Once Again, Reality: Now Where Do We Go?

Abstract

It looked so easy. A piece of cake. A slam dunk. A sure thing. How could an idea, patient empowerment, idea so nicely combined everything Americans love--self-determination, choice, patients' rights, the provision of timely scientific knowledge, a legal domestication of death--not work? Yet here we are, some twenty-five years at least after the introduction of the advance directive movement--the principal vehicle for implementing patient preferences--still scratching our heads, tinkering with the fine print, trying to get straight about the last weeks and days of dying life. Once again reality has struck, and it is dismaying. If a project so elegantly designed, so well superintended, so amply financed, could not give patients what they want and need, what--if anything--can do that? In the SUPPORT project, a large bet was placed, designed to test the hypothesis that better communication and better prognosis estimates could bring about an improvement in decision-making at the end of life." I call it a bet because, though the authors of the study, following the impersonal linguistic protocol of scientific reports, do not say they hoped for a different outcome, or fervently desired such an outcome, those sentiments can be read between the lines. What a downer then. Well, perhaps not quite that. As a small but substantial consolation prize, the failure of that bet has produced a rich and suggestive set of papers. The analyses collected in this special Report supplement not only suggest possible flaws in the study, but far more importantly open the door to some renewed and refreshed thinking on the entire subject of patient self-determination, prognosis information, and the culture of American medicine. Not one of the authors seems to doubt the necessity of continuing the struggle to better manage patient care at the end of life. Not one seems to doubt the importance of better thinking and better techniques. Not one fails to grasp the enormity of the stakes here. All that is encouraging. Nonetheless, the very diversity of the response suggests that we still have a long way to go, and--more than that--a mysteriously long way to go. For it should by now be evident that no one fully understands what most patients really want, including the patients themselves; or what it will take to bring about as a rule good communication between doctor and patient; or what is needed to change the practice of medicine and the way it responds to death; or what can be done legally and bureaucratically to change the environment of dying. To be sure, the authors who have written these articles have many ideas, some quite strong, on all of those subjects. It is just that they are all in the same situation as the designers of the SUPPORT study: placing large bets on outcomes that cannot, given reality's mean-spirited ways, be counted in advance as sure things. Every critic of the SUPPORT study, everyone who has a better idea about how to build the perfect patient self-determination mousetrap, should at least learn one lesson from that study: uncertainty and humility. One way to follow that lesson is to resist the temptation to decide, from among the many proposals for the future presented in these papers, which one is the best. More helpful might be, instead, to accept the potential validity of all the proposals and to ask how they might best be orchestrated. For while the suggested reforms and new directions are varied, I detect no irreconcilable conflict among any of them; and all are plausible. There is at least one direction missing from the discussion here, which I will shortly add, but otherwise the challenge is to make them work together, drawing on and reinforcing each other. For the sake of convenience and to jog the reader's memory, let me offer a rough classification of the responses (some of which are overlapping), adding at the end one of my own #5): 1. Criticism of SUPPORT Methodology. …