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 Advisory Committee Member