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 Atul Gawande
Medicine has triumphed in modern times, transforming birth, injury, and infectious disease from harrowing to manageable. But in the inevitable condition of aging and death, the goals of medicine seem too frequently to run counter to the interest of the human spirit. Nursing homes, preoccupied with safety, pin patients into railed beds and wheelchairs. Hospitals isolate the dying, checking for vital signs long after the goals of cure have become moot. Doctors, committed to extending life, continue to carry out devastating procedures that in the end extend suffering.
Gawande, a practicing surgeon, addresses his profession's ultimate limitation, arguing that quality of life is the desired goal for patients and families. Gawande offers examples of freer, more socially fulfilling models for assisting the infirm and dependent elderly, and he explores the varieties of hospice care to demonstrate that a person's last weeks or months may be rich and dignified.
Full of eye-opening research and riveting storytelling, Being Mortal asserts that medicine can comfort and enhance our experience even to the end, providing not only a good life but also a good end.
To Die Well: Your Right to Comfort, Calm, and Choice in the Last Days of Life
by Sidney Wanzer, M.D. and Joseph Glenmullen, M.D.
The information in To Die Well is both comforting and empowering. Knowing our rights to refuse treatment, as well as legal ways to bring about death if pain or distress cannot be alleviated, will spare us the frightening helplessness that can rob our last days of meaning and connection with others.
Drs. Sidney Wanzer and Joseph Glenmullen do not shy away from controversy. They make clear what patients should expect of their doctors, including the right to sufficient pain medication even if it shortens life. They distinguish between normal sadness and depression. They also explain the ways to hasten death that are legal and possible for anyone, and those that require a doctor's help.
A Good Death: Making the Most of Our Final Choices
by Sandra Martin
A Good Death is timely, engaging and inspiring. In taking on our ultimate human right, award-winning journalist Sandra Martin charts the history of the right to die movement here and abroad through the personal stories of brave campaigners like Sue Rodriguez, Brittany Maynard and Gloria Taylor. Martin weighs the evidence from permissive jurisdictions such as the Netherlands, Oregon, California, Switzerland and Quebec and portrays her own intellectual and emotional journey through the tangled legal, medical, religious and political documentation concerning terminal sedation, slippery slopes, and the sanctity of life.
Modern death has become a wrenching political dilemma, one that becomes more pressing as the population ages. A Good Death confronts our fears about dying, our struggle for meaning, and our dread of being trapped by voracious medical technology in a nightmare world that has abandoned caring in pursuit of curing, no matter the cost or the suffering to patients and their families.
A Good Death asks the tough question none of us can avoid: How do we want to die? The answer will change your life-and your death.
"Living Life Dying Death; A Guide to Healthy Conversations about Death and Dying"
by Jenifer Collins Taylor
While some see death and dying as taboo subjects, author Jennifer Collins Taylor, MSW approaches the topics with gentle, thought-provoking prose, demonstrating that openly discussing death and dying is as important to the living as it is to those who may be nearing their final breaths. Her book, Living Life Dying Death: A Guide to Healthy Conversations About Death and Dying to Inspire Life and Living, accomplishes its mission through reflective conversation starters that encompass topics such as compassion, dreams, fear, goodbye, gratitude, grief, honesty, hope, humor, joy, mystery, pain, patience, peacefulness, philosophy of life, relationships, spirituality and many more.
Most importantly, the book emphasizes that love is triumphant. In times of health readers are encouraged to reflect on, explore and express their beliefs on the very nature of life and living, death and dying. In times of health challenges the book can be used as a guide to initiate difficult conversations when faced with the possible decline and death of self, friend or loved one. In times of grief this book can be used to bring support and hope to the dynamic experience of grieving. Regardless of where readers are on the pathway from life to death, Living Life Dying Death should be readily available to guide, encourage and inspire healthy conversations about death, dying, grief and loss.
Living Life Dying Death calls readers to action, prompting them to find the courage and confidence to more openly discuss death, dying, grief and loss. This book stimulates the reader to embrace living well and encourages those approaching life's final journey to trade fear for love, comfort, forgiveness and a sense of awe. Courageous conversations about life and death allow the strength and beauty of the human spirit to shine.
Take Care of Dying---Get On with Living: End-of-life Planning that Works
by Theo Wells
The greatest gift you can give your family and friends is your carefully thought out plan for handling the unexpected events at the end of your life.
Here—all in one place—are the basic decisions you need to make as long as you’re living: