Being Mortal: Medicine and What Matters in the End (34 page)

Yet at the same time, hospice programs are appearing everywhere: H. Ddungu, “Palliative Care: What Approaches Are Suitable in the Developing World?,”
British Journal of Haemotology
154 (2011): 728–35. See also D. Clark et al., “Hospice and Palliative Care Development in Africa,”
Journal of Pain and Symptom Management
33 (2007): 698–710; R. H. Blank, “End of Life Decision-Making Across Cultures,”
Journal of Law, Medicine & Ethics
(Summer 2011): 201–14.

Scholars have posited: D. Gu, G. Liu, D. A. Vlosky, and Z. Yi, “Factors Associated with Place of Death Among the Oldest Old,”
Journal of Applied Gerontology
26 (2007): 34–57.

Use of hospice care has been growing: National Center for Health Statistics, “Health, United States, 2010: With Special Feature on Death and Dying,” 2011. See also National Hospice and Palliative Care Organization, “NHPCO Facts and Figures: Hospice Care in America, 2012 Edition,” 2012.

Patients tend to be optimists: J. C. Weeks et al., “Patients’ Expectations about Effects of Chemotherapy for Advanced Cancer,”
New England Journal of Medicine
367 (2012): 1616–25.

a short paper by two medical ethicists: E. J. Emanuel and L. L. Emanuel, “Four Models of the Physician-Patient Relationship,”
Journal of the American Medical Association
267 (1992): 2221–26.

most ovarian cancer patients at her stage: “Ovarian Cancer,” online American Cancer Society guide, 2014,
http://www.cancer.org/cancer/ovariancancer/detailedguide
.

Bob Arnold, a palliative care physician I’d met: See A. Back, R. Arnold, and J. Tulsky,
Mastering Communication with Seriously Ill Patients
(Cambridge University Press, 2009).

One-third of the county lived in poverty: Office of Research, Ohio Development Services Agency,
The Ohio Poverty Report, February 2014
(ODSA, 2014),
http://www.development.ohio.gov/files/research/P7005.pdf
.

they formed Athens Village on the same model: More information at
http://www.theathensvillage.org
. They could use your donations, by the way.

8: COURAGE

Plato wrote a dialogue:
Laches
, trans. Benjamin Jowett, 1892, available online through Perseus Digital Library, Tufts University,
http://www.perseus.tufts.edu/hopper/text?doc=Perseus%3atext%3a1999.01.0176%3atext%3dLach
.

The brain gives us two ways to evaluate experiences: D. Kahneman,
Thinking, Fast and Slow
(Farrar, Straus, and Giroux, 2011). See also D. A. Redelmeier and D. Kahneman, “Patients’ Memories of Painful Treatments: Real-Time and Retrospective Evaluations of Two Minimally Invasive Procedures,”
Pain
66 (1996): 3–8.

“An inconsistency is built into the design of our minds”: Kahneman,
Thinking, Fast and Slow
, p. 385.

After some resistance, cardiologists now accept: A. E. Epstein et al., “ACC/AHA/HRS 2008 Guidelines for Device-Based Therapy of Cardiac Rhythm Abnormalities,”
Circulation
117 (2008): e350–e408. See also R. A. Zellner, M. P. Aulisio, and W. R. Lewis, “Should Implantable Cardioverter-Defibrillators and Permanent Pacemakers in Patients with Terminal Illness Be Deactivated? Patient Autonomy Is Paramount,”
Circulation: Arrhythmia and Electrophysiology
2 (2009): 340–44.

only a minority of people saved from suicide make a repeated attempt: S. Gibb et al. “Mortality and Further Suicidal Behaviour After an Index Suicide Attempt: A 10-Year Study,”
Australia and New Zealand Journal of Psychiatry
39 (2005): 95–100.

In places that allow physicians to write lethal prescriptions: E.g., the state of Washington’s Death with Dignity Act,
http://apps.leg.wa.gov/rcw/default.aspx?cite=70.245
.

one in thirty-five Dutch people: Netherlands Government, “Euthanasia Carried Out in Nearly 3 Percent of Cases,”
Statistics Netherlands
, July 21, 2012,
http://www.cbs.nl/en-GB/menu/themas/gezondheid-welzijn/publicaties/artikelen/archief/2012/2012-3648-wm.htm
.

The Dutch have been slower: British Medical Association,
Euthanasia: Report of the Working Party to Review the British Medical Association’s Guidance on Euthanasia
, May 5, 1988, p. 49, n. 195. See also A.-M. The,
Verlossers Naast God: Dokters en Euthanasie in Nederland
(Thoeris, 2009).

About half don’t even use their prescription: E.g., data from Oregon Health Authority,
Oregon’s Death with Dignity Act, 2013 Report,
http://public.health.oregon.gov/ProviderPartnerResources/EvaluationResearch/DeathwithDignityAct/Documents/year16.pdf
.

Technological society has forgotten: L. Emanuel and K. G. Scandrett, “Decisions at the End of Life: Have We Come of Age?,”
BMC Medicine
8 (2010): 57.

Acknowledgments

I have a lot of people to thank for this book. First and foremost are my mother, Sushila Gawande, and my sister, Meeta. In choosing to include the story of my father’s decline and death, I know I dredged up moments they’d rather not relive or necessarily have told the way I did. Nonetheless, they helped me at every turn, answering my difficult questions, probing their memories, and tracking down everything from memorabilia to medical records.

Other relatives here and abroad provided essential assistance as well. In India, my uncle Yadaorao Raut in particular sent me old letters and photographs, gathered memories about my father and grandfather from family members, and helped me check numerous details. Nan, Jim, Chuck, and Ann Hobson were equally generous with their memories and records of Alice Hobson’s life.

I am also indebted to the many people I got to know and interview about their experiences with aging or serious illness, or dealing with a family member’s. More than two hundred people gave me their time, told me their stories, and let me see into their lives. Only a fraction of them are explicitly mentioned in these pages. But they are all here just the same.

There were also scores of frontline staff in homes for the aged, palliative care experts, hospice workers, nursing home reformers, pioneers, and contrarians who showed me places and ideas I’d never have encountered. I especially want to thank two people: Robert Jenkens opened doors and guided me through the large community of people who are reinventing support for the aged, and Susan Block of the Dana Farber Cancer Institute not only did the same for the world of palliative and hospice care but also let me become her partner in research into how we might make the insights described here part of the fabric of care where we work and beyond it.

The Brigham and Women’s Hospital and the Harvard School of Public Health have given me an incredible home for my work for more than a decade and a half. And my team at Ariadne Labs, the joint innovation center that I lead, has made mixing surgery, health systems research, and writing not only feasible but also a joy. This book would not have been possible without the particular efforts of Khaleel Seecharan, Katie Hurley, Kristina Vitek, Tanya Palit, Jennifer Nadelson, Bill Berry, Arnie Epstein, Chip Moore, and Michael Zinner. Dalia Littman helped with fact-checking. And, most indispensably, the brilliant and unfazable Ami Karlage spent the last three years working on this book with me as research assistant, storyboard artist, manuscript organizer, sounding board, and supplier, when necessary, of Bourbon Brambles.

The
New Yorker
magazine has been my other creative home. I count myself as unfairly lucky not only to have gotten to write for that amazing publication (thank you, David Remnick) but also to have had as my editor and friend the great Henry Finder. He saw me through writing the two essays for the magazine that became the foundation of this book and guided me to many pivotal additional ideas. (He was, for instance, the one who told me to read Josiah Royce.)

Tina Bennett has been my tireless agent, my unstinting protector, and, going all the way back to college, my dear friend. Although everything about publishing books is changing, she has always found a way for me to grow an audience and still write what I want to write. She is without peer.

The Rockefeller Foundation provided its gorgeous Bellagio Center as a retreat where I started the book and then returned to finish the first draft. My subsequent conversations about that manuscript with Henry, Tina, David Segal, and Jacob Weisberg transformed the way I saw the book, leading me to remake it from beginning to end. Leo Carey did a line edit of the final draft, and his ear for language and clear expression made the book tremendously better. Riva Hocherman helped greatly at every stage, including providing an invaluable final read through. Thank you also to Grigory Tovbis and Roslyn Schloss for their essential contributions.

My wife, Kathleen Hobson, has been more important to this book than she knows. Every idea and story here we have talked through together and in many instances also lived through together. She has been a constant, encouraging force. I have never been a facile writer. I don’t know what those authors who describe the words just flowing out of them are talking about. For me, the words come only slowly and after repeated effort. But Kathleen has always helped me find the words and made me know the work is achievable and worthwhile no matter how long it takes. She and our three amazing children, Hunter, Hattie, and Walker, have pulled for me each step of the way.

Then there is Sara Bershtel, my extraordinary editor. As she worked on the book, Sara was forced to live through its most difficult realities in her own family. It would have been understandable for her to choose to step aside. But her devotion to the book remained unwavering, and she went through every draft with me meticulously, working paragraph by paragraph to make sure I’d got every part as true and right as I could. Sara’s dedication is the reason this book says what I wanted it to say. And that is why it is dedicated to her.

Also by Atul Gawande

Complications: A Surgeon’s Notes on an Imperfect Science

Better: A Surgeon’s Notes on Performance

The Checklist Manifesto: How to Get Things Right

About the Author

A
TUL
G
AWANDE
is the author of three bestselling books:
Complications
, a finalist for the National Book Award;
Better
, selected by
Amazon.com
as one of the ten best books of 2007; and
The Checklist Manifesto
. He is also a surgeon at Brigham and Women’s Hospital in Boston, a staff writer for
The New Yorker
, and a professor at Harvard Medical School and the Harvard School of Public Health. He has won the Lewis Thomas Prize for Writing about Science, a MacArthur Fellowship, and two National Magazine Awards. In his work in public health, he is director of Ariadne Labs, a joint center for health system innovation, and chairman of Lifebox, a nonprofit organization making surgery safer globally. He and his wife have three children and live in Newton, Massachusetts.

BEING MORTAL.
Copyright © 2014 by Atul Gawande. All rights reserved. For information, address Henry Holt and Co., 175 Fifth Avenue, New York, N.Y. 10010.

www.henryholt.com

Cover design by Nate Durrant/Elixir Design

eBooks may be purchased for business or promotional use. For information on bulk purchases, please contact Macmillan Corporate and Premium Sales Department by writing to [email protected].

The Library of Congress has cataloged the print edition as follows:

Gawande, Atul, author.

   Being mortal : medicine and what matters in the end / Atul Gawande. — First edition.

      p. ; cm.

   Includes bibliographical references.

   ISBN 978-0-8050-9515-9 (hardcover)—ISBN 978-1-62779-055-0 (electronic book)

   I. Title.

   [DNLM:   1.  Terminal Care.   2.  Activities of Daily Living.   3.  Aged.   4.  Aging—physiology.   5.  Attitude to Death.   6.  Prognosis.   7.  Quality of Life. WB 310]

   R726.8

   362.17’5—dc23

2014017442

e-ISBN 978-1-62779-055-0

First Edition: October 2014