This issue of Law, Medicine & Health Care on life or death choices, so skillfully put together by Alexander Capron and based on ASLM's conference last September chaired by Professor Capron and Joanne Lynn, grew out of the Supreme Court's decision in Cruzan v. Director, Missouri Department of Health.

At the time of the Supreme Court decision Nancy Cruzan was in a persistent vegetative state (PVS), a condition in which a person exhibits motor-reflexes but evinces no indications of significant cognitive function. Nancy Cruzan's biological existence was being sustained by the provision of technological feeding and hydration. Hospital employees refused, without court approval, to honor her parents’ request to withdraw artificial nutrition and hydration.

A recurring lesson in the debate about forgoing life-sustaining treatment for patients with neurologic syndromes is the need to understand the medical realities in such cases. Those of us in the neurological sciences spend a great deal of time working with these cases on a daily basis—trying to define the medical facts and educate ourselves, the public, and the courts. This article will discuss the medical and neurological facts regarding patients with severe and permanent neurological impairment, focusing only on one form of medical treatment: artificially administered nutrition and hydration. The concern of this paper is not the patient's wishes, the family's wishes, or the decision-making role of other key players, but the medical conditions in which it is ethically appropriate to withdraw or withhold artificial fluids and nutrition.

The process of dying, ultimately, is an experience that will be common to us all. Considering the current trends in health care, I would guess that most of us give more than a passing thought to how that final phase of life will be played out on a personal level. Undoubtedly, that image is shaped by our attitudes and experiences. In addition each of us recognizes that we have had or are likely to have an impact on the dying in our role as family or friend, health care provider or interpreter of the legal or ethical issues. As a member of a hospice team, I have personally cared for hundreds of terminally ill patients, and based on these experiences, I present the following observations regarding the process of dying, with and without feeding and fluid by tube.

J.R. was a successful business executive until AIDS intervened; within an eight month period, he was forced to give up both his position and independence because of severe peripheral neuropathy which left him minimally functional and in constant pain.

A recent case report described a 62-year-old woman who had suffered a stroke and subsequently had global aphasia, hemiplegia, and could not respond consistently to yes-no questions. She remained hospitalized for four years and throughout this period was irritable, uncooperative, and often refused food. Her care providers considered it very likely that she was depressed and treated her with antidepressant medication, but these drugs did not have beneficial effect.

Her situation subsequently deteriorated. She refused food and water to a greater extent and lost 22 pounds over one month. At that time electroconvulsive therapy was instituted. Thereafter, presumably responding to electroconvulsive therapy, she became pleasant and cooperative and drank and ate heartily.

First, I am a trial judge on D.C. Superior Court—a court of general jurisdiction. Thus, my personal experiences and approach are grounded in the intense and heart-rending world of live testimony and real human beings—not the rarefied appellate atmosphere of cold transcripts and brilliant analytical arguments.

To put some of my remarks in context, and to present a totally atypical situation which raises all the analytical issues of Cruzan, I would like to describe a real case—one that I actually tried—about 10 years ago, involving a committed patient at St. Elizabeths Hospital—a large local hospital for the mentally ill. I will call him Vladimir—he was a real person, not a faceless mental patient. Vladimir had escaped from the repressiveness and brutality of pre-Glastnost Russia—to the freedom of the West. Sometime after locating in America and working here, he became mentally ill and was hospitalized.

When the United States Supreme Court upheld the decision of the Missouri Supreme Court that it was not in the best interests of Nancy Cruzan to die of dehydration and malnutrition by withholding from her food and fluids provided by tube the result was deplored by many legal and popular commentators.

The criticism suggested a wide range of values and reasoning that were reflected in the various briefs filed in the U.S. Supreme Court in support of reversing the Missouri court decision. The objections might be placed in three categories: the medical, the legal, and the ethical.

The medical rationale for reversal of the Missouri Supreme Court categorized provision of food and fluids by tube as a “medical treatment” and, hence, subject to practices that pertain to forgoing other, more obvious forms of medical treatment, such as use of respirators or chemotherapy.

With the Nancy Cruzan decision, the post-Reagan Supreme Court continued recreating America's legal landscape by transferring traditional rights from its citizens to state legislatures and state officials. Attorneys Bopp and Marzen see Cruzan as a cause for celebration. The more common view is that it is a hollow acceptance of the technological imperative that requires all Americans to engage in extensive damage control. Given the composition of the Court, constituted by President Ronald Reagan to overrule Roe v. Wade, Bopp and Marzen correctly note that the result in Cruzan was “practically inevitable.” But its inevitability does not make its consequences any more desirable than the devastation caused by an inevitable tornado or tidal wave. This article summarizes the Cruzan case and suggests ways to contain its potentially destructive force.

After I was named Chief Judge of New York State, a position previously occupied by one of the noblest of jurists, Benjamin Cardozo, I went up to look at my new chambers and there was my new desk—the desk that had been used by Benjamin Cardozo. And I said to a friend of mine, “Just think of it, I will be seated and be using and will have Benjamin Cardozo's desk.” And he said, “Yes, but remember, 50 years from today, it will still be Benjamin Cardozo's desk.” We have through the likes of Benjamin Cardozo inherited a jurisprudential history in New York State.

The question that we now grapple with is a question which many states have had to face and the decisions from the state courts are diverse and often controversial. We were all waiting for the United States Supreme Court, that fountain of wisdom, to set the guidelines, so that we would have a standard to which we would look and adhere.

After I was named Chief Judge of New York State, a position previously occupied by one of the noblest of jurists, Benjamin Cardozo, I went up to look at my new chambers and there was my new desk—the desk that had been used by Benjamin Cardozo. And I said to a friend of mine, “Just think of it, I will be seated and be using and will have Benjamin Cardozo's desk.” And he said, “Yes, but remember, 50 years from today, it will still be Benjamin Cardozo's desk.” We have through the likes of Benjamin Cardozo inherited a jurisprudential history in New York State.

The question that we now grapple with is a question which many states have had to face and the decisions from the state courts are diverse and often controversial. We were all waiting for the United States Supreme Court, that fountain of wisdom, to set the guidelines, so that we would have a standard to which we would look and adhere.

Judges, like lawyers, love to make disclaimers. So, at the outset, I disclaim any expertise in medicine or bioethics. My views are those of a generalist, a judge who has been required to decide cases involving bioethical questions such as the termination of medical treatment.

As Chief Judge Wachtler has explained, the New York Court of Appeals, like the Supreme Court of Missouri in Cruzan, has decided to require clear and convincing evidence before permitting the termination of life-sustaining treatment for an incompetent patient who is not terminally ill. Other courts, including the New Jersey Supreme Court, have reached a different conclusion.

It is not my purpose today to persuade you that the position of our court is correct. Instead, I propose to look at the Cruzan case to see what it does and does not tell us about the identity of the decision-maker and the standard for decision-making in the termination-of-medical-treatment cases.

This paper discusses the obligation of acute care hospitals and emergency services to treat patients. Since care rendered in these settings is, of necessity, provided by health care professionals, not buildings or programs, the obligation may be twofold. First, are there obligations for hospitals and emergency services to offer treatment? Second, do health care professionals practicing in these settings have an independent obligation to treat? How has the Supreme Court decision in Cruzan affected these obligations?

The tradition in this country has been that private hospitals had no obligation to treat patients, as opposed to public hospitals which were frequently set up for the very purpose of treating patients who had no other access to care. Over the years, statutes and case law have limited the rights of private hospitals and physicians to refuse to treat patients.

Just over a year has elapsed since the decision of the Supreme Court of the United States in Cruzan. In the year prior to and since the decision there have been a substantial number of articles in the medical literature that have discussed the possible impacts of the decision on medical care along with suggestions as to how to avoid the more onerous consequences. These analyses are constrained by the lack of any direct measurements, an activity that is itself complicated by other events such as the publicity surrounding episodes of assisted suicide and so-called mercy killing. In this paper we will limit our focus to how the decision in Cruzan is likely to affect the doctor-patient relationship, especially in the critical activities surrounding decision-making about the use of life sustaining treatments.

We presently are not really leaving withdrawal of treatment decisions to families and there are good reasons why we ought not to do so. To see why this is, we need to focus on what is special about PVS cases as opposed to other kinds of medical cases in which we are forced to make life and death decisions.

One thing which is very special about PVS is the fact that it is a condition which intuitively pushes us to rethink, once again, society's definition of “death.” We have already changed our definitions of death to include situations in which respiration and circulation continue but the “whole brain” is dead. Defining death to include irreversible PVS would merely require extending the definition to include situations where the brain stem is functioning but the neocortex is dead. There are, of course, obstacles to overcome in extending the definition in that fashion.

I want to approach this difficult topic not from the professional perspective of a lawyer, but rather as the person I am in multiple relationships: wife, mother, step-mother, daughter, and step-daughter. I would suggest to you that none of us can avoid thinking about the role of families in making decisions for incompetent patients without viewing the questions that arise through lenses created by the roles we play in multiple relationships. I would also suggest to you that none of us can avoid thinking about the possibility of becoming incompetent ourselves without thinking about the relationships we have with our families.

My remarks here will be addressed primarily to the Cruzan decision, so they will be most obviously applicable to patients in a persistent vegetative state. However, I intend for my reflections to apply to decision-making about all incompetent adult patients.

Here's what was sitting on my desk on my first day of work for Senator Jack Danforth last summer:

August 19

Liz-

Here is something you can start on when I am in Wyoming. Maybe you could begin pulling together some thoughts and material. Perhaps someone at YDS could give you some help. However, please don't attribute any conclusions to me as I have none.

What are the ethics of extending the length of life?

We cannot artificially end life (thou shalt not kill), but how about artificially extending life? Is that always good, sometimes good?

Is it good to extend the life of a senile 90 year old who wears diapers? How about “neonatal care”—for a baby who would otherwise die? What's the difference in these two cases, or should we have a difference?

In ethics, is keeping people alive the highest good? Should our priority be to keep people breathing?

Is it “playing God” to make distinctions on the basis of quality of life? Do we owe a lesser degree of care to the comatose patient than someone else?

In Cruzan, the Supreme Court held that the refusal of treatment is a constitutionally protected right and that the methods for permitting its exercise should be crafted by the laboratory of the states. In June 1990, when the court ruled, there already existed a large and complex body of law concerned with the refusal of treatment which differed, sometimes considerably, from state to state. Generally, withholding or withdrawing life-sustaining treatment has been accepted by the states, but different systems of justification have been used.

Competent people are able to make decisions to refuse any form of medical treatment, regardless of their medical condition; competent people can also prepare written instructions describing the medical treatment they would want to receive in the future if incompetent, which have been endorsed by both state courts and legislatures.

Three years ago I first surveyed state court decisions and laws governing the withholding or withdrawal of medical treatment. The decision of the United States Supreme Court in Cruzan v. Director, Missouri Department of Health on June 25, 1990, makes it timely to review again state law developments because a majority of the Court announced in Cruzan that it will leave to the states the question of what legal requirements may be imposed on decisions to discontinue treatment for incompetent patients. Justice Rehnquist, writing for the majority, explained that the Court's deference to state decision-making is grounded in the fact that “state courts have available to them for decision a number of sources—state constitution, statutes, and common law—which are not available to US.” Although the opinion makes clear that Missouri might have authorized the family of Nancy Cruzan to decide to terminate medical treatment for her, a majority of the Supreme Court refrained from holding that Missouri is constitutionally required to do so.

For a dozen years, my clinical practice has been largely with dying patients, my academic pursuits have focused on medical ethics, and my public service has been mostly at the interface of medicine and law. One would think that I would have “done the right thing” long ago and signed a living will. I have not. This essay is meant to illuminate my reasons. Some of my reasons may apply to others, and I will also mention some concerns that affect others but not me. However, I do not oppose the growth and development of advance directives. Rather, I hope to open the public and professional discussion of how to make decisions for incompetent adults in order to include more varieties of formal and informal advance directives and to force policy-makers to consider how to make decisions for incompetent adults who have no advance directives.

As a physician, I do use advance directives, both formal and informal, with many patients in all of my clinical settings.

Nationally, the number of hospital ethics committees grew dramatically during the 1980s. The motivation for establishing such committees, however, was not only internal but included court cases, federal regulations and a Presidential Commission report urging the establishment of such committees by hospitals.

While each of these external forces added to the pressures for hospitals to establish their own ethics committees, the establishment of these committees was voluntary in every state until 1987 when the Maryland Patient Care Advisory Committee Act became effective. The Act requires all hospitals within Maryland to establish their own patient care advisory committees or ethics committees, as most hospitals refer to them. Specifically, the Act provides that at the request of a petitioner, these committees must offer advice in cases involving individuals with life-threatening conditions. The committee must consist of at least four members, including a physician, a nurse, a social worker, and a hospital's chief executive officer or designee.