Death Cafés
NOTE: This piece was researched and written by a very alive human (John Graham-Pole), not by ai robot. A year
by John Graham-Pole
I’ve been reflecting on words I rarely heard during my fifty-plus years of medical practice. Words I was especially drawn to in later years, when making rounds, when writing chart notes, especially when listening and responding to my patients and their families. These are some of the words I’m thinking of: purpose, healing, art, attention, love, touch. Once I found that using these words could deepen my relations with those I cared for, I would drop them into our conversations. Hard to quantify their effect, but proof by objective measurement isn’t everything. The proof I looked for was greater attention, openness, and trust from my listeners. And it would often free up personal stories I would never hear in a grocery check-out line.
Purpose: In medical school in 1960s London, I was taught my primary purpose was to cure illness and save lives. But to claim that saving every life by curing every illness is our primary purpose just won’t do. I never heard any of my medical schoolteachers point out that we’re all dying with every living breath, that life is aterminal condition. When I set out to care for children with cancer, my patients almost all died, and progress towards curing any of my patients took decades. So suffering was all about me, and I came in time to a more realistic, though far from simple, purpose: to relieve suffering wherever I saw it.
During my pediatric internship in Glasgow in 1972, one of my very first patients was a five-year-old boy with acute leukemia, whom I’ll call Harry. Harry achieved a complete remission within a month of receiving the best chemotherapy available to us at that time. His blood, bone marrow, and spinal fluid showed absolutely no sign that he’d ever been sick. To my totally inexperienced eye, we had achieved a miracle: we had cured Harry. But within a few months came the inevitable relapse: fever, widespread bone pain, uncontrollable nose bleeds, and a bone marrow replete with blast cells.
It fell to me to break the news to Harry’s parents, a forthright Glaswegian couple of around my age. They were at once full of questions: What now? How long? Will he hurt a lot? And then came that question I would learn to expect in all these conversations—the one with no answer: Why did this happen? I was in unknown territory; nothing in my training had prepared me. But their pressing and plucky questions somehow gave me courage. I sat by the little boy’s bed while he slept, and my purpose became clear: stay quiet, let his mom and dad vent their feelings, tell them what to expect, gain their trust that we’d handle this together. Which led to my uncovering a few skills I never knew I had: I could easenot onlyHarry’s physical suffering but also his parents’ emotional distress—their anger, fear, and sadness; I could answertheir hardest questions honestly and with growing confidence; and I could spend as much time with them as possible. None of this did I learn in medical school.
Harry’s parents spent the last two weeks of their little boy’s life close to his bedside, welcoming my presence whenever I could get away. It was the nurses who taught me the right dose and frequency of morphine to keep Harry free of pain while still aware of his parents right there beside him. This brief interlude I came later to think of as healing.
Healing: Healing is a word that shows up rarely in PubMed’s database of 40 million citations of biomedical and life science literature—and then mostly in the Nursing and Philosophy literature. It is quite distinct from curing, even though the two words often get used interchangeably. Curing means eradicating a disease from a body, most often through drugs and surgery; healing goes well beyond arresting bodily illness. It is quite possible to experience the wonderful mystery of healing without being cured of a given illness. It means restoring balance in emotional, mental, and spiritual health. We doctors help our patients heal through our witness and our agency, but we don’t ourselves heal anyone. Because it’s an intransitive verb: only the self can heal the self; no one can do it for you. Benjamin Franklin put it like this: “God does the healing while the doctor takes the fee.”
The word healing comes from holism, or wholeness, meaning that a person’s body, mind, and spirit come to exist as a whole—a whole greater than the sum of its separate parts. The first ethical principle we learn in school is: primum, non nocere—first, do no harm. For caregivers, healing can be offering simply loving attention. I described in a poem doing no more than being present with a 16-year-old girl who knew she was very soon to die. She asked me to stay as close beside her as the intensive care impedimenta would allow. I sat by her for the final 36 hours of her life, leaving only for bathroom breaks. I called the piece “Cell Shed.”
I lean in among the plastic tubes besetting you,
my breath voluntary, yours coerced.
Our cells mingle, each with the other’s:
a spindrift of air‑water‑ice between mouths.
You, going, dying, take my life to rest.
I, living, left, draw in, exhale your seed.
Art: In 1990, I began bringing artists—musicians and poets, actors and painters—into my hospital’s intensive care and isolation units at the University of Florida. I had the strong intuition that these artists could help our patients in their healing, could build creative and trusting relationships, and could draw out the artist in them. In the 35 years since I made that choice—one of the most important of my career—hundreds of artists have found their way onto our hospital wards and clinics. Along with their art supplies, they bring their creative energy, their listening ears, and their loving care.
Making art doesn’t cure cancer or a broken leg, but most patients that the artists visit find they can express their creativity, intelligence, autonomy. Proof of the value of artmaking in this setting has been strictly subjective: I had 1000 patients answer twenty simple questions about how making art of any kind helped them—and received strongly positive results. Impossible to design a double-blind randomized trial to achieve the same answer. I also taught groups of medical students how to break bad news to a patient by having them practice on each other. How quickly to open the door, how quickly to cross the room, how close to sit, what words to choose, and how to phrase them, how long to stay and listen. These are relational or interactive skills that professional actors must learn—and they are essential to good doctoring.
It’s no coincidence we use the word art both to describe creating works of beauty— visual, musical, literary, theatrical—and the “soft skills” of medicine. Both require time, empathy, humour, and touch. A leadingmedical journal, The Lancet,hasdedicated several articles to art and healing through photographs that need no further description.
Attending: It was December 1976, and I was astonished to be back, a brand new professor just eight years after graduating from my med school. In my first week I got a call from the chief of radiation therapy.
“You the new cancer chap? Want you to see a patient of mine. Seventeen-year-old. Been treating him for cancer in his right femur. But it’s spread up and down his spine—and now it’s in his lungs.”
One glance at Brian’s X-rays told the whole story. The young man had a couple of months, tops; chemo could only buy him a brief respite.
“Your new protocols have much to offer?”
“Er, perhaps I could meet the family first?”
“Want the boy there, do you? He’s no idea of the score.”
“Yes, I’d like to bring him in on this.”
I sensed his skepticism as he ushered me into Brian’s private room on the oncology ward, introduced me to his father standing stiffly by the door, and swept out, staff and students in hot pursuit. I pulled up a chair, offered Mom my hand. As she reached to grasp it, Brian twisted towards us, pain in every movement—and fear. I held his eye.
“What’s Dr. Rowland told you, I wonder?
“Hasn’t talked to me.”
I glanced back at his parents. Their faces were frozen, perhaps scared I’d break some unspoken code and use the C-word in front of their son.
“What about you? What have you heard about things?”
“He said Brian needed these special drug treatments. Is that what you do?”
“Right. Other things too. I can help with Brian’s pain. Are they giving him something strong?”
Brian glanced at me once more, shaking his head. He held himself stiffly, as if any movement would agonize.
“Well, I can help with that. Help you sleep, give you some appetite.”
“Can’t eat. Those X-rays make me sick.”
“Mom and Dad, I want to chat with Brian. On his own.”
The boy was holding my look, like that would be just fine. Like no one had told him a dickie bird. His parents headed out fast, perhaps relieved to be away from the growing tension in the room.
“So they haven’t told you much, eh?”
“Nothing. It’s always ‘lump.’ Now it’s ‘lung and back problems.’ Come on, you think I don’t know what’s going on? Like I can’t handle it?”
I sat quietly, wanting to flinch under his raging eyes. But I let his anger run free.
“They all avoid that word. Cancer.”
It was out. The tension in his look eased. Perhaps he was surprised I was still sitting there, showing no sign of interrupting.
“What about these drugs? Chemotherapy, right? Do they work?”
I dropped my eyes to the floor. Christ, give me answers. I looked up, unclenched my hands.
“They may help your pain. But… “
“That’s it? Not going to cure me, right?”
“I don’t think so. And you know what, Brian. It’s your choice. Sure you’re a minor, but it’s your body. And you have a right to decide what happens to it.”
Simone Weil said: Attention is the same thing as prayer2. In this awful situation, prayer was the best thing I had in my medical toolbox.
Love: Expressing love through our thoughts, words, and actions is vital to caregivers. When someone comes to us in need, it triggers an inbuilt urge to help them. In biomedical terms, we experience pulses of dopamine and oxytocin flowing up our mesolimbic pathways. I learned over time to listen to anger, fear, grief, freely expressed, without losing it myself. Anne Lamott writes in “Somehow” that ‘love is this energy exchange of affection, compassion, kindness, warmth, hope.’3Can there be any harmful side effects from offering close attention, slipping a hand into another’s, holding their eye, letting them know you’re not going anywhere?
In 2008, my wife Dorothy Lander and I published an article we titled “Love Medicine for the Dying and their Caregivers.”4At the heart of love medicine are the bodily senses—watching, listening, attending, touching. I wrote about growing close to a 21-year-old woman with advanced cancer who married her high-school boyfriend the weekend before she died. These were her last undaunted words to me: “Dying I don’t mind, doctor—just not please in diapers!” I could offer only a heartfelt hug and a prayer for her peaceful passing. Dorothy described the fashion show she put on with her stepdaughter Susan for Dorothy’s bedbound and soon-to-die husband Patrick. The two women kitted themselves out in each other’s clothes, which proved hilarious because Susan is a slender five feet while Dorothy stands six feet tall. As these two middle-aged models paraded down their makeshift runway—a narrow rug running beside Patrick’s bed—he rewarded them with a flash of delight at this lovingly absurd sight.
Touch: Perhaps the simplest way we can express love is through touch. The Indigenous novelist Louise Erdrich called physical, emotional, and spiritual touch ‘a sacred shamanic art that binds people and cultures together.’ In her novel, “Love Medicine,” Chippewa Lipsha Morrissey, a school dropout living on a North Dakota reservation, speaks of his healing power: “I got the touch… I got secrets in my hands… the medicine flows out of me. The touch.”5 For my first ten years of medical practice, I used my hands solely for diagnosis; only later did I realize that laying on my hands had the potential to help my patients heal. That’s what Lipsha Morrissey was speaking about.
These words that we doctors use so little—purpose, healing, art, attention, love, touch—can unite victim and witness, attender and attendee. The physician-poet Rafael Campo writes in “The Healing Art” about language and healing as ‘an urgent call to action…an irrefutable argument for preserving compassion and nurturing empathy in medical practice.’6. Medical science is never as objective as is sometimes claimed.Every one of us experiences illness as unique, a multifaceted story to be made sense of; it’s never one size fits all.An ill person’s subjective experience deserves at least as much attention as the rigors of biomedical science and technology.
Back to poetry: I tried in the following poem to capture the excruciating and drawn-out experience of a young man’s dying, from both his own and his mother’s experience7.
Waiting
Dominic rests on his air bubble cot,
awaiting life’s flight from its earthly beat.
He has wearied of searching for how to exist,
of the tubes that fuse to the bag and the pump,
these faceless monitors of the clock
that count his mortal minutes out.
We caregivers charter our critical route
between a stark place and a brittle rock,
while his body lays open its faltering stock
in freefalling spin from heart to gut,
disgorging its wherewithal and prop
with which we fumble to hold it up.
His father’s run missing in the wood
to nurse his gun and suckle his guilt,
while his mother stretches her vigil out
not letting her mind embrace it yet,
beholds in his eye the guttering life
that still will not douse its callow light.
For what does he linger? Till this spark
has no more tinder to keep him lit?
Till the organ-dead conspire to draw
his soul to the dark? Or will he wait
till this woman who bends so close above
can finally offer his spirit up?
For me, as a pediatrician for fifty-plus years, this form of self-expression has given me glimpses into my patients’ encounters with illness, and that of their personal caregivers, their parents. For the stories I had to tell, poetry has given me a voice to express myriad moments of intimate connection, and attention.
NOTE: This piece was researched and written by a very alive human (John Graham-Pole), not by ai robot. A year
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