A Labor of Love: End-of-Life Support for Young Patients

Listen to ASCO's Journal of Clinical Oncology essay, "A Labor of Love" by Dr. Rebecca Kowaloff, a Palliative Care Attending at the University of Massachusetts. The essay is followed by an interview with Kowaloff and host Dr. Lidia Schapira. Kowaloff shares how she connects and supports young patients and families at the end of life.

TRANSCRIPT

Narrator: A Labor of Love, by Rebecca Kowaloff

I had always thought that I gave too much space for death at the bedside of my patients. More than most of my medical colleagues, I seemed to accept its inevitability and had learned to talk about it, to watch it, and to sit with it. I did not cry, even for the patients robbed in their middle age by cancers sucking their life from within, aging them in hyperspeed before my eyes. Why did the weight not feel heavier to me when so many around me seemed unable to carry it? Despite the frailty of his body when we met, caring for Michael showed me my strength. He was a 25-year-old investment banker on Wall Street when he was diagnosed with a rare sarcoma. I wondered what he was doing the moment that first cell divided. Was he working late, handing a $100 tip to a taxi driver as his father said he sometimes did, or practicing with his college soccer team? Was this disease written into his genetic code when he was traveling the world with his family, smiling with missing teeth on a dock in Egypt in the pictures his father showed me? Did his body know it would have only 29 precious years, making him so generous to strangers, so thoughtful of others, and so eager to experience life and travel the world? I am sure he was full of hopes and dreams that shattered at the moment of his diagnosis. Amid the onslaught of emotions at diagnosis and as various chemotherapy regimens failed him, he started a foundation for sarcoma research to leave a legacy of helping children with similar rare tumors.

Outside the hospital, we would almost have been peers as I was less than 10 years older and could imagine the assumptions he would have had about his life would be similar to my own. Suddenly there was no meeting a life partner, no wedding, and no children. There was no career advancement, no retirement trips, and no new hobbies or interests. There are books that will go unread and current events unexperienced. The world which had been expanding at a spectacular pace suddenly contracts to one person's orbit: family, close friends, and what dreams can be realized on a shortened timeline in a perhaps newly limited body. He moved from New York City home to his mother's house, returning, in some ways, to childhood.

His soft-spoken mother listened to my prognostications with grief but not surprise, and my heart ached and eyes welled as I thought how she was watching her baby die. Each night on my drive home, I wept for her. When she saw him walk for the first time, she must have wondered what sports he might play. When he spoke for the first time, she might have wondered what conversations they would have, what speeches he might give, what school plays he might perform, and what songs he might sing. Like me she might have imagined cheering him on in sports, dancing with him at his wedding, and holding his children. She had watched him forge a path onto Wall Street and earn the friendship and respect of teammates on ever more advanced soccer teams. The sadness of her first child leaving home for college had surely receded as he self-actualized into a thoughtful, well-liked, and successful young man. And then came the diagnosis, and she watched all that her son had built slip away, watched him cling to as much normalcy as he could as the sarcoma ate his legs, sank his eyes into his skull, and sucked the color from his still-thick hair.

His father appeared one evening almost a month into his hospital stay with the desperate questions of a parent who has been in such deep denial he had not even told his brothers back home about Michael's illness. In a power suit, he blubbered that he could not live without his son, his "light," and begged me for fantastical treatments to fix him. In a tiny windowless meditation room, I rode the waves of despair with him. I explained over and over why our best efforts were no match for Michael's cancer.

Michael and I were practically peers and yet he entrusted me to lead him into this deep dark forest of the unknown, his final journey. Most times when entering his room I thought he had begun to "transition," his eyes half closed, his skin so pale and translucent, and his body so frail. One morning, I sat next to his bed and gently told him he was not improving, his lungs were failing, and I could not, would not, recommend intubation, which seemed imminent. He protested, asserting from behind an oxygen mask that he felt he was improving. He talked about physical therapy and restarting the treatment that had led him to this hospitalization, that had finally failed as he had always known it eventually would, but which was his last hope. His denial was his last defense. I met him where he was, shared his hope, but held fast to reality, framing the decision not as a choice he had to make, but as a recommendation from a trusted physician and an acceptance of his body's truth. He agreed, do not resuscitate, do not intubate. He thanked me and asked why I was the only honest one on his team.

When we entered the room to recommend against a BiPap bridge to nowhere, his father tried to block the painful conversation with his body and his pleas "No, please, I don't want him to hear this!" I sat at Michael's side, completing an arc of love and care with his mother, sister, and nurse, and put into words what he knew and was living. His answer broke us all, "Done."

This one word, said with surprising strength and finality, felt just as defiant as all his previous optimistic phrases, although it was an acquiescence to reality. To his end, Michael directed his care and made his own decisions, and he made it clear that he was finished with cancer before it

finished him. For the first time ever, I sobbed at the bedside. I told Michael I would never forget him and what an honor it had been to care for him. The only response he could muster was, "Likewise," which will live inside my heart forever.

His mother, pregnant with grief for 4 years since his diagnosis, began her labor of loss, the painful, arduous separation of child from mother. His breathing became more labored, more erratic. Eventually his consciousness shifted beyond the scope of the room. Had his eyes been

open, I know I would have seen the look that I have come to identify with those on the precipice of death: Eyes beginning to glaze, one foot in this world, one in the next, looking beyond us. There was no more color to drain from his face, his translucent skin draped across the angles of his frame.

Finally, 3 days later, he returned to that from which we all come into being. The pictures at Michael's funeral were interchangeable with my own from my childhood and college years. The lost tooth photos and pictures taken in friends' swimming pools, huge grins on family vacations in the woods, or in front of monuments. I could almost hear the raucous whoops of a soccer team celebrating after a game and could hear the giggles of posing teenage girls with boys jumping exuberantly and mischievously behind them. The red-faced newborn peering over his mother's shoulder and the toddler posing in overalls with his baby sister were similar to pictures of my own son.

His childhood snow suit was tacked to the wall next to his college jersey. He was every mother's child. His college soccer coach in the funeral receiving line commented on how hard my work must be. I thought back to weeping at the bedside with his family and nurse. I thought back to Michael's bony hand reaching for mine on the bed as I walked him through a symptom management plan and his reassurance that he trusted me to keep him comfortable. I recalled sitting outside his room with his father as he cycled through despair, gratitude, and nostalgia while looking through the pictures he kept close to his heart in his suit jacket. My heart was full of awe at the unbelievably precious opportunity to enter someone's life and family at such an extraordinarily raw and sacred time. I was full of gratitude to be able to join that journey as a human being, sharing sadness and honesty and, thankfully, hopefully, being able to bring some small measure of comfort. I responded, as usual, "but it's so rewarding."

Driving from the funeral, I thought about his family returning home after the last acquaintance had left the funeral home, with the distractions of planning a service, choosing a casket, and greeting mourners while sharing anecdotes over. Like returning home from the hospital with your first newborn, their lives had irrevocably changed. New parents must adapt to a new presence, a new being in their life. They must make space for it. Michael's family now had to adapt to the absence of a presence. Like a new mother's first discovery of stray burp cloths on the couch and tiny socks stuck in the recesses of the washing machine, they will be caught off guard by his chapstick tube left behind on the coffee table and his half-read book left beside his bed. Caring for Michael showed me that my strength to be present for and bear witness to these difficult deaths is my humanity and my presence. I understand that I do not feel consumed by the heaviness of the work that I do because I distance myself from it, but because I sit with and bear witness to the human experiences, recognizing that doing so is my greatest gift. Becoming a mother changed my practice in a powerful way. I now recognize that every patient is somebody's baby. Many of the mothers who no longer recognize their children once looked at them with an all-consuming maternal love. I return to Michael's bedside in my mind as a way to dip back into my humanity and a grace that is not accessible in everyday life. There are no medications or procedures that will lessen the pain of loss or fear of death, and we in palliative care have only the feeble tools of medicine at our disposal. Michael's story reminds me that in the end, the greatest tool we may have to offer is love.

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 Shapira, associate Editor for Art of Oncology and a Professor of Medicine at Stanford University. Today we're joined by Dr. Rebecca Kowaloff, Palliative Care Attending at the University of Massachusetts. In this episode, we will be discussing her Art of Oncology article, "A Labor of Love."

At the time of this recording, our guest disclosures will be linked in the transcript.

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

Dr. Rebecca Kowaloff: Thank you. I'm excited to be here.

Dr. Lidia Schapira: Let me start by asking you a little bit about your process for writing. Are you the kind of physician who writes and has always written, or is the process a difficult emotional experience? Do you write for pleasure, or was this a one-time piece for you?

Dr. Rebecca Kowaloff: This is actually a new thing for me, but I think it will become something I do more regularly. I've always enjoyed writing. I was a history major in college. I loved writing papers, but more creative writing is new to me. But since I started my current job and went into full-time palliative care, I've just been struck by some patient stories and found myself sitting on my computer after seeing them, and these stories just poured out.

Dr. Lidia Schapira: And when you talk about patient stories, I imagine those are patients that you've cared for, or are you referring to writings from patients, what we generally call illness narratives?

Dr. Rebecca Kowaloff: No, patients that I've cared for.

Dr. Lidia Schapira: And how do you think that understanding the story of a patient can inform the work that we do and how we teach our trainees?

Dr. Rebecca Kowaloff: That's a good question. I think that we sometimes lose a patient's humanity when we're caring for them and their disease and getting caught up in treatment options. And I think remembering that they have a story, that they are an individual and not like any of the other patients who might have had a similar diagnosis, helps us bring back to giving them the best care, but also, I think, brings us back to why we went into medicine. And that's what I try to pass on to trainees that I work with.

Dr. Lidia Schapira: That's so important. So in a way, it's connecting with or rekindling that sense of vocation, and that has to do with being of service, but also being attentive to the humanity, our own as well as that of patients.

Dr. Rebecca Kowaloff: Exactly.

Dr. Lidia Schapira: Have you recently read any books or stories that you found particularly impactful or that you would want to share with colleagues?

Dr. Rebecca Kowaloff: Yes. As I thought back to some of the books that I've particularly enjoyed recently, I think that that sense of story and the story of maybe the common person or I really like historical fiction, so characters that are in textbooks, that are sort of uni-dimensional, being brought into a more three-dimensional arena, are ones that I'm really drawn to. I really liked City of a Thousand Gates by Rebecca Sacks, which looks at the Palestinian-Israeli conflict through multiple lenses and really challenges readers to see multiple perspectives. And I think that's something that I'm really drawn to in the books that I like. Another book that I really enjoyed was called The Five, and it was a look at, actually the five victims of Jack the Ripper, but looked at their lives and who they were as people. Something that I was embarrassed to say I hadn't really thought of before, but I found it fascinating not just to learn about them, but to really think about, they had their own stories, and instead they were caught up in this larger narrative.

Dr. Lidia Schapira: Let's turn our attention to the essay that you beautifully wrote and said and has a title that I think needs to be unpacked a little bit. So let's just start with your choice of title. It mentions 'labor', and there's a strong theme in the essay of the labor associated with childbirth, but also the labor associated with losing a child. And you bring in your personal experience of motherhood. And then the other important word in the title is 'love'. And that doesn't often appear in a medical narrative. So tell us a little bit about how you came to put these two words together and present them in the title.

Dr. Rebecca Kowaloff: I've always been struck by the way that birth and death mirror each other and that on either end of those is this unknown we come from, wherever we come from, into consciousness, and then we leave into another realm that we always are wondering what's on the other side. So they're both this sort of liminal space between whatever lies beyond and then this life. And then in this particular case, I was really struck by how I was seeing this case, particularly through his mother's eyes, and was able to, I think, really appreciate a level of maternal love that I hadn't before I became a mother myself and what that must have been like for her and feeling it a little bit myself by proxy. And then recognizing that in this particular case, I felt like she had known that this death was coming for a while. The way that pregnancy, you know, that there is a birth coming and then the labor is that separation of the mother and the child. And so I tried to kind of draw that out as well, but I felt like love was what I really felt permeating this case—felt for this patient. Again, sort of that maternal feeling, but also because we were similar in age, a feeling of connection on that level, and that love was really the biggest thing that I could bring to this—that I can't fix death, I can't fix loss, but just being present with love is something I can bring.

Dr. Lidia Schapira: I want to go back to that because you use the word love so organically and yet it's been a word that we've been reluctant to use in medicine. I think that there is no question that a mother feels love for her child, but the idea that a palliative care physician or an oncologist feels love for their patient is something that we don't often talk about and yet you're perfectly comfortable with that. So I want to ask you to tell us a little bit more about that because at least in my generation when we were trained, we were cautioned and perhaps even warned not to speak of love when we talked about what we felt for patients. And as a result, I think the medical literature is full of words like caring, but really the sentiment that we're talking about is love. And you very organically and normally basically say it like that and that you brought love to the bedside and that you felt love. Tell us a little bit about that.

Dr. Rebecca Kowaloff: Yeah, I think you're right. We use words like compassion, empathy, caring because love is such a charged word. But I think if we can think of it as love, then it maybe becomes easier because we've all experienced love, I think, and hopefully felt love. It may be, again, give us that renewed sense of purpose to say that I just have to be a human being who feels love and that is something that comes naturally to human beings when we see others in distress or sorrow or whatever it may be. I think that makes maybe this work more accessible, more fulfilling. And I think it is what we feel and we just are afraid to use the word sometimes.

Dr. Lidia Schapira: In this particular case, Rebecca, you also talked about identifying with a patient in so many different ways. You say, we could have been friends. So you talk about him as a peer, as somebody that you felt some feelings of companionship towards, and then you also talk about him as his mother's baby. And I thought that was really a beautiful and very original way of presenting the complexity of the feelings you had. You write in your essay that you normally don't weep or cry at the bedside, but there was something about this particular bedside situation, and Michael in particular, that led you to weep. Can you share a little bit of what that was like for you?

Dr. Rebecca Kowaloff: Yeah, I think I had been, as I say in the piece, thinking of this as his mother watching her baby die. And that is, of course, an incredibly emotional concept for any mother. And then when he came to terms with it himself, I think it was tears of relief that he was not accepting, but at least he was acknowledging, but then also in terrible sadness that here, indeed it really was happening and that she was watching that happen. I was glad that that came out, not only for him and his family to see that I was there with them in that emotional space, but it just felt very cathartic to let those tears that I'd been letting out in the car actually come out at the bedside but just also to know that that was possible for me to do. And that just felt very connecting to the patient and their family.

Dr. Lidia Schapira: And I imagine it might have even felt freeing for you in the sense that you bring your genuine person to the bedside and that you can allow yourself to connect and express your own emotions without that necessarily distracting them from their sorrow or drawing attention to you or in any way diminishing your expertise in that setting.

Dr. Rebecca Kowaloff: Exactly. In palliative care interactions, I teach my trainees that if the people don't cry that we may not have gotten to the heart of the issue. And so I think tears are a sign that someone is their most naked, vulnerable self and that you know that you're interacting with them without any facade.

Dr. Lidia Schapira: So tell us a little bit about how you, if I can use that word, either calibrate or regulate your emotional response to patients. You get called in to help families in very vulnerable and desperate situations. You use the word sacred. You use the word raw in describing what those situations are like. Tell us a little bit about how you prepare and what it takes to be fully present.

Dr. Rebecca Kowaloff: I think I just walk into each visit knowing that I bring my presence and that that is perhaps what is most required of me, that I have no advice to offer or guidance, but really just being a human being who doesn't look away from suffering is what I'm probably going to bring most to every situation. And that's something that I just know that I can do. And I think that knowing that I can bring that and that I can look at death and illness and I have made it through with patients and that they appreciate that is what keeps me coming back and keeps me able to do that. And as I said at the beginning of the piece, I've always wondered, is it a coldness? Is it a distance? Why is it that I don't weep more often at the bedside? Why is it that I can just keep doing this work and it doesn't wear me down? And I think it's because my perspective on it is that it's so fulfilling and that it is sacred. I describe it as soul-fulfilling work. It's just my soul work. It is almost a transcendent spiritual experience to be able to convene with patients on that level and to be able to bring that level of humanity to the bedside when maybe that is something that they haven't gotten.

Dr. Lidia Schapira: I found the description of Michael's father and Michael's mother particularly compelling and how you handled their very different emotional responses to the inevitable passing of their very young and beloved son. Have you stayed in touch with the family?

Dr. Rebecca Kowaloff: I haven't, and I've actually thought about that and wanted to actually share this piece with them. So I'm still deciding. I think I probably will. I actually did connect with a friend of theirs and I didn't tell her I'd written this piece, but I wanted to give them some space. This death only happened very recently, so I wanted to give them some space to process and I didn't want this to become about me or what I got out of it. I really wanted them to have the space to grieve, but I very much would like to reconnect with them.

Dr. Lidia Schapira: You share a lot about yourself in this essay and I think that's wonderful. And I'm curious to hear how you use these stories and your personal story when you teach your residents or when you interact with oncology fellows since that's sort of the world that most of our readers know.

Dr. Rebecca Kowaloff: I always try to be a person. You look at attendings and they seem like they know exactly what they're doing and they've been doing things forever. And I want my trainees to know what I wish I'd known when I was a trainee, which is everybody at every stage of medicine struggles with feelings of inadequacy, shame, fear, whatever it is, and that those are real and that's part of being a doctor and that having those actually probably makes you a better doctor. So I try to be really vulnerable with my trainees about what I'm going through, how I feel about cases, and then just really stress that what I bring is that humanity and that they can bring that too, and try to remind them to step away a little bit from their sort of medical brain. And that's important, but that what our patients are really going to remember the most, is who we were at their bedside.

Dr. Lidia Schapira: There's an element of authenticity and genuine presence here that I'm picking up through your response to the questions but also in your writing that is, I think, quite exceptional. And that is to really also be able to share and be very open, not only self-aware but share with others that there's a huge amount of emotional labor that's involved in being with people who are so desperately ill. And you downplay your technical skills and give more importance to presence. But I imagine it's a sweet combination of both, am I right?

Dr. Rebecca Kowaloff: It really is. Yeah. I was drawn to medicine for the humanistic aspect, and that is what has kept me here and sustained me. But it is wonderful to have a breadth of skills and knowledge to bring to patients that we can be present, but we can also ameliorate symptoms and give them information to help them make decisions. So that's what I find so much joy in palliative care work because that is exactly what we do. We kind of hit all those aspects of patient care.

Dr. Lidia Schapira: And I wonder if you use stories in your repertoire when you talk to patients or when you teach your students. Do you sit with patients and tell them the story of another patient that you've cared for?

Dr. Rebecca Kowaloff: I actually haven't to this point, other than small snippets of anecdotes, I don't. But it's something that I think could be helpful in the future.

Dr. Lidia Schapira: My last question to you, Rebecca, is what made you not just write the story but decide to publish it? I think there is a big difference between writing for ourselves when we are looking to process an experience and then really exposing our vulnerability and sharing it with colleagues and people that we don't know.

Dr. Rebecca Kowaloff: I think for me, palliative care, there are so many misconceptions that its depressing work, that all we deal with is death. And I call this out in the piece that I spoke to Michael's soccer coach, and he said, it must be such hard work, I forget the exact words. And I thought back to all the things that I felt were really rewarding. And I think a lot of people might look at those aspects and say, that sounds so depressing, and you're dealing with dying young people. So I just really wanted to hopefully convey to the larger oncology community that there is fulfillment and enjoyment and reward and gratification in even the hard work and maybe especially the hard work. And that shying away from it, I think ultimately is self-preserving, but it doesn't lead to the fulfillment that you could feel as a physician and really a healer and that this is really healing work.

Dr. Lidia Schapira: You make the point very clearly in your essay. I think that leaning into that distress and leaning into that sorrow actually fortifies us in a way helps us to get through it. And I would say that it requires some active work and also developing self-compassion, something that palliative care doctors know better than oncologists and we have a lot to learn from you. So thank you for the work that you do. Thank you for sharing your insights with readers of Art of Oncology and JCO. Any final message?

Dr. Rebecca Kowaloff: I just hope that the piece touches people in a way they think about palliative care and in a way that they haven't before, and hope it will inspire people to lean into those difficult patient interactions and derive something that they didn't expect to.

Dr. Lidia Schapira: Well, thank you very much. It's been a lovely conversation.

And for our listeners, 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/podcast.

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Show Notes:

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Guest Bio:

Dr. Rebecca Kowaloff is a Palliative Care Attending at the University of Massachusetts.