by Amy Bloom
Random House (March 8, 2022)
I am inclined to call this book a “page-turner”. But how can that be? It is a book about the author’s husband, Brian, who, by the time he is diagnosed with Alzheimer’s disease, is also told that the process of sinking into severe dementia will be rapid. This vibrant man in his 50s is determined to end his life while he still recognizes and can interact with his wife and those he loves.
However, he struggles to find an acceptable path to accomplish his goal. Even if Brian were to move to a state like Vermont, or any of the other nine states plus Washington, DC, where Medical Aid in Dying (MAID) is legal, he would not be likely to qualify. All states have specific requirements for a person to use the MAID process. They must be lucid and able to communicate to two doctors their wishes, as well as the rationale for ending their life, and they must be within six months of death. Most likely by the time Brian would be six months away from death, he would not be lucid or able to communicate clearly and dementia is not always recognized as a terminal illness.
At one point, when it seems there is no acceptable way for him to accomplish his goal, he considers using a gun. But that is an anathema to him, largely because of the negative impact such an act would have on the people he loves.
Amy Bloom is a professor of Creative Writing at Wesleyan University who has written several award-winning books on a variety of subjects. The topic of this book is obviously very personal, as she chronicles her husband’s slipping into Alzheimer’s. However, the book also puts this part of their story in the broader context of their marriage. It is a second marriage for both of them and she includes in the story the joys and challenges of blending two families. A real plus in reading the book is enjoying Bloom’s excellence as a writer.
While Amy Bloom and her husband did not live in Vermont, they also knew moving to one of the ten states or Washington, D.C. where MAID is available would not help them. She rightly says: “The right to die in America is about as meaningful as the right to eat or the right to decent housing; you’ve got the right, but that doesn’t mean you’re going to get the goods.” Brian understood this. Soon after he was diagnosed, he expressed interest in going to Switzerland to end his life. As the weeks and months went on, it began to look like the only viable option.
Amy contacted Dignitas in Zürich soon, and learned that this too, was a complicated process. Dignitas is a nonprofit organization offering accompanied medical aid in dying. As the author describes, “For the last twenty-two years, Dignitas has been the only place to go if you are an American who wants to die and if you are not certifiably terminally ill with no more than six months to live.” However, Switzerland has no interest in allowing depressed patients to take advantage of its “right to die” process. Doctors there want to be as certain as possible that anyone who uses the process is clear thinking, not depressed, and not being pressured by anyone. Bloom learned that Brian needed to provide various documentation, including a brain scan and a report from a psychiatrist. There were requirements that took weeks to satisfy, and 56-year-old Brian was losing agency quickly. He continued to have lucid periods, but the emotional contact with friends and family, including his wife, began to diminish.
Not surprisingly, the way people deal with the end of their lives, including those who do so on their own terms, is very individual. Brian did not want to discuss their plans with others, including most of their family. Virtually no one knew they were getting on a plane for Switzerland. But they got to Zürich, passed the Dignitas face-to-face exams, and then enjoyed a few days in the city that they had loved in previous visits, and went to some familiar places. Of course, it was different this time, but they both clearly felt these were among the best ways they could spend their last days and hours together. And then Brian ended his life under the supervision of Dignitas.
There are several incredibly sad parts of the book. But the author also conveys many happy and intimate moments as this couple thoughtfully negotiates Brian’s wish to end his life on his terms and in a way that is consistent with who he is. Ultimately, this book about a man’s decision to end his life with the support of his wife is not only sad, but uplifting.
Review by David Otto, PCV Board Member
by Green, Stefanie, M.D.
Scribner (March 29, 2022)
Dr. Stefanie Green, president of the Canadian Association of MAID Assessors and Providers (CAMAP) opens her book with the question, “What if you could decide, at the end of your life, exactly when and where your death would happen? What if, instead of dying alone, in the middle of the night, in a hospital bed, you could be at home at a time of your choosing?”
She begins her book with this question because she wants us to know how it can be possible to die as we wish. Canada has a Federal medical aid in dying law that makes it available to any qualifying Canadian resident or citizen. Most of the requirements are similar to those in the United States, including being over the age of eighteen, suffering from “a grievous and irremediable condition” and making the request voluntarily and under no sense of coercion. A major difference, however, is that the medication does not need to be self-administered. Patients have a choice of two methods: a self-administered drink with a health care practitioner standing by to make sure all goes smoothly, or, much more commonly, medication that is delivered by the clinician through an IV. It is the delivery by an IV that is the subject of Green’s book. It is chosen by the overwhelming majority of her patients and she makes a strong case for it.
The IV process involves four medications: an anti-anxiety medication called midazolam that makes the patient feel relaxed and sleepy; a local anesthetic called lidocaine that numbs the vein and is not always necessary, but is used to be 100% certain; a dose of propofol that creates a much deeper sleep, and rocuronium to ensure there is no muscular movement in the body.
The entire process takes eight to ten minutes.
Green , who began her career in general practice and maternity and newborn care, tells the reader what she does, how it works, what she’s seen, and what she’s learned. She introduces us to patients and takes us to their bedside while they die. She chronicles the conversations she hears. In one moving chapter she describes how a husband was ready to die and how his wife disrobed, lay naked beside his naked body, and held him closely as he fell asleep.
Green admits to being challenged by finding the right words to tell people what she “does.” In the beginning, she called medical aid in dying a medical procedure. She shifted to calling each event a “delivery,” comparing it to her maternity background. “At one end, I was helping deliver a baby, usually into life. At the other end, I was helping deliver a person out of intolerable suffering and through to their death. I liked the symmetry the term evoked, the poetry of it. Turned out, my patients like it too.”
There is a lot covered in this well written book, including summaries of where medical aid in dying stands in other parts of the world. She tells the history of getting MAID passed in Canada and of the need to write a clear law. In Canada, she says, “politics, unclear law and fear all played a role.” She writes that we must redefine the word “euthanasia” or else find a substitute. It comes from the Greek eu meaning good or well, and thanos meaning death. The modern understanding in Canada and parts of Europe is that it means the administration of a lethal medication by a health care professional at the request of a competent adult, with the goal of relieving suffering. Canada consciously chose to use the term MAID to avoid the negative connotation.
Green’s book offers a comprehensive view of how the practice of MAID in Canada helps to alleviate suffering, even for patients such as Parkinson’s and ALS patients who typically cannot administer the medication themselves, a requirement that is universal in the US. She has no answer for dementia. She has, however, written a sound book that will inform everyone who wants to understand better what medical aid in dying is.
Review by Susan Gillotti, PCV Board Member