Book Review: When My Time Comes: Conversations about Whether Those Who Are Dying Should Have the Right to Determine When Life Should End
by Diane Rehm
Alfred A. Knopf, 2020
“Palliative and hospice care are amazing at making death easier for people. Yet there are limits. [They] do a really wonderful job; [but] we’ve forgotten that for some patients, the suffering goes on.”
Those are the words of Dr. Lonny Shavelson, Director, Bay Area End of Life Options, as spoken in an interview with Diane Rehm, author of the book, When My Time Comes. Rehm, longtime host of NPR’s The Diane Rehm Show (1979 to 2016, with a listening audience of nearly three million) has chosen for her new life work, the study of how we end our lives. She was moved to do this after sitting at the bedside of her husband for ten long days as he and she suffered while he refused food and drink. This was the only recourse to him when he was ready to die, because Washington, D.C., where he lived, had not yet passed a medical aid in dying law.
Eight states, plus Washington, D.C., have now legalized medical aid in dying, and many more states are debating it in their legislatures. There are strong advocates and strong opponents, and Rehm set out to listen deeply to both sides. She amassed a group of thoughtful people to discuss the issue, much as Plato in his Symposium asked a group of colleagues to discuss the nature of love. Rehm’s discussants range from cancer patients and their physicians to medical and constitutional law professors. She includes a palliative care physician, a hospice director, a state legislator involved in an unsuccessful attempt to get medical aid in dying passed in Maryland, and a Roman Catholic priest, as well as current medical school students, an African-American minister who explains the distrust many people of color in America have of our medical system, and family members who experienced the death of a relative who chose death with dignity.
Every interviewee offers something to ponder. Among the observations that stood out for me were these:
“It’s as though medicine has gotten ahead of human desire. There are so many ways to keep us alive, and yet the incredibly sophisticated means of keeping people alive don’t always take into account what people themselves want…Medical advances may be replacing humanity with technology.” – Barbara Coombs Lee, President, Compassion & Choices
“People should follow their own path, but they should still have a choice. That’s the bottom line.” – Mary Cheh, Professor of Constitutional Law
“No religion should have the standing to take away choices, reasonable choices, from people who don’t belong to that religion.” – Alexa Fraser, a Death with Dignity supporter
”…death is not the enemy – we’re all going to die. The enemy is terminal suffering, suffering at the very, very end of life… and who defines suffering? It’s the patient who defines suffering, it’s not the doctor. That’s really important to remember….Continuous deep sedation is legal in all states. The question really is, How could it be allowed and not medical aid in dying?” – Dr. David Grube, National Medical Director, Compassion & Choices
In the last interview in the book, Selwa Roosevelt, Chief of Protocol in the Reagan Administration, offers her hope that “by the time I’m ready to go, the laws will be changed all over the country and people won’t have to fly to Switzerland and other places to be able to have a death that one could live with.” She thinks it might happen soon: “Sooner or later, some of these legislators, the ones who are so adamantly opposed, are going to have to face it themselves, and they’re going to find out how important it is to be able to die with dignity.”
The majority of the interviewees in this book are in favor of medical aid in dying, and in fact Rehm wouldn’t have written the book if it had been otherwise. She ends the book with a note to her grandson: “What I would really like is for the whole family to be here on that last day of my life, so I can be with all of you, together. We will laugh, we will enjoy each other’s company, we will be with each other in happiness, and then I will go into my bedroom and into my own bed and I will pass away. And that will be a very happy moment for me if it can happen that way.”
Review by Susan Gillotti, PCV Board Member
by Lewis Mitchel Cohen, MD
London: Rowman & Littlefield, 2019
Lewis Cohen’s book, A Dignified Ending, is a comprehensive history of the movement towards medical aid in dying since the time of Socrates. It presents the pros and cons, the pioneers in promoting it, and the growing number of citizens who want it as their ultimate civil right.
Dr. Cohen is a professor of psychiatry, a palliative medicine practitioner, and a researcher who has been studying end-of-life issues for forty years. He decided to write this book because he wanted to understand the issue fully. Advances in medical treatment are often having the unintended consequence of allowing us to live longer at the expense of living well. What is the proper response to this?
There are many who believe that legislatures and religious institutions should be the arbiters of what is ethical. While Dr. Cohen is respectful of those who oppose medical aid in dying, he does not think they should prevail. No one has to choose this ending; he asks only that we be allowed to choose it if we want to.
A Dignified Ending weaves together scientific research, personal stories (including the ethical dilemma experienced by Sigmund Freud), and up-to-date information on the status of assisted dying today, both nationally and globally. It is at the same time a reference book that can be read by physicians, legislators, and religious leaders for a fully informed discussion of the use of medication that allows us to end our lives peacefully at the time of our choosing.
Cohen believes that legalized medical aid in dying may be coming to all of America soon. “America was founded on the concept of self-determination,” he writes. “We like to think for ourselves.” As our population lives longer, and children no longer live close to their parents, and the cost of long term residential care continues to be unaffordable for many, there will come a tipping point. We will ask whether prolonging life for the sake of prolonging life is still a worthy goal.
Cohen recognizes the difference between physical suffering and existential suffering. He concludes: “Medical aid in dying should be linked to irremediable suffering and not solely to the imminence of death. It should be available to those individuals who have had a consistent and unwavering desire for it. People should have the right to insist on controlling the end of their lives when life as they know it – when the identity that they have proudly forged – has already ceased to exist.” His book is a worthy contribution to the discussion and a keeper for the bookshelf.
Review by Susan Gillotti, PCV Board Member
by Katy Butler (Author),
Scribner (February 19, 2019)
Award-winning journalist Katy Butler, an authority on end-of-life issues, has written a book that all of us need. The Art of Dying Well is a practical, easy to read guide to making the best of our later years, even when we have a chronic medical condition. It is sensibly organized according to how far along the spectrum of frailty we are, with suggestions of the steps we need to take. The stages she defines are Resilience, Slowing Down, Adaptation, Awareness of Mortality, House of Cards, Preparing for a Good Death, and Active Dying.
Each chapter in the book has a defining checklist. When we are Resilient, we may find that “aches, pains and health problems are annoying but not limiting” and we may wonder why they make the numbers on credit cards “so small and fuzzy.” During the second stage, Slowing Down, we may be taking at least three medications regularly and find that blowing out the candles on our last birthday cake was a little harder. Awareness of Mortality enters when doctors won’t discuss our prognosis; they will use terms like “chronic, progressive, serious, advanced, late stage or end stage,” when what they mean is “incurable, worsening, worse yet, and approaching end of life.”
House of Cards is a wake-up call; the zest for life is melting away, we can’t walk half a mile unaided, and we’ve lost ten percent of our body weight in the past year. It’s followed by Preparing for a Good Death, which we should be doing when doctors say they wouldn’t be surprised if we died within a year, or cancer has returned after two or more rounds of treatment and we decide not to undergo more. Active Dying, the last stage, is what it sounds like; we stop eating, need to be helped to the bathroom, and may nap for hours, speak little, and keep our eyes closed.
You might think that all of these chapters are depressing to read, but that is not the case. Butler is positive throughout, helping us see that our experiences are normal and need not be something to fear. The end-of-life stages are part of a natural process of losing energy. We are born with energy and may have lots of energy well into our later years. But then it begins very imperceptibly to slip away, for each and every one of us. That is when this book becomes invaluable. It contains straightforward information on how to talk to our medical providers and how to be in charge. There is a 16-page glossary of medical terms that, for this reviewer, was especially helpful. I did not know about “frequent flyers” – crude hospital slang for a frail older person who repeatedly comes to the emergency room – or “cowboys” – doctors who will take inappropriate risks – or “moral distress” – the emotional and spiritual pain of medical staff, forced by hospital protocols or by patients’ families, to do things to patients that cause suffering and violate the clinician’s moral values.
Butler is non-judgmental about medical aid in dying (MAID). She reminds us that it isn’t new, that throughout history, “some medical professionals have quietly hastened death when they believed that their moral obligation to relieve suffering overrode a blanket duty to prolong life.” She cites Louis Pasteur, the father of the germ theory of disease, who a hundred years ago helped five farmers in France who’d been bitten by a rabid wolf die by lethal injection. She writes of the growing number of states in America where it is now legal, and of how “planned, voluntarily timed deaths… can be as calm, poignant, and sacred as any other.”
Butler’s The Art of Dying Well has been praised by Barbara Ehrenreich, author of Natural Causes, Ira Byock, author of Dying Well, and Lucy Kalanithi, widow of Paul Kalanithi, author of When Breath Becomes Air. It has been praised by a member of my family who, when I gave it to her, stayed up all night reading it. When I want to know what I should be doing next, I will check my behavioral symptoms against Butler’s lists. She will be an ally as I try to figure out how to have an honest conversation with a younger doctor, whether to call 911, and how to make my death a sacred rite of passage instead of a medical event.
Review by Susan Gillotti, PCV Board Member
by Barbara Coombs Lee (Author), Haider Warraich M.D. (Foreword) Littleton, CO: Compassion & Choices (December 14, 2018)
Barbara Coombs Lee has spent her life on the front lines as a nurse, lawyer and health policy reformer. She has seen death in every setting: on the streets of Harlem, during night shifts in nursing homes, in intensive care and coronary care and while riding with EMTs. She also has a law degree, earned after twenty years as a nurse. As CEO of Compassion & Choices, the national organization working to expand our options at the end of life, she has written Finish Strong , a powerful book telling us, the consumer, what we can do to make sure we die the way we want to.
Coombs Lee writes that, as Americans, we seem to have a desperate desire to obscure death’s inevitability. Physicians, well intended, often don’t want to tell us everything. All doctors, however, know that treatment plans will eventually “fail.” We will die. The question is, do we want to die in the grip of heroic efforts to keep us alive, no matter what the cost, or do we want to die gently? She quotes Gallup and Harris surveys that show that 69 to 74 percent of people now believe that the terminally ill should have agency over how their lives will end.
To that end, Barbara provides the reader with an arsenal of helpful information. She defines the components of advance directives, telling us how we can specify what we want during the stages of dementia. She discusses assisted living facility (ALF) riders that will assure our freedom of choice if that is our final home. She discusses sectarian healthcare directives and hospital visitation rights for unmarried couples. She devotes an entire chapter to “Overtreatment and Diminishing Returns” guiding the reader in identifying the important questions to ask a doctor. “What exactly is the success rate of this treatment?” and “How do you define success?” are two important ones. She invites us to think about what matters most to us in life. Do we love to read more than anything else? If the answer is yes, we need to know if a proposed treatment is going to give us blurred vision. Would we want it?
Coombs Lee credits the growing number of jurisdictions allowing medical assistance in dying (MAID) with an emerging national willingness to talk about this way of ending our lives. Twenty percent of the U.S. population now lives where it is allowed (Washington, Oregon, California, Hawaii, Montana, Colorado, Vermont and Washington, D. C.). She shares with us the story of Brittany Maynard, who moved to Oregon and achieved the death she wanted.
Barbara Coombs Lee tells us that creating change in all of America will take work. She takes on without flinching the hold some religions have on us by insisting on life at all costs. “Why,” she asks, “in a pluralistic nation, should some people be entitled to live their religious beliefs and others be required to live and die according to beliefs they do not share?” She makes an impassioned plea for all of us to become activists for our own agency at the end of life. We can do it. All we need is to develop our muscle when it comes to talking with our doctors, and making them feel comfortable with the questions we ask. Many doctors do not really understand what it is that the patient wants, or think that they know best.
My husband had a brain tumor and used Vermont’s Act 39 to choose the day he would die. He wanted the spiritual experience of being fully present when he took his next journey. He did not want to be in a coma as a result of palliative sedation. It was not easy to navigate with his health care providers, because he was the first patient in his medical practice to ask for it. I wish he and I had had Coomb Lee’s book while this was happening, because it would have been helpful in framing the questions we needed to ask. My copy of Finish Strong is on the bookshelf next to Atul Gawande’s Being Mortal. Buy it not only for yourself, but for your children and grandchildren (and your parents and grandparents). The desire to die gently, without distress for our loved ones, should be something we can talk about easily with friends, family, and physicians.
Review by Susan Gillotti, PCV Board Member