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From Quinlan to Jobes: the courts and the PVS patient.

From Quinlan to Jobes: The Courts and the PVS Patient

On a rainy October morning in 1975, scores of reporters from as far away as Tokyo fought for scarce seats in the magnificent ceremonial court-room of the 150-year-old New Jersey Superior Court building in Morristown. There, before a chancery judge used to determining routine matters of guardianship and contract law, attorneys for a father were prepared to plead that he could advance his vegetative daughter's constitutional and common law rights to refuse what was believed to be life-sustaining medical treatment.

As a case of legal and media first impression, the saga of Karen Ann, Joseph, and Julia Quinlan was guaranteed minutes each night on network newscasts, as well as front-page coverage in newspapers from the New York Times to The Washington Post, from the (Morristown) Daily Record to the Times of London. The "Girl in the Coma" even made the cover of Newsweek. In advancing their daughter's constitutional right to privacy, an American family lost all of theirs. And it was, unfortunately, necessary for them to do so. For in order for the public to understand issues that up to that time had only been debated in hospital corridors and forums such as the Hastings Center Report, it was necessary for Karen Ann's parents to explain themselves fully to the world. It was not, they insisted, that they wanted their daughter to die. Rather, they wanted her to be free from the tyranny of the machine thouggt to be sustaining her life past the point at which she would have wanted to live.

Eleven years later, when In re Nancy Ellen Jobes was filed in the same courthouse, there should have been a pandemic of media and public deja vu. Here was yet another unfortunate young woman, who, like Karen Ann Quinlan, was in a persistent vegetative state (PVS). Again, a family, this time led by a twenty-nine-year-old husband, was in the same courthouse asking a different chancery judge for the same relief. The challenged modaility this time was a feeding tube, rather than a Bennett MA-1 respirator, but the issue was identical: physicians and health care facility administrators were refusing to allow the withdrawal of life-supporting medical technology from a patient for whom the treatment offered no hope of improvement--to say nothing of recovery.

Beginning with the New Jersey Supreme Court in the Quinlan case, court after court, commission after commission, and even some legislators, have affirmed and reaffirmed the right of an incompetent patient--particularly those in persistent vegetative state--through family members and guardians, to refuse life-sustaining medical treatment. Why, then, has it been necessary for the Jobeses, the Brophys, and other similarly situated families to go through the same public hell endured more than a decade earlier by the Quinlan family? Why have physicians and health care administrators been unwilling to accept the professional freedom and responsibility given them by the courts, legislatures, and public opinion polls? Even more puzzling, why have they so often ignored the ancient admonition to "first, do no harm"? Surely maintaining what only a vitalist would call the "life" of a Karen Ann Quinlan, Paul Brophy, or Nancy Ellen Jobes does such a patient no discernible good and, in fact, does great harm to all those who loved those patients when they were able to benefit from that love.

Why, eleven years after Quinlan, was there such media interest in the case of Nancy Ellen Jobes? The question, really, is not why the media seemed so intrigued by the case. Rather, it is why there had to be a case in the first place. After all, weren't these same questions settled a decade ago by the highest court in this same state? In fact, hadn't the New Jersey Supreme Court settled these matters yet again in the Conroy case a year earlier?

The answer to the first question--why the media interest--is of course both easy and obvious: The Jobes case involved a formerly attractive, vital, young woman, who, after her fetus was killed in an auto accident, was herself made vegetative by a physician's gross error. The young woman had a handsome, personable husband who loved the young woman his wife had been and, at the same time, was honest enough to admit that, after six years of watching the body of his wife literally vegetate, he wanted to get on with his life. Then there were Nancy Jobes's articulate and obviously distraught parents, Eleanor and Robert Laird, who fully supported the action brought by their son-in-law. They and several of Nancy's friends and other family members concurred with Nancy's husband in his statements that Nancy had said repeatedly that she would rather be dead than ever have to "live" like Karen Ann Quinlan. Moreover for perhaps the first time, the "Right to Life" movement was fully involved in advising and helping with the representation of a health care facility treating a PVS patient. How could the press have stayed away?

The harder question, then, is why it has been necessary for family after family, in state after state, to retread continually such well-trod, yet always emotionally, financially, and even physically burdensome, legal ground?

In the first place, the myth of the incarcerated physician and the specter of the large civil verdict haunt our nation's intensive care units. While working on these cases, we have been told by intensivists on countless occasions that nothing would please them more than being able to honor patients' advance directives--and the requests of surrogates--to end life-sustaining treatment, but they simply can't do it. They then explain that if they turn off a respirator before a patient is brain dead they will be charged with homicide. It doesn't seem to matter that this has only happened once in the entire history of American jurisprudence and, in that case, the indictment was quashed prior to trial. Similarly, these physicians are convinced that the very family members begging them to withdraw treatment will later file a multimillion dollar malpractice suit charging that the helpful physician brought about the untimely death of his patient. The truth, of course, is that not only has no such suit ever been filed, but there are now several cases pending against physicians who refused to honor surrogate decisions made on behalf of incompetent patients.

Physicians attending roundtable discussions at ethics institutes may not admit that worries about malpractice suits are what govern their ethical behavior, but it is clear that legal concepts play a part. Consider the words of one intensivist when asked why he would ever turn off a respirator unless a patient had been declared brain dead:

In my view there's no way that I personally, ethically, medically, as an agent of the hospital, can be party to that without a legal decision. No matter what my personal feeling, my personal beliefs, my personal bias, and my own strong feeling about a Living Will, it has nothing to do with it. It has to do with my own sense of priorities and my own sense of legal responsibility and legal culpability, and the impact it could have on me personally, the hospital, and my family. It could come to that. The system is so bizarre that a personal decision made by me may be attributed to me and I may be held personally liable and my family would therefore not only be affected indirectly, but directly, because my assets could become an issue.... I see the worst possible case scenario in everything that I do.

And yet this physician has his own Living Will. "I don't want my family being bled to death financially," he said. "I don't want them agonizing for weeks or months over me as a vegetable--And you can document this because you have it on tape! It's duplicity of thought, but it's a fact."

The second aspect of this problem is that while courts have ruled on these issues on numerous occasions, they have repeatedly pleaded in vain for legislatures to provide specific guidelines for families and physicians at the bedside. While thirty-nine states have passed advance directive legislation, none of those laws provides a comprehensive framework for decisionmaking from the nursery to the nursing home. Despite lengthy, thoughtful opinions from the New Jersey, Massachusetts, and other state supreme courts, the diligent work of a Presidential commission, the issuing of federal Baby Doe regulations, and the opinions of the American Medical Association's Council on Ethical and Judicial Affairs, physicians and families wrestling with these difficult questions are still forced to wander a frequently forking road with, at best, confusing directional signs. The recently released Guidelines on the Termination of Life-Sustaining Treatment and the Care of the Dying, prepared under the aegis of The Hastings Center by a multi-disciplinary panel, provide what may prove to be the mold that finally gives useful form to the amorphous mass of previous work in this area. For while these guidelines may cover familiar territory, they cover it in a unique way, laying out for families, health care providers, and society the ethically acceptable options for dealing with major dilemmas posed by life-sustaining technology.

Nowhere are these guidelines more desperately needed than in dealing with the thorny questions raised by the decision to withdraw care from PVS patients like Paul Brophy and Nancy Ellen Jobes. From a purely scientific point of view, these patients should be the easiest to deal with. After all, PVS patients are totally devoid of all those qualities and abilities that we associate with personhood: They cannot, and will not ever again be able to see, hear, speak, respond, think, or feel on even the most rudimentary level. They are not, as those in the "Right to Life" movement would have us believe, "handicapped" or "disabled." These are not patients with diminished capacity. They are unable to give or, what is far more important, perceive, love on even the most primitive of levels. Rather, they are nonmentative organ systems, artificially sustained like valued cell lines in cancer laboratories.

Ironically, it is all these things that make treatment decisions regarding PVS patients so difficult. For if ever there is a slippery slope, its top lies at the entrance to the PVS patient's hospital or nursing home room. How easy, for some, to write off these patients as nonhuman. How easy to argue that these patients are not worth the expenditure of our valuable medical resources. How easy to turn them into Willard Gaylin's "neomorts," human organ farms in an age of organ shortages. How easy, in fact, to decide that these are the cases that justify active euthanasia. But an acute awareness of the very vulnerability of these patients often leads to an unwillingness by physicians and other care providers to "give up" on those in PVS--even when the caregivers know intellectually that neither the patients nor their families are benefiting from treatment. Thus we so often have otherwise rational, intelligent, health care professionals insisting that PVS patients "respond" to their loving ministrations. Even when repeated tests and observations by PVS experts will prove a Nancy Ellen Jobes utterly devoid of any cognitive function, a nurse's aide may well insist that the patient "smiles" for her. After all, how could those who see to the basic needs of PVS patients rationalize all the hours, days, weeks, and months of physical drudgery if they did not convince themselves that the patient was somehow appreciative?

Further complicating the issue, is the fact that many PVS patients survive for long periods of time without mechanical ventilation. Thus the question with these patients is whether the continuation of artificial nutrition and hydration is medically indicated. Those with experience caring for individuals in PVS must ask themselves whether the patient is benefiting in any way from nutritional support. Unless the caregiver is a vitalist, the answer is quite clear: Providing artificial sustenance to such a patient may be of psychological--and sometimes financial--benefit to the caregiver, and may, under certain circumstances, benefit family members, but it in no way benefits the person the patient used to be. However, withdrawing artificial nutrition and hydration--"food and water"--appears to be an extremely psychologically difficult thing for many health care professionals to do. Because artificial support is referred to as feeding, and because, as A.J. Levinson, executive director of Concern for Dying, once put it, feeding "is a ham sandwich, a milkshake or gingerale," the very idea of withdrawing such basic humane support goes against the grain not only of most physicians, but of many lay persons as well.

However, one of the reasons that the idea of stopping "feeding" causes such revulsion in some people, is what might be called the myth of the starving patient. Some in the "Right to Life" movement have worked long, hard, and successfully to create a false belief, even in many physicians, that to withdraw nutrition and hydration is to "condemn" a patient to a horrible, painful, grotesque end. Nothing could be farther from the truth. In the first place, the PVS patient has no capacity to perceive pain. If there is no perception of pain, then certainly there is no perception of what the conscious patient would describe as hunger or thirst. To support this assertion one has only to look at the experiences of the Brophy and Jobes families. In each of those cases, all nutrition and hydration was withdrawn after final adjudication. And in both those cases the dying and deaths of the patients were peaceful and quiet. With the complete support and backing of staff members at two caring and courageous institutions, family members were able to maintain vigils for the less than two weeks it took Paul Brophy and Nancy Ellen Jobes to die. There were none of the signs of pain and suffering predicted under oath in court. In each case, the patient quietly slipped away as remaining organ systems failed.

The fact that family members will witness a peaceful death if nutrition and hydration are withdrawn from the PVS patient should not make us any quicker to give up on such patients. Until and unless society as a whole decides differently, if we are to avoid sliding down that proverbial slippery slope, we must always maintain an acute awareness of the special vulnerability of the PVS patient. However, physicians cannot allow themselves to be paralyzed by this awareness. Treatment decisions should be made for the PVS patient as they would be for any other critically ill individual: The governing ethos must be whether the treatment's potential benefit outweighs its burden--be that burden physical, emotional, financial, or all three. And the question of benefit versus burden must be answered by the patient--in an advance directive--or by the patient's surrogate deciding as the patient would, not by the physician or institution. Physicians must never forget in these cases, as in all others, not to make decisions on the patient's behalf. They must also realize that it is long past time to remove the process of decisionmaking from the courtroom and return it to the hospital corridors and patient rooms where patients, their families, and physicians traditionally worked out these problems. The courts have done their job: In Quinlan, Brophy, and Jobes the decisions clearly state that courts do not exist for the purpose of making treatment decisions. They are there if there is an otherwise insoluble disagreement over the propriety of a decision. But in each of these decisions--particularly in Quinlan and Jobes--the courts have clearly stated that the patient or his surrogate, rather than the court or the physician, is the ultimate decisionmaker. Additionally, in Jobes, the court tells us that surrogates do not have to prove what the incompetent patient would want, but rather, applying the principle of substituted judgment, should act in accordance with what their good faith understanding is of the patient's view of these matters.

Physicians and hospital administrators have repeatedly forced these cases into court, begging for guidance and freedom from civil and criminal liability. They have repeatedly been given both the guidance and the mantle of legal protection, and have been given it in such a way that they can return to the bedside and resume their traditional role. If they continue to rush to court every time they are confronted by a hard ethical choice, it becomes more and more likely that they will not like what they are told. While not all will agree with his views on the relative role of physician decisionmaking and patient autonomy, we would all do well to remember the admonition issued shortly after the Quinlan decision by C. Everett Koop, the pediatric surgeon who is now the Surgeon General of the United States:

There is no way that there can be a set of rules to govern this circumstance. Guidelines perhaps are possible, but not rules. I can think of no more tragic circumstance to come on the practice of medicine and no more tragic circumstance for a future patient to face than to have a legal decision made by someone in the field of jurisprudence who has not lived through these circumstances, and who could not in a lifetime of testimony understand what the problems are and how they should be handled. His training, experience and his emotions have not been intimately involved with similar circumstances in the past where his decision and his decision alone is the one that must answer all the questions, no matter how inadequately.

Paul W. Armstrong represented the families of Karen Ann Quinlan and Nancy Ellen Jobes before the New Jersey courts. B.D. Colen is science editor of Newsday, cowinner of the 1984 Pulitzer Prize for coverage of the Baby Jane Doe case, and author of several popular books on bioethical issues.
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Title Annotation:Karen Ann Quinlan, Nancy Ellen Jobes, persistent vegetative state
Author:Armstrong, Paul W.; Colen, B.D.
Publication:The Hastings Center Report
Date:Feb 1, 1988
Previous Article:Ethical questions raised by the persistent vegetative patient.
Next Article:Not dead, not dying? Ethical categories and persistent vegetative state.

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