Who decides? An ethics case consult for Terri Schiavo.
What lessons might we take away as palliative care clinicians or ethics consultants? I might summarize as follows: As has been widely discussed elsewhere, the importance of advance directives, designation of proxy decision makers, and nuanced discussions with those potential proxies is of utmost importance--even for young adults. Be as clear as possible about diagnosis and prognosis. Rely on those with the greatest expertise and the least potential conflict of interest. Be honest about the limits of medical certainty and the diagnostic and prognostic possibilities. Separate reality from what loved ones or special interest advocates might wish were the reality. Efforts to resolve disputes among families or between families and care providers ought to remain private, and focus on the patient at hand rather than broader social or political agendas. Ethics committees or independent mediators work toward "win-win" outcomes and may help avoid the polarized, "winner-take-all" approach of litigation. Medical facts are not value-free and do not add up to a universally agreed-upon conclusion in the manner of a mathematical equation, but are viewed and interpreted through the lens of each participant's perspective. In the space of this essay, I can offer only a brief nod to the field of narrative ethics, but the interested reader will find a rich body of literature regarding this concept on which to base his or her own ethical conclusions regarding this case.