Chapter 49. Advance Planning For End-of-Life Care

Physicians and other health care workers have long struggled with decisions regarding care for patients at the end of life. An important component of this care involves assessing and understanding patient preferences for care through ongoing discussions with competent adult patients and/or their family members or surrogates. Advance care planning protects patient autonomy and helps to assure that their health and medical treatment wishes are implemented. Good communication at the end of life can also help patients achieve closure and meaning in the final days of their life. Over the past 20 years, public consciousness regarding planning for end-of-life care has been raised through several seminal court cases, such as those involving Karen Ann Quinlan and Nancy Cruzan. These cases and the public interest they helped engender led to legislation promoting patients’ rights to determine their care at the end of life. For example, Natural Death Acts (statutes passed by State legislatures that assert a person’s right to make decisions regarding terminal care) have helped promote the use of living wills (described below). In addition, in 1990 the Federal Patient Self-Determination Act (PSDA) was passed by Congress to encourage competent adults to complete advance directives. The PSDA requires hospitals, nursing homes, health maintenance organizations, and hospices that participate in Medicare and Medicaid to ask if patients have advance directives, to provide information about advance directives, and to incorporate advance directives into the medical record. Advance directives are any expression by a patient intended to guide care, should they lose their medical decision making capacity. Although both oral and written statements are valid, the added effort required to complete written statements gives them greater weight. In addition to their use when patients lose competence, advance directives also help patients consider the type of care they would want in the future, even if they retain decision making capacity. Advance directives have legal validity in almost every State. There are 2 principal forms of written advance directives: living wills and durable powers of attorney for health care. A living will is a document that allows an individual to indicate the interventions he or she would want if he or she is terminally ill, comatose with no reasonable hope of regaining consciousness, or in a persistent vegetative state with no reasonable hope of regaining significant cognitive function. A durable power of attorney for health care (DPOAHC) is a more comprehensive document that allows an individual to appoint a person to make health care decisions for him or her should he or she lose decision making capacity.