Mickey's Assignment Desk No. 8: The New York Times recently featured a two-part series, "Planning for Death," by Denise Grady. Grady told "achingly familiar" stories of patients "denied peaceful passing" because the American health-care system ignored relatives' wishes and living wills and tried to prolong their lives even though they had "little or no hope of recovering." Grady's report cited specialists in the growing field of "end-of-life care," who recommended "advance care planning"--discussion between doctors and their patients, when the patients are healthy, of what to do should a medical crisis occur.
It was all enough to give you the creeps. Grady's effort was by no means the worst example of what might be called a "good death" piece--crusading reporting that has, as its underlying premise, the idea that a central problem of our medical system is that it keeps too many people alive for too long, denying them the peaceful "good death" their loved ones desire for them. "We have to start telling each other stories about good dying," says Dr. Joanne Lynn, in an earlier NYT effort ("Many in U.S. Denied Dignified Death"). Maybe. But what's needed more is a strong contrarian response to the dominant "good death" consensus.
Points to make:
1) Sometimes people who have "little or no hope of recovering" survive. ("Little"? Do we really want to say of people with "little hope" of recovery that they might as well not even try? The Lakers had "little hope" of winning the seventh game of the playoffs with a few minutes to go.) Good anecdotes shouldn't be hard to dig up. They can't help but be more convincing than Grady's lede anecdote, involving Bertha Hyman, who at "the age of 91 ... had trouble breathing a few days after surgery for a broken hip." Her nieces were "horrified to find that she had been put on a respirator." But surely even 91-year-olds who have "trouble breathing" sometimes recover after a stint on a respirator--Grady gives us no indication that Hyman's condition was obviously terminal.
2) Anyway, doctors aren't necessarily right about which conditions are obviously terminal. Grady herself notes a study (by the aforementioned Dr. Lynn) showing that 50 to 70 percent of patients given six months or less to live by doctors outlived the prediction. Grady then ignores the obvious issue raised by Lynn's study--since doctors can't really tell when someone is going to die, maybe there is a trade-off: Foregoing treatments too early, to allow patients to "die well," will also substantially shorten life for some of them.
3) The "culture of medicine" needs to be changed, suggested the earlier Times report. "Too often ... death is viewed as a failure of medicine." Hmmm. I sort of like having a medical culture that views death as a failure. It's better than the alternative, which is ...
4) The possibility that "good deaths" might be valued because they save money. Right now, Grady's article suggests, many hospitals needlessly prolong life because they can charge for the procedures; they view dying patients as "cash cows." But, given the ongoing pressure to cut costs, how long will that last before it's replaced by the opposite imperative? Gary Eisler, a terminal cancer patient whose wife had recently died, described the potential danger in the Wall Street Journal three years ago:
It cost our medical insurance about $100,000 for the last couple of years of Bonnie's life. The American Cancer Institute estimates that in 1996 the total cost of cancer was $104 billion, including $35 billion in medical costs ... Imagine the billions that could be saved by shaving a few points off those figures.
Grady notes disapprovingly that "[o]nly 17 percent" of Americans die in hospices. It's not too hard to imagine a medical future in which an ever-higher percentage of patients are shunted into hospices because they're cheaper--since they don't do everything to try to prolong life that hospitals do. And some people will die earlier as a result. Maybe we need an aggressively anti-death medical culture to guard against this cost-cutting possibility.
5) Even if hospitals don't push people into hospices, and leave it to the patients, do we want those patients to feel pressure to die before they have to in order to save everyone money? "My wife never knew what her treatments were costing; if she had she might well have felt she was a burden," wrote Eisler. How long will it take for this issue to surface in "advance planning" for death?
6) There's also what might be called the aestheticization of death. Grady reports the experience of a daughter whose mother was dying:
"I had her in my arms, and that's the way I wanted my mother to die." But doctors called guards to remove [her] from the room, began trying to resuscitate [her mother] and placed her on a ventilator. "They had no right to do this."
Is it too nasty to suggest that loved ones don't have the right to have their parents die "the way" they "want" them to die?
7) Good Death medicine often forces relatives to make life-and-death decisions about their loved ones--decisions at which they are amateurs and which they are expected to make at a time when they are already emotionally upset. Mightn't imposing this burden on relatives itself leave psychological scars? For every relative spared the trauma of seeing his or her mother live "five extra days of miserable life," how many will be haunted by the thought that their mother died too soon because in a moment of weakness they agreed to a "DNR" order?
8) Do we really want doctors to follow Good Death procedures by spending time "over several office visits" discussing with perfectly healthy patients (and the "proxies" chosen to "make decisions when the patients cannot") the various grim scenarios ("permanent coma, severe dementia, severe stroke and terminal illness") that might or might not require "advance care planning"--even though those situations may never arise?
9) The Good Death cause has now led to the creation of a new specialty within the medical profession, with its own conferences, textbooks, and workshops. Is there now a bureaucratic imperative to uphold the Good Death dogma, and with it the need for more specialists in "end-of-life care"?
Assigned to: Ron Rosenbaum, who wrote a terrific critique of the "Death 'n' Dying" movement for Harper's a few years back.