Patients’ rights

In addition to granting patients the means for the effective redress for negligent injury (which increases the cost of malpractice insurance for physicians—and thus the cost of medical care), malpractice litigation has also promoted what have come to be called patients’ rights.

Patients’ rights are based upon two fundamental premises: (1) the patient has certain interests, many of which may be properly described as rights, that are not automatically forfeited by entering into a relationship with a doctor or health care facility; and (2) doctors and health care facilities may 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.

Perhaps the most important development in patients’ rights has been that in the United States regarding the doctrine of informed consent. Originally articulated in the 1947 Nuremberg Code as applied to human experimentation, today it applies to medical treatment as well. This doctrine requires physicians to share certain information with patients before asking for their consent to treatment. The doctrine is particularly applicable to the use of surgery, drugs, and invasive diagnostic procedures that carry risks. It requires the physician to describe the procedure or treatment recommended and to list its major risks, benefits, alternatives, and likely prospect for recuperation. The purpose is to promote self-determination by patients on the theory that it is the patient who has the most at stake in treatment and who relies largely on the physician for such information. British courts have rejected this formulation on the basis that the average British citizen does not want such information, and British physicians do not generally provide it unless requested.

Although the patients’ rights movement began in the United States in the early 1970s, the most articulate and complete statement regarding patients’ rights appears in the 1997 Council of Europe Convention on Human Rights and Biomedicine. The general purpose of the convention is to “protect the dignity and identity of all human beings and guarantee everyone, without discrimination, respect for their integrity and other rights and fundamental freedoms with regard to the applications of biology and medicine.” Specific human rights included in the convention are equitable access to health care, informed consent, rights to emergency care, and respect for privacy and confidentiality. The convention also contains specific rules regarding the human genome, human experimentation, and organ donation. The provisions of the convention are to be judicially enforced by the courts in the countries party to the convention.

The 1997 Convention on Human Rights and Biomedicine forms part of an international trend, particularly in public health, in which physicians and lawyers work together to improve the health of populations and to secure human rights. American epidemiologist Jonathan M. Mann labeled this the “Health and Human Rights” movement. This movement grew out of the HIV/AIDS epidemic and the recognition that an effective response to the epidemic required taking human rights seriously, especially rights to nondiscrimination, education, equality of women, and access to health care. Physicians and lawyers often work together in nongovernmental organizations, such as Doctors Without Borders, Physicians for Human Rights, and Global Lawyers and Physicians, to try to improve health and human rights on an international level. Although a daunting task given the variety of specific problems and institutional settings in which health care is delivered around the world, it is possible that an international patient bill of rights will be developed in the future.

Many hospitals and health care organizations have adopted their own patient bill of rights, often modifying the rights to suit the needs of the health care services and the needs of patients. Basic rights of a patient should include rights to clear communication; accurate information concerning possible medical care and procedures; informed participation in all decisions about the patient’s health care program; and a clear, concise explanation of all proposed procedures, including possible risks, side effects, and problems related to recuperation.

Patients also should have rights regarding quality of care, including rights to an accurate evaluation of their condition and prognosis without treatment; knowledge of the identity and professional status of those providing services; information contained in their medical record; access to consultant specialists; and refusal of treatment.

The patient should have basic human rights, including the right to privacy of both person and information, the right of access to people outside the health care facility, and the right to leave the health care facility regardless of his or her condition.

Until the 1960s, law and medicine met only in the courtroom, and even then they met usually only in cases involving pathology or psychiatry. Since then, however, civil litigation, public financing, and ethical issues have grown, at least partially as a result of the incredible successes of medicine. These successes have increased public expectations and costs of medical care and have made decisions about terminating care more ambiguous. The importance of health and human rights and enhancing patients’ rights are two contemporary concerns on which both medical and legal practitioners agree.