Would you like to be resuscitated?

I was honored this week to deliver a Grand Rounds lecture to our Department of Medicine on the topic of "advance directives."  This was curious, in a way, since I am expert in neither the law nor bioethics.  But I do see physicians and nurses and patients and families struggling with end-of-life care, and I have participated in many organizational efforts to assist all of them in what are inevitably gut-wrenching decisions.  In all but a few cases the issue is the same - how to do the right thing in the face of radical uncertainty.  When is intervention heroic, and when is it ill-advised?  What do we mean by futile care?  When does prolonging life become prolonging death?

In the last thirty years, a sea change has come over American healthcare that involves the concept of patient autonomy.  "Autonomy"-- the recognition that all persons have a moral right to self-determination including the absolute right to decline any medical intervention -- stands beside two other dicta: to do always what is in the patient's best interest, and finally the Hippocratic proscription against doing harm.  An "autonomy movement" has gathered momentum in recent years for a variety of reasons:  our changing understanding of medical error and potential harm, the commercialization of healthcare, a consumerist movement and growing concern fueled by sub specialization that the doctor doesn't always "know what's best" for me.

Promoting autonomy is the basis for all informed decision making.  It is also the basis for those efforts at end-of-life planning that include recording our wishes (I do not wish to be resuscitated, or intubated, or to undergo tube feedings, etc...if doing these things will prolong my death, but not my life...) or delegating the authority to make those decisions in the event that I cannot make them myself.   Examples of the former include, of course, the Living Will and, more recently, MOLST (standing for Medical Orders regarding Life Sustaining Therapies).  Creating a Health Care Proxy, by contrast, serves to identify a healthcare "agent" who is in possession of knowledge about my values and goals and is formally empowered to act on my behalf.  Many advance directives actually combine these two approaches.

These efforts have not been without their difficulties.  Only a minority of individuals execute such advance directives; many are vague or contradictory.  Appointed healthcare agents, often close family members, are often disinclined to carry out the wishes of their loved one when that means limiting end-of-life interventions.  And too often, such wishes and preferences were never discussed.  In a thoughtful paper entitled "Controlling Death:  the False Promise of Advance Directives" (Annals of Internal Medicine 2007),  Dr. Henry Perkins suggests that these are no mere technical shortcomings.  Rather, he suggests, they are fundamental to the radical unpredictability of life and death.  Perkins writes:


Because advance directives offer only limited benefit, advance care planning should emphasize not the completion of directives but the emo- tional preparation of patients and families for future crises. The existentialist Albert Camus might suggest that physicians should warn patients and families that momentous, unforeseeable decisions lie ahead. Then, when the crisis hits, physicians should provide guidance; should help make decisions despite the inevitable uncertainties; should share responsibility for those decisions; and, above all, should courageously see patients and families through the fear- some experience of dying.


As I conclude this post, I am struck by the coincidence involved.  I had not intended to address this topic during the observances of Easter and Passover - each of which focus on life and death, transition and spiritual transcendence.  But what existentialists see as courage in the face of life's "absurdity,"  others would experience as faith in an ineffable purpose and Reality.  Putting this author's point more broadly, it would seem that the proper role of health professionals is to find patients and families "where they are" and provide attentive presence at the end of life.  Perhaps the timing of this post is not accidental after all.  Happy Easter and Happy Passover.