I. ORIGIN AND NATURE OF PATIENTS'RIGHTS

In most industrialized countries it is taken for granted that citizens have a right to medical care, but there is much less recognition of rights in medical care. In the United States, in contrast, concentration has historically been on rights that individuals may exercise in the medical-care context, whereas only in the mid-1990s has discussion begun to focus on rights to medical care (or at least the right to medical insurance). From "informed consent" to the "right to abortion" to the "right to die," patients' rights have become both a political slogan and a part of broader political agendas.

Although initially the trend toward recognizing patients' rights concentrated on the institutional setting in which medical care was delivered, and focused on issues such as natural childbirth and informed consent, by the 1990s the trend was visible throughout the healthcare system in the United States and was spreading internationally.

The doctor–patient relationship has historically been described as based on trust rather than on the monetary considerations evident in the more typical business transaction. Nevertheless, increased expectations and increased cost have contributed to patients' views of themselves as "consumers," and by the 1980s hospitals began considering themselves private businesses. U.S. courts and legislatures had previously moved to protect the weaker party from abuses of power in areas formerly unregulated, such as landlord–tenant, seller–buyer, creditor–debtor, employer– employee, police–suspect, and warden–prisoner relationships. The law has now also come to the aid of patients asserting their rights in medical situations.

The recognition of patients' rights flows from two fundamental premises: (1) The healthcare consumer possesses certain interests, many of which may properly be described as rights, that are not automatically forfeited by entering into a relationship with a physician or a healthcare facility; and (2) many physicians and healthcare facilities fail to recognize the existence of these interests and rights, fail to provide for their protection or assertion, and frequently limit their exercise without recourse (Annas and Healey).

History

In 1969, the Joint Commission on Accreditation of Hospitals (JCAH)—a private, voluntary accreditation organization composed of members from the American Hospital Association (AHA) and the American Medical College of Surgeons—issued its proposals for revisions in its standards. The National Welfare Rights Organization (NWRO), a grass-roots consumer organization spawned during the activist 1960s, responded in June 1970 by drafting a document containing twenty-six demands; this was the first comprehensive statement of "patients' rights" from the consumers' perspective. Included were provisions for such things as grievance procedures, community representation on hospital governing boards, nondiscrimination on the basis of source of payment, restrictions on transfers, provisions on privacy and confidentiality, and prompt attention to patients' requests for nursing assistance (Silver). After months of negotiation, a number of these items were specifically written into the revised standards of the JCAH. By the late 1980s, issues of access to care, of respect and dignity, privacy and confidentiality, consent, refusal of treatment, and patient transfer to another facility were specifically addressed in a new section of their accreditation manual called "Rights and Responsibilities of Patients" (Annas, 1989).

In late 1972, the American Hospital Association adopted a Patient Bill of Rights based on the premise that "[the] traditional physician–patient relationship takes on a new dimension when care is rendered within an organizational structure … the institution itself also has a responsibility to the patient." The text of the AHA bill of patient rights called for acknowledgment of the rights to (1) respectful care; (2) current medical information; (3) information requisite for informed consent; (4) refusal of treatment; (5) privacy; (6) confidentiality; (7) response to requests for service; (8) information on other institutions touching on the patient's care; (9) refusal of participation in research projects; (10) continuity of care; (11) examination and explanation of financial charges; and (12) knowledge of hospital regulations. In 1992, items on access to medical records and use of advance directives were added. Although the listing remains vague and incomplete, and there is no enforcement mechanism, it moves in the direction of more adequately informing patients of their rights.

Between 1974 and 1988, many states, including Arizona, California, Illinois, Kentucky, Maryland, Massachusetts, Michigan, Minnesota, New Hampshire, New York, Pennsylvania, Rhode Island, and Vermont, adopted a patients' bill of rights by regulation or statute (Annas, 1989). All fifty states have adopted some form of advance healthcare directive document, such as a living will or durable power of attorney, in which people can express their wishes regarding medical care should they become incompetent. Both former President Nixon and Jacqueline Kennedy Onassis used such documents in 1994.

The American Medical Association (AMA), probably because of its traditional paternalistic philosophy, did not seriously consider adopting its own version of the patients' bill of rights until 1989. Five of the six provisions of its proposal—the rights of patients to access information in the medical record and to make treatment decisions and the rights to respect, to confidentiality, and to continuity of care—seem to have been uncontroversial. The bill of rights was rejected by the AMA House of Delegates, however, because of its sixth provision: "The patient has the right to essential health [medical] care." In the absence of some national healthcare program, or unless the patient has a preexisting relationship with a physician or insurance program or is experiencing an emergency medical condition, there is no "right to medical care" in the United States (although opinion polls taken since 1948 show that most physicians and Americans believe this right either exists or should exist).

International Scope of the Movement

Although "rights talk" is uniquely American (as are the Bill of Rights and Declaration of Independence), the patients' rights movement should not be viewed as unique to any one country. In 1975, for example, the Parliamentary Assembly of the Council of Europe submitted a draft recommendation to its sixteen member-nations recommending that all necessary action be taken to ensure that the sick can receive relief from their suffering and that people can prepare adequately for death; that commissions be established to study the issue of euthanasia; and that physicians be impressed "that the sick have a right to full information, if they request it, on their illness and the proposed treatment, and to take action to see that special information is given when entering hospitals as regards the routine, procedures and medical equipment of the institution." By 1990, work on a European Declaration of the Rights of Patients was well under way (Westerhall and Phillips; Leenen et al.). In 1991, a national conference on patients' rights was held in Japan, and at the impetus of tort lawyers and some physicians, a trend toward recognizing patients' rights is developing in that country as well.

The worldwide trend toward recognizing human rights in health should be viewed in context of the worldwide trend toward recognizing human rights in general. Recognition of rights to bodily integrity in general, for example, translates into a right to refuse treatment in the medical context. In this regard documents such as the Nuremberg Code (1947), the United Nations Universal Declaration of Human Rights(1948), and the United Nations International Covenant on Civil and Political Rights (1966) should be viewed as foundational (Annas and Grodin; Sieghart).

Patients' Rights in Context

Historian Paul Starr discusses the patents' rights movement in the United States as part of the "generalization of rights," distinguishing the movement to recognize healthcare as a basic human right (still unfulfilled) from the movement to work for rights in healthcare. In his words, "The new health care rights movement went beyond traditional demands for more medical care and challenged the distribution of power and expertise" (p. 389). Grass-roots consumer organizations in some states, such as Oregon, have begun to influence health policy, as have activist groups such as ACT-UP. Courts, of course, have contributed greatly to this trend, especially through decisions defining the doctrine of informed consent and by upholding treatment refusals as an individual's right to the exercise of liberty. But no one should have to go to court to have rights vindicated. Some have suggested the establishment of ethics committees to help patients enforce their rights, but such committees usually represent institutional interests more than the rights of individual patients (Annas, 1993). There is a need for an effective enforcement mechanism and an efficient dispute-resolution mechanism. Institutional and professional interests have made agreement on these issues difficult, and legal requirements to adopt such mechanisms may be needed.

One effective method of protecting patients' rights would be the establishment, either by the government under a national healthcare system or by health-insurance plans, of a patients' rights advocate program. The advocate should have the authority, under the direction of the patient, to exercise the patient's rights and powers on behalf of the patient. Such individuals could operate at the institutional level, but they are more likely to be effective in health plans, multi-institutional settings, and, of course, under any national health plan (Annas and Healey).

george j. annas (1995)

bibliography revised

SEE ALSO: Abortion: Contemporary Ethical and Legal Aspects; Abortion: Legal and Regulatory Issues; Abuse, Interpersonal; Access to Healthcare; Autonomy; Confidentiality; Conscience, Rights of; Disability: Legal Issues; Ethics: Normative Ethical Theories; Feminism; Genetic Discrimination; Human Rights; Informed Consent; Law and Bioethics; Law and Morality; Privacy and Confidentiality in Research; Privacy in Healthcare;Race and Racism; and other Patients' Rights subentries

BIBLIOGRAPHY

Annas, George J. 1989. The Rights of Patients: The Basic ACLU Guide to Patient Rights, 2nd edition. Carbondale, IL: Southern Illinois University Press.

Annas, George J. 1993. Standard of Care: The Law of American Bioethics. New York: Oxford University Press.

Annas, George J. 1998. Some Choice: Law, Medicine, and the Market. New York: Oxford University Press.

Annas, George J., and Grodin, Michael A., eds. 1992. The Nazi Doctors and the Nuremberg Code: Human Rights in Human Experimentation. New York: Oxford University Press.

Annas, George J., and Healey, Joseph M., Jr. 1974. "The Patient Rights Advocate: Redefining the Doctor-Patient Relationship in the Hospital Context." Vanderbilt Law Review 27(2): 243–269.

Baker, Robert; Emanuel, Linda L.; Caplan, Arthur; and Latham, Stephen R., eds. 1999. The American Medical Ethics Revolution: How the AMA's Code of Ethics Has Transformed Physicians' Relationships to Patients, Professionals, and Society. Baltimore: Johns Hopkins University Press.

Buetow, S. 1998. "The Scope for the Involvement of Patients in their Consultations with Health Professionals: Rights, Responsibilities and Preferences of Patients." Journal of Medical Ethics 24(4): 243–247.

Corsino, Bruce V. 1996. "Bioethics Committees and JCAHO Patients' Rights Standards: A Question of Balance." Journal of Clinical Ethics 7(2): 177–181.

D'Oronzio, Joseph C. 2001. "A Human Right to Healthcare Access: Returning to the Origins of the Patients' Rights Movement." Cambridge Quarterly of Healthcare Ethics 10(3): 285–298.

Gross, Michael L. 1999. "Autonomy and Paternalism in Communitarian Society: Patient Rights in Israel." Hastings Center Report 29(4): 13–20.

Inlander, Charles B., and Pavalon, Eugene I. 1990. Your Medical Rights: How to Become an Empowered Consumer. Boston: Little, Brown.

JCAHO (Joint Commission on Accredation of Healthcare Organizations). 1998. Ethical Issues & Patient Rights across the Continuum of Care. Washington, D.C.: Author.

Kinney, Eleanor Dearman. 2002. Protecting American Health Care Consumers. Durham, NC: Duke University Press.

Leenen, Henk; Gevers, Sjef; and Pinet, Genevieve. 1993. The Rights of Patients in Europe: A Comparative Study. Deventer, Netherlands: Kluwer.

Mann, Jonathan; Gruskin, Sofia; and Grodin, Michael A., eds. 1999. Health and Human Rights. London: Routledge.

Parker, Lisa S. 1995. "Incidental Findings: Patients' Knowledge, Rights, and Preferences." Journal of Clinical Ethics 6(2): 176–179.

Schneider, Carl E. 1998. The Practice of Autonomy: Patients, Doctors, and Medical Decisions. New York: Oxford University Press.

Sieghart, Paul. 1983. The International Law of Human Rights. Oxford, U.K.: Clarendon Press.

Silver, Laurens H. 1974. "The Legal Accountability of Nonprofit Hospitals." In Regulating Health Facilities Construction, pp. 183–200, ed. Clark C. Havighurst. Washington, D.C.: American Enterprise Institute.

Starr, Paul. 1982. The Social Transformation of American Medicine. New York: Basic Books.

Sweet, M. P., and Bernat, J. L. 1997. "A Study of the Ethical Duty of Physicians to Disclose Errors." Journal of Clinical Ethics 8(4): 341–348.

Westerhall, Lotta, and Phillips, Charles, eds. 1994. Patient's Rights: Informed Consent, Access and Equality. Stockholm: Nerenius & Santérus.

Worth-Staten, Patricia A., and Poniatowski, Larry. 1997. "Advance Directives and Patient Rights: A Joint Commission Perspective." Bioethics Forum 13(2): 47–50.