Children and Death

My mom died of cancer when I was 12, which lit the spark for my 40-year career as a children’s oncologist. The culture in 1950s’ Britain was to avoid discussing death, especially around children. I wasn’t told of her passing until three days later, on a brief excursion home from my boarding school. Twenty-five years later, I immigrated to America and by chance was introduced to Quakers in Columbus, Ohio. It was a troubling time in my life. I had ended my marriage and was struggling with the stresses of culture shock and long-distance parenting. But I knew I’d found an instant spiritual home in that worshipful silence and its encouragement to listen prayerfully for the still, small voice. Something about being received by loving Friends and listened to without judgment let me finally start to shed the cumulative grief I had suppressed since early adolescence.

I’m often asked how I could spend my working life around seriously ill children, often close to death, and remain fulfilled. I’ve come to see that such work gives back at least as much as I bring to it: in intimate, loving relationships with these young people, families, and coworkers. The artificial barriers we erect fall away.

Caring for these children came to be a profound source of comfort. They inspired me not only through their courage and resilience, but also by their seeming acceptance of the hand fate dealt them. Though some would recover and lead healthy lives, many would not. It wasn’t in my job description to take time at the end of the day to sit on their beds and learn about their lives, and share something of my own. It was at the bedside of these children and families that I had the chance to touch the core of the doctor–patient relationship. Part of me certainly felt a sense of failure that I couldn’t always offer effective treatment. But in the face of a five-year-old’s incurable cancer, I also realized how my presence at the end served a purpose. I’d moved from busy fixer to silent witness, from objective professional to listening companion.

Becoming a Quaker taught me belief in “spirit medicine.” I’m happy to say most medical schools now have coursework on dying and on spirituality in medicine, but I learned almost everything I know from my patients—by paying good attention and finding out what worked. And thank heaven for humor: it can sometimes make the unbearable bearable. My friend Patch Adams says, “Show me the evidence that solemnity ever cured anything!” And to paraphrase G.K. Chesterton, children like angels can fly, because they take themselves lightly.

My Quaker beliefs made me aware how vital it is to bring body, mind, and spirit to work each day and, since there is that of God in everyone, to be ready to find that still, small space not just in every person but in every situation. Whenever I could remember to bring a small part of the meditative silence of Quaker worship to the bedside, it could come to feel more like communion than conversation. This was the one thing that let me make a true connection. Children are often more in touch with their spiritual selves than grown-ups, perhaps especially so when confronting a life-endangering illness.

Soon after I became an attending physician in a university hospital, a 16-year-old boy with advanced bone cancer (I’ll call him “Brian”) was referred to me by a radiation oncologist. When I first went into his hospital room, he was stretched out on a gurney in obvious pain, his parents on either side. It wasn’t until I came closer and our eyes met that I saw abruptly that this whole scenario was an uncharted sea for me. I’d never had to tell a patient, let alone an adolescent, that I had little to offer save comfort. I’d certainly never uttered that spectral D word. In all the conversations I’d been present at between senior doctors and patients, I’d never seen true candor shown. None of my teachers had even talked privately about how such dialogues should go; it wasn’t in the teaching curriculum.

So here I was, and here the buck stopped. I couldn’t duck the truth and be true to myself. I sensed the tension in the room, but Brian was holding my look, like it was high time someone talked to him about what was going on. I had a strong intuition to talk to Brian directly, and not wait till I could talk about him behind his back with his parents. I pulled my chair up close to his side, put a hand on his forearm, and asked about his symptoms, whether he was getting enough pain meds (it didn’t look like it), and how his treatments had been. He was hard to draw out until I asked about how he liked to spend his time. He loosened up, mentioned friends who came around, managed a wry grin about missing so much school. After a bit, I brought his parents in on the conversation, asking them what the other doctor had told them. They were awkward talking freely in front of Brian, but when they saw I wasn’t in a rush to leave and was encouraging them to open up a little, things began to flow. And that dreaded C word—cancer—came up for what was surely the first time among the three of them.

For my part, I had another, happier epiphany: listening largely in silence was a whole lot easier than filling the air with words. It gave me the chance to sense not just their understanding but the emotional temperature among them—and gave me time to frame my own approach. I started talking about what it really meant for treatments to stop working. I told them about chemotherapy, what they could reasonably expect and at what expense in terms of side effects. I let each bit sink in, while giving myself time to breathe and take in their response. I told them they must weigh things among themselves and not rush their decision—and that I’d be happy to look after Brian, help with his pain and other symptoms, whether or not he chose to get the chemo. They didn’t ask about the future, and no one used the D word, but its presence was palpable.

I looked after Brian throughout the next six weeks until his death. He didn’t speak freely in his parents’ presence, but we found opportunities to talk privately and frankly about what to expect as his time approached. What I learned from my teenaged mentor was that he didn’t fear death, but did worry about how desperately hard it would be for his parents. He seemed to accept that his short life had meaning and had served some purpose. Raised in a high Anglican religious tradition, he believed quite simply that there was a heaven awaiting him. He talked less and less toward the end, so I allowed us both to take comfort from the growing quiet of his private room. I told him about my Quaker form of worship, and had the strong sense he understood that my sitting with him silently was a prayerful act.

After his death, I was talking to another pediatric oncologist about my conversations with Brian, and she told me she felt it better to “tell all the truth but tell it slant,” rather than come right out and tell a young person that they were going to die.

Later in my career, I became the medical director of a children’s hospice, giving me many opportunities to visit children with incurable and life-limiting illnesses in their homes. I was usually able to be at the bedside when a child died. I became very close to a four-year-old girl, Marie, whose treatments were no longer working. When she came home for the last time, Marie made it clear she didn’t want to sleep in her bedroom anymore. Her mom told me she’d been frightened of something—perhaps some presence—in there, though her daughter wasn’t able to articulate what bothered her. Marie was insistent about wanting to have her family close at hand at all times, so they made up a comfy mattress-bed on the living room floor, and her parents took turns sleeping beside her. Then on the evening before her death, she suddenly announced to Mommy that she wanted to go back into her bedroom “to play with my friends.” Within minutes of being tucked in her own bed for the first time in several weeks, she closed her eyes and slipped away. We were left to ponder the somehow comforting mystery of who those friends of hers might be.

I wrote the following requiem for Marie, and for other children I have known and lost.

Flowers and Soldiers

An ill-timed final frost felled my March azalea regiments;
a happening no more rational than the child’s death.
Last night they’d paraded, stems erect, my guard of rose and crimson,
shedding their wind-jarred petal-deck to mark my frontier posts.

Like this chosen child they’d shimmered shortly in an early sun.
Now my nursery box brims with their brave residue.
Their soldier paint has run to rust in the crevices of cedar chip,
they who left without notice, unwilling that age should wrinkle them.

How to talk about death and dying to very ill people and their families is only now finding a place in medical school curricula. Many students still get little training in how to break bad news. The paraphernalia of medical care can keep people alive almost indefinitely, even when we feel we are acting against our conscience. To break bad news “well” requires a capacity for closeness. Such a connection between doctor and patient must come not from our technical training but from our hearts—heart in its ancient sense, as the place where intellect and emotion and spirit converge in the human self. This in turn asks the gift of our presence, the gift of our time. The word servant comes from the Greek, θεραπς (theraps), from which we get therapist. But servant also means attendant, and nowadays that label gets attached to us doctors—the “attending” physician. To my mind, the best attendings are those who can bring to their work what the Tibetan Buddhists call compassionate objectivity, especially in the care of dying patients.

At the time of my retirement, I took the notion to write a letter to my mother, who by then had been dead for 50 years. I had recently taken to writing occasional longhand letters, especially to my sisters, as a small protest against the impersonality of email correspondence. I had no expectation that she might “get” my letter in some non-earthly delivery, but I’d discovered that writing letters to our beloved dead is an ancient epistolary art form. It features in both C.S. Lewis’s A Grief Observed and in Elisabeth Kübler-Ross’s The Wheel of Life. There are surviving fragments of such letters written on papyrus, pottery bowls, and linen dating from Egypt’s Old Kingdom (2700–2200 B.C.E.). The word “mourning” derives from the Indo-Germanic for remembering, that Scott Becker and Roger Knudson described in 2003 as “moving into the mythopoetic space in which the living and the dead coexist.”

In the heyday of letter writing, letters must have felt like direct oral communication, a continued conversation between two people physically distant from each other. They would have arrived on your doorstep with the expectation of a reply, so perhaps I shouldn’t have been surprised to receive a prompt one from Mom. In October 2007, three weeks after writing my letter, my sister Elizabeth’s husband died after a long illness. Back at her house after the funeral, Elizabeth produced a letter with a British stamp on the envelope, and the date and place of mailing clearly visible:  Weston-super-Mare (our childhood home in England), December 31, 1954. Ten days before our mother died.

“John, I was going through several boxes that we’d left undisturbed for years,” Elizabeth told me, “and I came across this unopened letter from 1954. Isn’t it astonishing? It even talks about her wanting you to become a doctor.”

The letter read in part:

My darling Elizabeth, Mary, Jane and John, my best beloveds, I shall not be far away from you, always watching your proud achievements. . . . John, I hope you set your goal early on and go for it. I think you will choose medicine . . . remember the two principles I instilled in you—Faith and Fortitude.

God Bless you, Mummy

I told my sister that I didn’t remember our mother ever bringing the idea of a medical career up to me: “And to think that’s what she wanted for me all along. The really astonishing thing, though, is that I wrote a letter to her less than a month ago, telling her all about what I ended up doing with my life.”

I think the word “afterlife” is something of a misnomer. It seems to lend credence to the idea espoused by many religions that we are still living in some quasi-mortal sense after we die. The term “after-death” seems simpler and has no such connotations. Believing every one of us has that of God within leads me to think that is what does persist after our deaths. But does that something continue to have some kind of after-death connection to our best beloveds, or even to others we’ve known on this earth? We’ll just have to wait and see.