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What Quinlan can tell Kevorkian about the right to die.

In the summer of 1973, Karen Ann Quinlan shared with her friends a disturbing premonition: she was going to die young, she told them; she was going down in history. Almost two years later, on April 15, 1975, twenty-one-year-old Quinlan, in a coma of mysterious origin, was admitted to a New Jersey hospital Five months later, after doctors refused her parents' request that she be removed from the ventilator that assisted her breathing, Quinlan's parents began legal proceedings. On November 10, the New Jersey Superior Court denied the parents' request; Quinlan would remain on the respirator. The parents appealed to the state's highest court, and on March 31, 1976, the New Jersey Supreme Court handed down In Re Quinlan--ruling Quinlan's "right to privacy" now included her right to be removed from the machine. This decision assured Quinlan her role in history; her prediction had come true.

On the twentieth anniversary of this decision, Quinlan's place in history was remembered in newspapers, on radio shows, and at conferences across the country as having launched the right-to-die movement. The central feature of this movement is the body of legal cases expanding the patient's "right" to decline life sustaining treatment, compelling medical professionals to withdraw such treatment if administered, and, ultimately, requiring professional assistance for terminally ill individuals wishing to end unendurable lives. Remembered this way, it seems logical, although odd, that two decades later Jack Kevorkian--the "doctor of death" impassively arriving to assist people scarcely known to him weeks before--has come to represent the patient's final right. This, however, is a false genealogy.

Stripped of its drama, In Re Quinlan does not mark the beginning of the movement to deal compassionately with terminally ill patients but, rather, the beginning of the movement's turn from the ambit of patients, doctors, families, clerics, and communities toward the sphere of the courtroom and the legal language and the limitations of so called rights. This turn resulted from a combination of medical research aims and legal liability considerations surrounding organ transplantation, and those liability considerations have little to do with humane concern for the irreversibly comatose or the terminally ill. With the United States Supreme Court currently considering the issue of physician assisted suicide, it is, perhaps, more important than ever that the Quinlan decision be understood for what it was.

Right-to-die concerns surfaced decades before the Quinlan litigation. From at least the 1950s, members of the public and the profession' expressed anxieties over the need to curtail modern medicine's prolongation of suffering. In January 1957, for example, one woman anonymously shared her distress with readers of the Atlantic Monthly. She wrote poignantly of her husband's death at the hands of institutionalized medical care. She told of a "new way of dying . . . the slow passage via modern medicine" After witnessing the torment of repeated surgeries, medications, oxygenation, and intubations, after delirium and unconsciousness, the woman could no longer bear her husband's "torture":

"They can't do this to you any longer. I must put a stop

to it," I cried.... When the first doctor came on duty I

accosted him and begged that they cease this torture.

He explained that except under the most unusual

circumstances they had to maintain life while they

could. Very well, I thought, if it has to be, so be it. Later, when a nurse arrived with a tray of medicine, the wife wanted to

kick her tray . . . and knock her from the room. She was

here to snare him back just as he might have reached

the other shore. I asked her why. "Doctor's orders,' she

replied. "I am to give him a hypo." I staggered out the

door; there was nothing else to do.

The Atlantic editor's introduction indicted "big metropolitan hospitals" for creating "an ordeal" which had "somehow deprived death of its dignity"

The anonymous account, although targeted at the general public, resonated with some physicians who had themselves grown critical of what medicine had wrought. Dr. John Farrell, chair of surgery at the University of Miami, was one who read the widow's anguished memoir and was moved by it. In 1958, at a banquet address to a chapter of the American College of Surgeons, Farrell decided to forego a "light and amusing" theme befitting the occasion. Instead, he echoed the widow's distress and spoke of the patient's unnecessary suffering as doctors relentlessly and futilely fought death:

In our pursuit of the scientific aspects of

science, the art of medicine has sometimes unwittingly

and unjustifiably suffered.... The death bed scenes I

witness are not particularly dignified. The family is

shoved out into the corridor by the physical presence

of intravenous stands, suction machines, oxygen tanks

and tubes emanating from every natural and several

surgically induced orifices. The last words . . . are lost

behind an oxygen mask.

Farrell was not alone in revealing his moral qualms--his sensibility echoed periodically through medical journals. The technologies invoked as examples varied but the message was the same: an ever widening list of technologies and procedures were being brought inappropriately into use for the supposed benefit of dying patients.

One of the more dramatic indications of medicine's growing discomfort with this problem, and an illustration of the profession's increasing search for moral guidance beyond its own institutions, occurred in 1957. In that year, the International Congress of Anesthesiology, concerned by ethical problems in the-use of resuscitative measures, sought guidance from Pope Pius XII. Troubled anesthesiologists asked for moral instruction to advise physicians as to when they had the right or obligation to begin artificial resuscitative measures on unconscious individuals and, most importantly, when they were obligated to cease such measures.

The pope responded in November of that year. He replied that a physician must not act without authorization from the patient's family and that the family was bound to use ordinary, not "extraordinary,' measures to prolong life. The Catholic Church's "principle of double effect" was used to buttress this point of view. According to this thinking, one act--in this case, terminating resuscitation--had two effects. The first and de sired effect was to end human suffering. The second, death, was only the indirect result of a moral act. In such cases, fermi eating treatment may be not only permissible but advisable.

Concern over how to prevent prolonged suffering grew during the 1960s. In March 1966, for example, physicians gathered in Chicago for the First National Congress on Medical Ethics and Professionalism. Dr. William P. Williamson of the University of Kansas Medical Center addressed the congress, admonishing physicians that, whether they liked it or not, the doctor's "skills, decisions, and the treatments he renders, often determine life or death for his patient" Williamson provided a partial list of contemporary measures contributing to the dilemma: potent drugs, mechanical respirators, pacemakers, artificial organs, improved understanding of body physiology and chemistry, and aggressive medical and nursing care. For him, the problems were not medical but theological, social, and legal, and the profession needed nonmedical advice in dealing with them. Williamson noted:

. . . consideration of the

moral and spiritual aspects,

as well as guidance of the

family's thoughts and

emotions, are proper

functions of the clergy,

either rabbi, priest, or

minister. Thus, the team

approach of physicians and

clergy working together,

with patient and family, is

the ideal solution to this

problem. At times, other

professions may contribute . . .

such as a lawyer, social

worker, or nurse.

Prolonged suffering was becoming a concern even at regional medical meetings. It was the topic, for example, at the Wyandotte County Medical Society, which convened in Kansas City, Missouri, in 1966. Each of the medical professionals in attendance brought a member of the clergy as a guest. The program's panel included a surgeon, a psychiatrist, an internist, a rabbi, a minister, and a priest. The meeting was far from the only one called to ad dress similar moral concerns. The American Medical Association's Department of Medicine and Religion helped form committees on medicine and religion in each state medical society. In turn, those committees arranged seminars and discussion groups to address the dilemma.

In keeping with this growing concern over curtailing suffering removing patients like Quinlan from respirators--whether or not the norm--was an accepted part of customary medical practice prior to her case. Indeed, the novelty of the New Jersey Supreme Court decision is not that it dealt with whether or not physicians ought to allow patients to die; its novelty is that this question was being decided in a courtroom rather than a hospital. "It is done all the time," one New Jersey neurological surgeon told reporters in 1975. A Washington, D.C., physician made it clear that "a significant aspect of the Karen Quinlan case is the fact that it is in court at all." The month before the court reached its decision, the director of the Medical Outpatient Department at Boston's Children's Hospital Center coolly offered a clinician's perspective in the pages of the Hastings Center Report:

Many physicians have disconnected respirators.... Is it

really an issue? Or, is it a facet of medical care just

coming to public attention? . . . The first justification

for discontinuation of respiratory therapy . . . rests on

the fact that it is a well established part of medical


With the tradition of concern about and the developing medical custom over reducing prolonged suffering, how did it come to pass that Quinlan's parents were compelled to force her doctors into the courtroom and obliged to protest that their daughter had a right to be removed from the respirator? Ironically, the circumstances prompting this litigation were of the medical profession's own making. Moreover, these were circumstances which had nothing to do with establishing principles of humane behavior toward the chronically or terminally ill.

In the late 1960s, backers of transplantation research unwittingly created these circumstances when they established "brain death" as a definition of death in an effort to ease the procural of human organs for transplantation. By the time of the Quinlan family's dilemma in the mid 1970s, the medico legal world had become fiercely litigious, and in this environment the "redefinition of death" came to create for physicians unforeseen legal jeopardy; for the Quinlans, unexpected agony.

During the late 1960s, the intensification of transplantation experimentation prompted researchers to seek new ways of increasing the supply of transplantable organs. "Heart beating cadavers" offered a ready source. Technically, however, such bodies were, by the standards then prevailing, still alive, even though the brains had ceased functioning and would never function again. To reduce controversy and avoid criminal liability, transplantation backers sought to establish the brain death criteria.

The 1968 criteria for brain death created by the Ad Hoc Committee of the Harvard Medical School to Examine the Definition of Brain Death was a narrowly construed set of guidelines. Committee members perceived the urgency in constructing guidelines that left as little room as possible for a legal charge that they were removing organs from people who might have even a modest chance of recovery. Thus, the Harvard committee's new standards specified that, before the respirator could be turned off, four requirements had to be met: a flat electroencephalogram over a twenty-four-hour period; no response to external stimulation; no spontaneous breathing; and pupils fixed and dilated. Meeting these criteria, the committee believed, would ensure that the individual would never revive.

The problem for Quinlan and her family is that she met none of the four requirements. As the 1968 "redefinition" of death became increasingly public, and as more and more state legislatures passed laws to support the new criteria, "pulling the plug" on potential organ donors became less problematic; doing the same for people like Quinlan, however, became a riskier proposition for physicians. If the chief concern in 1968 had been the establishment of criteria for the removal of patients from medical ventilation to prevent prolonged suffering, the guidelines could have looked quite different; a broader set of rules to include cases of "chronically vegetative" patients could have been devised. As it was, however, the guidelines were narrowly cast, excluding Quinlan and patients like her. What once had been a matter of developing medical custom--the removal of chronically vegetative patients from respirators--might now be seen as unlawful killing. In this sense, the anguish of the Quinlan family in the mid-1970s was part of the purchase price of organ transplantation experimentation in the late 1960s.

Harvard's 1968 codification of brain death was causing unanticipated hazards for physicians practicing in the litigious social environment of the 1970s. Pulling the plug on chronically vegetative but not brain dead patients--always an emotionally trying act--could now more easily be interpreted as a criminal act as well. The possibility of criminalizing medical practice was driven home to the medical community by the fate of Boston obstetrician Dr. Kenneth Edelin in 1975.

When news of Quinlan and the ensuing dilemma hit the front pages of newspapers across the country, the medical profession was still reeling from the legal implications of the Edelin case. Edelin, coordinator of ambulatory services at Boston City Hospital, was charged with allowing an infant to die after per forming a late term abortion. The trial produced inconclusive evidence regarding whether the fetus was alive when it was removed from the mother's body, or whether Edelin had caused the death of the fetus by delaying its removal. Despite conflicting testimony and defense evidence that he had done nothing beyond the bounds of standard medical practice, Edelin was convicted of manslaughter in Massachusetts Superior Court on February 15, 1975. The verdict sent shock waves through out the medical community. Medical decisions, once largely private, were now perceived to be threatened by the law's full scrutiny. The Edelin precedent meant that, when the Quinlan dilemma was taken beyond hospital corridors, it was not a church pulpit or the halls of academia that would be looked to for ultimate resolution but, rather, a court of law.

Finally, there is some degree of irony in seeing Quinlan as a right to die case. The court never ordered Quinlan's physicians to remove her from the respirator. Doctors were told that they may discontinue ventilation, not that they must do so; and in the weeks following the decision, they did not do so. As they had done before, her physicians tried to "wean" Quinlan off the ventilator in an effort to get her to breathe on her own--a strategy which ultimately worked.

The Quinlans compelled their daughter's physicians to take their request seriously by threatening to do what, technically, they could have done before litigation began--namely, remove the physicians from the case and seek the assistance of others who would turn off the machine. But as it was, almost six weeks after the court's decision, Quinlan was not only still attached to the ventilator but her doctors were using more medical technology to keep her alive, having ordered a body temperature control machine in an effort to curb a fever. These exertions were ultimately effective. Weaned from the respirator, Quinlan "lived" another nine years. The court had not required otherwise.

The chief legacy of the decision is not that it guaranteed patients an important right but, rather, that it offered physicians an important freedom: freedom from criminal prosecution when removing life support from patients in a chronically vegetative state. Remembering Quinlan wrongly as launching the right to die movement obscures the medical research aims and legal liability fears that laid the groundwork for bringing the Quinlans to court. It also constrains the national discourse surrounding our expectations for humane treatment during chronic or terminal illness, for this discourse now is contorted by a jurisprudence wedded to the strange oxymoronic slogan that we have a right to die--suggesting improbably that, some how, we have the right to do something that we cannot escape. In a supreme act of denial, we have enlisted the courts to help us valorize the disease compromised prerogatives of the dying instead of exploring the obligations of the healthy--to seek ways to ease and end suffering and to respect the wishes of those who want to exercise what control they may have left to die as they see fit. Historically, this exploration of empathy began with our families, friends, physicians, churches, and communities. There it should remain.

There is in this country a strong cultural force backing the individual's desire to see swift, painless, dignified death. The signs are clear: right to die litigation; the fact that no jury has ever found a physician guilty of assisting a suicide; the creation of living wills; the existence of such organizations as the Hemlock Society, the Euthanasia Research and Guidance Organization, Choice in Dying, and Americans for Death with Dignity; the success of the how to book Final Exit; and most recently, the grim triumphs of Kevorkian's sterile ministrations.

During the 1970s, the general arrogance and paternalism of the medical profession compelled many of us to believe that the best way of ensuring death with dignity was to assert our legal "right" to die. The time has come to assess the costs of this choice. Bioethicist Arthur Caplan is correct to question the humanity of a jurisprudence that would find a right to die before finding a right to health care. In a country where costs figure so largely in the creation of medical standards of care, and where the legal expression of its right to die movement was launched not through a consideration of humane treatment but through a response to the instrumental preoccupations of research aims and liability fears, one might begin to wonder how long it will take before our final right becomes our last duty.

M. L. Tina Stevens has taught, lectured, and conducted research at the University of California at Berkeley and is finishing her dissertation "American Cultural Politics and the Rise of Bioethics."

RELATED ARTICLE: Liberty and Death by Edd Doerr

On January 8, 1997, the U.S. Supreme Court heard oral argument in two cases that could help decide the controversy surrounding physician assisted suicide. The cases involve the states of Washington and New York, which are appealing federal appellate court rulings that have upheld the practice.

In the Washington case, Washington v. Glucksburg, the U.S. Ninth Circuit Court ruled that there is a "liberty interest in choosing the time and manner of one's own death." rooted in the Fourteenth Amendment. In the New York case, Vacco v. Quill, the Second Circuit ruled that, given that New York law allows residents to refuse resuscitation and to forgo artificial life support, denying residents physician assisted suicide violates the Fourteenth Amendment's equal protection guarantee.

The issue of physician assisted suicide has attracted wide media attention and sixty amicus curiae (friend of the court) briefs. The American Humanist Association joined in one of the supportive amicus briefs with the Unitarian Universalist Association, Americans for Religious Liberty, the Episcopal Diocese of Newark, the Society for Humanistic Judaism, the Congress of Secular Jewish Organizations, the Cathar Church, and twenty nine clergy and scholars representing Unitarian Universalist, Episcopal, United Methodist, Presbyterian, United Church of Christ, Jewish, Catholic, and Baptist traditions.

This brief broadens the arguments in favor of physician assisted suicide reported by most media. It argues not only that "the right of a competent, terminally ill individual to end his or her life with the aid of a physician is one of the most important liberties protected by the due process clause" of the Fourteenth Amendment, but that the right is also protected by the free exercise and establishment clauses of the First Amendment. The brief acknowledges that there is wide diversity among religious bodies regarding suicide and physician-assisted suicide, so it is inappropriate for states, such as Washington and New York, to "dictate only one answer . . . to persons of all religious faiths"

The brief continues:

Those terminally ill persons whose religions recognize that physician assisted

suicide is an appropriate ethical and moral choice, or that the determination

is best left to the individual's own conscience, are prevented from making

this most personal decision in accordance with their "own conception of {their}

spiritual imperatives (Planned Parenthood v. Casey, 1992 Supreme Court ruling

In addition to the Planned Parenthood case, the brief also invokes the Court's 1994 ruling in Kiryas Joel Village School District v. Grumet, which, in reaffirming the First Amendment's establishment clause, said that government may "favor neither one religion over others nor religious adherents collectively over nonadherents." Given this, the brief goes on to state that the bans on physician assisted suicide in Washington and New York

in essence, endorse one religious viewpoint to the exclusion of all others. Such

endorsement of religious views runs contrary to the "purposes" and "reasons"

behind the establishment clause.

While acknowledging that "statutes do not violate the establishment clause simply because they reflect `traditionalist' values," the brief argues that

bans against physician assisted suicide are not merely reflections of a

"traditionalist" view. To the contrary, laws against suicide stem from the

incorporation into the English common law of the canon law of the Roman

Catholic Church.

The bans, then, have a religious of the U.S. Constitution.

The attorney for Washington state argued before the Supreme Court that the courts should not overturn the wishes of the state's voters, who had narrowly defeated a proposal to allow assisted suicide. (Oregon voters, however, went the other way, though their winning proposal is under court challenge.) But that is why we have judicial review, so that majorities--whether permanent or transient--may not violate fundamental individual rights. By the way, this is the latest ploy of the religious right--to howl about "judicial tyranny" and "unelected judges thwarting the will of the majority." This "moral majority" thinking runs counter to the basic idea of American democracy: that majority rule is constitutionally limited and that the Bill of Rights is purposely an anti-majoritarian document.

As with the abortion rights controversy, so too with physician-assisted suicide: who decides whether to bring life into the world or when and how to leave it--a one-size-fits-all government or the individual citizen? A decision by the Supreme Court on the Washington and New York cases is expected before July. Even a ruling upholding the two cases would leave the door open for state legislatures to regulate assisted suicide in order to prevent abuses and guarantee its voluntary nature.

Edd Doerr is president of the American Humanist Association and executive director of Americans for Religious Liberty. Copies of the AHA et al brief described in this essay are available for $10 each from Americans for Religious Liberty, PO. Box 6656, Silver Spring, MD 20916.
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Title Annotation:includes related article on two right-to-die cases before the U.S. Supreme Court; right to die cases involving Karen Ann Quinlan and Dr. Jack Kevorkian
Author:Doerr, Edd
Publication:The Humanist
Article Type:Cover Story
Date:Mar 1, 1997
Previous Article:Psychological aftereffects of abortion: the rest of the story.
Next Article:Behind the white coat.

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