by Diane Rehm
ALSO BY DIANE REHM
On My Own
Finding My Voice
Toward Commitment (with John Rehm)
THIS IS A BORZOI BOOK PUBLISHED BY ALFRED A. KNOPF
Copyright © 2020 by Diane Rehm
All rights reserved. Published in the United States by Alfred A. Knopf, a division of Penguin Random House LLC, New York, and distributed in Canada by Penguin Random House Canada Limited, Toronto.
www.aaknopf.com
Knopf, Borzoi Books, and the colophon are registered trademarks of Penguin Random House LLC.
Library of Congress Control Number: 2019033872
ISBN 9780525654759 (hardcover)
Ebook ISBN 9780525654766
Cover design by Kelly Blair
v5.4
ep
This book is dedicated, first,
to the memory of my late husband,
John Rehm.
Our long marriage, and his death,
have shaped my life;
to my husband of two years,
John Hagedorn,
who has brought new joy into my life;
finally, to my beloved children,
David and Jennifer Rehm,
and their families
CONTENTS
Cover
Also by Diane Rehm
Title Page
Copyright
Dedication
FOREWORD BY JOHN GRISHAM
Preface
Barbara Coombs Lee,
President, Compassion & Choices
Lori Wallace-Pushinaitis,
a terminal cancer patient,
and Dr. Catherine Sonquist Forest,
Clinical Associate Professor of Medicine, University of California, San Francisco, Natividad Medical Center, and Lori’s end-of-life-care doctor
Christina Puchalski,
board-certified palliative-care physician, geriatrician, and internist, George Washington University School of Medicine
Dan Diaz,
widower of Brittany Maynard
Martha Kay Nelson,
Director of Spiritual Care at Mission Hospice & Home Care
Heather Massey,
death educator
Rev. William Lamar,
Metropolitan African Methodist Episcopal Church, Washington, D.C.
Dr. Roger Kligler,
a supporter of medical aid in dying
Stella Dawson-Klein,
widow of Mary Klein
Dr. Katalin Roth,
Professor of Medicine, George Washington University, and Mary Klein’s end-of-life care doctor
Mary Cheh,
Professor of Constitutional Law and member, District of Columbia Council
Eric Luedtke,
Delegate, Maryland House of Delegates
Alexa Fraser,
a Death with Dignity supporter
Father John Tuohey,
a Roman Catholic priest
William “Bill” Roberts,
a terminal cancer patient and friend of the author’s
Dr. Lonny Shavelson,
Director, Bay Area End of Life Options
Deborah Gatzek Kratter,
attorney at law, a patient of Dr. Lonny Shavelson’s
Dr. David Grube,
National Medical Director, Compassion & Choices
Gizal Rachiti, Frankie Buruphee, Somia Monuputi, and Charlie Hartley,
Four students who attended Dr. Grube’s lecture
Dr. William Toffler,
National Director, Physicians for Compassionate Care; Professor Emeritus, Oregon Health & Science University
Allan Christopher Carmichael,
Retired Associate Director of Collections and Horticulture at the UC Botanical Garden, widower of Terry Stein,
and Dr. Stephanie Marquet,
Terry’s palliative-care physician
The Honorable Selwa “Lucky” Roosevelt,
Chief of Protocol in the Reagan administration
Benjamin Zide,
Sophomore, Dartmouth College, grandson of Diane Rehm
ACKNOWLEDGMENTS
FOREWORD
JOHN GRISHAM
I believe it’s wrong to sustain a life beyond the point when it should not be sustained, when it should be terminated. We all are aware of cases of people being kept alive by modern medicine long past the time when they should be allowed to die. I think that it becomes immoral if a person is brain dead, clinically dead, and is being kept alive by machines. This is something that my wife and I have always felt strongly about.
She and I have been fortunate. We haven’t had a relative or close friend go through a prolonged and drawn-out death that should not have been allowed. After open and honest discussions with our parents years ago, we encouraged them to execute living wills and get these things on file so that they would not be sustained against their wishes by modern medicine. They had witnessed the other—the bad—side of things, and knew how awful it can be. I’m sure it’s hard for some families to have such discussions, but our parents—very alive, very healthy at the time—were determined to avoid being kept alive when they wanted to die.
As for my wife and me, we’ve made certain that our schoolteacher daughter and lawyer son are very clear about how we feel about prolonging life when it shouldn’t be prolonged, and our son has copies of our living wills and advance directives in his office. This is something we’ve talked about with the kids over a long period of time, and since we all feel the same way, that’s been easy for us to do. And we’ve encouraged them to do the right paperwork, too—living wills—and get those on file, because calamitous things can strike one at any age. They don’t just happen to old people. Young people, too, can get injured, have strokes or heart attacks or even worse diseases, and can linger hopelessly and painfully for a long, long time.
I’ve heard the argument that right to die laws could be used to pressure old or disabled people to die, but I’ve never been exposed to a case like that. I appreciate the argument, and can imagine that it could happen in a very small percentage of cases, but for me the benefits of allowing a person to choose far outweighs the risk. As for the idea that someone who stood to inherit from a sick person could force that individual to deploy the right to die laws, I think that there are enough safeguards—other family members, health-care professionals—in place to prevent abuse.
As for me, although I’ve been lucky enough not to have witnessed anything close to a patient who was suffering terribly and just wanted to end it all, that’s kind of my fear—to find myself in a situation where I or a loved one is in a great deal of pain and suffering with no hope of recovery. That’s why my wife and I have directed our health-care professionals to not resuscitate and to terminate all treatment in the event that we become terminally ill with no reasonable chance of recovery.
I have a very close friend who’s a neurosurgeon, and I know from him the high price doctors pay for dealing so much with death. We drink a bottle of wine together, and he talks about facing so much death and so much suffering, and how doctors and nurses in these situations know what to do. Not that he comes out with details, but I can infer that they just know how to manipulate the medications to bring about a peaceful end to someone who is suffering and never going to recover. To me, that’s a “good death.” I suppose I’m a coward. Just crank up the morphine and put me to sleep!
When I was a young lawyer, I had a case where a ten-year-old bo
y was burned over 95 percent of his body, basically from his eyes and nose all the way down, and they flew him to this specialty hospital where they treated him for a year. They saved his life…and for the rest of his life he resented what they had done to him. He was disfigured, he was miserable—it was horrible. I tell my wife that if I get burned terribly and am going to be scarred and disfigured, I don’t want to be saved, okay? It’s over.
My number one fear, though, is a stroke that leaves me with pretty serious brain damage and unable to do a lot of things, yet still able to live pain-free and to function at some level. But rehab often works for stroke victims—sometimes it’s miraculous. So I wouldn’t be so quick to pull the plug with a stroke as I would be for people with terminal cancer or Parkinson’s or Alzheimer’s disease. Alzheimer’s gets to me, because you have these people who are physically gone. People who have been lying there for years and are basically brain dead, physically dead, dead, dead. But they’re breathing without machines. Their families go through this horrific end of life trying to love and care for someone who’s not there. It’s also a huge financial burden on our health system.
I’m fortunate because I have my friend the neurosurgeon as a resource. I don’t care what my health problem may be, this guy is going to tell me the truth. (I’m sixty-three; he’s about ten years older.) He’s told me so many stories over the years. For instance, one about a patient with grade-four glioblastomas. He and his doctors have these discussions saying, “You have about a year to live. If you have some surgery or radiation, all the different procedures, you can have about a year. Or you can do nothing, go home, stay comfortable, and you’ll have about six months.” You’d be surprised how often the advice is “Don’t do anything. Don’t do surgery because it’ll mess you up physically and it’s not going to prolong anything but the agony. Yes, miracles happen, we see that all the time. Even so, there’s a 95 percent likelihood that you’re not going to live more than two years, or something like that.” The patient then knows the score and can make his or her decision.
My mother had cancer for the last seven years of her life. It finally got her when she was eighty. Most of those years were good years, and along the way her doctors always leveled with us. She died at home. I was holding one hand, my dad was holding the other. My two sisters and my mom’s sister were there—they’d spent the afternoon together—and then she decided it was time to go because it was time to go. So we spent a couple of hours with her in her bed, and then she went as peacefully as could be. I have two brothers, two sisters, and we all had input into Mom’s care. Everyone said, “Do not let her suffer. She’s not going to get up and start walking again, she’s not going to recover”—we all knew that. I think my sister, who’s a nurse, made sure that Mom was never uncomfortable—she was on morphine—and she just went to sleep, and her breathing got more and more labored, slower and slower, and she finally took her last breath. And we were all there. I think of it as a good death.
We were raised very devout believers in God, believers in Christ, very devout Southern Baptists—that’s the faith we had. We knew we’d be together in the afterlife. That’s why I don’t fear death. I know that many religious people believe that right to die laws go against the will of God—that God should be the only decider. To me, the issue depends on how you decide. If you are young and healthy and full of promise but have mental issues or depression, and you decide to take your own life, I’m not sure that God would approve. Or that it would be a rational move for you to make. Suicide can be the ultimate act of selfishness because of what it leaves behind, especially if it’s by a young person.
What I’m talking about is people who are terminally ill and who are not going to recover—people in pain, facing death; that’s a totally different situation, because death is already there. Alzheimer’s patients can live for three or four years before they finally conk out, but they’re practically dead. Death has arrived. Modern medicine may postpone it…that’s what I question. If you’re stricken with a horrible cancer, that’s your fate. I’m not going to say God did it to you. That’s your fate. And you’re going to die. Not sure when, where, or how, but you’re going to go through a process in which your body deteriorates, the cancer takes over, there’s going to be a hospital bed with tubes and meds and all that. You are at the end. And you should be able to decide when you’re ready to go.
Even if the doctors can keep you comfortable for a little longer, it should be the decision of the patient, assuming that the patient facing a terminal situation is in command of his or her mental faculties. The decision does not belong to the doctor. It belongs to the patient. It’s the right to die, and we should all have that right.
PREFACE
Death was part of my life at an early age.
It’s December 1955. My beautiful mother lies in a bed at Georgetown University Hospital, crying, moaning, suffering, begging for God to take her. For perhaps the sixth time, she has been drained of several quarts of fluid. Before each procedure, her stomach becomes severely distended, making her appear to be nine months pregnant. I am alone as I watch her, feeling totally helpless, crying as I stroke her feet, unable to ease her pain, hating her suffering, hating that she has to continue living. She is forty-nine years old. I am nineteen. We are told she is suffering from cirrhosis of the liver, a disease ordinarily attributed to alcoholism. My mother is not an alcoholic. She and my father share a shot glass of whiskey on Christmas and New Year’s Eve. The doctors are skeptical of her denials, but finally come to believe her. Had they asked me, I could have vouched for my mother’s nondrinking habits. I knew she had suffered from malaria in her teenage years, when she lived in Alexandria, Egypt. Whether that disease could have affected her liver to such an extent forty years later, I cannot know. She lay in that hospital bed for weeks, her beautiful unwrinkled skin and eyes yellowed with jaundice, the fluid continually mounting, swelling her belly again and again.
December 31, 1955. My husband and I have just moved into our new apartment, several blocks from my parents’ home. We have no telephone. We are planning to go to a New Year’s Eve celebration given by our church group, but first we visit my mother at the hospital.
When we arrive at ten p.m., she lies sleeping, with the rails up on each side of her bed. I don’t want to wake her, so we silently tiptoe out of the room.
We run into her doctor, who asks whether we’ve seen her. “We did go in,” I say, “but she is asleep and I don’t want to wake her.” The doctor tells us to go back, to wake her, to be sure she knows I am there. I’m hesitant, but he urges me to return to her room. I do, but she hardly acknowledges me when I wake her. I feel terrible. I don’t want to go to a New Year’s Eve party, but we do. The doctor knew what he did not tell us: my mother would barely live through the night.
New Year’s Day 1956. A loud knocking at our apartment door. It’s my husband’s brother. He says we must come quickly to the hospital. We race there, speeding, hoping for police to catch us and help us get to Georgetown. I run ahead of my husband and brother-in-law through the parking lot, into the hospital, and to her room. My father, sister, and aunts are there, all weeping. She is still in her bed. But it’s too late. She died twenty minutes before we arrive.
My mother begged to die. There was no hope of recovery. There was nothing more they could do to ease her pain or to keep her comfortable. She died suffering.
As a child of six, and for many years thereafter, I can recall saying to my mother, “I want to die before you do. I don’t want to live without you.” Deep in my heart, I’d known she wasn’t well, and I feared being left behind. To then have had to watch her suffer for so long became the beginning of my passionate belief in the right to die.
It began while watching my mother in her agony, feeling so angry that doctors could do nothing to help ease her way into the inevitable. I kept wondering why she had to suffer, why she could not simply be put out of her misery, when
there was no cure in sight.
Of course, back in 1955, there were no liver transplants being performed, and no “right to die” laws in place anywhere in the country. It was not until 1998 that Oregon became the first state in the country to adopt such a law. The state of Washington followed in 2009, Montana by a court case in 2009, Vermont in 2013, California in 2015, Colorado in 2016, the District of Columbia in 2017, Hawaii in 2018, and New Jersey and Maine in 2019. Just nine states, plus the District of Columbia, where individuals are permitted to choose when to cease their suffering through the use of medical aid in dying. Now numerous state legislatures are in fierce debate among those who believe, as I do, that each of us has the right to choose when our suffering should end, and those who argue, on religious or moral or ethical grounds, that no human being has the right to hasten an individual’s death. The opponents define the right to die as suicide. Other countries, such as Switzerland and the Netherlands, have long had laws allowing doctors to respond to requests of individuals to end their lives, some because of physical illness, others due to severe emotional distress.
For the past two years, I have interviewed many people: patients with terminal illnesses, doctors, nurses, ethicists, and those left behind. They told stories of their journeys through end-of-life preparation, shared their perspectives, and spoke honestly of their beliefs, hopes, and fears. Most will appear in the television documentary When My Time Comes, a companion to this book.
Both the book and the film are meant to shed light on the reality of medical aid in dying, the process, who is eligible, what it means for those people who have been approved, the feelings of physicians involved, as well as the thoughts of those left behind.
