been very active through his entire life in this regard and is in large part responsible for the movement through in this country that is certainly effective here on the West Coast, in California, in Oregon, in Washington that has allowed people to have a peaceful end of life. And I owe him gratitude because he has allowed me to delve into a part of my career that has really been incredibly gratifying, and he's brought great relief to many, many people around the world. So, Derek, I just want to introduce you and thank you from the bottom of my heart for all that you've done. So welcome. Derek Humphry: Well, hello. Thank you very much for inviting me. It's been a worthwhile journey. I founded the Hemlock Society in 1980 when I lived in Santa Monica and developed it from there. And it was, I didn't do it in any obviously pioneering way thought, but it proved to be the start of the right-to-choose-to-die movement in America as we grew and grew and fought off our critics and published little books and held conferences, the right-to-choose-to-die movement swelled and improved across America ever since 1980. Dr. Bob: So let me ask, how did this all start? I know, and I heard the story, but I'd like people to hear where this movement originated and how it started for you. Derek Humphry: Yes. I was living in London. I was a reporter on the London Sunday Times. And I had a good marriage, a wife, and three sons, and we were getting along fine. And it's great fun bringing up three sons. But suddenly in 1973 my wife, Jean, said that she had a lump in her breast. We rushed her to the hospital, and various testing and so forth. And they had to perform a radical mastectomy, much to her shock and all of our shock. She recovered from that as best she could, but we have further testing of her lymph nodes and blood count and all the rest of it. And it showed that she had cancer deep in her system. It was too late. But we fought, and she fought, took all medical help available, kept her spirits up looking after the family and so forth. She kept it only in a close circle of friends or family did she say that she had cancer. But in about a year it turned to bone cancer, very painful, very difficult to be moving at all except with heavy pain medications. And then after nearly two years, it was really serious, and she nearly died. She was in the hospital in Oxford, England, getting the best treatment that was available back in 1975, and she recovered from one bout, and the doctor thought she wouldn't come out of that. But she did, and she had a fighting spirit. Then came my epiphany. She sat up in bed feeling pretty well in the hospital bed, and I was visiting her. And she said, "Derek, I want you to do something for me." I said, "What's that?" She said, "I've had enough of this pain and unconsciousness. It's getting near the end. I want to die at home. I don't want ..." She took hospitals pretty well, but she was in the cancer ward, and she'd seen too many people die with the families rushing in in the middle of the night to say their goodbyes and a lot of pain and tears. She said, "I want to die at home. I also want to end my life at the point when I feel the quality of my life is gone and that there's no more hope and no more chance of living. And I want you to help me." There wasn't a right-to-die movement in America or Britain to speak of. There were little token meetings, but it was not a subject of public discussion or knowledge. I think I would have had to go to a dictionary to look up the word euthanasia or so forth. I said, "What do you want me to do?" She said, "I want you to go ..." In a way, she prefigured the laws. She didn't know she was doing this, prefigured the laws that are coming into place in six states in America. And she said, "I want you to go to a doctor, explain what the situation is, and ask him for lethal drugs in which at the time of my choosing, I'm not ready yet, but it won't be far off, time of my choosing, I want to be able to take my life immediately in my bed at home with family nearby and so forth." I said instinctively, I know I didn't philosophize about it or ... "Okay. I'll help you." And- Dr. Bob: Do you recall what your initial reaction was to that? Of course, you wanted to be supportive, but did you have ... Do you remember how you felt about doing that at the time, conflicted? Derek Humphry: I remember saying to her, "If I was in your position, I would be asking you the same," so that I comforted her by saying, "We're on the same wavelength." I didn't want her to die at all, but having seen her pain and suffering for the last two years, well, understood why she would ask. She was a very strong, independent woman and knew her own mind. She'd seen her mother die about 10 years earlier of lung cancer, and she had to be with her father at her mother's bedside. I wasn't there. I was looking after the children somewhere else. The mother died an awful death apparently. She didn't realize she was dying, and the pain control was terrible. If I'd known about it at the time, I would have lodged a complaint against the doctor. But I wasn't on the scene. But this obviously triggered in Jean that when her time was closing, that she was going to do it differently than her poor mother had dealt with it. So I went to ... I puzzled over what I should do, how to get the drugs, and I thought, "I don't want to involve her own GP or lead cancer specialist in Oxford." I didn't feel it was right to involve them. They were good people, good men, and women, very helpful, but I've been a journalist in London. I knew a certain doctor who we'd worked on stories about medicine before, and I thought, "That's the fellow." So I went to see him, took him to dinner, and I said to him, told him what the situation was, and he questioned me closely about Jean's illness, the state it was, what we'd been through, roughly what sort of medications and so forth, and where she was. He turned to me and said, "She has no quality of life left. I will help." And he gave me the lethal drugs with which to; she could end her life. We shook hands on the bargain that I would never reveal his name, that that would be secret, and it's been secret to this day, although people have asked me who he was. I took the drugs home. I said to Jean, "I have the drugs. They're locked away in the medicine cabinet out of the way." And we got on with life, and she got on with life as best she could. She took another chemotherapy, which gave some momentary relief. And we had a happy Christmas in the end of 1974; I think that was. And then but by February, March, she was very, very ill and taking a great deal of what in England they call hospice mix. No, in America they call it hospice mix. In England, it's called Brompton cocktail. It's a mixture of drugs that suit one's particular illness. It's a sort of trial and error until the doctors can work out what this particular patient handles best. So we had that. And we continued, and things got worse. Then her ribs broke in a sort of accident, and that seemed to be her benchmark. She couldn't get to the bathroom anymore. She could hardly move. She couldn't get up in bed without a massive amount of painkillers. She couldn't sit up in bed. And I knew the end was coming, and I knew this question was going to come, so I was thinking about it but saying nothing. Then one day I got her to sit, managed to get her to sit up after taking the pain medications, and she calmly turned to me, and she said, "Is this the day?" That's a pretty rough question to answer when you're the ... We'd been married for 22 years and three children and had a happy life together. And I sort of gulped and said, "Well, if the pain is getting worse, you'll probably have ..." I was sort of stalling for the moment. I didn't want to rush an answer. "You'll probably have to go back into the hospital at the end of the week for more pain relief." And she said, "I'll die at one o'clock today." And so that was ... She was a very outspoken north country English woman and- Dr. Bob: Knew her mind. Derek Humphry: ... we talked all morning, and we shared our memories. The marriage had been very solid, but we'd had two quarrels, one over which house to buy and one over my moving to London from Manchester. We'd settled them, but she brought them up, and she said, "Well, I was right about the house, and you were right about moving to London." So we settled the two quarrels that we had. And she told me to go tell her father what had happened so that it wasn't like her mother's death, that hers was much more straightforward. At one o'clock, if she hadn't said, "Get it," I would have just continued talking. I left it, the initial movement, I left up to her. At one o'clock she said, "Go and get it." So I went and got the doctor's drugs, mixed them in a cup of coffee, put a lot of sugar in, and brought it back to her. I told the boys were lying around in the house. The previous evening Jean had sent me on a fool's errand to get something from the supermarket, and during that, my absence, she called in the boys and told them that she was going to die tomorrow. I was not part of that. She wanted me out of it for that communication with her sons. Dr. Bob : How old were the boys at that point, Derek? Do you recall? Derek Humphry: Sort of 17, 18, 19. I can't remember exactly. Dr. Bob: So young men. They were- Derek Humphry: But late teens. Yes, young men. And they'd seen her suffering. They'd helped me nurse her, helped. When I was absent, they would provide her drugs and things like that. They knew the situation, and they knew their mother was a determined woman. If she said something was going to happen and she was going to do, then she was going to do it. So I took the drugs in to her. As I passed through the living room, I said to the boys, "She's preparing to die," so that they were up to mark on it. I put the drugs down beside her, and she said, "Is that it?" I said, "Yes. If you drink that cup of coffee, you will die." She accepted that. I got on the bed and gave her a last hug and a kiss. We said our goodbyes. I got back on my chair so that she could lift the coffee straight up without ... And she picked up the mug of coffee and gulped it down, drink it down. And I sat there watching in awe. And before she passed out, she said, "Goodbye, my love." And that was it. She lingered for a while. Then she vomited a little, which frightened me. I thought, "Oh, dear." I didn't know at the time that right to die was not a subject of ... I never investigated closely or not ... She should've taken some antiemetics. Dr. Bob: As we do now. Derek Humphry: ... to prepare the stomach for that extremely toxic drug that was going to kill her. Anyway, she didn't vomit all that much. And she just quietly died. Dr. Bob: Were the boys with you at the time? Were they in the room or were they? Derek Humphry: No. They were in the next room. But when I went out of the room, I know they went into the room when she was dead and apparently said goodbye to their mother, and after my presence. And I called the local GP who looked after her for about two years and told him that Jean was dead. And he came out. He said, "I'll be around in an hour or so and sign the death certificate." When he came in and looked at her, and I kept out of the room deliberately. I didn't want to muddy the waters in any way or whatnot. And I was out in the garden, but he wrote down death from carcinomatosis, massive cancer. If he'd wanted to speak to me, I was there in the garden, and he could've called and said, "I want to talk to you, Derek," but he didn't. And he thought it was a natural death from her powerful cancer. Dr. Bob: Which it would've been before too long had she not taken this step. Derek Humphry: Yes. Dr. Bob: But it would've come after quite a bit, potentially quite a bit more struggle and suffering, right? Derek Humphry: Yes. Well, certainly she would've been dead within a month. That was definitely on the cards. Her doctors had told me that they would look ... They'd say, "She can come in to Oxford Hospital, and we'll look after her, or she can die at home." And I said, "She wants to die at home." And they said, "Fine. We'll provide as much comfort as we can." So that was how it ended. Dr. Bob: And that was 40 ... How old was she? Derek Humphry: She as 42. Dr. Bob: And that was 43 years ago, 1974. Derek Humphry: Yes. Dr. Bob: So 43 years ago. It sounds like you can ... I know that you've told this story not just a few times over the years, but it sounds like you can almost, it's almost like it was yesterday. You seem so clear that you can recollect the details so clearly. Derek Humphry: Yes. And she was so clear. She wasn't one who would aggravate over things. She wouldn't ... She'd talk things over, "What is this? What is that?" We'd had a pact that when she first asked me to help her that it would be a joint decision. She said, "I could be made woozy by all these drugs." And she said to me, "Back at the first opening of this, she said, "If I'm asking to die at the wrong time because there's been a cure for cancer or if there's more to do, don't help me. It's a joint decision." And so I went along with that. You have to stand by your partners at the worst of times. Dr. Bob: Well, she certainly sounded like she was very clear and wasn't hesitating at the time. And her strength, and her fortitude, and her clarity have had such a significant impact on many lives from that. Had she not made that decision, had she not asked you to support her in this way, it's hard to know what would have transpired and how the right-to-die movement might or might not have developed over time. So can you share how things developed from that point and how her gentle and peaceful death ended up leading to the next steps for you? Derek Humphry: Well, I had written. I was, what, 45 at the time, and I had published three non-fiction books, had modest effect with them. So I was a published author. So I decided to write a little book about this. I was rather ... I studied the subject after Jean died--no, before and after. And I went into the library of the Times of London, and I read up all the assisted suicide cases for the last 50 years. And what struck me was that here were spouses, male and female, dragged into court. Assisted suicide was and is a crime in Britain. And I was shocked by what I read in modern history about this. And what really struck me was that these people that I could see were never sent to prison although they were vulnerable to 12 years in prison, the maximum sentence. But the judge would always say, "You've done wrong, but it was done in a spirit of compassion." Then he would suspend the sentence or put them on probation and things like that. I thought, "Well, this is a wrong law." If it's a crime, well then it should be punished as a crime. But this is not a crime, and it should be modified." So that got my dander up. And so I wrote a little book called Jean's Way in which I told the truth, the harsh truth of what had happened, the good things, the good times, and the bad times, and how Jean had handled it and so forth, and about the doctor, whose name I did not release. And when I took the book 'round to several publishers in London, nobody would publish it. Even though I was already a published author and staff writer at the London Sunday Times, they said, "Oh, no. It's too harrowing. Oh, no, it'll make people cry." And my own editor, Harry Evans, the great editor, he looked at it, considered it, and he said, "No, I don't want my readers crying on Sunday morning." And I said, "What's wrong with a good cry for genuine reason? This is part of human life." But he wouldn't. He wouldn't publish it. Anyway, I found a little publisher who was willing to take the chance, and they published it. And the entire book was sold out in a week. In five days it was gone. The public snapped it up, and I sold the paperback rights, and the Norwegian rights, and the Japanese rights, and Spanish rights. So the publishers and my editor were wrong. People do want to read genuine cases about this, sincere cases. And a huge amount of the public is interested in peaceful and careful dying. So that was that. Then I moved to America to work for the Los Angeles Times. I wanted to change, and the book became very controversial, and I was invited onto lots of television shows, the Donahue Show. All of the big afternoon television shows, all of them invited me on to talk. And it began to stir interest, and I began to get huge mail from people, and they could reach me at the Los Angeles Times. They would just write, "Derek Humphry, Los Angeles Times, Los Angeles," and that would get me. And people said to me, what are you going to do about this? And I said, "Well, I'm thinking," and this question kept coming up. And so I began to feel, "Well, I'll set up an organization to help people as best we can and long term to change the law so that this could be done thoughtfully, legally by willing doctors according to law and guidelines. And so I set up the Hemlock Society in August of 1980, announced it at the L.A> press conference. I remember one reporter said to me, "Are you going to be in the yellow pages?" I said, "Of course. This is not going to be a covert organization. This is going to be straightforward. But we're not going to break any laws if we can help it. We're not that way. We're in the business of changing laws." But meantime I wrote a little book called Let Me Die Before I wake, which a guide to how to do it yourself. This first book was on the right today, well, second if you call Jean's Way as one. It was true cases of people dying, taking their lives, and what drugs they used, and how they handled it. I went around America interviewing people who were willing to talk to me about the death of a spouse or a child. And I gathered these stories together, published it in a little book, which sold continuously for the next 10 years to mostly members. It wasn't a bookstore book; it was people heard of the Hemlock Society, and I did a number of radio and television programs. Gradually the membership at Hemlock Society grew from nothing to 47, and I had a- Dr. Bob: 47? Derek Humphry: Yeah. I had a- Dr. Bob: It's interesting. I meet people in my practice, and many of these older residents of these community are card-carrying long-term members, and they're so proud of it. These are people who are very successful, intelligent, and they're the folks who have always been able to kind of be self-determining and not just accept what is being handed to them but want to really determine the course of their lives. I don't see as many younger people, and you can share your thoughts on this and what's...
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Sons Share Dad's End-Of-Life Experience, Ep. 7
01/05/2018
Sons Share Dad's End-Of-Life Experience, Ep. 7
In a very candid and poignant conversation, Bill Andrews' sons share what their dad's end-of-life experience was like for them. Hear how they worked as a team to help their dad have the best death. Note, if you haven't already listened to their father's episode, please to listen to Bill Andrews share why he chose to end his life after battling ALS. Transcript Dr. Bob: This episode is a follow-up to a previous podcast with Bill Andrews, a patient of mine who ended his life on October 23rd, 2017, using The End of Life Option Act, also known as Physician Aid in Dying, or Death With Dignity. The law, which became effective in California in June of 2016, allows a competent adult resident of California with a terminal illness to request from their attending physician a prescription for medication that will end their life in a peaceful and dignified manner. Bill Andrews had ALS, also known as Lou Gehrig's Disease. He was a surfer, a thrill-seeker, and an adventurer prior to the onset of this illness. He also was a devoted son, father, and grandfather. I recorded a podcast with him four days before he ended his life. Two of his sons were present for that interview, as well, and all three were with him when he died a few days later. I invited Bill's sons, Chris, Eric, and Brian, to join me and share what they had learned from this experience, and to help carry on their father's legacy by helping others understand more about what it's like to help a loved one through the Aid in Dying process. Bill was a pioneer, and he was also a humanitarian. He wanted his death to have value for others, which I'm hopeful that these podcasts can help accomplish. This discussion is fairly graphic and detailed. Some people may find some of the content uncomfortable. Others will find it gripping and refreshing. I found it incredibly inspiring, to hear the words of these intelligent, thoughtful and grieving young men as they share what they went through as a family and honor their father, Bill Andrews. Please share this with others who may benefit and feel free to head to my website, integratedmdcare.com/newsite1, for additional information and support and other topics related to life and death. Welcome to another life and death conversation. This is Dr. Bob Uslander, your host and the founder of Integrated MD Care. Today is gonna be a bit of a different format, we're doing a group podcast, and I have a few gentlemen here with me who I shared a pretty special experience with just a couple months ago. I did a podcast interview with Bill Andrews; you may have listened to that one. Bill was quite a character, well loved and well respected, a gentleman who made the brave decision to end his own life after struggling with ALS for several years. I did an interview with Bill just a few days before he did end his life and he did it in the company and the presence of his family, and his sons, Brian, Chris and Eric, have decided that they wanted to speak and share their perspective and help others who may be trying to figure out how to navigate this terrain and how to support each other and their loved ones through this process. So I'm grateful and very please to introduce you to Brian, Eric, and Chris Andrews. Thanks for being here guys. Patient Son: Thanks, doctor. Patient Son: Thank you. Dr. Bob: Okay. There's a lot of things that we can talk about. There's a lot of different components to this, but one of the things I want you to share ... And you were on that podcast when we talked to your dad, and we got a little bit of your perspective on that, but he was the star of the show. You guys were in the background, but it was nice to have that. Now I'd like you to, in memory of him, in honor of him, we know that he was very, it was really important to him that people understood that this was an option and they understood why he took this option. Why he made the choice. From your perspective, can you share a little bit about why you felt it was so important for him to share his story? Patient Son: This is Brian. Dad loved being a pioneer in life. He liked being out in the forefront doing things in business that were new and innovative, and in his action sports lifestyle, surfing big waves, motor crossing areas that people had never been. I think he really felt good about being a pioneer and doing something here that was newly available. Dr. Bob: Okay. Patient Son: He really wants people to hear his story, and he was really happy to have done that, the podcast with you, and he really wants to get this information out for people considering this. Dr. Bob: That's cool. It's interesting to think about that, the pioneering spirit. I relate to that. I'm kind of, as a physician, a bit of a pioneer in this realm. Of course, had he not been dealing with a terminal illness that was challenging him every day and getting worse, he probably would have found other ways to pioneer, right? Patient Son: Yeah. Dr. Bob: But this was an opportunity for him to take his own experience and what he had to deal with and go through and hopefully allow others to benefit from it. So, not just being a pioneer, but being a humanitarian, I think. Patient Son: He's always loved helping people and helping to share wisdom and teach and coach. That's just the kind of guy he was, so yeah, this is good. Dr. Bob: Yeah. How long before he actually, his life ended, did he start talking about this being an option for him? Patient Son: I don't he knew it was an option to be honest with you 100%. But I think it was something that we discovered along the way, and it might have been Brian who brought it to his attention as an option to look into. Dr. Bob: Okay. Patient Son: We were reading all about ALS and how it was gonna end. But the question was when and how right? So we were just learning so much about it and reading about it and meeting people, going to support groups. You know at some point it's gonna end. The average time was supposed to be two to three years, and so we didn't know how long. It turned out to only be, from diagnosis, it turned out to only be a year for dad. Through that journey of reading about that we read about this option and talked about it. Dr. Bob: And so you discussed it with him. Did you guys discuss it with each other first? Patient Son: We did. We shared it with each other and just, you know, it was earlier on. I think that was maybe in the first month or so after his diagnosis. It was around the holidays a year ago. We had read about that and said, "Well, this is something we should keep our eye on." We knew we were going to go through a journey together. We just wanted to have that as something to learn about and so we did. I think dad was also reading on his own and I'm sure he read about it as well. It's something we ended up talking about together. Patient Son: ALS was not something that I think any of us knew anything about prior to his diagnosis. It's the type of thing we all had to be learning about as we were going through it. We were also trying to form opinions about it as we were going through it. I think that when Brian came across the Death with Dignity website, and there were some other materials that kind of lead us to that path to look at that. It wasn't like, "Hey, what do you guys think?" It was just like, "Let's just read this and try and understand this a bit." The whole process was a lot of like learning, talking, digesting everything. Like facts, emotions, decisions, kind of all doing it simultaneously. But yeah, we really, it was something that we brought to his, for him. Dr. Bob: Which is unusual. You don't have much other exposure to this, but it's unusual that families bring it to a person. In my experience, most of the time, the individual is the one who has been either, for years has been kind of secretly knowing that if things got to a certain point if they develop these challenges, that they would want to look for that out. But most of the time, the family members bring ... the patient, the one who's dying, brings it to the family members and they have to try to convince the family members that it's the right thing for them. That's what I see more often. I think it speaks a lot to your relationship with him and your level of love and trust, that you felt that you could bring something like that onto the table and talk about it as a family looking at all the different options that were out there. This is never the first option. This is never what anyone is hoping for. It's always after exhausting all the other possibilities. But as it turns out in many cases, it's the best of the various options that are out there. So you guys, at what point did you speak of this to a physician? At what point did, and I know, but for the listeners there, what was the path that was taken once it was discussed as a family? Patient Son: We had seen one of dad's primary physicians, and they had a good relationship with one another. End of life, quality of life was a big conversation between those two, especially within the last year. We weren't a part of those conversations until recently when we started going to the appointments with dad, you know, having to take him there and so forth. So being there gave us exposure to some of those conversations, and it was no surprise to his physician, approximately two months before dad left us, that we went to him with that formal request. He was ready for that call. Dr. Bob: Okay. And even though he wasn't necessarily familiar with the specifics or how to put things in place, he was receptive and willing to support your dad through that? Patient Son: Very much so. Dr. Bob: Great. I know that that's ... How long was it between that conversation and when he reached out to me? Do you have any idea? Was there much time lapse in there? Patient Son: Yeah. He doesn't know the exact time. Patient Son: I think it was about four to six weeks. We had the conversation saying, "We're ready to move forward." We had some learning to do on our side that took some days and some weeks. Our physician wasn't familiar with the process whatsoever, so he needed to do his own research as well. Two, three weeks went by, we realized together, with the physician, that we were at a stalemate. It was at that point that we decided to explore other options and getting some additional help, and that's how we met you. Dr. Bob: Great, yeah. I had met him. I had a prior relationship with this physician. He, I guess put the word out that he was looking for someone who knew more about it. Patient Son: He did. Dr. Bob: And then we connected, and I think it worked out well. He got to be involved, as everybody wanted because he had that relationship and you got the benefit of working with someone who knew how to get you down that path. Patient Son: Yeah, you ended taking over as the primary and then he took over as the supporting physician. Dr. Bob: Right, it worked out really well. Patient Son: It worked out great. Everything was smooth once we got rolling on that program. Dr. Bob: And he deserved that, he deserved smooth sailing because there's a lot of folks who start down this path and they just hit one roadblock after another, one obstacle after another. And either they struggle for longer, or they often get passed the point where they can even take advantage of this, which is really unfortunate. Patient Son: We actually had that as a time constraint, because dad has the ability to walk and his arms were getting really weak, and his hands, gripping was getting weak. We had to start hand feeding him in his final week. So it wasn't too much time left because he could life a cup with a few ounces of weight and drink when he needed to do, even do any other way to self-administer. Self-administering was a requirement, so we had a time horizon that was limited. So we were getting a little bit, a little nervous about that as time marched on, which is another reason we contacted you to help get things moving. Because he really wanted that, he had talked about having three options. He could just let the disease take his course and he'd starve to death and wouldn't be able to breathe. He didn't want to go through that, but that would have been his second choice. The other option was to be kept alive through any medical means possible, feeding tube and ventilator. He did not want to do that. So that's what knew right from the beginning, he did not want to be kept alive, didn't want to be bed-ridden, didn't want to be having this, any medical means to keep him going. Because he lived a great life, and he was ready to go, so that was the last of the options, and this became his leading options hands down, was to take this California End of Life, with a graceful ending on his terms, not having the disease run its course all the way to the end. He was getting very close. We were only I think a few weeks away at the most. Dr. Bob: As things were changing? Patient Son: Yeah, things were changing pretty fast for him. Dr. Bob: Yeah. I know that it's hard to even imagine how frightening that would be. Even though he knew that he had plan B, but he knew that that was going to be difficult for everybody. It was going to be challenging for him, and it would have been difficult for the family to watch somebody going through that. So I know that he was very, very determined to be in control. We know that he set a date, and setting a date is probably a bit challenging because you have children who live in different parts of the country, and he wanted to be accommodating. He wanted to make sure that everybody could be there and participate, but he didn't want to push it off too far because he was worried about the possibility that he would lose the ability. He also didn't want to cut offany more of his life than he had to because he loved the people who were around him. He still loved life; he just hated the circumstances. So when I talked with him, he was four days out from the date that he had set. We knew at that time that he was not going to change his mind, he was determined. Can you talk a little bit about what it was like from your perspective to be setting a date for your father to be ending his life? Patient Son: That's a terrific question, Chris. Do you want to start Eric? Patient Son: Yeah, I feel like jumping in. I think this is sort of like the piece that was ... I think were saying it was a little morbid, but it was also really amazing. It ended up being fascinating. Typically, when someone dies they die, and then they're gone, and you have to deal with everything all at ones. You have to deal with your emotions and the planning and logistics. You have to deal with everything all at once. But what this afforded us was an opportunity to chip away at all these things. We knew his day was approaching, so we all knew that we could say our goodbyes. It also meant that we could be emotional one day and they be very pragmatic another day, and just say, "What should we take care of today?" Because we had time, we didn't have to deal with it all at once. You could deal with it as you were leading up to the day. It was really comforting. It gave everyone the time and the space to wrap things up in a way that we all needed to individually. I always tell people, it's like a really weird experience, but I got to write his eulogy and then read it to him. There was one part that I didn't say very well, and so I actually rewrote a part of it and then read it again to him. No one gets to do that. I thought that that was a really special opportunity that this afforded us, that I found fascinating. Patient Son: His, dad's terms were reverse engineering. He was an engineer. He liked planning things. His goal was to pick a date that would work well for the family. Once we did that, then all the other pieces fell into place. So picking the actual date was pretty easy for us, because dad was not doing well at all, getting worse day by day, having a harder time day by day, so the sooner, the better. He wanted to take advantage of the quickest it could happen, you know after the process, which was about a little longer than two weeks, 14, 15 days, something like that. So we worked together, the three sons and dad, to pick a date that would work best for everybody. Then, from there, worked backwards to what he wanted to do and what we wanted to do leading up to that date. Patient Son: Cool. Eric, you should tell him about the day before, like what ... Patient Son: Do you want to get into that or some of the things that happened before then? [crosstalk 00:19:41] Dr. Bob: No, no. I think it would be fascinating, but do you have anything you wanted to add- Patient Son: Yeah, I'll comment on the date. Dr. Bob: ... about setting the date? Patient Son: Yeah, it was a powerful, impactful moment to set the date. We bounced around on phone calls and texts, trying to pick a date. Dad, when he was ready, he was ready. He was, "As soon as possible," but I want to make sure it works out for all of us because we have our families and birthdays and holidays. He was ready to go, time off work. He was really concerned about a date that would work for all of us, but he was ready, so of course, we wanted to accommodate him with as early as we could pull it off. So we bounced around a couple of dates. We had one and then we actually switched. We had to have Chris come out from New York, and thinking about your family when they would come out. I would just say that it was a heavy moment to set the date, but also it was very freeing at the same time because we did have it on the calendar. We circled that date, and then we could reverse engineer it and start to plan all these activities. So it kind of gut us unstuck and it started some real positive moves to happen, to have that. But it was powerful. Dr. Bob: I imagine it amazing freeing for him too. Patient Son: It was. Dr. Bob: I mean it sounds ... I think that I hear families talk more about how knowing the date makes it more real, and sometimes even more uncomfortable. You guys are unusual in that I get the sense that you guys are all, you were so deeply connected with your dad that you were experiencing this as he was experiencing it, not separate. I mean yeah, you have to think about how it's going to impact you and deal with those feelings, but I really felt like you completely put him first, and that was the only thing that really mattered, was making sure that he got what he needed to get, and with as little interference or struggle as possible. Patient Son: Yes, it's very true. I think we're just like every other family; nobody's perfect. We've all had our disagreements throughout the years and certainly some tough times all growing up; things weren't always perfect. But the disease brought us together, and then this decision brought us together even closer, which was fantastic. Dr. Bob: Cool. That's a gift. Patient Son: It was. We all had our own unique relationships with him for sure. When the disease diagnosis was given a year prior, we said, "We're going to really bond as a team." We had a team name, Team Keep Paddling, dad's a big surfer, right? So he always said, "Just keep paddling. If you ever want to give up, just keep reminding yourself to keep paddling. One more wave, paddle, don't give up. Bust through the white water and get out there and catch that last wave." So that's what, we formed our team name, and we were all about being together. It's actually the best team I've ever been on in my life, in any sports team or work team. This team, this Team Keep Paddling, was the best team I've ever been on. Dr. Bob: That's wonderful. I just had an image that came to me. I'm sure that your dad taught each of you to surf. Whether you kept surfing or not, at some point, I imagine that he'd spent his time pushing you into the waves and getting you up there. I just had this image of you guys, because he...
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Dealing With Loss, Elizabeth Semenova Ep. 6
12/27/2017
Dealing With Loss, Elizabeth Semenova Ep. 6
Elizabeth Semenova is the Director of Operations at Integrated MD Care. She shares her insights and personal stories about dealing with loss. The holidays can be an especially difficult time, listen to how Elizabeth handled her own loss and how she and Dr. Bob help others. Transcript Dr. Bob: Welcome to A Life and Death Conversation with Dr. Bob Bob Uslander. I'm here with a guest who I'm excited to introduce everybody to, and somebody who has a wealth of experience and insights. And I'm very pleased to have her as part of my expanding team here at Integrated MD Care. So you're going to get to know quite a bit about my new director of operations for the practice, Elizabeth Semenova.Elizabeth, say hello to our listeners. Elizabeth: Hello. Dr. Bob: So Elizabeth came to us a few months back. And the way that we initially met was through a referral that she had made to us for a gentleman who was struggling with Parkinson's disease and was really at the tail end of his life, and Elizabeth made a recommendation that he contact us. And it was a real blessing for us to be able to meet this gentleman and guide him through the last weeks of his life. After that, we just had a few more encounters. And, Elizabeth, maybe you can share how what it was about what we do that drew you in and kind of encouraged to you to reach out and try to become part of the tribe. Elizabeth : Well, after I referred friends, clients to you, I looked more into what it is that you do and how you do it, and explored information that I received from other sources about your work, and I was inspired by your openness to life and death and your perspective on the importance of accepting and talking about death as a part of life. I was particularly intrigued by your willingness to support patients and families who are looking for resources, education, and services regarding the End of Life Option Act in California. So that's how I came to connect with your practice. Dr. Bob: Cool. Well, we're very happy that you did, and just to kind of summarize, Elizabeth came on, and we didn't have a social worker who was working with us. Elizabeth has a master's in social work and had been working as a social worker within the hospice world for several years. And we were really blessed to have her come and go out. She went out on a handful of patient visits when I was doing initial evaluations for people who were looking at aid and dying. And it was a real blessing to have her expertise and just her presence there to support those patients and families. Then we just had some changes at the office, and it became very clear that Elizabeth had a strong leadership ... had some strong leadership experience and genes. And everybody in the practice really felt comfortable with her guidance, and I offered her the position to help lead the practice, which has been great. So it's just been a short time, but the difference in our efficiency and just getting things done has jumped quite a bit. So we appreciate your very wise counsel and leadership, and it will continue to be a blessing for all of us for a long time to come. Elizabeth: I'm very humbled by your confidence and appreciation. Dr. Bob: Well, there's more to come. So let's talk a little bit ... We've had some conversations, many conversations around our individual kind of perspectives and feelings about death and how to work with people through those challenges. I know that you've had some very personal experience with loss and death in your life, and I'd like to hear a bit about that if you're comfortable sharing. And let's see how we can provide some valuable guidance, comfort, wisdom for some other people who might need that at this point. Elizabeth: Sure. I first encountered grief and loss and bereavement when I was in seminary, and I took a class on the subject. I remember being very inspired by everything that we read and discussed, but feeling a little disconnected from it, not really knowing how to understand it or contextualize it. Dr. Bob: Had you had any personal loss up until that point? Elizabeth: I had lost grandparents, but no unexpected losses, no tragic losses at that point. And several years later, I was living in Colorado with my daughter, who was nine at the time, and we received a phone call from my brother-in-law, who was my daughter's father's brother. So my daughter's father and I were married when she was a baby and had since separated but stayed very, very close as family and friends. And his brother called me to let me know that he had died suddenly in a car accident. That was my first real experience with death and loss. And at the time, as I said, my daughter was nine. So my purpose was to make the process as comfortable and manageable for her as I could, to do what I could to contribute to her healing and resilience in dealing with the loss of her father. Dr. Bob: So you were dealing with it on your own and then having to understand, learn how to navigate that for her as well. Elizabeth: Yes, and I think that I didn't deal much with it on my own at first because I was so focused on caring for her. The initial loss was devastating. I mean, the pain in my body and the tears were endless. And I remember reaching out to friends and just feeling so lost and unable to think or function or grapple with the pain that was physical as well as spiritual and emotional, which really surprised me. I didn't realize that that was something that could happen. But I turned my attention to making sure that she was okay. So it was really a few years before I started to deal with my own experience of the loss. Dr. Bob: Had you had at that point training in ... Had you been through the social work training or had been involved in any way with hospice? Elizabeth: No. At that point, I hadn't had any experience end-of-life care, palliative care, hospice care. I went into my master's program in social work later, so I had been involved in social services but not in any official certified capacity and not with this field at all. I'd worked a lot with homeless populations, mental health recovery, addiction recovery and really didn't have any context for dealing with loss other than what I had touched upon briefly in seminary. Dr. Bob: So now several years later, you're in a very different place. You have a whole different set of experiences and knowledge base. And so it's interesting because you can probably look back at how you managed and how you responded to things and helped your daughter, and see it through a different lens because you would probably ... I'm assuming that that experience helped educate you about how to support others who might find themselves in similar circumstances going forward. Is that a fair assessment? Elizabeth: I think that's right, although I would say that the experience of a sudden tragic loss that is unexpected is very different from the experience of being with someone on hospice or someone who is more naturally at the end of their life. My father-in-law died several years later on hospice of cancer, and we had the opportunity to be with him, and to say goodbye, and to share love and memory with the family. I would say that that educated me more on how to be a hospice social worker than the experience of losing Natalia's father. Dr. Bob: I get that. Yeah, for me, the loss of my parents, neither of which was completely unexpected--they each had their struggles in different capacities, but it wasn't sudden and traumatic, which adds just a whole multiple layers of complexity to, I imagine to the grieving process. So can you share ... Do you have some thoughts that you'd like to share for people who might be in circumstances like that, who might still be grieving after a traumatic loss, especially with respect to children? Elizabeth: Sure. Dr. Bob: Not to put you on the spot, but I just- Elizabeth: I would say that the first most important thing is to reach out to people, to stay connected because it's an extremely isolating emotional experience. It's rare, and it can feel uncommon and lonely, so in order to stay stabilized, especially on behalf of my daughter, reaching out was really an important part of making things work. In the context of helping my daughter, I had never experienced that kind of loss as a child, so I didn't know what she might need from first-hand experience. So I reached out to friends of mine who had lost parents at a very young age, and I had two friends in particular who were very helpful in sharing with me their experience, what was important to them, what they felt was missing from care that could've been provided for them. The thing that stood out the most to me was they talked a great deal about people shying away from the subject and how that was detrimental to their recovery, to their healing, to their resiliency. So I made efforts to be very open and communicative with my daughter about the circumstances of the loss, the experience of the loss both for her and for other family members, and to share vulnerability of my own sorrow with her. And I think that that openness has been helpful to her. I think that she would say that we've created a safe space for her to be however she is, and to feel however she feels, and to share that, and to not feel alone with it. Dr. Bob: I think that's probably really critical to not feel like there is ... just to feel like it's okay to feel however you feel and not to have any expectation or to feel like, "Oh my goodness, it's been four years or five years, and I should be over it, but it's still painful," but for you to allow that and to help them see that this too shall pass. Things cycle and the feelings will come, and they will go, and to be able to freely express that has got to be critical. Elizabeth: Yeah, and I think another thing that really stood out was that everybody's grief experience is different, so allowing her to know and accept that my experience would be different from hers and that she doesn't have to match my emotional experience with the loss of her father, that she doesn't have to expect anything of herself, that I don't expect anything of her, and that it's okay to be. However, she is with it at the time of the loss and going forward because I don't know what her life will hold in terms of how she integrates this into her world, into her emotional experience. I don't know how it's going to impact her, and I just want her to know that whatever it is that she needs, she has access to the support that I can provide and that others can provide, and that it's always okay to let that experience be a part of who she is, and that it can shape her, but it doesn't have to overwhelm her. Dr. Bob: It's beautiful. Elizabeth: Thank you. Dr. Bob: You said something I wanted to touch on a little bit, in that people tend to shy away from the subject. And I see this all the time after someone dies, I think especially when it's someone younger or it's unexpected, sudden, is that the people around who might be very well-meaning who would want to provide comfort are afraid that because they don't know what to say, they don't want to make things worse. They don't want to say something that will be offensive or painful. So they probably instead don't say anything, don't call. That discomfort creates this distance. Do you have thoughts about how people ... because not so many people ... Like you said, it's rare for somebody to experience a sudden traumatic loss in their own life, but it's not as rare for people to know somebody who they care about who is in this position. So can we try to provide some guidance for people who are wanting the comfort or connect with someone who's had a loss? Elizabeth: Yeah. I would say that there are no words that make sense at that time, and to have the expectation that there's the right thing to say or that something you can do will make it better will solve the problem or somehow fix something is an unrealistic expectation. I think that death is such a part of life that it can't be ignored, and being willing to be simply present with people as they experience loss and grieve that loss at the time of the loss and ongoing because it becomes a part of their life, is the most you can offer. I don't think that there is anything that a person should do to help support someone other than just be there for them and with them. Dr. Bob: Yeah, I mean, I agree. I think that there are ... It's a challenge because you don't want to push yourself on somebody, and I know when people say--they're very well-meaning--"Call me if there's anything I can do if there's anything you need." But in that situation, most people aren't going to call on people other than a select few and say, "Oh, I need someone to be with me," or, "I need meals prepared because I can't function enough to cook for my family." Elizabeth: And I think that's a factor of our society's unwillingness to be comfortable with death. It's not considered acceptable to be in deep sorrow, and to need support, and to reach out to a friend or a loved one. I've heard a lot of people, especially spouses, share that their family members, after a certain number of months or years say, "It's time to move on," and that, to me, doesn't make any sense. If someone needs support around grief and loss, it could be at any time. It could be immediately after the death. It could be months later. It could be years later, to be available to offer a cup of tea, to just show up with a small gift, to send flowers to let them know you're thinking about them. I think small gestures that aren't intrusive but are thoughtful can make a really big difference. And those small gestures will let someone know more than just saying, "Call me if you need anything. I'm really here with you. I'm thinking about you." And it opens a door that people might not realize is even there." Dr. Bob: At the time of this recording we're coming up towards the holidays, and I'm wondering if you have thoughts about ... We're talking about children. We were focusing a bit on children, and there are a lot of children who are facing their first Christmas, their first Hanukkah, their first New Year's without somebody. It could be a grandparent. It could be a parent. It could be a sibling. You have anything you'd like to share about how to support the families, especially children through that, those holiday times after a loss? Elizabeth: I'm getting a little emotional as I'm remembering our first holidays without Natalia's father. Something that we've done that she has expressed to me has been really helpful is finding different ways of memorializing him and making him a part of new traditions. So we still have a stocking for him on the fire place. We have made crafts, little ornaments for the Christmas tree that she and I made together in remembrance of him. We make sure to spend holiday time with his family who is still very much our family and to really include him in the things that we do either through memories, or through creating small things that we can carry with us, or through creating new traditions that he can be a part of. And since his passing, we have found new family members and welcomed other people into our world, and I think that it would be really interesting to get their perspective on this, but they have been very open to him being a part of our traditions and our family, and I think that it can be maybe hard to balance the loss of a loved one with the integration of new loved ones. And it's a different kind of blended family. But, again, I think that open communication is the thing that has really made a difference for us, being willing to openly share our love for someone who is gone and at the same time share love for people who are here and know that they're not mutually exclusive, and know that we can all be a family together, and offering that knowledge and experience to my daughter, who has to learn to live with both the loss of her past and the future that awaits her. Dr. Bob: And partly the future that in some ways was created through that loss. Elizabeth: Yes. Dr. Bob: So we talk about silver linings. And after the death of someone who's young and vital, who we expected to be part of our life for decades to come, it's hard to think about silver linings in those circumstances, but sometimes we don't know ultimately what the purpose of our life is. We don't know what the meaning, the reason for our sometimes premature departure. But I know that there are many instances where a death has resulted in new relationships developing and new understandings developing, which wouldn't have happened otherwise. And we don't get to decide whether ... You don't get to weigh the consequences of one versus the other, but we have to appreciate that there are these positive outcomes. And, like you said, you have to reconcile that because I would imagine especially children, they would never want to think that it's okay that this happened, that death occurred because this happened. That would be very I think hard for someone to reconcile. But we have to somehow be okay with all of that, right? We have to learn to be okay with all of it. Elizabeth: Yeah. I at one point in my life received a label of the queen of the silver lining because of my [infallible 00:24:53] optimism. I think that that is not mutually exclusive with the experience of sorrow and teaching my daughter that we can be both happy with the life that we've built since the loss and also deeply wounded by the loss are not mutually exclusive, are something that we can reconcile and that we can live with simultaneously. It's difficult, and it takes a long time I think to bring those things together, to integrate them, but I think that like anything in life, there's a gray area that balances the life and the death, the light and the dark. And being able to live with that unknown, the in-between, I think that's a goal that I've encountered since losing someone that I loved. Dr. Bob: And I'm sure that that understanding has been extremely valuable for others that you've been able to counsel and engage with in your capacity as a social worker, as a friend. I do, the other thing that you mentioned that I completely, wholeheartedly agree with is the value of communication. It think the families, the people who have the most difficulty in struggle and have the most negative impact throughout their lives are those who can't communicate, who don't know how to communicate when they're in this, reeling through these circumstances that they didn't bring on, that they have no control over. Communication is so critical. Elizabeth: Absolutely, and I think that noticing that has been a huge part of what has inspired me to become an advocate for education in this field and for working to create those conversations and allow people to be a little bit more comfortable with acknowledging and experiencing the difficulty and the discomfort that surrounds conversations about life and death. Dr. Bob: Wow, a little light morning conversation topic, but this is really valuable. This is wonderful, and I think that there's so much more than we could tap into and touch on. And I'm going to ask if you're willing to come back and have an additional conversation or two with me? Elizabeth: I would be honored. Dr. Bob: Yeah, I think we have a lot more to discuss. We've been together and with some patients and families, and there will be many other opportunities for us to have these Life and Death Conversations, which I hope others will find some to be interesting and valuable. So thank you for sitting with me and having this conversation today. It was really informative, and really I'm sure valuable for many of our listeners. Elizabeth: Thank you for the invitation. Dr. Bob: Alright. Signing off now. We'll be back and chatting with you again soon.
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