This post was originally published here January 31, 2014.
You could teach a class in medical ethics using only “Five Days at Memorial” and “Knocking on Heaven’s Door.”
And someone really should, ideally to first-year medical students. Their future patients also would be well-served to consider the lessons of these books — seminarians, too — but let’s start with physicians-to-be and the world they are inheriting: One in which 31 percent of Americans believe doctors should “do everything possible in all circumstances” to save a life, according to Pew Research, and as many or more believe doctors should be legally allowed to help people die.
Imagine it will be your job to somehow square those two realities, and to communicate skillfully enough to know and understand which patient you are advising and treating.
And welcome to med school.
The authors of “Five Days at Memorial” and “Knocking on Heaven’s Door” are journalists. Sheri Fink also is a physician who has written a profound, epic story of medical care in the catastrophe of nature and neglect that was New Orleans in the immediate aftermath of Hurricane Katrina. Katy Butler repeatedly traveled from Northern California to Connecticut over six years to support her elderly mother in carrying for her father, a stroke victim whose time finally ran out in spite of his pacemaker’s persistent pulse. (“Five Days at Memorial” is a finalist for the National Book Critics Award in nonfiction.)
Both stories will break your heart, but their higher purpose is to open your eyes. One is a compelling look at what we ask of doctors and nurses in the most extreme of circumstances. The other is full of what we neglect to ask at our peril. Both effectively consider contemporary medical ethics, underscore the importance of engaging and understanding them, and walk clear-eyed into the minefield that is mortality in America.
What is so valuable about these books, and why I link them, is they are exceptionally well-told cautionary tales for a pluralist culture in which mortality can be seen more as a challenge to be overcome than a common fate.
The books do not moralize, they are not sermons on right or wrong, not even in the case of patients euthanized in New Orleans (a grand jury did not indict). You will make your own judgments, but you’ll make them with facts, real information, and even a sense you were there.
The truth is, patients were killed at Memorial, in extreme circumstances, but not of their own choice. Whether you justify, condemn or grudgingly accept the actions of the doctors involved will depend in part on how well you understand their circumstances, and providing that understanding is something Fink does astoundingly well. (I, for one, oppose giving physicians a legally sanctioned role in directly and intentionally hastening patient deaths, and yet I’m untroubled by the grand jury’s decision not to prosecute in the Memorial killings. If there’s good away around ambiguity in such a case, I haven’t found it.)
“One of the greatest tragedies of what happened at Memorial,” Fink writes, “may well be that the plan to inject patients went ahead at precisely the time when the helicopters at last arrived in force, expanding the available resources.”
“Five Days at Memorial” tells many stories. One is the experience of patients and medical staff absorbing the horror wrought by Katrina and resulting in the killing of patients who, it was believed, amid a sense of systemic neglect, could be neither evacuated nor abandoned. Another details the attempt to apply justice for the killings. The third gives a historic sense of medical ethics, from Hippocrates through Tuskegee, and considers the events at Memorial in this context.
Given widespread distrust, fueled by disparities and inequities of class and race, government officials and medical professionals alike can be wary of engaging the public with difficult ethical issues that might stoke “death panel” fears. It’s one thing to look at the events of Memorial in retrospect, quite another to imagine decision-making in a hypothetical scenario.
And so an important lesson of “Five Days at Memorial” is that medical professionals cannot afford to exclude the public from such questions just because the answers are messy and volatile.
That’s what I found so compelling in the grand jury’s recommendation against prosecuting the medical professionals involved in euthanizing patients. Amid all the post-Katrina finger-pointing, the grand jury provided insight into what an informed public believed. And that informed public was forgiving.
Other studies cited by Fink indicate a public understanding that ideas considered offensive and unacceptable in normal times — for example, rationing of ventilators — could become unavoidable in a catastrophe.
“Sometimes individual medical choices, like triage choices, are less a question of science than they are of values,” Fink writes. “In a disaster, triage is about deciding what the goals of dividing resources should be for the larger population — whether maximizing number of lives saved, years of lives saved, quality of life, fairness, social trust, or other factors. The larger community may emerge with ideas different from those held by small groups of medical professionals.”
Fink quotes Roger Bernier, a senior advisor at the US Centers for Disease Control and Prevention, as saying that non-experts “are in the best position and in the most nonpartisan position to weigh competing values.
Why, then, is the public not engaged more regularly?
“I’m not sure we believe in democracy in America,” Bernier tells Fink. “We don’t make good use of the people. We don’t make good efforts to access public wisdom on public policy choices.”
Where was the public wisdom in developing the pacemaker? It is easy to see that the public interest has been served by a device adding years to many lives, and yet while “more time” is accepted as the benefit, consideration of quality of life in that added time has been left to retrospect.
Emphasizing this insight is part of the gift of “Knocking on Heaven’s Door,” which resonates with the lament: I wish I knew then what I know now. As such, it is a story to help others “know now,” before fateful decisions are made. It is a reminder to ask the right questions and testifies to the importance of patient advocacy.
And in a highly personal way, “Knocking on Heaven’s Door” argues that “more time” is not necessarily the moral and right answer. What I “know now,” aided by Butler’s insights, is that the answer is forever ambiguous when the question involves medicine and mortality.
Consider, as Butler does: “Not having a pacemaker would not have guaranteed my father a quick or easy death. But having a pacemaker deprived him of his best chance for one.”
Butler writes this story with a wrenching beauty, and packs so much into a sentence.
“My parents were contemplating more than a pacemaker,” she writes. “They were contemplating how much suffering they would bear in exchange for more time together on earth. And they did not know it.”
Butler creates a revealing chronology of technology that through the latter half of the 20th century and start of the 21st has prolonged lives and the dying process. As Butler writes, development of the pacemaker was but one advance that led to the creation of a whole new specialty in medicine, intensive care, beginning with the conversion of a hospital ward in Kansas City, Kansas, devoted to care of the elderly and impoverished. As critical, or intensive, care, it has become a place of remarkable care of lives most precarious, but it has become as well a place that speeds the burnout of nurses caring for the death-defying unconscious while families pray indefinitely for miracles.
Unlike Fink and “Five Days at Memorial,” Butler is very much a witness and a participant in her story of the consequences of medical decisions inadequately considered and understood. Installing a pacemaker gave Butler six years with her father that she wouldn’t have had without it; but other aspects of that gift were being witness to a merciless toll on her mother, her father’s painfully prolonged process of dying, and how much simpler it is to install a life-saving technology than to disconnect it.
There is no precise point at which it is clear that Butler’s father should have died, but the time passed long before his aged, confused, tired being stopped waiting for a lithium battery to expire.
I found it perplexing, and troubling, that a cardiologist would consider the act of turning off a pacemaker to be unacceptably “playing God” when installing it in the first place was not. It’s as if the physician himself hadn’t actually thought this through, which is perhaps more common than I’d like to think.
“Nothing much will change,” writes Butler, who spread charred electric coils with the bone and ash of her father, “until we pay doctors and hospitals when they appropriately do less as well as we do when they inappropriately do too much.”
Cross-posted at http://www.medicalethicsandme.org