We’re at the two-year mark of my life after medical practice. I am taking stock. Here’s what I want to report.
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)
My First Work Day on Sabbatical: Reflections on the Cost of Colonoscopies (June 3, 2013)
I think this is a subject that most boomers think about even as they try not to think about it. As we enter that last “third”, it’s on our minds. We are watching our elders depart and noting the choices. I think this is a great idea– please see it through to the end. thanks, love, alice
Thank you, Alice. Excellent points. We cannot communicate enough about this topic and yet it is routinely avoided. I am aiming at finishing in six months. Keep up the encouragement. Sam
This sounds like a wonderful idea and very much needed. I think it is also highly beneficial to weave in some personal storytelling to allow people to identify more with the ‘technical’ content. As well as being a resource this book can also be a great conversation starter – after all I bet for many families that is the hardest part – just bringing themselves to start talking about it. Maybe you could also offer a free (or modestly priced) downloadable companion ‘workbook’ that people could complete as a family (or individually) that would help them to capture the strategies and details of the plan for TGD (their good death). Best of luck and do keep us updated on your progress.
I appreciate the suggestions, Susan. Right now I have to focus on the next, less crappy, draft. “The Conversation” is a current topic. Starting it is hard enough but continuing it is important too. Thanks and stay tuned. Sam
This sounds like a great book and very much needed in our culture. I like the title “Life Before Death” as something that focuses on how we LIVE as we age rather than how we die. I am glad you are including the story part about your father, those personal stories are where I learn the most.
How we “live” is important. I will keep that in mind. Thank you, Sam
I am not certain if you will receive this email. I know you are no longer in practice, though I would be so grateful for even a 30 minute telephone call […]
You are the only Dr. who ever understood me and my health challenges. I am only curious if you might have some insight on what I am suffering from — no one has seemed to have figured it out. In the meantime, I am still suffering.
Sam, I stumbled across your blog and I am glad that I did! I appreciate your views and will look forward to your book. It will be VERY timely for me.
Kathy, sorry I missed your comment. I look forward to sharing my book with you. It’s not ready for publication but if you have questions please feel free to contact me.
Congratulations on your willingness to address a frightening topic and your decision to share your father’s story.
I look forward to reading your book…and purchasing copies for each of our children.
Roger, sorry I missed your comment. My book isn’t finished yet (I’m in the midst of revising the first draft) but I look forward to sharing it with you.
Sam, is your draft book short enough that I could read it when we’re in ME? I’m thinking we’ll be confronting these issues regrettably sooner rather than later. See you soon! NLH
Nancy, look forward to seeing you soon. Happy to chat with you about my work (and show you a few pages) when you get here.
Dr. Harrington, I stumbled across this blog as I was trying to track you down to schedule a colonoscopy. While I am sad you are on a break from practicing medicine, I applaud your courage both in taking a gap year and writing about death. The death you describe that you are hoping to help others avoid, is the kind my father had last fall. I know there has to be another way. My nephew is a paramedic and always says ” There is only one way off this bus. ” I agree and I think we need to learn to live and plan for how we would prefer our exit to go, as much as we are able. Enjoy Maine. Eat a lobster and pick some blueberries for me. Deborah
Deborah, thank you for the encouragement. I am excited by the possibility of helping even a single person avoid a medicalized death. Sam
I have written some chapters myself for same topic but mine deals with those who will slip away more from memory loss. This is a topic I know professionally for I interact with many clients giving them what for most are their last card punches for quality of life connections. As a physician you have a distinct advantage to communicate a reality from “behind the curtain” that should hit the mark. If you could realign the bad rap the symbolic “pulling the plug” denotes, you will have given many a less heavy heart. Wishing you well..hopefully your new editor will get you to the finish line sooner than later. Best