Advanced care planning is the process by which individuals may ensure that their health care preferences are respected at the end of their lives. Written and verbal instructions, usually called advance directives, are intended to make sure that individual health care choices are communicated and instituted.

According to the Agency for Healthcare Research and Quality, 20% to 30% of all Americans have an advance directive. Fewer than half of severely or terminally ill patients have an advance directive. Primary care providers and physicians should address advanced care planning with their patients, preferably before a medical crisis occurs.

The Patient Self-Determination Act, implemented in the United States in 1991, is inherent in autonomous informed decision making and control over the dying process. The act is based on the values in American culture for autonomy regarding health care decisions. It is critical for primary care providers and physicians to develop a rapport with patients and families concerning their cultural norms and values to understand preferences.

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Self-determination and autonomous health care decisions are respected by the American public and integrated in medical professional ethics. Patients can make their own decisions unless they are deemed medically incompetent. Medical incompetency is generally defined as the lack of capacity to understand medical information and clearly communicate decisions.

Advance directives completed prior to the time that a patient who is adjudicated medically incompetent will be used to direct the health care proxy and or guardian in medical decision making (Philipsen et al. JNP. 2013;9[9]:581-587). When the patient is deemed medically incompetent, a guardian should be provided by the court system at the time of application to that court unless there is already a health care proxy identified by a legal document. 

The balance of self-determination and the introduction of a guardian are decided by the individual state regulations and/or case law. This process is necessary to protect patients who cannot make medical decisions. The continued need for dialog with court-appointed guardians when there is evidence of patient self-determination is paramount to ensure that individual health choices are taken into consideration. The objective for primary care providers and the physician team with regard to advance directives is to advocate for the patient’s wishes.

A Health Care Proxy, or Health Care Power of Attorney, is a document that allows a patient to legally appoint an agent to make health care decisions in the event that the patient is incapable of executing such decisions. The legal agent is activated when a qualified physician or advanced practice nurse determines that the patient is unable to make decisions regarding health care.

The American Medical Association Code of Medical Ethics and American Nurses Association Code of Ethics for nurse and interpretive statements have guidelines that address advocacy for the patient in relation to futile care and advance directive determination. Nurse codes of ethics recognize specific patient rights or self-determination regarding informed consent in health care (Dimick C. AHIMA. 2011;82[1]:26-30). A patient has the right to participate in self-determination as willing and able.

The patient has choices on how medical care is administered and how to die. The active choice of an advance directive is preferable to substituted judgment.

Karen Tepper, ANP-BC, LNHA, is a board-certified adult nurse practitioner, board-certified clinical specialist in home health, and a licensed nursing home administrator. She works for UnitedHealthcare in Massachusetts.