At a Loss: Patient Deaths and Clinical Research Coordinators

Listen to ASCO’s Journal of Clinical Oncology essay, “At a Loss: Patient Deaths and Clinical Research Coordinators” by Dr. Hermioni Amonoo, a Carol Nadelson MD Distinguished Chair in Psychiatry at Brigham and Women's Hospital and the Dana Farber Cancer Institute. The essay is followed by an interview with Amonoo and host Dr. Lidia Schapira. Amonoo puts out a call for support for clinical researcher coordinators to manage grief after patient death in clinical trials.

TRANSCRIPT

Narrator: At a Loss: Patient Deaths and Clinical Research Coordinators, by Emma C. Deary, BA; Elizabeth Daskalakis, BA, Janet L. Abrahm, MD; Sue E. Morris, PsyD; and Hermioni L. Amonoo, MD, MPP (10.1200/JCO.23.00040)

As clinical research coordinators (CRCs) working on health outcomes research in patients with hematologic malignancies, we frequently navigate a patient’s chart to coordinate study appointments and collect clinical information. When opening a patient’s electronic health record, a snapshot immediately appears on the screen with the patient’s medical information: demographics, problem list, medical history, allergies, medications, and so on. However, there are times when the chart does not open immediately, and our stomachs drop. A small gray pop-up box that we know all too well reads: “You are opening the chart of [patient’s name], who is deceased. Date of death: [date].”

We dread that pop-up box. We feel shock, followed by profound grief for the patient and their loved ones. The three words in that one sentence pack an irreversible reminder that our workplace, the place we love, is the same place in which patients and families can experience their worst nightmare. Every time we wait the seconds it takes a chart to load, we hold our breath, hoping that box does not appear. CRCs, sometimes referred to as research assistants, conduct the day-to-day activities of a research study.

In human subjects research, this often means performing chart reviews, calling patients to administer surveys, meeting them at clinic visits, or talking to them about different aspects of their treatment and recovery. CRCs like us are typically young, early 20s professionals, who recently graduated from college and are still trying to figure out their career aspirations. We may have previous research experience working in undergraduate professors’ laboratories on organic molecules or with student research participants. Aside from volunteer experiences, we usually have not had professional interactions with seriously ill patients.

CRCs are the people patients associate with the research study in which they have enrolled. Through frequent study check-ins and phone calls, we build relationships with patients and often chat about nonclinical matters. Patients tell us about their children, grandchildren, pets, daily life, hobbies, and work. The more we meet with study patients, the more we learn about the intricacies of their lives: how they met their spouses, how much they miss seeing their families, and what they love about their hometowns. Even after only a few encounters, we form strong bonds with many patients from a wide variety of backgrounds. As we follow them along their treatment journey, we find ourselves fiercely hoping the treatment works.

When a patient dies, we cannot help but think of their life partner, husband, or wife, the friends they will never see again, their children, and their grandchildren. We remember their hobbies and the thoughtful ways they greeted us before appointments. We remember the numerous phone calls we made to remind them of our meetings. We remember the days they were smiling ear to ear under their masks and the days they felt so sick that they could not pick up their heads to look at us.

As CRCs, we do not communicate with patients outside the study. We are not their doctors, nurse practitioners, or anyone who has direct involvement in their care. But, we accompany them as they ride the highs and lows of cancer treatment. So, after a patient dies, we often struggle to understand our own emotions and what role we played in their lives. We record their death for the study and are expected to move on, seamlessly, after discovering someone has died. Our role as CRCs may be tiny compared to those of other providers, yet each patient’s death has a profound impact on us.

We recall the first time we learned that one of our patients died. We became motionless at our desk, distracted and unproductive for the remainder of the day as our thoughts returned again and again to that unexpected warning box. We were hesitant to even speak to each other about how we felt. Thoughts of “I should not be feeling this upset” and “maybe I am overreacting” blocked us from processing or trying to understand our grief. These thoughts were isolating, and we were unaware that many of our colleagues could help us share this burden.

Knowing that patients with serious illnesses die did not protect or prepare us for the waves of emotion we experienced when a patient in our study died. Some of us have had personal losses after which we also thought: “Maybe I do not have the right to be upset”— a childhood friend we are no longer close to dies, or we learn that a good friend has had a miscarriage—and our grief is confounded by our feelings of guilt. We experience disenfranchised grief1: grief that is not openly acknowledged, socially accepted, or publicly mourned. For us, there is no place to grieve with the patient’s family or the clinical care team.

Over time, our grief builds up, and it is hard to find a way to release it. Friends and family do their best to understand, but because they do not work in health care, they can find it difficult to grasp the complex emotions we experience. We seek solace with each other, but lacking coping mechanisms or clear direction, we ultimately bury our grief to continue doing our job.

Oncology and palliative care clinicians routinely care for seriously ill and dying patients. To learn how they deal with their grief, we asked our Dana-Farber Cancer Institute study principal investigator and three palliative care clinicians (two physicians and a psychologist, who is a bereavement expert) how we could begin to process our otherwise disenfranchised form of grief. We learned that Dana-Farber Cancer Institute palliative care clinicians hold weekly bereavement rounds or remembrance2: a time carved out every week to read a poem or listen to a song and then share meaningful stories about each patient who touched their lives and had died that week.

We adapted the bereavement rounds for our laboratory group of CRCs and principal investigators. We spoke about each patient we had lost, sharing the things that most affected us over the course of our interactions with them. We spoke of Jack (names are changed to protect patient identities), who was beloved by everyone in the clinic. His hearty laugh could be heard throughout the halls whenever he came in for a visit. On the last clinic visit before he died, Jack’s appointment was delayed, and he sat in the waiting room for over an hour. When we offered to help find him a room, he stood up and offered a hug in gratitude. The memory of such a seemingly routine request stayed with us for weeks after his death. When we spoke about Jack and his family during these bereavement rounds, we were able to share the wave of grief that overwhelmed us, that grief we had kept suppressed for over a year. We also shared stories about James (names are changed to protect patient identities) and his wife; they met in college and had been together for more than 50 years. Throughout his treatment, James told us often how upsetting it was that his immunosuppression prevented him from spending time with his grandchildren in person. Our hearts broke thinking of his wife and the reunions with grandchildren that would now never happen. Surprisingly, speaking about patients in our studies who died felt like a welcome release; finally sharing these memories and the worries we had harbored since each patient’s death was restorative.

Bereavement rounds have been invaluable in processing the grief we experience throughout the year. We found ourselves wishing we had known of them sooner, although it would be hard for CRCs who do not work with palliative care programs to be told about them. Through our quarterly bereavement rounds, we have learned to foster healthy grieving processes, creating time to honor each patient and acknowledge their impact on us.

This investment in our health and well-being has been crucial to maintaining resilience in the face of challenges that our job entails. We feel cared for by the larger program and know it is investing in us as whole people. Our professional development now extends beyond Health Insurance Portability and Accountability Act training and Collaborative Institutional Training Initiative certification to include education in bereavement, burnout, self-care, and compassion fatigue. Direct supervision and mentorship around grief and loss incorporated into our routine check-ins and meetings have been helpful, as well as an open door policy with our supervisors for informal support. We frequently debrief in response to challenging interactions or situations, including the death of a patient.

The designation of this safe space has emphasized a culture of support in our team settings. Learning to lean on each other when faced with emotional experiences has become a core aspect of sharing regular study responsibilities, especially when a patient dies. One practical strategy which  has helped us is going on a grief walk. After learning of a patient’s death, we stop work and take a 15-minute walk, either alone or with a colleague. We give ourselves the space and time we need to begin our grieving process.

Losing patients is part of our job as CRCs, as it is for many health care providers. Implementing programs and routines to understand and lessen the emotional burden on us has helped us better navigate our duties while fostering the coping strategies we need to do our job well. We want to learn and to immerse ourselves in academic medicine, and to do this, we need the support of our research team and institutions if we are to navigate the grief we feel when our patients die.

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, Associate Editor for Art of Oncology and a professor of medicine at Stanford University. Today we are joined by Dr. Hermioni Amonoo, Carol Nadelson MD Distinguished Chair in Psychiatry at Brigham and Women's Hospital and the Dana Farber Cancer Institute. In this episode, we will be discussing her Art of Oncology article ‘At a Loss: Patient Deaths and Clinical Research Coordinators’. 

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

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

Dr. Hermioni Amonoo: Thank you, Dr. Shapira, for the warm welcome and introduction.

Dr. Lidia Schapira: Let me start our show by asking this very broad question, and that is how did this article come about? We normally have first-person reflections in Art of Oncology, but this is a group reflection pulled by collective first-person plural, and clearly, you played an important role. How did this start?

Dr. Hermioni Amonoo: So as you know, my line of research is trying to understand the well-being needs of patients with hematologic malignancies who are undergoing hematopoietic stem cell transplantation. So this is a really seriously ill group of patients who we are trying to understand what well-being looks like for them in the midst of a serious illness and quite intensive treatment with several toxic side effects and a prolonged recovery. And so in doing this work, unfortunately, a lot of our patients, even in our trials, pass away either from their diseases or complications from the treatment. And so I have noticed over the past few years that a lot of my clinical research coordinators who are young, 20-something-year-old, freshly minted college graduates, who are very critical to the work that we do, have to grapple with the loss that comes with working with our patient population. A lot of these individuals take on these clinical research coordinator roles because they want firsthand experience with patients, but that is one thing. But then working with patients who you bond with, even from mundane conversations, and then having them die was a huge sense of loss and frankly, a bit of a surprise for them. 

And so, as a psychiatrist, used to sitting with people in grief and helping them reflect different losses that they encounter, but I quickly realized that supporting my CRCs was a little bit more than even what my training had prepared me for and definitely, my training as a researcher hadn't prepared me adequately to be able to support these young clinical research coordinators. And so in our struggle, or I would say I've had a burden for this for several months, I would say a couple of years now. And so one of the ways that I struggle, I manage different burdens is to write about it. So I sort of shared the idea with my clinical research coordinators, a couple of them now, and they really caught on to the idea. And so we decided to share what our experience has been with this. And then I also reached out to a couple of colleagues in palliative care and the director of bereavement services at our cancer center to also support us, or support me to support our clinical research coordinator. So that's sort of how this idea came about. And that's a really long-winded response. I'm sorry.

Dr. Lidia Schapira: It's so interesting to think about this, writing as a tool for processing a difficult experience is something that we often discuss with our authors for first-person narratives. What makes this entry and this essay so original, in my opinion, is that this is a group effort and you have so beautifully spoken about the need to, especially for these very young 20-something-year-olds, to process this very difficult experience of grief. And in addition to this manuscript, you speak here of doing this through some form of bereavement rounds, something that you've taken from a clinical setting where we find that it helps support people working with patients who are very ill and who experience a lot of losses to the setting of a research lab. Tell us a little bit about how that idea came about, how you're implementing this very original and useful tool in your own group.

Dr. Hermioni Amonoo: It started out with, before instituting what we call remembrance rounds, my CRCs would typically call me whenever they heard of a patient's death. They will literally call my cell phone, I'll stop everything and sort of take a moment of silence with them and ask them how they were doing and check in via supervision and things like that. But it definitely felt inadequate considering the amount of pain that they experienced with the whole process. And so our palliative care teams have this remembrance of bereavement rounds every week. And obviously, on a palliative care service, they have a lot of patient deaths per week where pretty much every clinician on the team would get together for half an hour to an hour. You have different members leading these rounds where someone will share about a patient who had passed away, a memory or something about the patient, and the whole group will reflect on it. 

For our purposes, we thought it would be great to adapt that for like a lab setting. Fortunately, we don't have a huge volume of patient deaths per week but we realized that a month or every three months we would have close to between five to ten patients who would die from our trials, which is, again, a lot. And so, in conversations with our Director of Bereavement Services and our palliative care colleagues, we picked that time frame every quarter to get together as a lab where the names of patients in our trials who have passed away would be shared. And different members of the team who have interacted with a given patient will share, like a memory, either from a conversation, a poem, or a song, or something that brought to life the individual as a way to just process and acknowledge the loss that comes with losing patients. And I think it's also even more critical in the lab setting because, unlike the clinical setting where there is some form of a closure because as a clinician you may be able to call the patient's family and you sort of have permission to do that. But in the research setting, my CRCs felt like once they recorded the patient had died, they had no business in calling family members or doing anything like that. And so it was helpful to create the safe space to process all of that. 

In addition to the remembrance rounds, we also arranged with our bereavement services in the cancer center where there are actually cancer center bereavement cards where clinicians could write notes to families. And so our CRCs have started doing that as well, where we could use the cancer center template and if they wanted to, could write a note to the family as a way to share how they were feeling about the situation with the families as well. So that is something that in addition to bereavement rounds, we started doing which is also helpful.

Dr. Lidia Schapira: I was very moved and I was very struck, as were the reviewers, by a few things in your article. One, is that you take responsibility for supporting your research assistants. Two, is that you take on what I will say is an almost mentorship role for helping them process this in a way that sort of still leaves them engaged with the content material and stimulates their growth as professionals. And hopefully, some of them will be future medical students, physicians, and maybe even oncologists and psychiatrists. In fact, our reviewers wrote that after reading your paper, they had implemented similar protocols in their own labs and that's pretty amazing. So tell us a little bit more about how your efforts, you think, contribute to creating a more supportive culture in general in our workplaces, both in the lab and research setting, but also this translates into clinical settings.

Dr. Hermioni Amonoo: So I think maybe more so than others, I see my clinical research coordinators as really critical partners in the work that we do, especially in clinical research. They are the face of the trials that we do in some ways. They meet all our patients who are eligible for our studies. And they do spend a lot of time with them, especially in the longitudinal studies that we do, where there are multiple assessments. They are calling patients, they are speaking with them in waiting rooms, and they are really essential to a lot of things that we do. When I think about how much we compensate them monetarily wise, it really isn't a lot for really talented college graduates. And so I think, for me, I view an intangible way of making this whole experience worth it, based on how much they contribute to my research program, is to really mentor them. I think as an individual, mentorship has been very critical to my own career development, and working and mentoring CRCs is one way that I pay it forward.  

And I think because that is very much a part of our lab and our team culture, the CRCs are also willing to go above and beyond and really contribute to the work that we do. Because there is so much that as a principal investigator, you can't always be with them 10 hours in the day that they are working. But when you really get them to latch onto the heart of what you're doing and knowing that they are also going to grow professionally and explore different things about medicine, in general, has been really rewarding. In fact, I've had research coordinators who came in thinking they wanted to do Ph.D. in psychology programs, but then in interacting with patients, they have expressed interest in potentially pursuing nursing. I have a CRC now who came in thinking one thing and is going to nursing school this summer. And so I think there's really a great opportunity to expose them to the breadth of clinical experiences like in medicine. And one way to do that is to be intentional about looking for opportunities to allow them to see things beyond what they even thought they wanted to gain out of the experience because we can't pay them as much. 

Dr. Lidia Schapira: Let me tell you that after this podcast you will be getting emails from people who want to work with you. It sounds like you're an ideal mentor and so collaborative and so generous in your mentorship. It's amazing. I was also thinking, as you were speaking about the people involved with patients and families who are struggling through very difficult times and die, some of our staff, not the ones involved in research, but the people who book appointments and get to know the patients and listen to their stories, they also need a place to grieve and they need to be notified when patients die. And most of us don't have sort of a system or a process for thinking about that, and maybe we should, taking a page from your playbook here of thinking about all of the people who interact with patients and all of the people who are themselves impacted by what happens to these people we take care of and many of whom are so generous as to participate in our research studies. So let me end with a forward-looking question and that is do you have, as a researcher, any interest in studying this?

Dr. Hermioni Amonoo: Again, thank you for your really generous and nice comments about the mentorship. And I totally agree with you that there is definitely room to care for a broader range of our clinical team, not just people who have hands-on clinical duties or interactions with our patients. And I think it's even more pertinent in these times post the COVID pandemic, where a lot of individuals who work in clinical settings and again, COVID being the great revealer, it sort of uncovered how a cross-section of hospital staff are really impacted by different difficult things that happen in the hospital. So I think there is a lot of room to even look at how different staff manage loss and grief of patients. And patients dying is just one form of loss that we all have to grapple with as clinicians. But I think it's an area that a lot of people haven't even considered before, and I think there's a lot of room to study the impact of some of the things that we are doing in a research setting. I am open to that. I would need collaborators to do that, because to be able to do it well, I think it's not like an area of expertise yet. I feel like I am growing in this space myself, which was part of the impetus for reflecting in this perspective. I know the director of bereavement services has also been open to extending this to other labs in our cancer center and so I am totally open to that. And if anyone is interested in exploring this in a more rigorous and robust way, as it does deserve, I think I'm open to collaborating with others to pursue this to its fullest. 

Dr. Lidia Schapira: That's good for all of us. And my last question, Hermi, you've been so generous with your time, is this: if you look back or think back about your early days, your formative years as a student, or maybe if you also worked as a research assistant, did you have a mentor who took the time to listen to how these experiences were falling on your soul? Not just whether or not you showed up for work every day, but how you were thinking about this and taking stock of your own losses.

Dr. Hermioni Amonoo: So yeah, I think I have had a village of mentors who have been really invested in me as a human being first beyond work-related interest, and I think that has been really instrumental. And I think my mentors have had to explore some of these topics with me because of my own personal losses and I think having family deaths over the course of my training. And so I've been really privileged to be a beneficiary of mentors who really focus on helping their mentees grow. Not just in a technical way or a career development or professional sense, but really being attuned to how much, for lack of a better word, someone being well in their soul and in their mind, really is interconnected to how well they do professionally such that you don't burn out or lose the sense of joy in the things that we are doing. So I've definitely been a first-hand beneficiary of that, and my psychiatric training probably also makes me a little bit more attuned to those things than probably in other fields of medicine.

Dr. Lidia Schapira: Well, thank you for a wonderful conversation. Thank you for the work that you do and for sending your work to Art of Oncology, the JCO. So until next time, thank you all 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 ASCO shows at asco.org/podcast.

 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:

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Guest Bio: 

 Dr. Hermioni Amonoo is a Carol Nadelson MD Distinguished Chair in Psychiatry at Brigham and Women's Hospital and the Dana Farber Cancer Institute.