The Inevitable: Dispatches on the Right to Die by Katie Engelhart
by Jeannine Burgdorf
St. Martin’s Press 2021
Physician assisted death (PAD), a term often used interchangeably with medical aid in dying (MAiD), has been a recurring headline in newspapers across the country since 1997, when Oregon passed the Death with Dignity Act. Most recently, New Mexico became the ninth state to pass medical aid in dying legislation. Those nine states, plus the District of Columbia, have passed laws allowing terminally ill patients, usually with less than six months to live, to secure and self-administer drugs to “hasten death.” The legal and moral perspective underlying these laws is that care, even when palliative, need not be prolonged, if death is inevitable and expected to happen organically in six months or less. By shortening the treatment this offers the dying person the promise of less suffering, as well as limiting demands on the medical system. It also offers one the possibility of choosing when to die before one becomes incapacitated. The promise in choosing when to die is the possibility of a “good death,” one which may reduce the experience of physical and mental decline at the end of life, while decreasing the burden of watching a protracted decline before death by the dying person’s family and friends.
Katie Englehart’s debut book, The Inevitable: Dispatches on the Right to Die, makes no promises about what a good death is or who deserves one, rather she presents the right to die movement through the stories of the people who are living and dying in it. In the prologue, Englehart lays out that the book is not polemical, it is a “collection of stories, conversations, and ideas.” Retold vividly and compassionately, these personal stories, deftly interwoven with research, give nuance and depth to the complexities of the right to die. I live in a state without right to die laws, and before reading this book I had only the slimmest awareness of this topic. Englehart covers a lot of information regarding the right to die movement and laws in the U.S. and abroad, without making the book a dry history on the subject.
The book opens with the story of a woman who purchased euthanasia drugs from a veterinarian in Mexico. She picked an age and promised herself she would not live beyond it, explaining “there are two types of people in the world, those who want to deal with death and get some control over it, and those who don’t want to think about it…I can’t not think about it.” This story, of a person who was not facing a terminal illness and did not live in a state with MAiD laws, illustrates the limited choices available to people who want to have a good death, one in which they have autonomy and want to remain in control.
The story of Maia Calloway, a woman with multiple sclerosis (MS) and a long history of mental health misdiagnoses, threads its way throughout the book and is far and away the most complex. Her years-long struggle within the medical system parallels her desire to end her life with a good death. She spent her savings and inheritance paying home health aides and moving to Switzerland to utilize that country’s assisted death laws. While there she kept postponing her death date as she struggled with guilt about suicide, anger at her illness, and a “psychic sense of incompleteness” before returning to Colorado. Noting that people with MS are 50 percent more likely to be poor than the general populace, Engelhart notes, “Maia imagined living in poverty forever and the thought of it made her want to die.” Back home, she lived on $750 a month from Social Security and food stamps, reading disability rights’ blogs in which the idea of assisted suicide is seen as erasure: “better dead than disabled.”
The Inevitable is an empathetic account of the first-hand stories of people living with the end-of-life choices we will all face, interwoven with ideas and facts about the current state of medicine, law, and cultural attitudes about being sick, poor, and old. Englehart’s reporting and storytelling on the issue of end-of-life care reveal how sick Americans die: most under palliative care after doctors have done all they can do to treat them. Those in states with assisted death laws may be permitted to die on their own terms, while others take death on their own terms without cover of law. Englehart doesn’t make assertions about whether a death can be good, free of the ravages of sickness and aging, shielding our loved ones from watching us suffer. She does craft a powerful and thought-provoking narrative of what choices we may have when the inevitable time comes for each of us.
Bio: Jeannine Burgdorf is a writer and storyteller. Her short fiction about death and grief have appeared in Signal House Edition, New Reader Magazine, and the anthology Writer Shed Stories Vol. 2. Her nonfiction appears in the Chicago Review of Books.
Ed. Note: The right to die is a complex, fraught topic. This book review is not intended to offer a balanced narrative on the subject, nor does it necessarily reflect the views of INELDA or this publication.