The Morality of Hastening & Prolonging

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 www.paulcmclean.com 

Palliative Care and the Art of Listening

In "Lives Less Ordinary," Jerome Groopman's powerful and timely look at the complex care of chronically ill children, the first child profiled is being treated at Boston Children's Hospital for a rare disorder of the mitochondria.

This is an interesting coincidence, as a disputed diagnosis of mitochondrial disorder has been central to a nasty recent custody dispute between the hospital and another family. 

Among other things, that was a cautionary story about the consequences of communication and trust badly broken down. An ethics consult was called, and recommendations made, but it is unclear how well they were heard. 

And so this story by the endlessly insightful Groopman serves as a welcome view into doctor-patient/family communication at its best. And the families sure need it.

Groopman’s story, in the January 20 New Yorker magazine, is subtitled "Chronically ill children are living longer than ever. How should we care for them?"

In answering that question, the starting point would appear to be: first listen, then do no harm. That is, get to know the patient and what he or she values. So it is no coincidence that Groopman, professor of medicine at Harvard Medical School and chief of experimental medicine at Beth Israel Deaconess Medical Center in Boston, focuses on the palliative care specialty. Taking the time to know the patient is a key aspect of the palliative speciality.

Don’t miss Groopman's story. Here is a taste of what you'll find.

The PACT, or the Pediatric Advanced Care Team, is a group of physicians, nurses and social workers from Boston Children's Hospital and the Dana-Farber Cancer Institute. PACT, Groopman writes, "is among a growing number of hospital programs that ... have three goals: to coordinate care, help families make difficult decisions about treatment options, and ease the child's pain and suffering."

One PACT member is Christina Ullrich, an attending physician at both Children's and Dana-Farber. This comment from Ullrich stood out to me: "As a doctor, you focus on pathology and physiology; you learn pharmacology and how to order drugs. The social and psychological dimensions of care are often not well respected. But I learned that you can't treat a child's pain effectively without understanding her anxiety and her social situation. It's not just a matter of writing a prescription."

Groopman also provides insight into why palliative remains marginalized, undervalued and widely misunderstood: in four years at Harvard Medical, students get only a half-day training in hospice and palliative (which overlap but are hardly the same specialty): ER staff, likely with no real knowledge of the patient, cast judgmental looks at the sometimes high dosages of pain-killers; and, because palliative stresses relationship, it is a more complicated billing than, say, surgery or chemotherapy.

Because palliative specialists get to know the patient and family, they develop a relationship that can become especially important when hard choices must be made amid diminishing treatment options. 

Near the end of his story, after Groopman briefly describes the process of completing a form known as MOLST, for medical orders for life-sustaining treatment, a patient's mother says: "If his heart stops, it's time to let Avery go. He has fought such a hard fight; he will let me know when he is ready to go."

Only in a relationship built on trust can such a conversation take place.

Another coincidence: While writing this story, I found a piece by Nathaniel P. Morris, a student at Harvard Medical who is emerging on the Boston Globe opinion page as a voice to pay attention to. Here he assesses the recent controversy over custody, communication and diagnosis at Boston Children’s.

Amid ambiguous demands and expectations, Morris writes, “health care providers must discern when to apply the powerful instruments at their disposal and when to carefully hold back. It often just comes down to clinical judgment, a skill I’ve yet to learn but I’m hoping to find in my education.”

Here’s hoping he doesn’t miss that half-day on palliative.

(Paul C. McLean, author of "Blood Lines: Fatherhood, faith and love in the time of stem cells," also blogs at www.paulcmclean.com.)

Life, Death & Governance

You think these are challenging days for the governor of New Jersey? Life is getting especially complicated for the governor of Ohio -- in the myriad meanings of the word.

Ohio Governor John Kasich is well respected by abortion opponents. and last summer signed both restrictive new pro-life laws and what was considered the “most pro-life budget in history.”

But it is not the value of life at its beginning that is increasingly demanding Kasich’s attention; instead it is how, and whether, the state punishes or forgives those who kill.

Early Thursday, Ohio executed the admitted rapist and murderer of an 8-months-pregnant woman. What made this newsworthy, beyond the simple fact of state execution, was the means employed: a new lethal cocktail of drugs, used for the first time with little real sense of how much pain they would inflict or how long they would take to complete the task.

Why is this of interest, on a blog devoted not to politics or criminal justice but to community understanding and perspectives regarding medical ethics? Because of the focus on the continuum of how life is valued in American society, and how prominent the extremes have become.

While Ohio balances its belief in the justice of capital punishment with charges that it lacks a humane means to carry out the executions, hospitals in both California and Texas in recent weeks, and for very different reasons, have mechanically sustained patients determined by doctors to be dead. (Nowhere are end-of-life politics in sharper focus than Texas.)

Pardon the leap, but the most recent study by the Community Ethics Committee, to be submitted soon to the ethics leadership of Harvard Medical School and its teaching hospitals, concerns transparency and decision-making in listing for organ transplantation.

And without going into details of that unfinished study, the very first question we asked ourselves was whether organ transplantation itself is a social good. The answer was yes by consensus -- but only if the organs were ethically harvested, and the selection of recipients both equitable and just.

That is to say, our one-word answer was unanimous but enormously complicated and nuanced.

Consider another case awaiting action by Kasich. The execution of the rapist and murderer of a child was postponed till July while the state determines whether it can take his organs for transplantation, as the man has requested. This would make an executioner of the transplant surgeon.

In this case, is organ transplantation a social good? That is the question facing Kasich, who has been quoted by the Columbus Dispatch as saying: “Ronald Phillips committed a heinous crime for which he will face the death penalty. I realize this is a bit of uncharted territory for Ohio, but if another life can be saved by his willingness to donate his organs and tissues then we should allow for that to happen.”

But wait, there’s more, as they say on the ads on cable news channels.

Another prisoner is asking Kasich for clemency. John Wise is not on Death Row, but instead is serving six years for killing his wife, a diabetic with chronic heart disease who was in intensive care following a triple aneurysm. “Although I had nothing but good intentions,” the 68-year-old man said in a sworn statement, “that is no excuse." Mercy is not an acceptable defense for killing in Ohio. 

According to the Associated Press, “A doctor testified that Barbara Wise wasn't terminally ill and appeared to be responding to treatment.” 

The story did not say what, precisely, the doctor meant by “responding to treatment.” I’d like to know more.

Only days before, CNN.com called doctors “optimistic” about the condition of Jahi McMath, a day after the 13-year-old’s death certificate was signed by a California coroner.

Again, I’d like to know more, because life and death are somehow becoming harder to define, and optimism is not a word I often associate with a corpse. 

(Paul C. McLean, author of "Blood Lines: Fatherhood, faith and love in the time of stem cells," also blogs at www.paulcmclean.com.)