Faculty Bibliography

The legitimacy of paternalism in health care relationships has been severely criticized by those in the field of medical ethics. Critics have argued that paternalism has no place in physician/patient encounters. Patients must always be treated as autonomous agents, capable of directing the course of their medical care. Informed consent has come to represent the mechanism through which autonomy can best be assured in medical relationships. If provider/patient interactions are viewed as a contract between consenting agents, then providers are obligated to obtain informed consent for all interventions they wish to undertake. This view, however, relies upon examples of care provided to those with acute medical problems. In rehabilitation, it can be argued that for some patients at some times during their care, a contractual model would be inappropriate. Especially when patients have undergone a sudden and unexpected course of severe impairment, it is difficult to conceptualize provider/patient relationships in the context of a contract. Providers are more accurately seen as acting in educational roles toward those in their care. If this is so, then there may be instances in which paternalistic behavior toward rehabilitation patients is ethically justified. Informed consent must be carefully examined if it is to be a useful doctrine in the context of rehabilitative care.

KIE: The demands of equity and efficiency require a program of universal health insurance in the United States through which all workers will be provided by their employers with health insurance for themselves and their dependents, unemployment will no longer result in the loss of health insurance protection, and federal standards for Medicaid eligibility will be instituted. Issues raised by the assessment of insurance coverage and establishment of uniform standards are discussed within the context of the ethical foundations of medical necessity, schemes for sharing the burden of cost, and the conflict between technological advances and the limitation of resources. Cost containment measures now most prominently on the public agenda represent an unfortunate trend toward exacerbating inequalities by making the patient the main cost container. Moral priority must be given to remedying the patterns of inequality that characterize the American health care system.

The various forms of protection devised by society for human subjects are examined. These are government regulation, informed consent, review at the local institutional level, and legal protection (malpractice suits). The related issue of how to define research is discussed.

KIE: This Hastings Center Report supplement is derived from the Center's three-year "Ethics and Chronic Illness" project. The project was premised on the idea that chronic illness is a distinctive experience, and that chronic care is different in nature from the acute care that is the current focus of American medicine. In our aging society, the prospect of widespread disability and chronic illness is "a spectre haunting the American health care system." The reality of chronic illness could transform many pervasive assumptions about medical goals and ethics. With this report, the authors intend to stimulate a broader discussion of the ethical issues distinctive to chronic illness, and to outline an agenda for future bioethical investigation. They also hope to articulate the rudiments of a moral vision to guide the health care system, welfare services, families, and communities as they face the challenges of providing chronic care.

Dr. [W. Dudley Johnson] is hardly the only physician to declare that the risk of contracting the deadly disease justifies excluding patients with the AIDS virus from his practice. Many medical students are unwilling to apply for residency programs in New York or San Francisco, where the incidence of people carrying the AIDS virus is unusually high. A number of transplant surgeons have refused to perform operations where the patient may be a carrier