Abstract
A Dignified Ending is, as Dr. Cohen writes, a book of “unvarnished truths.” As a psychiatrist and palliative care physician, he has spent his career studying why people chose to die by discontinuing dialysis. This book is his journey to document the candid—not clinical—narratives of medical aid in dying in the United States. He interviews those who chose, “how, when, and where they were going to die” by exploring, “all the death-hastening options,” the history of activists in this movement, and the opposition to physician-assisted death.
This is Cohen's second book, and he notes the critical importance of meeting and documenting the positions and stories of both those who support and oppose medical aid in dying. Cohen makes his position clear; in today's landscape of hyperpolarized opinions, it was refreshing for him to give thoughtful respect to critics, noting that his views “have been deepened and sometimes altered by [his] interviews.”
The book is structured with multiple story arcs discussed in parallel across four parts. Part one of the book lays the scene of suffering—the myth of Hercules succumbing to grievous injury, pleading to be killed; a concerned internist caring for his wife ailing from Alzheimer dementia; a doggedly independent retired naval rear admiral and his wife taking their own lives in a planned and “upbeat fashion.” Cohen examines Sigmund Freud's palliation, relationship with his physicians, and death from oral. The portrayal of Freud's death was deliberate, juxtaposing the decline of the man whose theory of mind explained frantic unconscious defenses against the awareness of death. The common thread is an individual's dwindling autonomy in light of incurable disease, and medicine's failure (or inability) to help.
Part two of the book explores the grassroots and organized responses to these shortcomings. Some familiar names in palliative care and medical aid in dying history appear here: Jack Kevorkian, Karen Ann Quinlan, and Nancy Cruzan. Derek Humphries and the Hemlock Society's histories are recalled, as are the other groups that grew in response to the Hemlock Society such as the Caring Friends program, which evolved to its more infamous successor, the Final Exit Network. Cohen describes the well-intentioned activities of this group, including the work of volunteers called “exit guides” who would assist those with severe illness wishing to die. Descriptions of methods and misadventures, including assisted death of a psychotic woman and those with questionable capacity, were memorably disturbing. Readers, especially those wanting to know more about these often-furtive groups, will appreciate Cohen's unveiling of their stories, misguided as some may be.
It is also here that Cohen interviews the opposition group Not Dead Yet, which has protested medical aid in dying assemblies since the mid-1990s. They argue that accepting medical aid in dying would open the doors to devaluing the lives of those with disabilities at best, and at worst would allow the government to liberalize medical aid in dying as a cost-saving measure for ill patients, the poor, minorities, or those with limited cognitive abilities. Cohen found some of their arguments “accurate and insightful.” Another interpretation may be that these are slippery slope arguments, equating the limitations of the chronically disabled to the suffering of the terminally ill.
Having unpacked the origin stories, Cohen then focuses on the legalization of medical aid in dying in several states. Two parallel stories are introduced about women with incurable cancer, both ending in Oregon with use of the state's Death with Dignity law. In one of my favorite parts, Cohen documents the “other side” of the stories of medical aid in dying by exploring the experience of physicians caring for dying patients who have utilized Death with Dignity laws. He relays a physician's experience spanning her patient's disease progression till the moment the patient ingested the lethal dose of medication. The physician felt “responsible to support her throughout the entire experience.” A critical point is that these patients had access to high-quality palliative care services and their decision to utilize assisted death was carefully considered by patients and their families and physicians. Choosing the nature and timing of death itself was therapeutic, soothing the dreadful knowledge of a future of suffering. Those who have doubts of the usefulness of these laws may see their opinions soften; those who are proponents may recognize aid in dying laws increase humanistic connection between patient and physician.
In the final section, Cohen discusses the expansion of medical aid in dying laws, especially in California. He argues that medical aid in dying laws lack the nuance to address patients with dementia, and opines based on his psychiatric experience that those with primary psychiatric disorders should not be granted medical aid in dying. He also lays bare the limitations of our field in alleviating suffering, “sometimes we just can't cure the underlying disease, and sometimes we just can't fix the symptoms.” Finally, he provides a personal answer to, “what if it was me?”
Readers who care or advocate for patients nearing death will find their understanding of those who choose to die deepened and nuanced. As a psychiatrist, my views for availability of assisted suicide for psychiatric patients have shifted to align with Cohen's—the looming risk of a psychiatric patient's wish to die actually being a wish to be killed is large. However, a hard stop of not offering death with dignity to any patient with a history of suicide attempt or mental illness seems excessively restrictive and flexibility is needed. After I finished the book, the words of existential psychiatrist Irvin Yalom ran through my mind: “Though the physicality of death destroys us, the idea of death may save us.”
Footnotes
Acknowledgment
I thank Christopher Jones, MD, assistant professor of medicine, Hospital of the University of Pennsylvania, for his help with editing and revisions.