Patient Rights

Historical Development and Context

Multiple cultural and historical events and developments have shaped the patient rights movement during the second half of the 20th century. One development was the Civil Rights Movement in the United States immediately after World War II. This movement aimed to abolish racial discrimination and segregation and to reassert the dignity and equality of all persons regardless of racial, cultural, or socioeconomic background. Based on the U.S. Declaration of Independence's rights of “life, liberty and the pursuit of happiness,” the Civil Rights Movement and its core values emphasized dignity and respect owed to all persons and equal opportunities and freedom for each person to live, work, be educated, and participate in society.

In the 1960s and 1970s, a second set of events leading to the patient rights movement were revelations that many persons had been abused as research subjects. Through the Nazi war crimes trials at Nuremberg (1945–1949), the world learned about the atrocities that occurred in Germany in the name of science before and during World War II. However, two decades after the war, as the medical research enterprise continued to expand, there was publication of instances of exploitation of vulnerable persons (e.g., those with mental disabilities, children, orphans, prisoners, African Americans) in the name of scientific advancement. The core principles of the Nuremberg Code for human research, focusing on voluntary consent and on research subjects' sufficient knowledge and comprehension of proposed research projects, were being ignored. The outcry against this exploitation resulted in regulatory protections for research participants and a reemphasis on the rights of research subjects to be engaged in a voluntary, informed consent process prior to research participation. In 1979, the Belmont Report listed and explained three fundamental ethical principles for governing research: respect for persons, beneficence, and justice.

A third development is captured by a set of court cases focusing on the rights of patients to make their own healthcare decisions, including the right to consent to or refuse medical treatment. For example, in 1972, the Circuit Court for the District of Columbia established an objective standard for disclosure in the informed consent process. In Canterbury v. Spence, this court recognized “the prudent-patient test” for disclosure of healthcare information. In essence, this patient-centered “test” is what a prudent person in the patient's position would have wanted to know about the significant risks, harms, and potential benefits associated with the proposed procedure or treatment in order to make an informed decision. In Roe v. Wade, the U.S. Supreme Court established a woman's personal right to an abortion; the court justified this assertion by appealing to a right to privacy found in the U.S. Constitution. As a final example, the New Jersey Supreme Court, In re Quinlan, found that the constitutional right to privacy encompasses a patient's right and decision to refuse medical treatment, especially when the degree of the treatment's bodily invasiveness increases and the patient's prognosis diminishes.

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