History Of Advance Directives

In 1967, attorney and activist Luis Kutner developed the first advance directive in response to rapidly changing trends in end-of-life care. Soon after, legislators in a number of states began to warm up to the idea. In 1968, Dr. Walter Sackett introduced a bill in the Florida legislature that would have given patients the right to make their own decisions about life-saving medical care. Unfortunately, the bill did not pass, and it was defeated again when Sackett reintroduced it in 1973. 

Around the same time that Sackett was introducing his legislation for the second time, Barry Keene, a legislator in California, introduced a similar bill in that state. The measure also failed, but Keene reintroduced it in 1976. That time the bill passed, and California became the first U.S. state to codify the right to create a living will. Forty-three states soon introduced similar legislation, and by 1977, seven of the bills had passed. Fifteen years later, all 50 states and the District of Columbia had legally sanctioned advance directives to some degree. 

Still, the existence of legislation did not mean that every patient or their surrogate was free to make decisions about their medical care. State laws were inconsistent, and doctors were reluctant to relinquish decision-making power to patients or their families. As conflicts arose, it was inevitable that the courts would become involved. 

The first so-called “right to die” case to be heard in the U.S. was in the New Jersey Supreme Court in 1976. The plaintiff was Joe Quinlan, the father of Karen Ann Quinlan, who had lapsed into a coma after consuming alcohol and Valium shortly after her 21st birthday in 1975. After doctors determined that Karen was in a persistent vegetative state, her father requested that her doctors take her off life support. Fearing prosecution, they refused, and her father sued. The case eventually made it to the New Jersey Supreme Court, where, in a landmark decision, Chief Justice Robert Hughes granted Quinlan’s request. In his decision, Hughes cited the following principles:

• Surrogates have the right to make treatment decisions for patients who are physically and/or mentally unable to make decisions themselves.
• Decisions that can lead to the death of a patient who is unable to make their choices known should be made by the family in consultation with the patient’s doctors, not the courts.
• Decisions to continue or refuse medical treatment should consider the invasiveness of the treatment and the patient’s prospects of recovery.
• Patients and, by extension, their legal surrogates or guardians have the right to refuse medical treatment even if it leads to death.

Karen Ann Quinlan was taken off the ventilator shortly afterward. Still, her parents elected to continue tube feedings and other noninvasive care. In a cruel twist of fate, Quinlan lived for nine more years. She died of pneumonia in 1985. 

Federal Oversight of Advance Directives

Although legislation concerning advance directives has historically been left to the states, the federal government did step into the fray in 1990 when Congress passed the Patient Self-Determination Act. Concerned that some healthcare facilities were subjecting the elderly and disabled persons to cruel and unnecessary treatment to increase their profits, lawmakers made it mandatory for all hospitals and nursing homes to inform patients of their right to create an advance directive and to refuse any medical treatment they did not wish to receive. The law did not create new individual rights but rather validated the rights guaranteed by the 14th Amendment, which includes the right to make autonomous, informed decisions about one’s medical care. Specifically, the law required healthcare providers who receive reimbursement from Medicare or Medicaid to do the following:

• Provide written notice to patients of their decision-making rights at the time of admission.
• Provide written information about state laws and institutional policies regarding advance directives.
• Ask the patient if they have an existing advance directive, and if they do, note it in the patient’s chart.
• Inform the patient of their right to do the following:
  • Make their own healthcare decisions.
  • Accept or refuse treatment.
  • Create an advance directive.

During that same year, the Supreme Court heard the case of Nancy Cruzan, a 32-year-old woman who had suffered a cardiorespiratory arrest after a car accident in 1983. Like Karen Ann Quinlan, Cruzan was in a persistent vegetative state, although she was able to breathe on her own. She received nutrition through a feeding tube.

In 1988, five years after her accident, Cruzan’s parents asked her doctors to stop artificial nutrition and hydration and allow their daughter to die a natural death. But in the absence of any evidence that her parents were accurately representing what their daughter would have wanted if she could speak for herself, doctors refused. The case eventually made its way to the Supreme Court of Missouri, which sided with her doctors, stating that the state had a duty to require “clear and convincing evidence” that Nancy would have chosen to die.

The U.S. Supreme Court heard the case in 1990 but failed to rule on the specifics of the case. Instead, in a 5-4 decision, the Court affirmed that the State of Missouri had acted constitutionally in refusing to grant the family’s request. The state withdrew from the case at that point, convinced that it had won the more significant constitutional victory. Shortly after that, Cruzan’s parents presented additional evidence to the Jasper County Court that Nancy would have wished to die rather than live in a vegetative state. The lower Court quickly granted their request. Nancy’s feedings were discontinued on Dec. 14, 1990, and 12 days later, she died.

Both the Quinlan and Cruzan cases set groundbreaking legal precedents and affirmed the importance of a written advance directive and healthcare proxy for all adults. 

Sources

“Dr. Walter Wallace Sackett Jr”. Orlando Sentinel. https://www.orlandosentinel.com/1985/10/07/dr-walter-wallace-sackett-jr-79-a/ 

“Resources”. Center for Practical Bioethics. https://www.practicalbioethics.org/resources/ 

“Persistent Vegetative State and Minimally Conscious State”. Deutsches Arzteblatt International. https://pmc.ncbi.nlm.nih.gov/articles/PMC4413244/ 

“Advance Medical Directives”. MedicineNet. https://www.medicinenet.com/advance_medical_directives/article.htm 

“Law for Older Americans”. American Bar Association. https://www.americanbar.org/groups/public_education/resources/law_issues_for_consumers/patient_self_determination_act/ 

“14th Amendment”. Cornell Law School. https://www.law.cornell.edu/constitution/amendmentxiv 

“Nancy Beth CRUZAN, by her Parents and Co-Guardians, Lester L. CRUZAN, et ux., Petitioners v. DIRECTOR, MISSOURI DEPARTMENT OF HEALTH, et al.” Cornell Law School. https://www.law.cornell.edu/supremecourt/text/497/261