In her book The Good Death: An Exploration of Dying in America, Ann Neumann challenges the idea that we must extend human life at whatever cost–financial, physical, emotional or spiritual. I came into this book the same way Neumann did. We provided the intimate work of caring for our dying fathers, the in-home care that allows zero privacy and leaves zero pride. My father may have had a “good enough” death under my roof while Neumann’s father had a “good enough” death at a hospice facility, but our journeys meandered similarly along confused pathways. However, The Good Death is not the end-of-life care examination I preconceived; it covers a great deal more territory.
Neumann’s experience caring for her father is rough and personal. She says it is easier to explain the work of mourning than the emotion of it. In other words, if Neumann and I ever meet, we are more likely to swap stories about the legalities of disposing human excretions than the emotional complexities of administering care to someone we love while that person takes swats at us.
Accordingly, Neumann takes a step away from her story to discuss the history of hospice and outlines the cost of futile care. “Suicide and accidents aside, death is increasingly becoming a series of treatments, therapies, drug courses, and experimental trials that address–or prolong–the remaining illnesses.” As a result many people don’t wish to face these efforts. “Assisted suicide”, “aid in dying”, “euthanasia”, and other terms for the decision of people who choose death rather than to fight death have connotations that are telling of how that person feels about the practice.
I like the way “death with dignity” sounds. After a lifetime contemplating suicide, that option was no longer on the table for my dad. He wanted to live and he told me so. My father chose to live. He chose to live without more surgeries, radiation or other painful treatments. He chose quality of life over quantity of days. I respect him for that, though The Good Death challenges my assumptions about quality of life and proximity of death.
As Neumann breaks down the players involved with end-of-life decision making, things get complicated. Medical care is not a private decision between patient and doctor–not even between patient, family and doctor. The government, the medical establishment, corporations and religious institutions interject their “beliefs” into the doctor-patient relationship via law, policies and social movements. It takes a savvy and energetic dying person to advocate and invoke a death their way!
Neumann leaves off institutional barriers to choosing one’s own death and looks at other forms of resistance such as pro-life rallies and the organization Not Dead Yet. Neumann introduces readers to Bill Peace, aka Bad Cripple. Bill’s story is less about his diagnosis of hydromyelia than it is to the world’s reaction to his diagnosis. As a child in Catholic school, a nun told him, “You no longer need to do homework because you are one of God’s special children.” This attitude frustrates me and society at large still perpetuates this type of backwards thinking! Children with disabilities didn’t have the right to a free public education until the Individuals with Disabilities Education Act (IDEA) in 1975 and many “school choice” options don’t require equitable treatment. Maybe that’s another rant for another time, but it’s why Bill’s story speaks to me. His story says that people have a preconceived notion about what it is to live with disability and that maybe his life is not worth living.
When Neumann turns her attention toward people, as she does with Bill, her writing is most compelling. She clearly enjoyed writing about Sarah Palin’s address at a Life and Hope Network gala. Of any string of facts or storylines in The Good Death, I most appreciate Neumann’s discussion of viewpoints that run in opposition to her own. For example, she clearly does not agree with the mission of Not Dead Yet but she gives them a full and fair hearing. In this way, Neumann opened my mind to new ways of thinking about death with dignity and how “normal” people fear the disabilities that others live with every day.
The last group of the dying that Neumann reports on are those behind bars. The Eighth Amendment of the U.S. Constitution guarantees that prisoners have access to medical, dental and medical care. The rest of us know this amendment as the prohibition against cruel and unusual punishment. It has quirks. One of them being that a person on death row can’t kill themselves or die by natural causes. We wouldn’t want them to cheat their sentences! Neumann writes a compelling page and a half about how complicated compassion can be. People don’t feel it the same way for everyone, though they may have similar situations. Again, her sharp examination of her own belief system emerges as a strength.
The relentless presentation of facts in The Good Death can invite distraction, regardless of the fact that Neumann’s writing is tight and to the point. This would not deter a motivated reader, but the book has the greatest impact when it tells the story of people. Neumann concludes there is no good death, but there is a good enough death. Having seen it up close, I hope she’s right.
Incidentally, those of you who read Smoke Gets in Your Eyes: And Other Lessons from the Crematory
Title: The Good Death: An Exploration of Dying in America
Author: Ann Neumann
ISBN: 978-0807080627
Publisher: Beacon Press
PubDate: February 2016
I received a complementary copy of The Good Death from the publisher.
What a great book review!