First Cousins Once Removed: Respecting A Loved One's Wishes at the End of Life

Listen to ASCO's Journal of Clinical Oncology essay, "First Cousins Once Removed" by Dr. Matthew Farrell, a radiation oncology resident at UCLA. The essay is followed by an interview with Farrell and host Dr. Lidia Schapira. Farrell paints scenes of how different family dynamics can come into play when advocating for patients.

TRANSCRIPT

Narrator: First Cousin Once Removed, by Matthew J. Farrell, MD, MFA (10.1200/JCO.22.02611)

When I was a kid, long before I wanted to be a doctor or had even heard of oncology, I dreamed of becoming an actor. I grew up in Sacramento—not exactly the beating heart of the film industry—but my mother's mother lived in Santa Monica and we would stay with her for a month every summer. My father would unashamedly sneak me into movie premieres in famous theaters, and he bought us season passes to Universal Studios Hollywood. Despite having a serious job—as a psychologist in the emergency department—he was a kid at heart. Los Angeles was our promised land, and our shepherd was my father's cousin John, my first cousin once removed, who lived in West Hollywood and was a living, breathing actor.

John wasn't famous, not yet. He was in his late 20s, just starting out, doing mostly background work and some commercials while working as a waiter at the original Cheesecake Factory in Beverly Hills. All the staff loved him there, so much so that they would give us free pieces of cheesecake just for being related to him. John was generous, outgoing, expressive, and talented. Success seemed just around the corner.

One challenge for him was his voice. He had a thick Bronx accent, which would have been perfect if he had been auditioning for Raging Bull but which otherwise narrowed his prospects. He hired a voice coach to help him erase his accent. But that didn't mean he was trying to erase his New York roots. He was proud of his upbringing and family, coming from a long line of police officers, burly men with strong jaws and thick arms and outdoor voices who seemed to be the very genesis of their own stereotype. And as his Bronx accent faded, he was teaching it to me. He said he would take me to a baseball game at Yankee Stadium one day, and he imitated the beer hawkers who walked up and down the aisles, calling out to the crowd, "Get your beer here," but pronounced, "Getcha bee-ah hee-ah!"

John was the first person I distinctly remember being in perfect shape. He was a sight to behold—muscular and solid, yet graceful and light on his feet. In addition to being an actor, he was training as a dancer. Coming from generational athletic ineptitude myself, I was enthralled. He taught me how to moonwalk and do bicep curls. I would walk up to my mother and flex my tiny muscles, imagining a day when I would be as strong as John.

One summer, John was much thinner—his face hollowed out, his previously bulky arms as lean as my own. What I only vaguely understood at the time was that he was gay, and he now had AIDS. This was the mid-1990s, and highly active antiretroviral therapy was on the horizon but just out of reach.1,2

His treatments failing him, he became desperate for a cure. He did twice daily coffee enemas, choked down repulsive herbal concoctions, and visited New Age visionary healers. For a long time, he remained optimistic. He was in constant contact with his agent, seeking out auditions even as his strength waned. He wasn't only a waiter at The Cheesecake Factory and he wasn't dying of AIDS; he was an actor who was going to be healthy again soon. Occasionally he would call my dad, buoyant with hope, "The virus is gone. I'm cured."

Of course, he wasn't. My father never tried to talk John out of pursuing alternative therapies, though he considered doing so many times. The frantic search for a reprieve from death can take us many places, and it is not to be pitied. But how do you also protect your loved ones from harmful remedies and predatory scam artists? How do you provide the best treatment when there is no good treatment? In all my years, all 10 of them, I had thought that doctors knew everything, and if you went to them, you would get better. But John wasn't getting better. Together with his doctors, we embraced helplessness.

His CD4 count fell to zero. He developed skin lesions from Kaposi sarcoma. He was repeatedly hospitalized with Pneumocystis pneumonia. His organs began failing. Ultimately, he decided to leave the hospital on hospice. It was only then that he told his parents he was gay and had AIDS. At first, his parents couldn't believe he was gay. They told my father it was a phase, possibly brought on by his living in Los Angeles, a side effect of being an actor and dancer. Later, at his memorial service in New York, they would tell everyone he had died of a rare cancer. My father remembers someone asking John's mother what kind of cancer it was, and she said, "I don't know. It's very rare."

During my winter break from school, my family visited John in his apartment. By that time, he had needed to quit his job at The Cheesecake Factory and stop taking auditions. His friends at the restaurant had thrown him a party and still came by his apartment most days. He lay in bed, drowsy and mildly delirious, too weak to stand. Even in this state, he kept trying to sit up to get us something to eat or drink. "I have cheesecake," he said several times. "Let me get you some cheesecake."

Just a week later, on the day after Christmas, John lost consciousness. His kidneys weren't making urine, and he was uremic. My father urgently updated John's family in New York. His mother, father, and three sisters with their husbands flew in that day and crowded into John's small West Hollywood apartment.

For the first time, they met John's partner, Kevin, and five of their friends, gay men who had taken turns caring for John to make sure he was comfortable and never alone. Kevin was tall, elegant, and gentle. He was as introverted as John was extroverted, and he wouldn't have been caught dead on stage in front of an audience. He ran his own successful small business and had a quiet self possession.

John, though he rarely showed it, was insecure about his slow progress in the acting world, and I think Kevin helped him feel more at ease. As a medical professional and the closest relative on the West Coast, my father had served as the point person for the hospice physician. He reported the latest news: John likely had just hours to live. John's New York family, previously shielded by distance, was caught off guard. And there was an uproar. The five stages of grief multiplied to 25, occurring in no discernible order—undulations of shouting and crying and jostling that rolled through the group like The Wave through a baseball crowd. At first, they wanted to take him off hospice. They looked ready to carry him out the door to the nearest hospital. They said his decline was too sudden. It just wasn't right. There must be something he hadn't tried. For every desperate hope they volleyed, my father sensitively explained what could and could not be done, and, more importantly, he described John's wishes. They gradually realized that saving him was impossible, and not what John needed anymore.

At last, everyone seemed on the same page. Everyone but John. Day by day, he held on in his unconscious state, not crossing that final threshold, as if something were holding him back. John's family became increasingly exhausted, confused, and frustrated. They couldn't eat or sleep.

On day four of John's marathon survival, we called in the hospice nurse. By this time, my grandfather—John's uncle— had also arrived. The nurse gathered everyone together and explained that it was often helpful to talk to your loved one, conscious or not, to say goodbye. People who are dying may feel obligated to cling to life for their family's sake. They may need our permission, even our encouragement, to let go.

And so, one by one, we all entered John's bedroom, knelt beside him, and said what we needed to say. And then, it was my grandfather's turn. By way of introduction, Grandpa Joe, my father's father, was raised in the Bronx by a stern mother and career soldier father. He was a businessman by profession and by religion. He rose in the ranks of multiple companies, eventually becoming the president of Hires Root Beer, a company that expanded during his tenure but was eventually bought by Orange Crush, which in turn crushed Hires Root Beer and made a lifelong enemy of my grandfather. (In my family, we do not drink Orange Crush.) Grandpa Joe never surrendered without a fight.

Accompanied by my father and me, Grandpa Joe marched up to John's bed and bent down beside him.

"You can fight this!" he said, shaking his fist. "I've had illnesses all my life and I came out on the other side. Did I let prostate cancer beat me? Hell no!"

"Wait, Dad," my father said. "Wrong plan."

"What?" Grandpa Joe said.

"We had a whole conversation about this."

"When?"

"Just now, with the hospice nurse. We need to let go, allow John to pass on."

"That's not what I heard."

"That's becoming clear to me."

My father reviewed the plan, slowly, but no matter how well you explain yourself, sometimes people hear only what they're capable of hearing. Grandpa Joe couldn't surrender. He argued and fumed, eventually stormed out. So my father said goodbye for him.

That night, John died.

I doubt the timing of his death was related to our collective send-off, but it sure felt like it was, and that will do. The next day, everyone assembled in John's apartment for the last time to decide what to do with his body. The family wanted to take him back to New York for a traditional burial.

But there had been talk that John's Los Angeles friends were planning to have him cremated. As if about to face off, two groups formed in opposing semicircles of folding chairs—the family seated on one side, and Kevin and his friends on the other. John's father, Hank, seemed ready to fight, his whole family there to back him up. Grandpa Joe kept saying we needed to put John on a plane and get him out of there.

In medical school, we learn that not all family members are created equal; when patients can't make decisions for themselves and there is no living will, you turn to the spouse first, adult children next, then parents, and so on. There is even a mnemonic (one of the clunkiest in existence) to help you remember the ranking: the Spouse ChiPS in For the patient—indicating Spouse, Child, Parent, Sibling, and Friend, in that order. Following this rule, Kevin would have come last. He and John weren't married, and gay marriage wasn't even legal then. My father, a child of the sixties, wasn't a fan of hierarchies. As a psychologist in the emergency department, he had always strived to foster a unanimous meeting of the minds and hearts. To make things a little easier on people like him, he says it is never too early to tell anyone and everyone what you want in life and in death. Then, importantly, write it down, in an advance directive, on a POLST form, and maybe even on a few napkins scattered throughout the house. Hank fired the opening salvo: he told Kevin that they were going to take John back to New York. Their community expected a traditional burial, needed it.

Kevin listened quietly until Hank finished. With a softspoken grace, he looked Hank in the eyes and told him he would never do anything against the family's wishes. If they wanted a burial in New York, he would help carry the casket. But, he said, John had told him many times that he wanted to be cremated and have his ashes scattered on Maui, at a certain overlook they had visited together.

There was a long silence. Hank looked around, at his wife and family, at Grandpa Joe, all of whom seemed to be waiting for him to deliver their counterpunch. But then he lowered his head. He started crying into his hands.

A minute passed, and then he sat upright, sniffed, and nodded. In a clear, firm voice, he said, "That's it. That's what I want for John. I want you to take him to Maui." In perhaps the only true miracle I have ever personally witnessed, Kevin and his friends lifted from their chairs in perfect unison, crossed the small living room, and flooded the family with hugs. Everybody cried, and the many headed beast of our congregation dissolved into a sea of affection. Kevin did go to Maui to scatter John's ashes. Afterward, John's family celebrated his life with a memorial service at their church in New York. My father gave the eulogy and Kevin sat with the family. All of this was a long time ago now. John would be in his fifties. He would have mastered a Hollywood accent. His big break would have come. He would have taken me to the Oscars.

I moved away from California to go to graduate school and medical school, but eventually, I found my way back to Los Angeles. I still go to iconic theaters. I finally bought season passes to Universal Studios Hollywood. And like everyone else in this town, I'm trying to write a screenplay. But I'm not an actor. I'm not remotely famous. I'm a radiation oncology resident.

I've learned a few things since the 1990s, and so has the rest of the world. It still devastates me that John just missed the major advances in care. I think about him regularly during my training. In oncology, life-prolonging breakthroughs are frequent, which inevitably means that some people will be among the last to miss out. Some people, and their families, will look to me for hope when there is none. In their entreaties, I see shades of my own loved ones—my father's diplomacy, Grandpa Joe's doggedness, Kevin's advocacy, Hank's compromise. Most of all, I see glimmers— brief resurrections—of John, whose disease stripped away so much, but left in clear relief his kindness and humanity.

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. Lydia Schapira, Associate Editor for Art of Oncology and a professor of medicine at Stanford University. Today we're joined by Dr. Matthew Farrell, a radiation oncology resident at UCLA. In this episode, we will be discussing his Art of Oncology article 'First Cousin Once Removed'.

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

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

Dr. Matthew Farrell: Thank you so much for having me. Great to be here.

Dr. Lidia Schapira: It's our pleasure. I'd like to start this conversation just asking a little bit about your reading preferences. Are there any books that are on your figurative night table right now that you'd like to recommend to our listeners?

Dr. Matthew Farrell: Yeah, a lot of times that night table is very figurative in that I am listening to audiobooks. Living in LA, I spend a lot of time in the car, so I listen to a lot of books. But I do like to physically read certain books, and one of those recently was George Saunders' new collection of short stories, Liberation Day. He is a wonderfully creative, funny, warm-hearted writer of short stories, which is one of my favorite forms. It's what I've written the most and what I studied the most back when I was in school, taking classes, undergraduate and graduate in creative writing.

Dr. Lidia Schapira: Tell us a little bit about your passion for writing and how you have integrated that into your professional life now as a medical oncologist?

Dr. Matthew Farrell: Yeah, I studied writing and was interested in writing before I transitioned to medicine. So, I minored in creative writing in college, and then I went to graduate school to get a Master of Fine Arts in creative writing and fiction writing. And it was partially that process that eventually led me into medicine. I realized that a lot of what I was writing about actually had to do with medicine. And as I was rereading some of my own work, I was drawn to stories of illness and family and recovery and processing grief, and I decided that those stories were really compelling to me and decided to transition to medicine. It was also helpful that my wife - girlfriend at the time - was applying to med school, so I had that idea in my head, and she was inspiring to me. So, I transitioned to medicine.I love to keep writing. I still love writing, and a lot of what drew me into oncology specifically is the brilliant, captivating, moving stories of interacting with people. And so it's one of my outlets and things I do for fun, as well as a way of helping me process what I see.

Dr. Lidia Schapira: Before we talk about this story, let's talk a little bit about your ideas of the language that we use, because I know you've written about that as well. So, as a writer and as a person who loves to reflect and find story, tell us a little bit about how you negotiate the words you use and the language you hear your colleagues and your peers using with patients.

Dr. Matthew Farrell: Coming from a writing background, where in workshop, we would go through our own stories, my writing professors would go through each word with a fine-toothed comb and sometimes in very elaborately, critical ways would say that this is a terrible word, this destroys the whole sentence, the whole story. And it just had me paying attention to the written language as well as the spoken language. And one of my creative writing mentors, my thesis advisor Ahud, he had leukemia and eventually died of leukemia, and he talked a lot about the experience of having cancer and the way that cancer is often talked about in this kind of heroic way in which the treatments are weapons and cancer is waged on a battlefield and people with cancer are heroes of that and how that can be very empowering in certain circumstances and also very draining in others.

Dr. Lidia Schapira: Those are such fine points, and it's obvious that you're very careful about the language that you use in your writing. So, let's talk a little bit about this piece that we've just published in JCO that is a little different than most of the pieces because it describes scenes. Tell us about how you put these scenes together, what it meant to you, and what the overarching message is for your readers.

Dr. Matthew Farrell: Yeah, I think I'm used to writing scenes. I'm used to writing both fiction and nonfiction stories like this, and when I was approaching this, I just wanted to try to capture the experiences as I had understood them. And I also talked a lot with my family about them to try to remember what it was like and how our thoughts have changed on it over time. And so I tried to capture who John was and my memories of him as best as I could. I think that the best way to get across people's personalities, their vibrancy, is by writing scenes about them, because I can never describe someone as well as they can illustrate themselves through their own actions and dialogue.

Dr. Lidia Schapira: So John was this figure that you had admired as a child and was so interesting, and then you bring us to a very debilitated John and some scenes in his apartment. Tell us a little bit about the time, the context, and the illness.

Dr. Matthew Farrell: Sure. This was the mid-1990s, and there were a lot of changes going on in the care of HIV and AIDS, a lot of rapid changes in our understanding of the illness as well as the treatments available for it. And it was really hard and devastating that John was able to see a lot of promising treatments on the horizon, but they weren't readily available to him when he needed them. And so it's tragic to think about, if all of this had happened just a year later with the rollout of HAART, or Highly Active Antiretroviral Therapy, his story might have been completely different, and he could easily still be here today, but he just missed it. And so that was very hard to see him go from being just about as vibrant and healthy and active a person as can be imagined, someone who I just envied and admired in terms of his physical ability; for him, if he could go from where he was to where he ended up, it was just completely devastating.

Dr. Lidia Schapira: And then there was the stigma of the disease and the scene that you so beautifully share in your piece about different family members coming in to talk with him and say their goodbyes. And I think it was your grandfather who just couldn't let go of the 'you must fight, you're going to get well' narrative. And I think your father, who is a psychologist, was sort of saying, "Hey, wait, we're having the wrong conversation here. This isn't what we agreed to." Can you tell us a little bit about what that felt like to you, observing it, perhaps your younger self and how you've thought about that now as a professional who's probably having these difficult conversations with patients?

Dr. Lidia Schapira: This was my first experience with these sorts of conversations, and I think about them a lot now, is I do have these talks with people, and I just can picture my Grandpa Joe charging in there and saying, "You can fight this," completely out of tune with what the goal was. And he and my father are similar in some ways, but very different in others. My father is very relaxed, easy-going. He could come to a cordial agreement with a grizzly bear, and my grandfather was that grizzly bear in some respects, and he was stubborn and not always the best listener. But what was striking about it to me is that I know that my grandfather's actions in that moment, even though they weren't in line with what we were trying to do or what my father and the hospice folks were trying to have us do, they still came out of love and out of devotion to John. Grandpa Joe, how he expressed his love for his family was through fighting for them, and so he was doing that for John in the only way that he knew.

And so when I am involved in conversations toward the end of life with goals of care now and I see situations in which people don't always reach the same page or come to the same understanding, I'm reminded of the fact that that can be surprising and frustrating, but it's okay because people process grief in their own ways and express love in their own ways.

Dr. Lidia Schapira: I can just imagine you're thinking about that when you're in a room and you're sort of casting people, "Oh, this is a Grandpa Joe. He means well, he loves a lot, but we just need to help him to understand what's happening." And there's another character in your story that I want you to talk a little bit about, and that's Kevin, the loving partner and caregiver, who's first sort of marginalized by the large group descending upon them and claiming John. And then there's a scene where there's peace between all factions. Tell us a little bit about how that felt to you, witnessing it as a child and how you thought about it in the years that came later.

Dr. Matthew Farrell: Yeah, I was still very young at the time, but these scenes completely seared themselves into my memory. And the piece that ended up coming out of this scene was due to Kevin and Kevin alone and his love for John, which he communicated so well, as well as the knowledge he had of John's wishes that other people didn't have. That is what allowed people to come together and to begin healing. And it has reminded me that it is never too early to share your wishes with people you love who can then be advocates for you when you can no longer advocate for yourself.

I tend to think about it this way: when you communicate your wishes to other people, you are allowing yourself to get the type of care you want and not get the type of care that you don't want. But you're also giving a gift to your loved ones because by Kevin communicating what John wanted to our family, to John's father, it gave everyone the confidence that they knew that they were giving John what he wanted. And that provided a lot of comfort. So if you share that with someone and then they have certainty that they're helping you achieve what you would want. And that's the gift that Kevin gave to our family that none of us will ever forget.

Dr. Lidia Schapira: I think the use of the word 'gift' is wonderful, totally appreciated. And I understand you're very deliberate with your choice of words, so I appreciate that. I think that we don't quite know how to value sometimes some of the gifts that our patients give us in the exam room, at the bedside, in terms of how they help us, help them by being clear, by expressing their gratitude often. And you bring that out so beautifully.

So as a gifted and trained writer who's now embarking on a career in radiation oncology, how are you going to continue to combine these talents? Are you writing a play or what are your plans?

Dr. Matthew Farrell: I still just write a lot in whatever comes to me. And I do write a lot about medicine and also a lot not about medicine. And it's fun for me. I did study writing formally, but I still have tons to learn all the time and I'm still learning from other people. And I try to be as open as I can to feedback in my own writing. I am, among other things, trying to write a screenplay, like many people in LA. I also worked briefly in the film industry for a summer at a film management company, and there was this joke about how everyone in LA is writing a screenplay, but almost no one has written a screenplay. And so I'm unfortunately still in the former category, but working on it.

Dr. Lidia Schapira: Is there something you've learned working in the film industry that you want to share with your colleagues working in oncology that could help us be better doctors?

Dr. Matthew Farrell: One is just, I think, movies, shows, writing, a lot of it is focused on people and humanity and the human condition. And I find those stories very moving. And those sorts of stories are also very present and central in medicine. I think that obviously, by getting to know people, you can help them achieve what they want. I know that, again, this whole story was my first encounter with the limitations of medicine and when there aren't very many treatment options available to help people therapeutically. But still, there were many good outcomes for us to work toward in this situation, and in oncology, too. Whether that's helping to provide understanding, helping people come together, helping provide comfort. I know hospice and palliative care was incredibly helpful to John, and that's one of the things that I like about radiation oncology, among many other things, is its role in palliative care, and palliation in terms of reducing pain, reducing bleeding, reducing suffering, enabling functional gain and quality of life. And yeah, I think that the stories that I encountered in movies, which I got a great appreciation for, among other things from John, and the stories that I read about in my study and writing, I still am learning and experiencing those stories in medicine. And it's been each kind of phase that I was in have been incredibly moving to me and have helped me grow as a person.

Dr. Lidia Schapira: So before we end, I have to ask you this question. Do you have a favorite illness memoir or story that has been published or has been used to inform a play?

Dr. Matthew Farrell: One of the writers that I've studied the most who wrote about medicine as well as illness was Anton Chekhov. I took a whole course on him when I was in graduate school and he was a physician, one of the great physician writers of all time. And he wrote about, in contrast to what a lot of other writers were writing about at the time, he wrote about doctors, people, peasants, everyday humanity in really moving ways. And he just has so many stories about illness and pain and loss that are all worth reading.

Dr. Lidia Schapira: Well, thank you. It's been a lovely conversation. We enjoyed reading your story and learning about the family. Thank you for sharing that with us.

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's Shows at asco.org/podcasts.

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Guest Bio:

Dr. Matthew Farrell is a radiation oncology resident at UCLA.