End of Life Care & Where to Draw the Line

Intractable disputes in end-of-life care are a problem of unyielding complexity and decreasing rarity. That much I understand. But as the Community Ethics Committee studies these disputes with a hope of providing guidance from a voice outside the medical profession, finding something useful to say is further complicated by the lack of a simple definition for a central term: medical futility.

And so I’m looking forward to reading “Wrong Medicine: Doctors, Patients, and Futile Treatment,” a second edition by physician Lawrence J. Schneiderman and philosopher Nancy Jecker and newly published by Johns Hopkins University Press. 

So far, all I’ve read is Thaddeus Pope’s review of “Wrong Medicine” in the American Journal of Bioethics. Few understand the problem like Pope, the blogger and law professor recently named director of the Health Law Institute at Hamline University School of Law in Saint Paul, Minnesota.

Pope opens his review with questions that underscore the enduring complexity of medical futility: “When may physicians refuse to provide medical interventions that might prolong the patient’s life? When should they refuse? When must they?”

According to Pope, the authors hope their work encourages and informs discussion in the medical profession and in the larger society about goals of medicine and the very nature of the doctor-patient relationship at the end of life. Here in Massachusetts, voters this fall will decide whether they want physicians and other carers involved in assisting suicide. So if this new edition engenders wide discussion, it is indeed timely.

In addition to that, the authors offer useful definition for medical futility. They encourage physician deference to patients and surrogates in assessing risks and benefits, and say autonomy should be overridden only when benefit is lacking. These definitions provide some clarity around the divergence of best interest and autonomy, and so hold great promise for the CEC’s work.

Pope writes: 

First, Schneiderman and Jecker offer a qualitative definition. They argue that treatment is inappropriate when the patient is permanently unconscious or otherwise unable to appreciate the effects of medical treatment. Without awareness and the ability to participate in the human community, such patients are not “persons” but mere “biological bodies.” Relying heavily upon Greek and Roman sources, Schneiderman and Jecker argue that physicians must treat only persons, not bodies.

Second, Schneiderman and Jecker offer another qualitative definition. They argue that treatment is inappropriate when it can only sustain the patient in the intensive care unit or acute care hospital setting. Because these patients are totally dependent upon medical technology, they are “preoccupied” with their illness. Like permanent unconsciousness, this preoccupation precludes meaningful participation in the human community and, therefore, the possibility of treatment conferring a benefit.

Third, Schneiderman and Jecker offer a quantitative definition. They argue that a treatment should not be offered when it has not worked in the last 100 cases. In fact, the authors concede that they are not wholly committed to this specific numerical threshold. Rather, they are committed to the proposition that “the line must be drawn somewhere.”

That last phrase brings to mind the Oscar Wilde quote: “Morality is like art, you have to draw the line somewhere.”

And the phrase “biological bodies” is remindful of Atul Gawande’s insightful writing about the  “warehoused oblivion” of the contemporary ICU.

Schneiderman and Jecker can only help the CEC further its understanding, and maybe as a result have something useful to say. In reading Pope’s description of the qualitative definition in “Wrong Medicine,” it’s impressive how well it holds up even in the light of recent indications of  misdiagnosis of vegetative state.