Faced with my mother’s decision to end her life after suffering from Parkinson’s disease for many years, I spent the last year of her life wrestling with how to respond. Because her doctors were unwilling to help her – and because assisted suicide is illegal in my hometown (Washington D.C.) — my mother decided to stop eating and drinking, believing it would pose less of a legal risk to my sisters and me. Despite the near total cessation of food and liquid, she lived for close to two weeks and would have lived longer if she hadn’t taken an overdose of morphine several nights before she died in order to speed things along.
Although I did not initially embrace her decision to end her life, I was angry and distressed at how hard it was for her to accomplish her “good death” and, in the years since, I have become deeply convinced that choosing when and how you die is a basic civil right. In his cogent, detailed chronicle of the modern right-to-die movement, In Search of Gentle Death: The Fight for Your Right to Die With Dignity, social historian and author, Richard N. Cote, makes this argument in eloquent, quietly reasoned prose.
In a passage that I found deeply resonant, he writes: “Only the suffering person is capable of determining how much agony is endurable and deciding that the choice of a peaceful, painless death is preferable. The death-with-dignity movement declares that it is an individual’s right to decide whether or not to continue living, not the privilege of someone else to require that he or she must live.”
Upfront about his admiration for the movement and its leaders, Cote assumes a corresponding sympathy in his readers and I was initially distracted by the book’s “preaching to the choir” perspective. But once Cote gets into his story, he spends little time editorializing and is never shrill or polemic. And for a book about illness, death and the hard choices they command, I found the book surprisingly entertaining. With a novelist’s eye for detail, Cote skillfully brings a wide and colorful cast of characters vividly to life, introducing us to the many activists and patients who have shaped the modern right-to-die movement.
Started in the 1930s by a small group of intellectual philosophers, the death-with-dignity movement has evolved into a vast, international civil rights movement. The titans of that movement — Derek Humphry and Jack Kavorkian – are given top billing (appropriately enough), but Cotes also includes a number of less familiar figure including his friend, George Exoo, a liberal Unitarian minister who worked as an “exit guide” and found himself facing a 14-year prison term after helping an Irish woman, Rosemary Toole, to die. Many others, including Dr. Soichiro Iwao of Japan, Ludwig Minelli of Switzerland, Dr. Gustavo Alfonso Quintana of Columbia and Marilyn Seguin of Canada are shown putting their personal and professional lives on the line in the service of their beliefs.
But for me the most powerful stories were those of the patients who were willing to travel, testify and make themselves into “case studies” to help win the legal right to end their lives peacefully and on their own terms. There was Sue Rodriguez, an athletic woman struck down with ALS at forty-one, who was willing to be the “poster child” for the right to die in Canada and whose court case changed the way Canadians view the issue. (Her words, “If I cannot give the consent to my own death, then whose body is this? Who owns my life?” were a haunting challenge to those who would make such an act illegal.)
Or, the fascinating, morally ambiguous case of Holly Bosscher, a Dutch woman, whose hard life and chronic depression led her to an unshakable desire to end her life and whose death changed the legal physician aid-in-dying laws in Holland to include “unrelieved and existential pain” as a legal grounds for a suicide.
Cote also brings a number of rich new details to the by-now familiar story of Derek Humphry’s wife, Jean, who in 1975 asked her husband to help her procure the drugs necessary to end her life. (She suffered from metastasized breast cancer and was in terrible, unrelieved pain.) Despite the fact that it meant committing a felony under England’s draconian Suicide Act, Humphry chose to help his wife end her life and an activist – and a movement — was born.
Humphry’s difficult second marriage to Ann Wickett, which nearly derailed the Hemlock Society, is also described in great detail and, frankly, Hollywood could not have written a more personally and professionally destructive spouse for a man in his position. But somehow, Humphry slogged through it and, aided by the phenomenal success of his how-to-die guide, Final Exit, the Hemlock Society grew and flourished.
Unfortunately, when Humphry stepped down as director in 1992, the group fell prey to in-fighting and lost much of its public support. Re-named “End-of-Life Choices” by its board in 2003, membership plummeted. End-of-Life Choices then merged with another right-to-die organization and became Compassion & Choices in January of 2005, headed up by Barbara Coombs Lee.
Dubbed “the Hemlock Society, decaf version,” by one former Hemlock board member, C&C immediately distanced themselves from Caring Friends, the Hemlock Society’s controversial “dying-member assistance program,” and then returned the insult by likening the teaching of self-deliverance methods to promoting “coat-hanger abortions.”(The Final Exit Network has continued the work of Caring Friends despite the arrests of seven of its members.)
In his low-key, almost pastoral way, Cote admonishes both sides and makes an impassioned plea to end the ideological turf wars. There is a place for pushing legislative reform — and good reason to continue teaching do-it-yourself deliverance methods, he says. And, as In Search of Gentle Death shows us, the death-with-dignity activists have much to be proud of. With this important testament to their achievements to bolster them, the future of the movement — and those of us who will benefit from their efforts — looks bright indeed.