For those of us who work in medical professions it can be enlightening to engage with the observations of a keen thinking “outsider.” The journalist Katie Engelhart has such a keen mind and has given us a luminous book summarizing her intimately annotated interactions with an array of individuals who candidly talk about their planned ways of dying.
As she explains in her introduction: “This book incorporates medicine, law, history, and philosophy but it is not a book of argument and it is not a comprehensive accounting of the right-to-die movement in the United States or anywhere else. Primarily, it is collection of stories and conversations and ideas.”
The stories are rich in detail, the conversations poignant and compelling, and the ideas that emerge serve as an invitation to reconsider certain assumptions and habits in thinking about medical aid in dying (MAID).
For a lot of the people Engelhart interviewed “planning death was often about avoiding indignity, something they imagined would be humiliating, degrading, futile, constraining, selfish, ugly, physically immodest, financially ruinous, burdensome, unreasonable, or untrue.” A slogan shared by many, due to their experience with ailing pets and kindly veterinarians, is: I would rather die like a dog. “Here we were, in the country that spends more per capita on healthcare than any other in the world, and people were begging for a veterinary solution,” Englehart writes.
Often legislation that legalizes medical aid in dying mandates rules for who qualifies and who does not, rules that don’t always make sense. For example, Engelhart offers an elderly woman who is being slowly ravaged by multiple sclerosis and finds the prospect of more inevitable degeneration too much to bear, but who does not qualify for medical aid in dying because the state legislation stipulates a prognosis of death within six months. Her doctors say she could and probably would live longer than that. In the eyes of the law this poor woman is not dying enough, or not near enough to a natural ending.
Another example is the dementia patient who is not suffering physically very much at all, but who asks to die for fear of future suffering. Helping to realize such a lethal longing in this case would be a sort of prophylactic medicine that many physicians reject, even if they generally approve of physician-assisted death. (Dementia, like other mental illnesses, does not qualify as an incurable physical disease, which is another common qualifying condition for MAID.)
Engelhart quotes a Kaiser Family Foundation survey that reports about half of Americans think patients should have more control over end-of-life medical decisions. There is also a growing belief that a rational adult has a right to a peaceful death, a fundamental right that cannot be abrogated or qualified by medical eligibility criteria. That is certainly not the case in the United States now, and Engelhart thinks it is worth asking “whether this is an acceptable and philosophically coherent status quo.”
She poses some novel questions about the status quo:
Doctors are meant to present us with all our options — should they therefore actively present MAID? Or should they not do that because it could indicate endorsement or lack of hope?
Could or should hospitals advertise MAID?
If a doctor refuses MAID, is she obliged to make a referral for the service?
Is MAID better carried out by specialists or family doctors?
The author concludes with a return to the concept of dignity, which is at the heart of her book. The word does not mean only one thing, but there is a thread of meaning in the stories dying patients told. “It is that people find dignity in authenticity.
They find it in consistency and equilibrium and a kind of narrative coherence. It mattered to the people I met that they lived as themselves, as they defined themselves, until the very final moment, even if that meant sacrificing days or weeks or years of life. It mattered how their lives wrapped up. In this way, a chosen death became a kind of authorial act. It let a person play herself out, until the end.”
Psychologists have shown convincingly that people can tolerate extreme distress if they believe they could control the source of the distress.
For the dying person, simply knowing they have access to a means of dying that is foolproof, quick, and painless can be overwhelmingly helpful, even if they never actually use it. Health care providers who understand their fundamental obligation is to alleviate suffering (rather than to extend life at all costs) will find support and good advice for having this kind of conversation with their own patients in The Inevitable.
This is a challenging book and it’s no good to ignore or dismiss the challenge.
About the Author
David Nyberg, PhD, served 12 years as a public member of the Maine Board of Licensure in Medicine, and continues to serve the Board, as a consultant and as Editor-in-Chief of its newsletter. He is a retired member of the teaching faculty in the Maine Medical Center’s Department of Psychiatry.