Authentic values and real interests: Daniel Sulmasy's new model of end-of-life decision making

These are very brief notes from a talk I attended at the Osler Center Day this past Friday.

Sulmasy presented what he calls the traditional tripartite view of EOL decision making, each part of which suffers from significant defects. The top of the pyramid, the optimum, is customarily held to be the living will (LW). However, living wills are both too vague ("no heroic measures") and too specific ("CPR but no counterpulsation"), involve interpretation of texts, and aren't done by most people anyway (current living-will rates are about 15%, per Sulmasy).

The next best choice is held to be substituted judgment (SJ). Sulmasy pointed out that SJ (a) places significant psychological pressure on families, with attendant sequelae; (b) is difficult to instruct family members in, because its meaning is not really clear; and (c) isn't what most people, when asked hypothetically, want to happen when they're non compos mentis anyway.

Sulmasy pointed out - interestingly enough - that the legal pedigree of substituted judgment goes back to English law, when questions like "What happens when a crazy person inherits a bunch of money?" or "Can a lunatic be made to donate a kidney?" had the courts looking to SJ for answers. (The case law had names like A Lunatic, but I can't remember the references. The big Columbia Law reference which got the SJ ball rolling in the 70s is here.)

Then at the bottom of the heap is Best Interest of the Patient, which no one likes because it's (a) paternalistic and (b) difficult to discern (Sulmasy didn't give (b), but I think it's obvious).

Sulmasy made the point that while LWs are supposedly optimum, everyone acts like Substituted Judgment is better.

So what's the better model? Consider the patient as a person, says Sulmasy, and think of the authentic values of that person. Then take into account, further, the clinical facts of the case. Then, keeping in mind the real interests of that person in light of their values and the facts of the case, try to come to a decision which respects all of those.

This is where my paraphase probably falls flat. But the key here that Sulmasy emphasized is (a) the neo-Aristotelian nature of his enterprise, i.e. emphasizing full flourishing; and (b) the skepticism of Sulmasy towards "Western, liberal" thinking which values autonomy above all else.