Family decisionmaking and forgoing treatment: a judicial perspective.

• Author: Shepard, Randall T.

A judicial system that devises concepts for resolving disputes about forgoing treatment at the end of life is very much a part of the society that it serves. One cannot understand the choices courts and judges make without considering the changing roles family members play in decisions about the lives of their loved ones.

Most Americans eventually find themselves called upon to make some kind of medical decisions for parents or grandparents. The advance of medical technology and the concomitant opportunity for prolonging life have made these occasions more numerous, but they are hardly new to the 1990s.

In recent decades, the first substantial decision for most families has been presented at the moment when father or grandmother begins to have difficulty engaging in independent living. The mobility of the modern age is such that when this moment comes it is quite common that the senior member of the family does not live anywhere near the children and has not lived near them for quite a while. In earlier times, children frequently continued to live near the senior members of the family. As families have become smaller and the population more footloose, the probability that one of the two children still live in the old hometown where their parents or grandparents reside is much diminished.

In my own experience, this change in the size and mobility of families means that families with the foresight and resources to plan ahead are sometimes able to solve their immediate problem by arranging for the senior family member to move to a place nearer one of the children. Even this straightforward solution can be a traumatic event in itself. It is frequently a decision reached by mutual assent; the child proposes the idea and Grandmother finally agrees. Grandmother finally moves one or two states away, abandoning the friends, services, and surroundings that provide the context and support for everyday life. It is a move frequently resisted, but it is pretty common in modern America.

Much more difficult is the subsequent task of finding Grandmother a living arrangement that provides closer supervision. Fortunately, the private marketplace has finally produced a variety of facilities that look a lot like independent living. These are congregate homes in which mobile and relatively healthy seniors live under circumstances that permit regular oversight and easy access to medical care, but which do not feature the atmosphere of the traditional nursing home. Such places permit people to move to a safer environment without losing the cherished opportunity to control their own lives. Like the decision to move closer to the children, choosing a particular living arrangement is a choice frequently made by mutual assent.

As life progresses, sometimes the decision to move must be made for the senior and not with her. As one of my best friends said recently, "My wife and I made the most difficult decision of our marriage last night. We moved her mother to a nursing home." He need have said little more to describe for his listeners the anguish of the experience.

Most families have reached and crossed these points of decision when they finally arrive at the most anguishing decision of all. There is no more difficult challenge in life than the one confronting a family that finds itself in the midst of a hospital crisis, called upon to make a critical medical decision for a critically ill parent. These are the decisions that have become the stuff of modern litigation and political debate.

By the time they confront such a crisis, Americans have learned a fair amount about the nature of the modern American medical system. Their knowledge of it informs their own reactions and influences the legal and political concerns that animate the present debate.(1) I would describe the lesson of these experiences in a simple way: It is a whole lot easier to get into the medical system than it is to get out of it. A recent encounter with excruciating but passing pain from a kidney stone reminded me of this fact. Presenting myself at the local emergency room suffering from pain that had already begun to subside by the time I arrived, I found myself within an hour lying flat on a gurney, intravenous tube attached to my lower arm, wheeling down a hall toward the X-ray room. "Eventually, this will be a regular part of my life," I thought.

By the time most people get to be sixty or sixty-five, they have endured problems far more harrowing than mine. Their children have had just enough medical experience themselves to know what will probably be in store. As a result of these learning experiences, people have a great deal of anxiety about what may be done for them or to them when a critical medical event occurs.

It is this anxiety that causes seniors by the millions to fill out living will forms and prompts many others to pay their lawyers to draft similar documents specialized to individual state laws and personal situations. This anxiety is also felt in the body politic, prompting legislators to introduce proposals for governing how these problems will be handled.

Why the Judge?

I lay out the nature of these common experiences at some length because I believe they also influence the reactions of courts (or rather the reactions of judges) to their own participation in litigation about life-sustaining medical treatment. This truth is another variation on the observation of Justice Felix Frankfurter that "there comes a point where this Court should not be ignorant as judges of what we know as men."(2)

Preparing for a moot court several years ago, I read all at one sitting most of the appellate decisions about forgoing treatment. I was struck by the fact that amidst the...