Decisional Humility and the Marginally Represented Patient.

Abstract

There was a cartoon circulating during the national debate about Terri Schiavo (Davies for the Journal News 2003). A couple is seated in a lawyer’s office with their attorney seated behind a desk. On the wall next to a diploma is a sign advertising living wills. The caption from one of the clients is “…& in the event that either of us is being kept alive by artificial means, we don’t want Jeb Bush to get involved.” The couple clearly do not want the state or bureaucrats stepping in and imposing their judgment in this private realm when they have lost decisional capacity. And yet that seems to be the default position offered by Dr. Berger (2020) in his argument about what he terms representedness. As we see the argument, he wants to deny non-intimate surrogates, family members of standing the opportunity to engage in surrogate decision making and seemingly substitute a cadre of well-meaning, well-intended bureaucrats.

Citing scholarly papers, many of which date to the 1980s and 90’s during the heyday of bioethics scholarship on surrogate decision making and advance directive literature, Berger places his faith in the ethics committee, chaplains, and social workers over family members who have become distanced from the patient. Clearly, there is a role for clinical ethicists to step into the fray when the patient is truly isolated and incapacitated, that is when he/she has no relatives or friends to represent them. But the same cannot be said when there are available surrogates. Does Berger really think we—the professional class—is better positioned for this role than family members, even when they have lost contact from the patient?

Berger offers a vignette of a nephew who hasn’t seen his uncle for six years. In his formulation, he opts for salvation from a bioethical bureaucracy. We find this troubling. On the basis of a very thin narrative reed—on a hypothetical which virtually has no content whatsoever—the nephew is excluded. How do we know that this is justified, that he should be excised from the decision-making process? The story, as told is incomplete, more a parable than a case report (Fins 1998). Maybe the nephew was close to the patient as a child. Maybe the patient was a favorite uncle long ago. Or he might have been especially close to the nephew’s parent.