I have written about 80 percent of a short book designed to help people, particularly those of an advanced age, position themselves to minimize the chance of a bad death. Let me amend that, I have written 80 percent of a “shitty first draft.”
As my unofficial book coach Debbie has told me it is time to “put a stake in the ground” and move this project “over the goal line.” Mixed metaphors aside, she is correct that I should engage a professional editor (and I have recently done so).
I fear this action will have two results: it will drain my bank account and it will crush my ego. I hope that a third result will be a good, short book. The title will be some variation on “A Better Death.” We have dismissed “Circling the Drain” or “Approaching Room Temperature” but are still considering “The Boomer’s Guide to the Last Trip”- as suggested by a neighbor who is a best-selling and award-winning author.
It would be hard to get significant agreement on what constitutes a “good” death, although my father might have pulled it off. He lived a long and rich life. He died at home, comforted by his eldest child. His death was painless.
His decline was slow and his debility progressive but this allowed for many visits. He saw all his children in the last weeks of his life. He said goodbye in his own time and in his own way. He saw all his grandchildren in the last few years of his life. He met each of his great-grandchildren at least once.
It is easier to define a “bad” death. My definition of a bad death is that of an elderly person, unconscious and on life support in an ICU, who has had unnecessary or excessive treatment for a disease or condition that arose because of unrealistic expectations, overoptimistic physicians, and perhaps a disengaged family.
The book will be divided into three sections. The first section will discuss the commonalities of the six chronic diseases that account for most of the deaths in America. In the second section of the book, I want to explode some myths about American medicine, particularly how and when it is practiced at the end of life. The third section will deal with the practicalities of an exit strategy.
The practical aspect of the book will deal with how elderly patients should position themselves to avoid aggressive medical therapy at the end of life. By recognizing the terminal phase of their various illnesses, including age-related frailty, elderly patients will learn what treatments to avoid and what actions they can take to minimize the likelihood of a medicalized death.
The sentimental aspect of the book will interweave the story of my father’s decline and death. It will focus on what went right or wrong with his decisions, how they were rationalized and how they could have been improved.
Because his family was unified behind his beliefs and because he was competent to the end, he did not need to optimize the interlocking pieces of Do Not Resuscitate status, a well-crafted Advance Directive, and POLST (Physician Orders for Life Sustaining Treatment) programs. But the elderly patient who lacks a supportive family must understand these pieces and have a well-trained health care proxy or they are likely to be treated beyond the point of a “natural death.”
Although most of the principles outlined in my book will be applicable to younger people with a terminal illness, I do not presume to tell people when they should give up. Instead, by coupling practical decisions with an understanding of disease trajectory I want older people to see when they can no longer benefit by the best aspects of American medicine and how they can avoid being trapped in some of the worst aspects.
The risk / benefit ratio of aggressive medical therapy balanced against prolonged good quality of life is easiest to see when advanced age is a major part of the equation.
Wish me luck. And if you have end-of-life stories you’d like to share, please leave a comment or email me.
Stepping into the Void After 31 Years (June 1, 2013)