Katy Butler - The Art of Dying Well: A Practical Guide to a Good End of Life

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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

ALSO BY KATY BUTLER

Knocking on Heavens Door

SCRIBNER

An Imprint of Simon & Schuster, Inc.

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This publication contains the opinions and ideas of its author. It is intended to provide helpful and informative material on the subjects addressed in the publication. It is sold with the understanding that the author and publisher are not engaged in rendering medical, health, or any other kind of personal professional services in the book. The reader should consult his or her medical, health, or other competent professional before adopting any of the suggestions in this book or drawing inferences from it. The author and publisher specifically disclaim all responsibility for any liability, loss, or risk, personal or otherwise, which is incurred as a consequence, directly or indirectly, of the use and application of any of the contents of this book.

Copyright 2019 by Katherine Anne Butler

All rights reserved, including the right to reproduce this book or portions thereof in any form whatsoever. For information, address Scribner Subsidiary Rights Department, 1230 Avenue of the Americas, New York, NY 10020.

First Scribner hardcover edition February 2019

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Library of Congress Cataloging-in-Publication Data

Names: Butler, Katy, 1949 author. Title: The art of dying well : a practical guide to a good end of life / by Katy Butler.

Description: First Scribner hardcover edition. | New York : Scribner, 2019. Identifiers: LCCN 2018037020 | ISBN 9781501135316 (hardback) | ISBN 9781501135477 (paperback)

Subjects: LCSH: Terminal care. | Death. | BISAC:

SELF-HELP / Death, Grief, Bereavement. | MEDICAL / Terminal Care. | BIOGRAPHY & AUTOBIOGRAPHY / Personal Memoirs.

Classification: LCC R726.8 .B882 2019 | DDC 616.02/9dc23 LC record available at https://lccn.loc.gov/2018037020

ISBN 978-1-5011-3531-6

ISBN 978-1-5011-3532-3 (ebook)

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.