by Katy Butler (Author),
Scribner (February 19, 2019)
Award-winning journalist Katy Butler, an authority on end-of-life issues, has written a book that all of us need. The Art of Dying Well is a practical, easy to read guide to making the best of our later years, even when we have a chronic medical condition. It is sensibly organized according to how far along the spectrum of frailty we are, with suggestions of the steps we need to take. The stages she defines are Resilience, Slowing Down, Adaptation, Awareness of Mortality, House of Cards, Preparing for a Good Death, and Active Dying.
Each chapter in the book has a defining checklist. When we are Resilient, we may find that “aches, pains and health problems are annoying but not limiting” and we may wonder why they make the numbers on credit cards “so small and fuzzy.” During the second stage, Slowing Down, we may be taking at least three medications regularly and find that blowing out the candles on our last birthday cake was a little harder. Awareness of Mortality enters when doctors won’t discuss our prognosis; they will use terms like “chronic, progressive, serious, advanced, late stage or end stage,” when what they mean is “incurable, worsening, worse yet, and approaching end of life.”
House of Cards is a wake-up call; the zest for life is melting away, we can’t walk half a mile unaided, and we’ve lost ten percent of our body weight in the past year. It’s followed by Preparing for a Good Death, which we should be doing when doctors say they wouldn’t be surprised if we died within a year, or cancer has returned after two or more rounds of treatment and we decide not to undergo more. Active Dying, the last stage, is what it sounds like; we stop eating, need to be helped to the bathroom, and may nap for hours, speak little, and keep our eyes closed.
You might think that all of these chapters are depressing to read, but that is not the case. Butler is positive throughout, helping us see that our experiences are normal and need not be something to fear. The end-of-life stages are part of a natural process of losing energy. We are born with energy and may have lots of energy well into our later years. But then it begins very imperceptibly to slip away, for each and every one of us. That is when this book becomes invaluable. It contains straightforward information on how to talk to our medical providers and how to be in charge. There is a 16-page glossary of medical terms that, for this reviewer, was especially helpful. I did not know about “frequent flyers” – crude hospital slang for a frail older person who repeatedly comes to the emergency room – or “cowboys” – doctors who will take inappropriate risks – or “moral distress” – the emotional and spiritual pain of medical staff, forced by hospital protocols or by patients’ families, to do things to patients that cause suffering and violate the clinician’s moral values.
Butler is non-judgmental about medical aid in dying (MAID). She reminds us that it isn’t new, that throughout history, “some medical professionals have quietly hastened death when they believed that their moral obligation to relieve suffering overrode a blanket duty to prolong life.” She cites Louis Pasteur, the father of the germ theory of disease, who a hundred years ago helped five farmers in France who’d been bitten by a rabid wolf die by lethal injection. She writes of the growing number of states in America where it is now legal, and of how “planned, voluntarily timed deaths… can be as calm, poignant, and sacred as any other.”
Butler’s The Art of Dying Well has been praised by Barbara Ehrenreich, author of Natural Causes, Ira Byock, author of Dying Well, and Lucy Kalanithi, widow of Paul Kalanithi, author of When Breath Becomes Air. It has been praised by a member of my family who, when I gave it to her, stayed up all night reading it. When I want to know what I should be doing next, I will check my behavioral symptoms against Butler’s lists. She will be an ally as I try to figure out how to have an honest conversation with a younger doctor, whether to call 911, and how to make my death a sacred rite of passage instead of a medical event.
Review by Susan Gillotti, PCV Advisory Committee Member