Butler - The art of dying well: a practical guide to a good end of life

More Praise for The Art of Dying Well

In plain English and with plenty of true stories to illustrate her advice, Katy Butler provides a brilliant map for living well through old age and getting from the health system what you want and need, while avoiding what you dont. Armed with this superb book, you can take back control of how you live before you die.

Diane E. Meier, MD, director, Center to Advance Palliative Care

Katy Butler has given us a much-needed GPS for navigating aging and death. The Art of Dying Well is a warm, wise, and straight-forward guide, hugely helpful to anyoneeveryonewho will go through the complex journey to the end of life.

Ellen Goodman, founder, The Conversation Project

I wish every one of my patients would read this bookit is like having a wise friend explaining exactly what you need to know about coping with aging or living with a serious illness. Its not only about dyingits about getting what you need from your medical care, including all the insider stuff your doctors and nurses dont always want to say. We can all learn from Katy Butlerespecially doctorsabout how to talk to each other more clearly and kindly about decisions that matter.

Anthony Back, MD, Medical Oncology and Palliative Medicine, codirector, Cambia Palliative Care Center of Excellence, University of Washington

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TO BRIAN DONOHUE

anam cara

This is a work of nonfiction and its stories are based primarily on interviews with direct participants. There are no composite characters, rejiggered timelines, made up quotes, or invented scenes. When names have been changed, it is disclosed in the notes.

I Worried

I worried a lot. Will the garden grow, will the rivers

flow in the right direction, will the earth turn

as it was taught, and if not how shall

I correct it?

Was I right, was I wrong, will I be forgiven,

can I do better?

Will I ever be able to sing, even the sparrows

can do it and I am, well,

hopeless.

Is my eyesight fading or am I just imagining it,

am I going to get rheumatism,

lockjaw, dementia?

Finally I saw that worrying had come to nothing.

And gave it up. And took my old body

and went out into the morning,

and sang.

MARY OLIVER

To our ancestors, death was no secret. They knew what dying looked like. They knew how to sit at a deathbed. They had customs and books to guide themand a great deal of practice.

Consider, for instance, deaths presence in the lives of my great-great-great-grandparents, Philippa Norman, a household servant, and John Butler, a brush- and bellows-maker. Poor Quakers, they married in Bristol, England, in 1820 and had four children, two of whom died before their second birthdays.

In hopes of starting a new life, John sailed to New York in 1827 on the ship Cosmo ; Philippa and their surviving son and daughter followed the next year. In their rented rooms there, Philippa gave birth to a stillborn son and later sat at Johns bedside as he died of tuberculosis, now preventable with vaccines and treatable with antibiotics.

Widowed at thirty-six, Philippa sailed back to Bristol. There she nursed her beloved daughter Harriet as she, too, died of tuberculosis, in her early twenties. Only one of Philippas five childrenher son Philipwould live long enough to marry and have children of his own. And one of those children, Philips favorite daughter Mary, died in 1869 at the age of thirteen when typhoid fever swept through her Quaker boarding school.

If you look closely at your own family tree, you will probably discover similar stories.

People in developed countries now inhabit a changed world, one in which dying has largely been pushed into the upper reaches of the life span. There it awaits us, often in shapes our ancestors would not recognize. To have postponed it so long often means we meet itas my family didunprepared.

My father enjoyed a vigorous old age until he was seventy-nine. Then one fall morning, he came up from his basement study, put on the kettle, had a devastating stroke, and began a process of slow-motion dying. My mother and I, who would become his caregivers, had little sense of the terrain ahead, and even less familiarity with the bewildering subculture of modern medicine.

As I described in my prior book, Knocking on Heavens Door: The Path to a Better Way of Death, we were ignorant of medicines limits, and the harm it can do, when it approaches an aging human being in the same way as it does the bodies of the young.

Two years later, my father was given a pacemaker to correct his slow heartbeat. This tiny electronic device made him, as he put it, live too long by forcing his heart to outlive his brain. He spent his last six and a half years dependent on my exhausted mother, descending step-by-step into deafness, near-blindness, dementia, and misery. Close to the end, my mother and I embarked on a modern rite of passage: asking his doctors to deactivate a medical technology capable of preventing his death without restoring him to a decent life. His doctors refused.

My father finally died quietly, over the course of five days, in a hospice bed, with his pacemaker still ticking. My mother and I had quite consciously decided not to allow his pneumonia (once called the old mans friend) to be treated with antibiotics. I was fifty-nine then, and had never before sat at a deathbed. Perhaps it was my great good luck to have been shielded for so long. But it was also my burden. During my fathers last days, I sat alone for hours in that clean but generic hospice room, holding his hand, bereft of the habits of the heart, long practiced by my ancestors, that could have made his dying a more bearable and sacred rite of passage.

We live in a time when advanced medicine wards off death far better than it helps us prepare for peaceful ones. We feel the loss. Many of us hunger to restore a sense of ceremony, community, and yes, even beauty, to our final passage. We want more than pain control and a clean bed. We hope to die well.

In the mid-1400s, when the Black Death was still fresh in cultural memory, an unnamed Catholic monk wrote a medieval death manual called Ars Moriendi, or The Art of Dying. Written in Latin and illustrated with woodcuts, it taught the dying, and those who loved them, how to navigate the physical and spiritual trials of the deathbed. One of the Wests first self-help books, it went through sixty-five editions before 1500, and it was translated into all the major languages of Europe.

In each woodcut, a dying man or woman lies in bed, attended by friends, spouses, angels, and sometimes a doctor, servant, or favorite hound. Beneath the bed are demons, urging the gravely ill person to give in to one of five temptations standing in the way of dying in peace. Those were lack of faith, despair, impatience, spiritual pride, and what the monk called avaricenot wanting to say goodbye to the cherished things and people of the world. We no longer call them temptations, but these emotionsfear, remorse, wanting to die quickly, and not wanting to die at allare familiar to most who have sat at a deathbed.