Knuckleheads: Understanding Patients Who Reject Treatment

Listen to ASCO’s Journal of Clinical Oncology essay, “Knuckleheads” by Dr. Timothy Gilligan, Vice Chair for Education at the Cleveland Clinic Taussig Cancer Institute. The essay is followed by an interview with Gilligan and host Dr. Lidia Schapira. Gilligan emphasizes the importance of partnering with his patients to understand what they are going through and their reason for rejecting recommended treatment.

 

TRANSCRIPT

Narrator: Knuckleheads by Tmothy D. Gilligan, MD, FASCO (10.1200/JCO.24.00160)

I was in tumor board when I first heard about him. One of my former colleagues referred to patients like this as knuckleheads, patients who were interfering with our plan to treat their cancer. He needed chemotherapy. He kept refusing. He was going to be referred to me so that I could talk some sense into him.

Preparing to go into the examination room, I realized I was getting ready to use my medical knowledge to try to make him consent to chemotherapy. After all, that is what he needed. If only he would listen to me. I paused and remembered what my mentors had taught me about forming effective relationships with patients and about the communication skills that could engender trust and a feeling of connection. I remembered one of them saying to me “Every time I open my mouth, I risk making things worse.” So I committed to listening and curiosity and humility and entered the room. He had a curable cancer. There was so much at stake.

“What have the other doctors been telling you about what’s going on?” I asked. He said he had been told that his cancer had come back and that he needed chemotherapy now. That additional surgery wasn’t an option.

“I heard that you had some concerns about chemotherapy,” I said.

“Yes, I want to delay it until the fall,” he said.

“Tell me about that,” I responded.

So I got to hear his story. He was a single father with several school-aged children. His wife had recently left him for another man and said a lot of hurtful things on the way out the door. She no longer wanted to be a mother and only saw the kids 1 or 2 days a month. His oldest child was in crisis and struggling in school. The patient was a construction worker who could only work during the warmer months and would be unemployed all winter. As a seasonal worker, he was not eligible for unemployment benefits. He was the sole breadwinner for his family. It was now summer. If he stopped working for 3 months to receive chemotherapy, he would not be able to support his family and had no way to make it up during the winter.

Not really the story of a knucklehead, of another man refusing to take care of himself. It all seemed so unfair to me that I wanted to cry, to have all this land on him at once—cancer, abandonment, a child in crisis, financial instability. He was overwhelmed. I let him know that I saw that, that I was moved by it.

We talked about his cancer and what we would expect to happen if it was treated and what would happen if it was not. He wondered if maybe we could wait 2 weeks and get another scan to see how quickly things were progressing. Medically this seemed safe, and I agreed to his plan. And with the help of the social worker on our team, we started marshalling resources that day to make it more feasible to get him through treatment, which he agreed to begin a few weeks later. He completed the course of chemotherapy, and he has most likely been cured.

He reminded me of another patient I had, an African American woman who had been referred to me by one of my only African American colleagues in my work setting. She had bladder cancer. When reviewing her chart, I noticed that she had been diagnosed 2 years earlier at a different hospital and refused treatment. The chart said that she needed to take care of her children and declined curative surgery for that reason. It seemed like an odd logic to me. Another knucklehead refusing to comply with our plan?

When I went into the room, she clearly did not trust me. I saw skepticism in every aspect of her behavior and wondered whether it was my whiteness that triggered it. I remembered my mentor's words about the risk of opening my mouth when I was not yet sure to whom I was speaking. So I listened, paying attention and waiting for an opening. Eventually she said, “You know, I was actually diagnosed 2 years ago.”

“Yes, I saw that in your chart. I was wondering what happened.”

“Well, I was all set for surgery. And when they were evaluating me for it, this anesthesiologist came into the room. And she stood there looking at me like I was a piece of dirt. And she wouldn’t answer my questions. And I said to myself, I’m not letting her take care of me.”

“Was that racism?” I asked her.

“Yes, it was,” she said.

“It sounds like racism,” I said.

“I know it when I see it,” she said.

After that, there was a striking shift away from the skepticism I had felt from her earlier in the visit. We talked through her treatment options. We set her up to see a radiation oncologist and a urologist who did radical cystectomies. When I called her at home after those visits to see how they went, I heard that the radiation oncologist had won her trust. The urologist had not. “It felt like he couldn't wait to wheel me off to the operating room,” she told me. So she choose bladder preservation with chemotherapy and radiation.

It turned out that she was a foster mother and was deeply devoted to her foster children. She wanted to be there for them. They were not a reason to decline life-saving medical care. And we talked about them at every visit as she made her way through treatment. She, too, seems to have been cured, despite the delay.

What surprised me about these two patients is that no one seems to have heard their stories during their initial encounters with the health care system. The only story that was heard was the story of the tumor, the focus of our tumor boards. And yet it only became possible to treat them when we learned their human story. I wonder whether tumor board is the best name for the conferences that bear that moniker. Does the name predispose us to focus on the disease rather than the person? And while I did get to hear the stories of these two patients, it made me wonder how often I have failed to do so with others on days when I was not being so careful.

What was it that led them to choose treatment? Human decision making is complex and influenced by many factors. I tried to see these two patients and to hear them and to make a connection. I cannot know for sure what made the difference.

This is what I do know: I am not entitled to my patients' trust. It is something I have to earn each time I walk into the room. One way to earn it is to listen and to be responsive to what I hear. I try to remember where the locus of control lies. It is their life, it is their illness, and it is their decision. I can advise them and help them understand their options. Together, we can explore what is most important to them. But I do not get to tell them what to do. If they decline to follow sound medical advice, maybe there is something important that I do not know. If I stop talking, maybe they will tell me.

 

Dr. Lidia Schapira: Hello, and welcome to JCO's Cancer Stories: The Art of Oncology, which features essays and personal reflections from authors exploring their experience in the field of oncology. I'm your host, Dr. Lidia Schapira, Professor of Medicine at Stanford University. Today we are joined by Dr. Timothy Gilligan, who is Vice Chair for Education at the Cleveland Clinic Taussig Cancer Institute. In this episode, we'll be discussing his Art of Oncology article, "Knuckleheads." 

At the time of this recording, our guest has no disclosures. 

Tim, welcome to our podcast, and thank you for joining us.

 

Dr. Timothy Gilligan: Thank you so much for having me. I'm really happy to be here.

 

Dr. Lidia Schapira: It's my pleasure. Let's start by talking a little bit about the purpose of writing and publishing this article that, to me as a reader, has a direct message for our colleagues in oncology. Tell us a little bit about the motivation and the intention.

 

Dr. Timothy Gilligan: So I think there are two pieces to it. One actually was feedback that I heard from medical students, and we would talk to them about their experiences in the hospital with regard to bias and related issues. One of my hats that I wear is I'm a DEI officer for graduate medical education, so I'm involved in that work. We heard two major complaints from students, and one of them was that they heard doctors, whether they were attendings or residents or interns, speaking about patients disrespectfully. And the big kind of ‘aha moment’ for me was realizing that we kind of get indoctrinated into this world where we sometimes let off steam by speaking about our patients in disrespectful ways. And I remembered when I was a junior attending, a senior attending, handing off a patient to me, saying, "Good luck with her. She's crazy." And I was so used to that language that I didn't pay that much attention to it, but I actually ended up forming a very good relationship with that patient. 

But after I heard that feedback from the medical students about how it really upset them that we're taking care of these people, and sometimes outside the room, we use language that isn't really respectful. It's not that it was mean, necessarily, but it was less respectful than you'd like it to be if it was someone like your mom or your loved one, your brother, or whatever. And so I started really listening to that, and I tried to pay attention. Did I do that? And could I stop doing it if I did? So that was one piece of this. But the other thing that really motivated me is that the first story that I tell in this article really was my favorite patient of 2023, because I actually felt like, by taking an extra effort to really get to know the person, I was actually able to really get a better outcome for the patient. And when we got him through treatment and he was cured, it felt like such a win.

 

Dr. Lidia Schapira: Let's pause for a moment and just talk a little bit about the student's comment, because when I just saw the title of the article, I felt a little stung, like, how can we even be using this word to refer to a patient? Tell us a little bit about that. You are the most attentive, respectful clinician that I know, and you publish an article with a word that a colleague described the patient, and to me, it just doesn't pass the bar.

 

Dr. Timothy Gilligan: Yeah, well, it's funny, because, actually, the person I heard use this language is one of my favorite doctors and is really an amazing doctor. And so good people can use language like that, and I think we need to stop. But I almost used it affectionately because I learned a lot from this doctor. And as the doctor actually had very, very high clinical standards, and I admired that about them. But I'm an expert in testicular cancer. And sort of the word on the street among doctors who test testicular cancers is that the challenge is you have these men in their 20s who don't take their health care seriously and they won't follow your advice. And so they get referred to as "knuckleheads," which is not a word we should be using. But that's where I came from. I didn't make that up. It's a word I had heard in my practice.

 

Dr. Lidia Schapira: Let's talk a little bit about why you were called in to see this patient. He refused therapy and you were called in to go and have the conversation that will make him accept therapy because refusal of therapy seems unreasonable. Help us understand a little bit about how somebody should think about a patient who refuses therapy. Broadly, it seems your advice is to go in and get the story, and the story will explain things many times, but tell us a little bit more about that.

 

Dr. Timothy Gilligan: Yeah. The patient was sent to me because I'm the local expert in testicular cancer. And the thought was that the oncologist could get the patient to go along with the treatment that was recommended. And I realized shortly before I went into the room, I was all geared up to marshal all the evidence and all the facts and to explain to him why he needed treatment no matter what. And I remember when I was in training a surgeon, once I was in the room with them, I was talking to a patient and the patient was talking about how complicated it was to get through the treatment. And the surgeon said to the patient, "Well, you know, right now the only thing that matters is your cancer." And I remember thinking, well, that actually may not be true because people have lives. They have to pay their bills, they have a job, they have a family, they have kids they're worried about. For us, it's easy to say ‘your cancer is the only thing you need to worry about,’ but often it's not. And so I think what helped me with the patient was to sort of pause before I went into the room and think, what's the story here? What don't I know yet that I need to know? And how can I find it out?

 

Dr. Lidia Schapira: And you tell the reader that you relied on advice you'd received from an attending years before, that also warned you that if you say too much, you could be making things worse. If you open your mouth, you could potentially contribute to whatever the tension was that had created this impasse to begin with. So you slowly sort of let the patient tell you the story and you're drawn in. Tell us a little bit about what it feels like to be drawn into this patient's story, somebody who had already been labeled as being perhaps difficult or refusing a life-saving therapy.

 

Dr. Timothy Gilligan: Well, honestly, I ended up being really surprised. And I think the issue you're talking about that what it reminds me of is when I was early in my career, I found it very confusing that I would have patients who really loved me and was glad I was their doctor, but then there'd be some patients who it felt like they didn't really love me and they wish they had someone else as a doctor. And I tried to figure out, like, I'm doing the same thing. Why am I getting such different reactions? Then, of course, the obvious explanation is I'm seeing all these different people who want different things. And I think going into the room with this sense of, before I say anything, I need to figure out who I'm talking to, because a given approach will work with one person but not with another. And if I can figure out who's who and tailor my approach to the individual, I can have much more success. And so it got me in the habit of trying to really start with listening and listening and watching. When I work with fellows, what I try to get them to do is just really observe carefully. So rather than put their energy into talking, put their energy into watching and listening and figuring out: “Who is this person? What kind of day are they having? What do they need from me? How can I be helpful to them? How can I speak to them in a way that they'll feel like I'm on their side and they can trust me and I respect them?” and all of that. And so the shorthand for me is to go into the room with curiosity and find out, who is this person? And I figured that out not by talking, but by listening to them. That's how I got him to tell me his stories. I just asked him, like, "I hear you don't want chemotherapy. Tell me what's going on." Then I heard this whole story.

 

Dr. Lidia Schapira: And his story is heartbreaking.

 

Dr. Timothy Gilligan: It is.

 

Dr. Lidia Schapira: He's been abandoned by his wife. He's got to support the kids. He's got to work in the summer. And it's not that he doesn't want to live. He just doesn't see a choice here. And you say in the article briefly that you were moved by the story, and tell us a little bit more about what happens to you when you're moved by a story.

 

Dr. Timothy Gilligan: I became a little bit emotional. I don't think I really cried, but I paused for a moment to kind of catch myself. I think particularly I brought a social worker into the room to help with what was going on and the nurse I work with closely. And I told them the story. I actually thought that ended up being effective. It wasn't really something I had planned, but I wanted to get them up to speed and I didn't want to make him tell the story again. And so I told his story to them and I thought what was effective about that was, first of all, it let him know I really heard it and I got it. And it wasn't the story of the medical facts, it was the whole story. But when I told it, I realized what a sad story it was and how unfair.

 

Dr. Lidia Schapira: So, Tim, let's talk a little bit about that. In the course of the work that we do, we are deeply moved and touched by the stories of the people that we treat, the people whose diagnoses we are experts in. But their lives are really their own and they share things that are incredibly intimate with us. So tell us a little bit about how you have, over the course of your career and as self-aware as you are, dealt with the emotional load.

 

Dr. Timothy Gilligan: The other thing I tell fellows is I think it's really important to have hobbies outside of medicine. I think you have to find a way to recharge your batteries. But if you don't care, if you try to protect yourself by not caring, then you're missing out on the meaning of the work. 

I have a short anecdote I can share that really had a big impact on me. When I was in my first years of attending, I was treating a man with testicular cancer. And we tried and tried and tried to cure him and kept thinking we were going to be able to, but his tumor ended up being really very resistant to treatment and eventually it was not curable. And he was in the ICU. I think he had an infection, this complication from treatment, but it really was game over at that point. It was appropriate, medically appropriate, to withdraw care. We were just going to torment him to keep him on life support longer. And I went to the meeting with his mother and his sister and this attending who had supervised me, who I admired greatly, one of the people who changed me when I was an intern and I was in the ICU, so he's the ICU attending. I'm there as the oncologist, I'm kind of running the family meeting and I tell them I don't think there's anything more we can do medically, and it's time to withdraw life support. And I started to cry, and I felt really embarrassed because here's this attending who I admired so much, and gosh, Tim Gilligan can't even keep it together in a family meeting. And I felt a little embarrassed. But I really cared about this patient. I'd known him for a year and a half, and the family agreed, and withdrew life support and he passed away. And I ran into his sister about six months later, nine months later in the grocery store while shopping, and we talked for a little bit, and she said that what made them feel okay about withdrawing life support was the fact that I cried.

 

Dr. Lidia Schapira: It's a beautiful story, and thank you for sharing that. We often talk about the therapy of connecting with a patient, but connecting means connecting at an emotional level. And it's sort of disingenuous to think that we can do that without feeling and personally being affected by that. 

When I was training, Tim, before we formally taught communication skills or integrated palliative care and talked about self-care, the advice I got from my attending was that you just go for a run as a way of recuperating. And I remember from a prior interview I did with you that you like to play tennis. Do you go for a run? Do you play tennis? And do you have any other advice for colleagues, especially junior colleagues who are just entering this field and realizing that connection means engagement. And engagement may mean loss and grief because we care.

 

Dr. Timothy Gilligan: So I do still play tennis. And what I love about tennis is that I can't think about anything else when I'm trying to hit a tennis ball. It's the best I can do. I can't meditate. But tennis is like meditation for me because I'm not obsessed with winning or losing. I do try to play good tennis. I like to hit a good ball, and that requires a lot of attention and a lot of focus, so it gets my head out of it. And then I also just think the stress relief. I mean, I can be aggressive on the tennis court in a way that's not socially acceptable to be aggressive elsewhere. I can hit that ball as hard as I can and not do any harm to anybody. So I think that stress release is really important. I think exercise, the benefits of running. I mean, there are so many benefits, psychologically and emotionally, to exercise and really being in your body. So I think some way of recharging your batteries.

And what I worry is that sometimes you get this model of keeping our distance, our professional boundaries, and not get in too deep, not caring too much. And I actually think, as I said before, that the meaning of this work is caring and connecting. And so then if you're going to be drained in some ways, you have to figure out how to fill yourself back up. The risk is that there's a sort of ethic in medicine where you give everything to your job. But you burn out if you do that. So it's the feeling that it's okay to go play tennis, it's okay to go for a run. It's okay to read poetry or meditate or cook or do whatever it is that refills your tank. I think it's so important in this work to prioritize that and make room for it. Let’s not take pride in being a workaholic and working all the time. What I have observed is that those people become less effective as physicians, at least in terms of the humanism of it.

 

Dr. Lidia Schapira: I couldn't agree with you more. 

I'm wondering if you can also tell us a little bit about how you think storytelling and narratives in oncology can also help create a thoughtful and more supportive community. And that’s a lot of what we do here in publishing some of these stories.

 

Dr. Timothy Gilligan: Yeah, it’s a great question, and an important one. I'm not going to say anything original here, but I believe very strongly, as many people have written, we understand our lives as stories. We understand narratives. We organize ourselves around stories to a large extent. And one of the things I think that is a powerful question to ask myself often in life is, “Am I telling myself a story? Is that the best story? Are there other versions of that story that may be more true, or other stories that are equally true that may enrich my understanding of something?" And so I think storytelling is complicated. Sometimes we tell ourselves false stories. Sometimes we tell ourselves moving stories. But I think one of the things that we see in this work is that life has sadness in it and life has loss in it, and the solution isn’t to hide from it or protect ourselves from it, but I think just to see the best part of the human experience and sometimes the deep meaning in it.

And one of the beautiful things all of us in oncology see with some patients, not all patients is how, when faced with a life crisis, is the sudden clarity about what really matters. And oftentimes relationships deepen and people appreciate the beauty of their connections with others. Diving in and really hearing these stories, getting to know our patients as people is where the richness of the work is. And that's why people go into oncology. When you read applications from residents who want to be fellows, most of them talk about how moved they were working with cancer patients. And I think hearing their stories is a part of that work. And if we stop doing that, we are missing out on what actually made us go into the work in the first place.

 

Dr. Lidia Schapira: And that's one of the things that struck me about your narrative in that it's not just a lesson in communication or a plea for listening to patients and treating them humanely, even when they seem to refuse therapy, but that you actually talk about being moved and bringing yourself into this and taking the time to connect with the patients. In addition to the fact that in the two cases that you describe here, by doing that, you actually solve the puzzle. You figured out why it was that they either delayed or seemed to have refused treatment when, in fact, both of these people very much wanted to live and had a lot to live for.

 

Dr. Timothy Gilligan: Yes, that's right. The second case was a much less typical one for me. What was interesting for me about that was that it was the first time I really brought the issue of race and racism into a conversation with a patient. I struggle with that because I know from the medical literature and I know from talking to people I know, as well as patients I've taken care of, that people do encounter sexism, racism, and other forms of bias in healthcare, and we are often scared to talk about it. The reason I wanted to write about that case was that the patient really handed it to me on a platter. She couldn’t have made it easier for me to name it. And it was amazing to me how it transformed the interview after I named it. I went from being treated like there’s no trust. I tell you, it felt very antagonistic interview up until that moment. And then suddenly we connected. And that was interesting because when she was walking out the door - I didn’t put this in the essay - she looked at me and she said, "Now I know why I was referred to see you."

 

Dr. Lidia Schapira: What a wonderful, wonderful endorsement. I'm sure that made you feel very good. How do you use your experience and the knowledge that you have accrued over years now of practice to teach your students, residents, fellows, and even your peers to be present, to call out injustice, to form important therapeutic alliances with patients? How do you actually do that every day?

 

Dr. Timothy Gilligan: I don't think it's easy. I think the easier part of it is to enter the room with curiosity and to be attuned to the fact that there are things that you don't know yet that we need to know, that the patient is an expert in their own experience and the patient is an expert in their own body. And if we go in with that humility, that we have medical expertise and they have expertise in their own self and their own lives, that we can work together as a team and try to break down some of the power differential. I think that helps a lot. I think there are certain questions that can be helpful to ask like, "What has your experience in the healthcare system been?" Because oftentimes, we assume one thing, and the patient's experience has been very different. 

I've been influenced recently by work in trauma-informed care. A shorthand sentence for trauma-informed care is that we shouldn't ask, "What's the matter with you?" We should ask, "What happened to you?" And then if a patient is acting in a way that seems odd or difficult to explain, or simply difficult to put up with, we might ask ourselves, "What happened to them that this behavior actually does make sense?” And that if we approach it with sympathy and hear their story, we can work with them more effectively. It doesn't mean we should put up with intolerable behavior, but that oftentimes the behavior or the decision-making starts to make sense if we get more information and find out more and come in with a less judgmental attitude and more curious attitude. It's hard, and I don't have a simple answer, but I do think those tools, curiosity, listening, humility, and recognizing that the patient is a different person with a different experience of the way they are navigating through the world, even if it doesn't make sense to us, does make sense given what their experience has been.

 

Dr. Lidia Schapira: Tim, I certainly appreciate and am so glad that you continue to think about these problems, that you write about them, and that you make it sound simple for us to connect with our own sense of vocation and to try to bring everything to the bedside, not just a list of new therapies. So thank you for that, and thank you for sending your work to us.

 

Dr. Timothy Gilligan: Thank you for having me today. It's been a pleasure talking to you.

 

Dr. Lidia Schapira: And with that, until next time, thank you for listening to JCO's Cancer Stories: The Art of Oncology. Don't forget to give us a rating or review, and be sure to subscribe so you never miss an episode. You can find all of the ASCO shows at asco.org/podcasts.

 

 

The purpose of this podcast is to educate and to inform. This is not a substitute for professional medical care and is not intended for use in the diagnosis or treatment of individual conditions. 

Guests on this podcast express their own opinions, experience, and conclusions. Guest statements on the podcast do not express the opinions of ASCO. The mention of any product, service, organization, activity, or therapy should not be construed as an ASCO endorsement.

 

 

Show Notes:

Like, share and subscribe so you never miss an episode and leave a rating or review. 

Guest Bio: 

Dr. Timothy Gilligan is Vice Chair for Education at the Cleveland Clinic Taussig Cancer Institute.