I’ve been busy, and this blog has been quiescent because of it. First I spent a month at the Vermont Studio Center, working night and day on my next project, a novel about the Cuban Revolutionary hero Camilo Cienfuegos and a woman somewhat like my mother. I drove to Denver for a Christmas with my son and his family, then flew to Havana from Miami with a literary research group.
On the flights home I read a book by an Emergency Room physician and bioethicist named Robert Martensen, A Life Worth Living. I recommend it. The subtitle is “A Doctor’s Reflections on Illness in a High-Tech Era.” In other words, it’s about care toward the end of life, especially when the medical care extends lives that to many of us (perhaps from a safe distance) seem hardly worth living.
The best parts of the book, to me, were the stories of individuals facing a difficult end. Not knowing, of course, when death would come, but dealing with it and making crucial decisions about how much care they wanted.
We’ve all thought about this, haven’t we? At one end of the spectrum is that misleading line, “If I get to that state, just shoot me.” No one, as I’ve written before, is going to shoot us. At the other end of the spectrum is the bad fall we might take one day when we are deep into our own dementia. A telephone call is made by whoever is looking after us, the squad arrives and swings into their normal, predestined mode: Take care of the patient.
Martensen imagines how the death of his own father might have been prolonged (for better or worse) if the paramedics had arrived to find him unresponsive and not breathing. “Whether or not [his wife] told them of his Do Not Resuscitate status, the paramedics would likely have put in an artificial airway—an endotracheal tube—and begun ventilating him. They would have done so because he possessed vital signs—a pulse and blood pressure—and emergency field protocols specify ventilatory support when they are present, regardless of the circumstances.”
You can have your DNR tattooed on your forehead, but this will not necessarily change the paramedic practices. Then, in the ER, you will almost certainly be put on a ventilator, and admitted to the Internal Care Unit. Once the ventilator is installed, it’s not easy to get it taken out—and so the patient finds himself, if conscious of his own condition, in a state that he worked hard to avoid. Living wills and notarized DNR documents to the contrary, it’s easy to wind up in an ICU with machines extending one’s life in a way the patient had tried to prevent, back when he was hale and articulate.
Among the penetrating stories in the book is one of a doctor who is diagnosed with cancer in his forties, and who eventually withdraws from all medical treatment, feeling stronger because he has withdrawn from “the system.” He gives up Phase II cancer drug trials, he gives up repeated CAT scans to follow the progress of the cancer. The added months of life such treatment might give him—or perhaps it would only be days, or perhaps no time at all—are not worth as much to him as his own sense of empowerment and freedom.
The author cites studies that support his personal view that when it comes to late-life care, “more usually means less. Specifically, sick elderly people who endure the aggressive treatments that our “best” medical centers routinely administer near the end of their lives tend not to survive any longer than those who avoid such treatments.”
If I were diagnosed tomorrow with cancer, I’m sure I’d head straight for an oncologist and whatever treatments she recommended. But I imagine that somewhere closer to the end I’d give it up and accept my coming demise, and try to avoid the extensive, futile medical endeavors designed to keep me living another few days or weeks.
But I’m also aware that many have thought this and later changed their minds. I might too. Who can say what we’re going to do when we’re actually looking death in the eye?
A good book: Robert Martensen’s A Life Worth Living.