"A Life and a Death in Haiku," by J. Russell Hoverman: a brother shares haikus and photos dear to his family around his brother's end-of-life care.

TRANSCRIPT

A Life and a Death in Haiku, by John John Russell Hoverman, MD, PhD (10.1200/JCO.21.02835)

My brother, Jim, was diagnosed at age 73 years with colon cancer metastatic to the liver, lymph nodes, and lungs. He and his wife were avid hikers and after retirement had hoped to visit as many national parks as possible. Big Bend National Park in Texas, along the Rio Grande River bordering Mexico, at over 800,000 acres, is one of the largest and least-visited parks in the country. The park has vast expanses of desert and high mountain islands, with some peaks over 6,000 feet. We had hoped to have Jim visit us in 2020, but both cancer and COVID-19 interfered until this past spring when we were finally able to arrange a trip to the park. It had been a few years since I had last seen Jim at our most recent family wedding. When he arrived in Austin, he appeared gaunt and frail. He had lost his taste, and many foods burned his mouth. He had lost weight and was weaker. He barely felt his feet. He struggled to just get through the day. Even so, he hiked up to a promontory overlooking the Rio Grande one day and into a canyon the next and seemed to get stronger as the week went on (Figs 1 and 2).

While in Big Bend, we talked about how he wanted to be remembered. Neither of our parents left tangible markers of their deaths. There were no gravesites, only scattered ashes in places without names. We discussed having a marker, a plaque, a touchstone, or maybe a bench at a favorite park, a place that could be visited by family and friends. This loss of continuity is likely a result of our culture—urbanization and the fragmentation of families. This is in contrast to The Day of the Dead (Dia de los Muertos) celebrated in Mexico and much of the American Southwest, where families decorate cemeteries and have annual gatherings to remember deceased relatives and friends. We forget, or perhaps never knew, how important this can be.

As an oncologist, I saw the wide variety of ways in which people died. A few years after I finished training, I joined a practice in a small town in Oregon with a large Mennonite community. One of my first patients was a church member with metastatic ovarian cancer that was no longer responsive to treatment. She required near constant attention for pain control, and the nursing facility associated with the Mennonite Church, primarily staffed by fellow church members, was her best option. My patient knew all her caregivers, and they knew her. It was as if she was receiving terminal care for her cancer by her sisters. This may have been the first time I attended the death of a patient outside of a hospital. Given that experience, I became an ardent supporter of hospice organizations, many of which were just starting. I knew that Jim was not far from the end of his life and that he wanted to be able to make his own choices, even to the point of getting it over with. We both also knew the impact of sudden, unforeseen, untimely deaths in our own family. I had hoped that Jim could be comfortable and able to participate with us until the very end. This most likely meant involving hospice care.

By summer, less than a year after his diagnosis, chemotherapy no longer controlled his disease, and there were no treatment options available. His oncologist offered a menu of possible treatments including radionuclide embolization of two liver lesions and radiation treatment of lung lesions. As Jim's discomfort was primarily in the region of his largest liver lesion, he and his wife decided to pursue the liver embolization for pain relief, but while recovering from his chemotherapy, Jim lost more weight and became weaker.

At the time of the scheduled procedure, the interventional radiologist discussed his concern that Jim's

change in status would make the procedure highly risky and could result in hospitalization and death. He

allowed that if Jim wanted to swing for the fences, they could proceed but he did not recommend it. More than anything, Jim wanted to be in control of his faculties, and the risks were too great. He and his family decided to return home and enroll in hospice care.

Jim was an English major in college, writing his senior thesis on the poet Wordsworth and taught high school English for 17 years. Throughout his career, he wrote poetry and was especially fond of the haiku. Haiku is a centuries old Japanese poetry format composed of 17 syllables in three unrhymed lines with the first line of five syllables, seven in the second, and five in the third. The subject is often an observation (usually of nature) or an event that is tied to or elicits an emotion. Over the years, a haiku would come to Jim, often unbidden, stimulated by a perception or an event.

While in Big Bend, we discussed adding a haiku to whatever memorial he considered. Once the decision was made to enroll in hospice care, Jim chose, from his life experiences, 17 haikus to post on social media, one daily beginning August 1. A few are included here:

Day 1: The Waterhole

Like the circumspect

Gazelle, I have waited long

before drinking deep.

Day 2: At Field's Pond

At Field's Pond today

a rude clique of frogs gave me

the silent treatment.

Day 7: Mt. Sugarloaf

On Mount Sugarloaf, we

met a youthful choir of pines

dressed in white robes.

By day 9, Jim was too weak to post his work. Jim's wife continued his mission and reported the responses to him each day.

Day 11: Ripples

From shore a teacher

casts a stone. Endless ripples

roll and roll away.

Day 13: The Chase

Like a leaf that runs

from an October wind, the

cat escapes my son.

Jim died on the morning of day 16, shortly after this haiku was posted.

New Year's Eve

Tonight, New Year's Eve,

is so still and cold, the trees

crack like popping corks.

At the end of life, it may not be clear who is providing the narrative for care. It may be the physician offering treatment choices, another line of therapy, a new drug, a different modality of therapy, palliative care, or hospice care. The patient may never gain control of the narrative. Aggressive treatment may lead to hospitalization and a lonely death in the Intensive Care Unit.

Jim was empowered to take control of the narrative by opting for hospice care and posting his haikus. He no longer posted details to his social network about his doctor visits, daily physical challenges, and symptoms; it was about sharing his life and the wonder he found in it. The changes in responses on his social network were profound as it became less about expressing empathy and more about remembering the person he was. Just as Jim's visit to Big Bend and the surrounding wildness and beauty of the park energized him, Jim's satisfaction with the responses made him more comfortable, looking forward to each day's reaction and, perhaps, making it easier for him to go.

A patient's journey with cancer is a story told by family and friends. The satisfaction with the story depends on how the story ends. The physician's role in the story begins when the cancer is evaluated and a treatment strategy proposed and provided. At a point in the care of everyone with incurable disease, the cancer is no longer the main issue and the patient and family take center stage. When the physician is unable to cure or prolong life, his or her role becomes that of a guide attempting to lead the patient and family to an ending that comforts all. This requires an understanding of the patient's narrative and depends on accurate information about how the narrative will be affected by treatment choices.

The combination of hospice care with the assurance of dying at home surrounded by family coupled with the ability to connect with his extended family and friends through social media was truly transformative for Jim and for me. Jim's control over the narrative and the direction that action gave to the care team made it easier to allow his death. Our role was to comfort and support and be present. There was no regret and no guilt with how things went. I could not have hoped for more.

A few months after Jim's death, his family and friends gathered to celebrate his life. We met in a grove of trees in a protected forested area where he often hiked. The centerpiece of the gathering was a bench marked by a plaque with his name on it. There was also a plaque with his favorite haiku.

Dawn on the Appalachian Trail

Light slips in along

the eastern edge. I am still,

startled by beauty.

Jim's ashes were scatted nearby.

Always the teacher, the ripples roll and roll ….

Dr. Lidia Schapira: Welcome to JCO's Cancer Stories: The Art of Oncology brought to you by ASCO podcasts, which offers a range of educational and scientific content and enriching insight into the world of cancer care. You can find all of the shows, including this one, at podcast.asco.org. I'm your host Lidia Schapira, Associate Editor for Art of Oncology and Professor of Medicine at Stanford.

With me today is Dr. John Russell Hoverman, now retired, formerly responsible for the development of value-based delivery programs for Texas Oncology and US oncology. Dr. Hoverman also has a PhD in philosophy. We'll be discussing his Art of Oncology article, 'A Life and a Death in Haiku'.

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

Russ, welcome to our podcast.

Dr. John Russell Hoverman: Thanks for asking me.

Dr. Lidia Schapira: So let me start by asking a personal question. How did philosophy lead you to medicine and cancer care?

Dr. John Russell Hoverman: I always thought I wanted to be a doctor. I had a family practitioner who was an inspiration. I think from sophomore in high school, I knew I wanted to be a doctor. But I always asked other questions. So when I got to college, I had a chance to broaden my horizons, I guess. And when it came time to choose a major, because I took some elective courses as a freshman that were required, when it became time to choose a major, I chose philosophy. My family doctor said, 'You know, that's great. You should have some other discipline. Some of the humanities is probably as good as anything. And it won't hurt you if you're going to be a physician.' So I majored in philosophy and minored in biology.

Dr. Lidia Schapira: It's interesting. I had a different experience. I, too, wanted to study philosophy, and the advice I received was, well, study medicine first and philosophize later. So I'm so glad that you actually studied philosophy formally. And tell us a little bit about how you have incorporated some of the thought processes and frameworks for approaching important topics that you learned as a philosopher into your medical practice and all of the amazing work that you've done.

Dr. John Russell Hoverman: Medicine is a humanistic enterprise. So you are interested in people or you're interested in what they think. But it's also an evidence-based enterprise. And philosophy is all about evidence, especially logic. That's been one of my favorite topics. I've written about that more than once about clinical trials. And actually, that may be a paper I'll do shortly is about the logic behind the mRNA vaccines. The science is spectacular, but it wouldn't be anything without the logic of clinical trials so that when we look at providing value, which should be an ethical obligation for physicians, logic comes in handy to determine whether a structure of a clinical trial actually gets you the answer that you want. And what you want is to know what is the highest value for your patients and to be able to measure that and be able to talk about it.

And then the other part of that is end of life care, which, again, is an ethical enterprise. And it has to do with getting information and giving the right information to your patients in what you're obligated to give. As you search for that, there's more and more information that probably is needed. So that's enough. And I still love the science. The science is wonderful, but it has to be translated.

Dr. Lidia Schapira: So help me think through how we incorporate storytelling and narrative into your argument that this too has value as we think about our roles as physicians, especially when we're thinking about end of life care.

Dr. John Russell Hoverman: I think you've had the same experience, I think, that we all in our practices have stories. My brother's story is just one of them. And you think about how your view towards having conversations with patients is colored by the patients that you've had and the stories that they told. I had a patient who had lung cancer in the rural area in Oregon and wanted to send them to the medical center. They said, 'No, I lived on a farm all my life. I know exactly what life and death is, and I want to be with my family.' So we've been impressed by the interactions patients have with their families and with their physicians as to how things could end up well.

Dr. Lidia Schapira: In your essay, you used an expression that I found very powerful. And that is that your brother Jim, whose story you tell, ultimately had control of his narrative. Tell us a little bit about how that locus of control is negotiated in the relationship between the patient and the cancer clinicians.

Dr. John Russell Hoverman: Again, there are other stories to tell. So we've had patients who wanted to be in control but didn't know how to do it and actually weren't sure what they wanted. One elderly woman talked to her family practitioner, her family physician about assisted suicide. So she was dying, I think of metastatic colon cancer. She had two daughters, and one was halfway around the world, and she didn't want to bother that daughter. So she wanted to slip off quietly. And when we've talked to her about it, we knew that her daughter would be honored to be there. And in fact, that was the case. So we learn from stories to maybe probe a little bit more than we ordinarily would. If something doesn't seem to be going right, maybe there's something we can address. I think we all have instances when that's happened.

Dr. Lidia Schapira: In your essay, you also talk about the importance of storytelling and the control of narrative as a way of helping those who love the person who's dying and how that can ease the pain of bereavement. And in your particular case, when you tell Jim's story, you say there was no regret, no guilt, which is a beautiful sentiment. As physicians, we often see that there is regret and there is guilt with how families approach the last few weeks of life of a loved one. Can you tell us a little bit more about this, no regret, no guilt concept?

Dr. John Russell Hoverman: We see guilt often when things don't turn out the way families think they should. And probably the thing that we see most often is the patient dies in the hospital, and they're not at home. And what we do see with hospice care is that they don't feel as much guilt. And I think what happened with Jim, maybe taking that to another level, by being proactive about the message. And the question is, not everybody can write haikus. But what else can you do? Can you have somebody give a piece of a story? Or can you publish a photograph? Or what else can you do to mark that life as something that was worthwhile, and then everybody gets on board with that. That becomes more important than pain control or being awake again. I think we're just exploring that. For me, it was a revelation to see that.

Dr. Lidia Schapira: Now, let's turn to your essay. In the final moments of this interview, you bring life's experience as a cancer clinician, as a deep thinker. And you chose to tell the story to your colleagues through publication and JCO. What is the message in your essay for listeners and readers.

Dr. John Russell Hoverman: The message, I think, is the message that I got. To my mind, the story wrote itself. It was there just to record. Then the message to me was that this is how things could be, understanding the patient's, and I'll use that word 'mindset', so that we can tailor his care to that mindset, and in fact allow him to have as much say about how that care is tailored as possible.

Dr. Lidia Schapira: Tell us a little bit about Jim, your brother.

Dr. John Russell Hoverman: Well, he's a middle child. So we had three boys. And of course, you always think that the older one always beats up on the younger ones. Jim started to wrestle when he was in junior high school. That changed our relationship. So it was no longer a power relationship. But when he went to college, he majored in English, and I majored in philosophy. And we both were interested in the same things. Interested in how the world works, how the world got to be where it was, but Jim interrogated nature with poetry and literature, and I interrogated nature with science and philosophy.

And we've had some interesting discussions, but we were not far off from the ultimate picture. But I would talk about something about ethics, and he would have a literature reference and probably would sum up what I would do in five pages in four sentences. So it continued to be that way. We were both always interested in the outside, interested in hiking. As you can tell, I'm interested in taking photographs. So there's always a sense of being in the world that we both had. And Jim did it in his way, and I did my way. But we were never really that different, I think, in how we looked at things.

Dr. Lidia Schapira: If I may, I'd like to ask a personal question. And, of course, you don't have to answer, and that is, how are you doing in your grief over Jim's loss?

Dr. John Russell Hoverman: Well, it was good that it ended the way it was. It was bracing to watch your brother die. I'm not sure that's the best word. But it was clearly emotional. But it helps if it happened the best way it could. And he was in control. It's not something that got away from us. And again, we've talked about sudden deaths and how those are so unsatisfying because you can never really say anything. And it wasn't that, which I know was good for him and his family. So it's not just me; his sons and his wife also appreciated the chance to have Jim towards the end of his life.

Dr. Lidia Schapira: Well, the essay is really moving. It's instructive. It's personal. And on behalf of the readers of JCO, I thank you for sending it to us. It's been a real pleasure chatting with you today, Russ, and I want to express on behalf of all of us, our condolences for your loss, and our admiration for your work. Thank you.

Dr. John Russell Hoverman: Thanks, and I appreciate working with you. I think it's much better than it might have been otherwise.

Dr. Lidia Schapira: Before we conclude this interview, Russ, I wonder if you can read one of your favorite haikus for us.

Dr. John Russell Hoverman: Sure. It's called 'The Hospital Bed', and it relates to a story that Jim's wife told me and I imagined:

Restless and moaning

His wife lies down beside him

He quiets and sleeps

That's it.

Dr. Lidia Schapira: Thank you so much. So until next time, thank you for listening to JCO's Cancer Stories: Art of Oncology. Don't forget to give us a rating or review wherever you listen. Be sure to subscribe so you never miss an episode. JCO's Cancer Stories: The Art of Oncology, is just one of ASCO's many podcasts. You can find all of the shows at podcast.asco.org.

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