In the September 17, 2014 issue of JAMA Scott Stonington, MD, PhD wrote a remarkable piece entitled “Whose Autonomy?” This short piece should be required reading for everyone in medicine.
Stonington discusses the idea of family roles and puts this in light of his anthropological work in northern Thailand. He uses his fieldwork experience to introduce the idea that, when ill, people may not express their true wishes, but instead play the role that is expected of them by their society. This renders taking a patient at his or her word problematic. One of his examples is of a father dying of cancer who says, “Leave me alone and let me die” but the son says, “No, we are taking you to the hospital and getting you treatment!” Our standard reading of this scenario is: leave the father alone, respect his wishes, and let him die in peace! However, Stonington suggests that in northern Thailand the father does not really want to be left alone to die at home—he says that to fulfill his role of the stoic father. And the son would be remiss if he “took him at his word” because his role is to care for his father despite protests. The point he makes is that this situation is not isolated to northern Thailand, but that elements of family relationships like this exist here in the U.S. as well.
This article is unsettling, because it questions the core of what most physicians these days use as to guide their care of the patient. If we take this story seriously, then we have to dig more deeply and not rely on mere autonomy to sort out the right course of action in a particular situation.
It is my concern that the strong focus on respect for autonomy exacerbates the problem of physicians who think of themselves as “service providers” where the goal is to maximize choices for “healthcare consumers.” This market analogy has been dominant for generations now and is what provides the background for Edmund Pellegrino’s sage writings about the real foundation of the profession of medicine: the fact of illness and the call we feel to respond to those suffering. Once we enter this profession we sign up for an ethics of supererogation—above and beyond what is required of the citizen, or neighbor, or businessman. This article by Stonington reminds us of this by pointing out that “doing the right thing” may be much more complicated than just doing what the patient says.