Until recently, I didn’t realize how drastically the medical world has changed over the lifetime of baby boomers like me. Somehow, I had the idea that intensive care units, for example, have been around forever, when, in fact, they didn’t exist until 1961.
Before 1955 there were few devices like the pacemaker that can keep a heart beating after a mind is gone, nor were their respirators to keep people breathing, nor huge quantities of drugs. Medicare, which pays for much of this, only began in 1965.
What did medical inventions do for us? They extended lives, certainly. But as a nation we became like wild horses suddenly freed, galloping in one direction toward more intervention, more drugs, more hardware. We need to slow down, to turn back, to come into our paddock and rest.
This is the feeling I had after reading “Knocking on Heaven’s Door: The Path to a Better Way of Death” by Katy Butler who speaks this Friday, Nov. 8, at The Avid Reader in Davis at 7:30. When I interviewed her via Skype, she told me that this part of her book — the chapters about technical overreach and how to stop it — is not what people ask about.
Instead, readers are captured — as I was — by the personal story of her parents: her father who, at 85, dies a prolonged, over-medicalized death from dementia and other ailments, and her mother who is able to make different choices and dies two years later without medical intervention, on her own terms.
Readers are puzzled, as I was, by the story of her brothers, neither of whom shared caregiving with her. In a bit of shop talk, I asked Butler how her brothers felt about being included in the book. Butler told me that one brother was fine with everything and helped her edit. The other wanted as little written about himself as possible.
One brother appears under his own name. The other does not.
As a writer, I’m interested in that detail, and as a long-term volunteer at Yolo Hospice, I am interested in the entire book, but my major insight, one that I want to record here and to have my husband and children read — probably more than once — came after I finished the book.
Before I share that insight, I want to say more about “Knocking on Heaven’s Door,” which achieves two ambitious goals. It is a memoir in which Butler tells her story of parental love — lost and later found — in a beautiful and honest way.
It also discusses the American way of death, which involves emergency rooms, last-ditch efforts at chemotherapy, and desperate surgeries that keep most people under treatment or in hospitals until they die.
Some patients are referred to hospice but fully half of them, writes Butler, go on service 18 days or fewer before death, so they receive barely a taste of the gentle, comfort care for which hospice is famous.
Once in my conversation with Butler, I found myself tearing up when talking about my father’s death. I didn’t expect that, and I felt embarrassed. This gave me a sense of Butler’s situation, where people now feel free to ask personal questions and make personal comments because her book, rising on science bestseller lists, invites response. She reports that she often receives emails from people who express sympathy and then tell their own stories, from which she learns.
At its heart, her book is about the struggle to die the way we want to die. Many of us agree on the elements of a good death: we don’t want it to be painful, we don’t want to spend years demented, and we don’t want to burden our families.
Butler shows how big medicine, well-funded by the drug and medical device lobbies, pushes in the opposite direction, keeping bodies going with minds that are dead, taking extreme measures in the last weeks of life, and too-often ignoring or overlooking written orders not to resuscitate. Living past what they would have chosen, people die too late.
There are ways to avoid this.
You say no to treatments, you get your whole family on board, you get your doctor on board, too. You give power of health decisions in writing to the right people and you tell them, very clearly, what you want. You keep the paperwork handy.
Here’s a big problem, though, and this is the insight I reached after I finished Butler’s book but kept thinking about it.
Death is not a dinner party, where if you don’t want to arrive late, you simply show up on time.
When it comes to death, the alternative to dying too late, is dying too early, dying when someone might say, “she could have had more time,” “a pacemaker might have her kept around longer,” or “we lost her too soon.”
Rare is the death where everyone says, “that timing was just right.”
If I manage to die on my own terms, refusing treatments I find extreme, I may, in the eyes of my loved ones, die too early. This could make them feel guilty or bad. I don’t want that. But hitting the bull’s eye is impossible.
Butler’s book is hopeful. With changes in our medical practice and a wider use of palliative care, she says, a good death can come. But not a perfect one.
— Marion Franck lives in Davis with her family. Reach her at email@example.com