What is the importance of an advance directive?
Advance directives were developed as a result of widespread concerns over patients undergoing unwanted medical treatments and procedures in effort to preserve life at any cost. As outlined in the following section (history of advance directives), remarkable efforts were made to institute advance medical directives as a component of medical care in the United States over the last few decades.
From a practical standpoint, medical directives and living wills facilitate a person’s medical care and decision making in situations when they are temporarily or permanently unable make decisions or verbalize their decisions. By having previously documented personal wishes and preferences, the family’s and physicians’ immense decision-making burden is lightened. At the same time, patient autonomy and dignity are preserved by tailoring medical care based on one’s own choices regardless of mental or physical capacity.
Instructive directives (advance directives, living wills, and health care proxy designation) are completed by a person with decision-making capacity. They only become effective when a person loses his/her decision-making capacity (mentally incapacitated). While a person maintains ability to make decisions, he/she is the ultimate decision-maker rather than the health care proxy or surrogate decision-maker.
What is the history of advance directives?
Advance directives began to be developed in the United States in the late 1960s.
The first living wills: In 1967, an attorney named Luis Kutner suggested the first living will. Kutner’s goal was to facilitate “the rights of dying people to control decisions about their own medical care.”
In 1968, the first living will legislation was presented to a state legislature. Walter F. Sackett, a doctor elected to the Florida legislature, introduced a bill that would allow patients to make decisions regarding the future use of life-sustaining equipment. The bill failed to pass in 1968. Sackett reintroduced the bill in 1973 and it was again defeated.
While Dr. Sackett was introducing living will legislation in Florida, Barry Keene was presenting similar bills in the California legislature. Keene’s interest in living wills was based on personal experience. In 1972, Keene’s mother-in-law was unable to limit medical treatment for a terminal illness even after having signed a power of attorney. Keene was elected to the California State senate in 1974. The living will legislation he designed was defeated that same year. Keene reintroduced the bill in 1976 and in September of that year California became the first state in the nation to legally sanction living wills.
The states: Within a year, 43 states had considered living will legislation and seven states had passed bills. Advance directive legislation has subsequently progressed on a state-by-state basis. By 1992, all 50 states, as well as the District of Columbia, had passed legislation to legalize some form of advance directive.
The first court decision to validate advance directives was at the state level. The decision was handed down by the New Jersey Supreme Court in 1976. In Case 70 N.J. 10, 355 A 2nd 647, Chief Justice Robert Hughes upheld the following judicial principles:
- If patients are mentally unable to make treatment decisions, someone else may exercise their right for them.
- Decisions that can lead to the death of a mentally incompetent patient are better made not by courts but by families, with the input of their doctors.
- Decisions about end-of-life care should take into consideration both the invasiveness of the treatment involved and the patient’s likelihood of recovery.
- Patients have the right to refuse treatment even if this refusal might lead to death.
The case in which Judge Hughes ruled was the request by Joe Quinlan to make legally binding health care decisions for his daughter, Karen Ann Quinlan. As a result of the case, Karen Ann Quinlan was gradually weaned from mechanical ventilation.
The federal government: The U.S. federal government has evidenced its interest in advance directives through two of its bodies, the Congress and the Supreme Court.
The U.S. House of Representatives in 1991 enacted the Patient Self-Determination Act. The Act stipulates that all hospitals receiving Medicaid or Medicare reimbursement must ascertain whether patients have or wish to have advance directives. The Patient Self-Determination Act does not create or legalize advance directives; rather it validates their existence in each of the states.
It was not until 1990 that the United States Supreme Court agreed to hear a case on the legality of advance directives. The Supreme Court had been reticent to hear cases on advance directives, reflecting to some degree the belief that advance directives are determined at the state rather than federal level. In 1990, the Court heard Cruzan vs. Director. The case, similar to that of Karen Ann Quinlan, involved the desire to discontinue the percutaneous gastrostomy feedings of Nancy Cruzan. The United States Supreme Court decided in favor of the individual right to refuse treatment, even life-sustaining treatment. The Supreme Court refused to hand down a specific decision on medical treatment in the case. Following the opinion of the Supreme Court, the case was referred back to the Missouri Supreme Court. The Missouri Supreme Court heard testimony of a verbal advance directive that was deemed to be sufficient evidence to support the refusal of medical treatment.
The landmark Quinlan and Cruzan cases emerged out of similar situations and similar needs. Both cases dealt with the medical care of young, physically strong people in a persistent vegetative state. While similar in these regards, the two judicial decisions dealt with different types of advance directives. The case of Karen Ann Quinlan dealt with the ability of the individual to appoint a health care proxy. The case of Nancy Cruzan addressed the right of a healthy individual to establish a binding living will.