Case example

On April 15, 1975, 21-year-old Karen Ann Quinlan attended a friend’s birthday party at a bar near her home in New Jersey. Karen was on a strict diet at the time, and she was also taking the anti-anxiety drug diazepam (Valium^®). After several drinks at the party, Karen felt faint, and friends took her home and put her to bed. When they checked on her fifteen minutes later, she had stopped breathing. They attempted to revive her and called for assistance. Emergency medical technicians arrived, continued cardio-pulmonary resuscitation efforts, and transported Karen to a nearby hospital, where she was placed on a mechanical ventilator.

Karen remained hospitalized, on ventilator support, for the next several months, but she did not regain consciousness. Neurologists diagnosed her condition as a “persistent vegetative state,” a form of irreversible unconsciousness caused by lack of oxygen to her brain during the time when she was not breathing. Karen did, however, retain some brain activity. She did not meet established brain-oriented legal and medical criteria for death (sometimes called “brain death”), since those criteria require a finding of “irreversible cessation of total brain function.” Her physicians were convinced that Karen could not survive without ongoing ventilator support.

Karen’s parents, Joseph and Julia Quinlan, had consented to all recommended life-sustaining treatments for their daughter during the first three months of her hospitalization. By the end of July 1975, however, they reached the conclusion that Karen would not want continuing life-sustaining treatment in a state of permanent unconsciousness. The Quinlans were devout Roman Catholics; after consultation with their parish priest, they requested that Karen’s ventilator support be discontinued and that she be allowed to die. Karen’s physicians responded that they could not honor this request, on the grounds that removing Karen’s ventilator support would be a form of euthanasia that would be immoral, illegal, and contrary to medical standards of care. Karen was a patient at St. Claire’s Hospital, and the hospital supported the physicians’ decision to continue ventilator support. What should have been done to resolve this disagreement?¹

With the rapid expansion of health care services in the United States in the decades immediately following World War II, patients, health care professionals, and the American public at large confronted new and challenging moral questions about what treatments should be offered and provided, especially near the beginning and the end of human life. A new field of intellectual inquiry, variously called “medical ethics,” “bioethics,” “biomedical ethics,” and “health care ethics,” emerged to address these questions.² The growing field of health care ethics provided a body of knowledge and methods of practical reasoning that made possible a new practice, called “clinical ethics consultation,” in US hospitals and other health care facilities. Clinical ethics consultation is now a very widely available service to assist professionals and patients when they confront ethics questions in health care. This chapter will provide a brief review of the history of health care ethics and of clinical ethics consultation in the United States.

The new field of health care ethics

Attention to the moral responsibilities of physicians dates back to the establishment of medicine as a profession in classical antiquity, as demonstrated in the Oath of Hippocrates and other Hippocratic writings.³ Through the intervening ages, a few physicians wrote treatises on their professional duties, and the American Medical Association (AMA) adopted a “Code of Medical Ethics” at its inaugural convention in 1847.⁴ Theologians in several faith traditions, including Roman Catholicism and Judaism, offered analyses of the duties of physicians and patients in specific situations.⁵ Ethics in medicine and health care was not, however, viewed as a distinct field of inquiry, with its own specific problems, resources, and methods, until well into the second half of the twentieth century.

Several scholars, most notably David Rothman and Albert Jonsen, have offered book-length accounts of the origins of the new field of bioethics.⁶ They argue that bioethics emerged in response to a convergence of events and trends in American society and health care. Health care in the United States experienced explosive growth in the years following World War II.⁷ Greatly increased public spending for biomedical research fueled the development and dissemination of a wide variety of new and powerful medical treatments. For the first time in history, medical treatments and technologies, including mechanical ventilation, artificial nutrition and hydration, and organ replacement therapies, could exert significant control over the time and manner of death for patients with a variety of catastrophic illnesses.

Post-World War II public financing programs also subsidized community hospital construction and the rapid expansion of medical education. Employer-provided private health insurance programs increased access to health care for American workers and their families, and establishment of the public Medicare and Medicaid health insurance programs in 1965 did the same for elderly and many indigent Americans. All of these developments made a growing array of new medical technologies accessible to an increasing number of American patients. These technologies offered substantial benefits for many patients, but they also caused serious complications and side effects, imposing severe burdens of suffering and disability on other patients. Treatment innovations prompted physicians to pose a new question: “Now that we can, with increasing hope of success, use new technologies to prolong the lives of catastrophically ill patients, must we always attempt to do so?” Nothing in their training equipped physicians to answer this question confidently, and so they sought assistance with new and difficult ethical problems.⁸

American society at large was also undergoing major changes during this period. The civil rights movement, the anti-Vietnam War movement, and the feminist movement of the 1960s and 1970s urged Americans to question authority, to embrace political activism, and to recognize individual rights. Social critics began to question the paternalistic tradition in American health care, in which physicians made treatment decisions and patients played a mostly passive role. The 1960s witnessed the emergence of a new legal responsibility of physicians to obtain their patients’ informed consent to treatment.⁹ Following its recognition in US law, proponents of the emerging field of health care ethics emphasized informed consent as a paradigm of patients’ moral rights to active participation in decisions about their health care.

Finally, three high-profile events in the early and mid-1970s focused substantial public attention on moral problems in health care. The first of these was a 1972 Associated Press exposé of the Tuskegee Study of Untreated Syphilis, a 40-year-long series of clinical trials in rural Alabama on African-American men with syphilis.¹⁰ The Tuskegee Study was roundly condemned, both for failing to obtain the informed consent of the subjects to participation in this research and for withholding effective antibiotic treatment from the subjects when that treatment became available in the late 1940s. Tuskegee became an enduring symbol for African-American distrust of the US health care system, and it evoked a formal apology to the research subjects from President Bill Clinton in 1997. In a more immediate response to the disturbing revelations of the Tuskegee Study, the US Congress in 1974 established a National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research.¹¹ Congress charged the Commission to propose regulations for the protection of human research subjects and to develop guidelines for research ethics. Several years later, the National Commission published The Belmont Report: Ethical Principles and Guidelines for the Protection of Human Subjects of Research.¹² This report contains the first published statement of what has become widely known as the principle-based approach to moral reasoning in health care.¹³

The second high-profile event was the announcement, on January 22, 1973, of the US Supreme Court decision on abortion in Roe v. Wade.¹⁴ The Court’s decision, giving Constitutional protection to a woman’s right to abortion, evoked a heated moral and political debate over abortion policy that continues to the present day. Many prominent philosophers and theologians have contributed to this debate, offering analyses of the rights and duties of women, the moral status of the fetus, and the proper role of law in regulating reproductive decisions.¹⁵ Subsequent years brought the introduction of assisted reproductive technologies, including in vitro fertilization, gestational surrogacy, and prenatal genetic diagnosis. Each of these options had its proponents and opponents, and the control of human reproduction became a major topic area for the new field of health care ethics.¹⁶

The third high-profile event of the 1970s was the widely publicized case of Karen Ann Quinlan described at the beginning of this chapter.¹⁷ The Quinlan case is generally acknowledged to have brought end-of-life treatment decisions “out of the closet” and into the consciousness of the American public.¹⁸ In response to Karen’s predicament, state legislatures, beginning with California in 1976, enacted statutes recognizing a new mechanism for refusing unwanted life-sustaining treatment, the “living will.”¹⁹ The Quinlan case was followed by a series of legal cases defining the scope and limits of “the right to die,” culminating in 1990 with the first US Supreme Court decision on end-of-life care in the case of Nancy Cruzan.²⁰ From their beginnings in Quinlan, end-of-life treatment decisions have been a major focus of bioethical attention.²¹

The above-described events focused American public attention on a variety of moral issues in health care. Confronted with these novel issues, legislators enacted new statutes, and courts established new precedents. Scholars in theology, philosophy, medicine, law, and other disciplines proposed methods for addressing bioethical issues, offered analyses of specific problems, and defended solutions to those problems. To support these activities, a variety of professional institutions and scholarly resources began to appear. In 1969, a group of physicians and ministers founded the Society for Health and Human Values (SHHV), the first professional association devoted to moral issues in health care. Research institutes in bioethics were established, including the Hastings Center in 1969 and the Kennedy Institute of Ethics at Georgetown University in 1971. Scholarly journals were founded, beginning with the Hastings Center Report in 1971 and the Journal of Medicine and Philosophy in 1976. Also beginning in the 1970s, US medical schools hired faculty to develop and teach courses in bioethics.²² By the latter half of the 1970s, several anthology textbooks of bioethics were in print.²³ A four-volume Encyclopedia of Bioethics was published in 1978,²⁴ and a book-length approach to bioethical reasoning, Principles of Biomedical Ethics, by Tom Beauchamp and James Childress, appeared in 1979.²⁵ By the end of the 1970s, then, health care ethics was well on its way to recognition as a significant and independent field of scholarly inquiry.

In the subsequent decades, health care ethics has continued its steady expansion and has become a standard part of health care professional education in the United States. The Liaison Committee on Medical Education, the accreditation agency for US and Canadian schools of medicine, has, for example, required ethics instruction in medical education for many years. The literature of health care ethics continues to grow, with dozens of scholarly journals now in publication, and the Encyclopedia of Bioethics now in its fourth edition.²⁶ In 1998, the SHVV joined with two other professional associations, the Society for Bioethics Consultation (SBC) and the American Association of Bioethics (AAB), to form the American Society for Bioethics and Humanities (ASBH), whose annual meetings attract hundreds of bioethics scholars, teachers, and students. The chapters of this book describe significant developments and multiple ongoing debates on a wide variety of health care ethics topics.

Precursors to clinical ethics consultation

As the number and complexity of ethical questions in health care increased, early commentators offered tentative ideas about potential sources of advice and guidance in addressing those questions. In 1975, pediatrician Karen Teel suggested that hospital “ethics committees” could be established for this purpose; her suggestion received widespread attention when it was cited by the New Jersey Supreme Court in its 1976 Quinlan decision.²⁷ Ethics committees have in fact become a standard feature in US hospitals and the primary provider of ethics consultation today, but in 1975 they were virtually unknown. No guidelines existed regarding the structure or function of ethics committees, and a 1983 report of a national survey of 602 hospitals estimated that only 1 percent of US hospitals had ethics committees.²⁸

Before the advent of hospital ethics committees, however, at least three other types of committees with ethics-related functions were operating in specific health care settings in the United States. In 1962, an institutional committee became the subject of a lengthy article in LIFE magazine entitled “They Decide Who Lives, Who Dies.”²⁹ In that article, journalist Shana Alexander reported on the Admissions and Policy Committee of the Seattle Artificial Kidney Center. Several years earlier, Dr. Belding Scribner’s invention of an implantable device enabling regular access to a patient’s circulatory system allowed him to provide long-term hemodialysis to patients with end stage renal disease (ESRD). Scribner secured funding for a nine-bed dialysis center, but treatment candidates quickly exceeded the center’s capacity, and so an Admissions and Policy Committee of anonymous community members was created to decide which medically suitable candidates would be offered dialysis. The Committee used a variety of informal criteria, including age, gender, marital status, number of dependents, income, educational background, occupation, past accomplishments, and future potential, to make their selections.³⁰ Alexander’s article called public and scholarly attention to the Committee’s methods. Critics objected to its use of “social worth” criteria to make these life-and-death treatment decisions, with one commentary asserting that “the Pacific Northwest is no place for a Henry David Thoreau with bad kidneys.”³¹ In 1972, Congress was persuaded to respond to this dramatic example of scarcity of a life-prolonging medical treatment by adding funding for treatment of virtually all patients with ESRD to the Medicare health insurance program.

A very different type of committee, called an institutional review board (IRB), was mandated by the National Institutes of Health (NIH) in 1966 for all institutions conducting federally funded research on human subjects.³² IRBs were given a specific charge, namely, to review protocols for proposed research on human subjects within their institution and to determine whether that research satisfies federal regulations for the protection of the research subjects. Because IRBs were in operation in medical schools and research hospitals in the 1970s, this committee-based mechanism may have suggested itself as a model for review of clinical ethics problems. Although IRBs and hospital ethics committees both address ethical issues, their functions are otherwise quite different. IRBs perform a required prospective review of all federally funded human subjects research and are governed by specific federal regulations; ethics committees provide ethics consultation upon request in individual clinical cases as a voluntary service and are free to develop their own procedures and guidelines for this practice.

Several commentators describe yet another kind of ethics committee operating in some Catholic hospitals by the early 1970s. Establishment of these committees, called “medico-moral” or “medical-moral” committees, was recommended by both the US and Canadian Catholic bishops in 1971.³³ These committees were initially created to ensure that Catholic hospitals observed Church doctrine on such matters as contraception, abortion, sterilization, and euthanasia. In 1974, A. R. Kosnik proposed a more expansive charge for these committees, including staff education and inter-professional communication, in addition to interpretation and enforcement of Catholic religious directives.³⁴ Lappetito and Thompson report that many of these committees expanded their mission in the 1980s and evolved into institutional ethics committees with the three standard functions of ethics education, ethics-related policy development, and clinical ethics consultation.³⁵