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for a lot of grief among the ranks of the survivors.

That’s why I’ve started notic- ing ways in which people die, how what they say and do can be a source of comfort, humor, and collective acceptance. Take, for example, my friend Herbie, who first held me in his arms when I was a day old and remained an important part of my life for the next 65 years. I called his hospice room a few days before his death to tell him how much I loved him. “I’m watching Rachel Maddow,” he said. He wouldn’t let anyone interrupt him while he listened tothetelevisedhearingsoverBrett Kavanaugh’s Supreme Court nom- ination, but in between he did find time to instruct his family on the wording of his obituary. “They better not use the phrase ‘passed away,’” he growled. “They should say ‘died’!” We all under- stood, because Herbie hated eu- phemisms, and especially those intimating that there was an afterlife.

I’ve seen this sort of thing again and again: people die as they’ve lived. On one of the days when my father lay dying from a stroke that garbled his speech, he wanted urgently to tell us some- thing. We crowded around, try- ing to make out his words. Was it a family secret? A declaration of love? Was there a document we didn’t know about hidden in some cubbyhole? Finally, we managed to encode his message by repeat- ing the alphabet, watching him nod each time we got to the right letter. “Have you found a house yet?” we spelled out. That was it? That’s what we’d been working so hard to decipher — just ordi- nary conversation? My sister and her husband had been house hunting in the days before my

dad’s stroke. How was the search going, he wanted to know. I real- ized that he’d always handled a crisis that way; when people around him were arguing or up- set, he rarely let himself be drawn into the fray. Instead, he’d think of ways to steer the conversation in another direction. On his deathbed, he did what he had always done.

How can the dying be so habitually themselves, expressing mundane thoughts? Shouldn’t death be a time of truth telling and atonement, of reconciliation and expressions of love? In fact, yes,deathmightofferanopportu- nity for all these things, but may- be more reliably, it allows a space for life to go on just as it was.

Many families laugh, sing, and tell stories at the bedside of a dy- ing relative. Many find it oppres- sive to dwell strictly on meaning making, intense emotions, and life review. And that’s probably even more true for dying people themselves. The mundane may be the greatest comfort there is, a re- minder that life simply goes on.

In this light, we can learn from patients with a terminal ill- ness who don’t want to discuss their prognosis. It’s as though the death clock starts ticking at that moment of discussion: suddenly, life as the patient knows it is over. Though the fear of irrevo- cability is justified, it’s also not entirely valid. Life may never again be the same, but in many ways it remains deliciously famil- iar. No wonder patients with a life-threatening illness exhibit what seems to be contradictory behavior: they will buy a house in the country while writing let- ters of farewell; they will put their papers in order while pur- suing experimental cures.

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This observation has led some palliative care experts to formu- late what they call a “dual frame- work.” Patients might not want to talk about dying, and many cling to the hope that they will somehow survive the odds. At the same time, they can’t com- pletely ignore their condition. They may swing wildly between hope and despair. The balance changes over time, though, as the illness progresses: “As patients develop a greater awareness of the likely outcome of the illness, they cope less by swinging back and forth between optimistic hopes and realism and more by holding these ideas simultaneously.”1

Could it be that the everyday ordinariness I’ve seen in Herbie, my father, and so many others simply ref lects the habit of living until living is no longer an op- tion? Even if the dying person has reached the point at which she completely accepts the inevi- table, she still dwells in the here and now. She is still alive.

When I was in medical train- ing, I was told to help patients strive for a “good death.” Deaths were “good” when patients re- tained a sense of control over dying, were free from pain, and had a sense of life completion. I never heard anyone talk about “ordinary death” — understand- ably, since what death is ordi- nary? No death is just ordinary. But maybe it’s helpful, maybe it’s especially comforting, when death is ordinary too, in the sense that we can continue to find room for our everyday selves until we die.

My uncle died not long ago. He lived for 3 weeks in hospice — plenty of time for him to ex- press joy and gratitude to those he loved. He had little pain, but on the occasions when he was

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The Comfort of the Ordinary

given morphine, he’d exuberantly launch into recollections of the past. He even revealed some con- ciliatory thoughts about our fam- ily’s complicated history that he’d not spoken of before. It was a good death.

It was also a death infused with everyday life. My cousins sent me a video. In it, my uncle was lying on his deathbed, his hands folded across his chest. His mouth hung open; his nose had that sharp prominence so often seen in the dying. “Green- sleeves” played quietly in the background. Suddenly, he un- clasped his hands and plucked at the bedclothes with his right thumb and first fingers. “Pizzi-

cato,” he announced instructively.

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The utterance contained so much — it spoke not only of my uncle’s love of music, but of his willing- ness even in extremis to engage without sentimentality, and may- be as well of his past as a school- teacher, always ready to call out a salient fact.

What I’ve extracted from these stories is that if we’re lucky, we’ll continue to live as we always did until the very end. We’ll be al- lowed to seek refuge in the ordi- nary, thus building a bridge be- tween the lived life of our loved ones and the future of those who must carry on. In the end, there may be no better bridge than the poet Jane Kenyon’s dying word: “OK.” Perhaps Kenyon was accept- ing death, or comforting her grief-

stricken husband, the poet Don- ald Hall. But as Hall recorded it in his poem “Last Days,” it seemed merely a response to his ordinary comment, “I’ll put these letters in the box.” So perhaps, after all, “OK” was just “OK.” And some- times OK is the best affirmation we can pluck from the wreckage of death.

Disclosure forms provided by the author are available at NEJM.org.

From the Department of Family Medicine, Georgetown University Medical Center, Washington, DC.

1. Jacobsen J, Brenner K, Greer JA, et al. When a patient is reluctant to talk about it: a dual framework to focus on living well and tolerate the possibility of dying. J Palliat Med 2018;21:322-7.

DOI: 10.1056/NEJMp1905057

Copyright © 2019 Massachusetts Medical Society.

The Comfort of the Ordinary

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The New England Journal of Medicine
Downloaded from nejm.org by T SUDHAKAR BHAT on August 21, 2019. For personal use only. No other uses without permission. Copyright © 2019 Massachusetts Medical Society. All rights reserved.

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