We first heard about this case from nurses in one of our intensive care units (ICUs) while we were conducting an inservice. When the session was over, we discussed it between ourselves, and decided that it must have been misrepresented. The case had been presented as one of a teenager who was brain dead, had been so for six months, yet had been brought into the ICU for treatment. We have run into this before, we thought: medical professionals confusing brain death with persistent vegetative state (PVS). But, of course, we reasoned, no one can be brain dead for six months. To us, as it would to many, the case sounded like a clinical and ethical impossibility.

A week later, we were called by an attending physician from another ICU, at the urging of that unit's nursing staff. They had a patient who was brain dead, whose presence was causing distress among the staff. Ronald Chamberlain, a fifteen-year-old boy, had been a patient at a nearby longterm rehabilitation facility that is equipped to care for ventilator-dependent patients.

Practice guidelines are an increasingly relevant feature of health insurance. One hundred and seventy-eight million people in the United States have some form of private health insurance coverage; coverage for 150 million of them is employment-related. Traditionally, this coverage was provided by employers purchasing a group contract under which an insurance carrier provided indemnity coverage for employees—that is, the insurance company paid all usual, customary, and reasonable charges incurred by an employee for medical care, subject in some cases to an annual deductible and to a percentage of covered expenses, co-paid by the employee, for each service. In recent years, however, employers in greater numbers have switched to so-called self-insurance plans in which employees’ health care claims are paid directly by the employer (although an insurance company or other third party may be retained to administer the claim payment process).

Discussions about the role of practice guidelines and the strength of the evidence on which they are based should begin with a set of more basic questions: What is the function of such guidelines and what forces shape their use?

At least two forces can be seen behind the press for guidelines. On the one hand, guidelines can be used to improve the quality of care by raising the general level of practice to meet at least the standards set by experts. At the other, they become vehicles for cost containment.

By international standards, the United States spends a disproportionate share of its gross domestic product on health care. The majority of spending increases are traceable to the growth in technology. Whether couched as a concern that resources could be better used to provide other parts of the population with more effective health care or as a general concern that money spent on health might be better used for other social goods, a notion exists that less is better.

On March 30, 1995, the Supreme Court of Nevada, in Greco v. United States, determined that medical professionals who fail to make a timely diagnosis of gross and disabling fetal defects, thereby denying a pregnant woman her right to terminate a pregnancy, had acted negligently, and a malpractice claim could be brought against them. The court supported the plaintiff's claim of “wrongful birth,” but determined that the disabled child born to the plaintiff has no personal cause of action for “wrongful life.”

Sundi Greco, the plaintiff, alleged that her doctors at Nellis Air Force Base in Nevada failed to make a timely diagnosis of her son's physical defects and abnormalities before his birth. Their negligence denied her the opportunity to terminate her pregnancy, causing her damages attendant to the avoidable birth of a child with birth defects. On her child's behalf, Greco asserted that the physicians' negligence, and resultant denial of his mother's right to terminate the pregnancy, allowed him to be born into a “grossly abnormal life of pain and deprivation.”

On May 24, 1995, the American Medical Association (AMA) Council on Ethical and Judicial Affairs issued a rather controversial opinion that it is ethically permissible to use anencephalic infants as living organ donors. Approximately 1,000 to 2,000 infants are born each year in the United States with anencephaly, a congenital birth defect whereby the infant has no forebrain and cerebrum. Without higher brain functions, the infants can never experience consciousness, thoughts, emotions, or pain. Fewer than half survive more than a day, and more than 90 percent die within one week. However, by the time brain death occurs in anencephalic infants, their organs are no longer suitable for donor purposes because they have deteriorated beyond use.

In 1988, the AMA Council declared that it is ethical to use the infants as organ donors only after they have died. Now the Council has revised that opinion, and it proposes to allow removal of organs before death, as long as the parents consent and two doctors concur in the diagnosis of anencephaly.

United States public health experts have long expressed concern about the prevalence of the human immunodeficiency virus (HIV) among injection drug users (IDUs). The United States has the largest reported IDU population in the world: 1.1 to 1.5 million. Recent estimates from the Centers for Disease Control and Prevention (CDC) suggest that 50 percent of incident HIV infections occur among IDUs, with additional infections occurring among their sex partners and offspring. More than 33 percent of new AIDS cases occur in IDUs, their sexual partners, and their children. Almost one half of all women diagnosed with AIDS in the United States are IDUS. Many of the remaining infected women were infected as a result of sex with a male IDU.

While public health agencies, legislators, community leaders, and religious groups have engaged in vigorous debate over the merits of needle exchange programs (NEPs) as an intervention to reduce HIV transmission, the programs, some legal and some illegal, have been implemented in fifty-five cities across the country.

To achieve lower medical spending with as little reduction as possible in good outcomes, practitioners and policy makers alike have been experimenting with the use of practice guidelines. These guidelines both recommend certain types of therapies and proscribe others in the treatment of patients with particular conditions. This paper explores the question of whether guidelines which do reduce total resource costs of medical care to a population will (1) be feasible and (2) produce “acceptable” results. The definition of acceptable is part of the policy problem, so it will be left open for a while, but the question of which outcomes match with which levels of resource cost will form the positive basis for the normative judgment of “acceptability.”

In response to increasing use of practice guidelines in medicine, physicians have focused their attention on how these guidelines can restrict their medical practices. However, guidelines not only restrict physician discretion, but they also limit the treatment options available to patients. As a result, treatments which patients consider beneficial may not be recommended; for example, some hysterectomies for abnormal uterine bleeding, and cataract surgery in patients with dementia. When guidelines are used to determine which medical treatments a health care organization or insurer will cover, these recommendations become restrictions. Thus far, guidelines have been developed without adequate attention to the impact that their restrictive use has on diverse patient values.

Two significant tensions in current medical ethics relate to the inclusion of patient values in practice guidelines. First, a tension exists between the traditional paternalistic model of care, in which the physician judges unilaterally which treatments will benefit the patient, and the more recent autonomy model, in which the physician elicits the individual patient's health values to determine which treatments will be beneficial.

The United States Court of Appeals for the Third Circuit has followed the prevailing view in the federal courts by holding that state Medicaid funds must cover the same kinds of abortions as provided for under the 1994 Hyde Amendment. On July 25, 1995, the court held that a Pennsylvania law was preempted to the extent that it restricted Medicaid funding for abortions beyond the limits set by federal law (Elizabeth Blackwell Health Center for Women v. Knoll, No. 94-1954 (3d Cir. July 25, 1995)) by imposing additional procedures not prescribed by the Hyde Amendment.

Particularly, the court held that the Pennsylvania Abortion Control Acts (18 Pa. Cons. Stat. Ann. §§ 3201-20 (1983 & Supp. 1994)), whch requires victims of rape and incest to report the crime to law enforcement officials before Medicaid abortion funding is made available, exceeded the reporting requirements set by the Hyde Amendment, which provides a waiver for patients who are physically or mentally unable to comply with the reporting requirement.

On November 8, 1994, Oregon became the first state in the nation to legalize assisted suicide. Passage of Proposition 16 was a milestone in the campaign to make assisted suicide a legal option. The culmination of years of effort, the Oregon vote followed on the heels of failed referenda in California and Washington, and other unsuccessful attempts to enact state laws guaranteeing the right to suicide assistance. Indeed, in 1993, four states passed laws strengthening or clarifying their ban against assisted suicide. No doubt, Proposition 16 is likely to renew the effort to legalize assisted suicide at the state level.

The battle over assisted suicide is also unfolding in the courts. Litigation challenging Proposition 16 on the grounds that it violates the equal protection clause is ongoing in Oregon. More significantly, three cases, two in federal courts and one in Michigan state court, have been brought to establish assisted suicide as a constitutionally protected right.

In discussions of medical decision making as it applies to people with disabilities, a major obstacle stands in the way: the perceptions and values of disabled people (particularly disability rights advocates and disabled social scientists) and of many nondisabled people (particularly health care professionals, ethicists, and health policy analysts), regarding virtually the whole range of current health and medical-ethical issues (treatment decision making, health care access and health care rationing, medical costcontainment, and assisted suicide), seem frequently to conflict with one another. This divergence in part grows out of the sense, common among people with disabilities, that their interactions with “the helping professions,” medical and social service professionals, are adversarial. But those differences of opinion also stem more basically from a clash of fundamental values.

This paper addresses, in historical perspective, the ways in which the status of persons with disabilities as a stigmatized minority group affects medical decision making. It also examines the efforts of disability rights activists to prevent discrimination against persons with disabilities in current medical culture. Finally, it raises questions about how the rights of people with disabilities will fare as new care standards are developed and implemented.

In Barrett v. Danbury Hospital (232 Conn. 242; 654 A.2d 748 (1995)), the Supreme Court of Connecticut held that the fear of contracting or transmitting HIV or any other blood-borne pathogens is not a compensable injury and does not give rise to a negligence or a medical malpractice claim. The court's decision affirmed the holding of a Connecticut trial court.

In June 1990, Allen Barrett was admitted to Danbury Hospital complaining of abdominal pain. He had a history of gall bladder trouble. Barrett was placed on a stretcher in the emergency room. The attending physician diagnosed Barrett's pain as a gallstone condition. During the course of his examination, the doctor noticed that Barrett was sitting in blood. The physician subsequently performed a rectal examination of Barrett to locate the source of the blood. The physician determined that the patient was not bleeding, but that the blood was in fact coming from two slits in the vinyl pad that covered the stretcher on which Barrett sat.