Katie Englehart wrote a book trying to figure out what people mean by “death with dignity.” She proposes two very different ideas. One is that dignity is related to both autonomy and authenticity. “People find dignity in authenticity,” she writes. “They find it in consistency and equilibrium and a kind of narrative coherence. It mattered to people 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.” Dignity, by this view, is deeply personal, different for every person, and requires that a person be able to make choices for themselves. Death with dignity, then, is a death that the person plans and carries out in a way that reflects their own values about what makes their own life worth living.
Englehart takes about a very different idea of dignity in an NPR interview about the book. There, she suggests that, for many people, dignity was about being able to go to the bathroom on one’s own. Dignity related to continence. Diapers were the ultimate indignity. She says, “For many, dignity equated precisely with sphincter control.” She found it troubling that “people fear the loss of bodily control more than they do nonexistence.”
These two very different ideas of death with dignity reflect a floor and a ceiling. One is an aspirational ideal for who people want to end their life, a final assertion of control over the universe and our existence (or non-existence) within it. It is dignity as a positive act of will. The other is a floor, rather than a ceiling, a worst-case scenario of a life in which a person has lost everything of value and become weak, infantile, totally dependent on others, passive.
Englehart’s book shows how neither of these concepts of dignity map onto the criteria that policy makers use and encode into law to determine who should have legal access to assisted suicide or euthanasia. Policies focus more on whether a person has a terminal illness or whether they are in intractable pain, both somewhat subjective judgments. Englehart points out that those laws are quite cautious and leave out many people who might want to choose when and how to die. After all, she writes “the laws apply only to dying people who are going to die soon anyway. They speed up an inevitable process, but not by much.”
Her book focuses on a different group of patients, those who didn’t meet criteria for a physician-assisted death but who still wanted to die because they were chronically ill or in pain or old and tired or becoming demented. The book tells detailed stories about six individuals – two doctors who provide aid-in-dying and four people who “wanted to die because they were suffering unbearably – of, respectively, old age, chronic illness, dementia, and mental illness” but who didn’t meet the current legal criteria that would make them eligible. Engelhart gains unprecedented access. She talks to doctors, patients, and family members and shows how people struggle, disagree, vacillate, and ultimately come to decisions. The stories are messy and tangled. The people were motivated by mental anguish, loneliness, love, shame, long-ago traumas, or a yearning for the approval of Facebook followers. The people she describes are not “pure characters, likeable, relatable, or even emotionally legible.” The tangled messiness is the book’s strength. Englehart is a great storyteller with an eye for the idiosyncrasies that make people memorable. We get to know these doctors and patients. We feel their struggles. She was able to gain access to intimate scenes. People allowed her in. They confided in her.
Englehardt starts with the story of “Betty.” Betty is a seventy-something woman who lives alone in New York City. Her husband recently died of cancer and was heavily sedated for the last 3 days of his life. Betty enjoys life. She has friends. She recently attended her son’s wedding. She goes to the theatre, reads books, and does Pilates. She isn’t sick or suffering. But if she does get sick and, as a result, cannot do the things she loves, she hopes that “she could summon enough resolve to kill herself.” Betty travels to Mexico and procures the sedative Nembutal from a veterinary clinic there. She keeps it on hand and plans to use it sometime in the future. Betty is typical of the sort of person who seeks assisted suicide or euthanasia. “The vast majority of people who choose a physician-assisted death are not in pain. They worry about losing their mental capacities. They worry about being a burden on loved ones. Sometimes they worry about money.”
Many books and papers about end-of-life decisions are by the doctors. Timothy Quill wrote as a doctor about a patient who wanted him to help end her life. Ira Byock wrote of his work with hospice patients. Kious and Battin wrote from the perspective of a psychiatrist and a philosopher about the dilemmas of evaluating and caring for people who want to die. Englehart’s approach is different. She is neither physician, patient, philosopher, or family member. She is, instead, determined to tell stories that illustrate the evolution of end-of-life policy. She analyzes famous court cases, explains policies, and reviews books about aging and Then she talks to real people around the world who are struggling to decide how their lives should end and the real doctors who take care of them.
People can and do disagree deeply about the principles behind either legalizing or criminalizing euthanasia or assisted suicide. In 2019, the AMA struggled to articulate a professional policy that would harmonize the differences among its members. They ultimately opted for a compromise by which the organization would “support physicians and the patients they serve in making well-considered, mutually respectful decisions about legally available options for care at the end of life in the intimacy of a patient-physician relationship.” In other words, doctors could assist suicides in jurisdictions where it was legal.
Engelhart’s book shows us, in the granular detail of meticulously observed case-studies, what a “well-considered” and “mutually respectful” decision might look like. She discovered that people are often more uncertain or indecisive than they understand themselves to be. One hospice doctor told of a patient who met criteria for physician-assisted death and said she wanted it. “But she kept asking her doctor, you know, is today the day I should do it? And so he'd ask her, is today a good enough day? And she would say, yes, it is. And every day, is today a good enough day and it was, and every day was. And then she died a natural death.”
She points out some odd features of the situation today. Assisted suicide is legal for some people but illegal for others. The criteria vary from state to state and country to country. In the United States, the doctor cannot administer the lethal medication so the patient must be strong enough to take it themselves. In Belgium, a patient can decide, when she's diagnosed with dementia, that she wants a physician-assisted death. The hitch is that she has to move forward with the death when she still has full mental capacity, when she's still fully in control of her decision. And this means, practically, that she will, if she wants an assisted death, will die at an early stage of the disease. Patients know that if they wait too long, they'll miss their chance.”
Most importantly, Engelhart shows how the decisions are inevitably communal ones. Suicide is a solitary act. Medical-aid-in-dying takes place within a relationship. The regulation of medical-aid-in-dying is, in part, an attempt to ensure that nobody will have to die alone, that the community will be there for people who face this existential dilemma. The communal nature of modern death suggests a different view of dignity, one that is implicit in the book. The least dignified death may be the solitary, secretive one.