Advance directives promise patients a say in their future care but actually have had little effect. Many experts blame problems with completion and implementation, but the advance directive concept itself may be fundamentally flawed. Advance directives simply presuppose more control over future care than is realistic. Medical crises cannot be predicted in detail, making most prior instructions difficult to adapt, irrelevant, or even misleading. Furthermore, many proxies either do not know patients' wishes or do not pursue those wishes effectively. Thus, unexpected problems arise often to defeat advance directives, as the case in this paper illustrates. Because advance directives offer only limited benefit, advance care planning should emphasize not the completion of directives but the emotional 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 fearsome experience of dying.
Flawed in concept and not just use, advance directives provide little control over future care (6, 7, 64). The last-minute objections to comfort care by Mr. Jones's daughter illustrate the many unexpected problems that can defeat advance directives. Thus, I urge deemphasizing advance directives while searching for better approaches to advance care planning. Camus's ideas suggest one approach that stresses honest communication (33, 57, 75); preparation of patients and families for death's harsh and unpredictable reality (7, 66); mutual support; nonformulaic, individualized care; and courageous decision making despite uncertainties. At the end of Camus' The Plague, the main charactera physician named Rieuxreflects on his role throughout the plague epidemic. He realizes that, along with providing care that had to be given "by all who strive ... to be healers," he bore witness to patients' suffering (76). Physicians surely have the duty to fight disease in most circumstances, but physicians always have the still greater duty to see patients and survivors through their suffering and thereby to bear witness to it. Perhaps that greater duty lifts medicine from a mere occupation to a true profession.
Hard to watch, and hard not to keep watching, the HBO documentary "Coma" is not actually about coma but about what comes after. (The more accurate "Traumatic Brain Injury" isn't quite as arresting a title.) A state of profound unconsciousness from which a person cannot wake, a coma provides no information; whatever there is to say about it, there is nothing there to see. It is a dark pool. When the eyes open, the coma ends and the questions begin.
The idea here is simple. Director Liz Garbus (the Oscar-nominated, Emmy-winning "The Farm: Angola, USA") follows four patients at the Center for Head Injuries at the JFK Medical Center in Edison, N.J., over the course of a year, during which time two improve and two do not. When we meet them, all have already emerged into either a vegetative state (awake but unaware) or a state of minimal consciousness (in which a patient fitfully exhibits signs of deliberate response). All are young or relatively young; two fell from great heights, two were injured in car accidents.
Garbus gives a little social-historical context through a medley of clips touching on some of the best-known cases, including Karen Ann Quinlan, Sunny von Bülow, Terry Schiavo and Terry Wallis, who in 2004 began to speak after 19 years in a minimally conscious state. (The subject stays in the news: In March, a Colorado woman awoke from six years in a vegetative state, only to slip away again after three days.