Did you know that if you don't put your wishes in writing, then not even the courts have the authority to unhook you from a life support machine?

What is a Health care directive?
A health care directive is a written document that states your wishes regarding your medical care should you become incapable of communicating them. A health care directive also identifies who you authorize to make medical decisions on your behalf should you become incapacitated.

Health Care Directive Information

Summary of Janet's notes for "Literature Review on Advance Directives" from US Department of Health & Human Services.

Chronic Illness: Chronic illnesses are now the leading causes of death for Americans and few "die suddenly." Rather, most will live long, but with increasing disability. However, health care, legal and social policy and practice have yet to catch up with this reality. Studies indicate that the end of life is associated with a substantial burden of suffering among dying individuals and that negative health and financial consequences extend to family members and society.

Death: Most deaths (80%) occur in hospitals or nursing homes, often in the context of aggressive high technology treatment, even though most people, when asked, would prefer to die at home. The transition in the venue of death has fueled the development of technology that is capable of sustaining life in very compromised states and, in the view of some, of extending the dying process. Interventions delay or slow dying in the United States, although they do not necessarily improve the dying process.

Health Care Agents: All 50 states and the District of Columbia recognize the appointment of an agent for health care decisions; however, three states do have laws authorizing instructional health care directives (Massachusetts, Michigan and New York). In 1976, California passed the Natural Death Act, the first law to give legal force to living wills.

Cases:
A pivotal case from 1975 involved Karen Ann Quinlan, a 21 year old woman who, after cardiac arrest, was resuscitated but remained in a persistent vegetative state. In 1976, the New Jersey Supreme Court granted her parents the right to withdraw life-support, holding that an individual's constitutional right to privacy outweighed the state's interest in preserving life.

A case that further clarified legal authority in end-of-life decision making involved Nancy Cruzan, age 32, who in 1983 was involved in an automobile accident that left her in a persistent vegetative state. A seven year court battle reached the Supreme Court, which ruled that while Cruzan had the right to refuse tube feedings, the state could demand clear and convincing evidence that this was her expressed desire. On that basis, the state may constitutionally set high barriers for decisions to withdraw food and water from incompetent patients when the patients have not spoken clearly themselves.

Difficulties with Health Care Directives:
An obstacle to decision making toward the end of life arises when families (or rarely patients) desire care of greater aggressiveness than is deemed warranted by providers.

Using Health Care Directives to extend patient autonomy requires that clinicians know when patients lose capacity (or decision making ability) in order to invoke the Health Care Directive. This skill must be coupled with the realization that capacity may wax and wane and variable levels of capacity may be required for different decisions. In practice, decision making capacity is often assessed informally or inconsistently and there are many misconceptions about capacity in a clinical context. There is little consensus or clinically relevant empirical data about how to assess a person's level of understanding of specific treatment decisions. Furthermore, there is a need to explore how and in what ways elements of Health Care Directives and treatment choices need to be modified to allow great participation of cognitively impaired patients.