[This article was originally published on May 12, 2003. The links were updated on August 16, 2018.]
When seriously ill patients are nearing the end of life, they and their families sometimes find it difficult to decide whether to continue medical treatment and, if so, how much treatment is wanted and for how long. In these instances, patients rely on their physicians or other trusted health professionals for guidance.
In the best of circumstances, the patient''s wishes regarding treatment have been set down in an advance medical directive known as a living will. This is a formal legal documents specifically authorized by state laws that provides instructions for care in case the patient becomes incapacitated and cannot make decisions. A medical directive may also be a health care proxy. This document allows the patient to designate a surrogate, a person who will make treatment decisions for the patient if the patient becomes too incapacitated to make such decisions.
But research by the Agency for Healthcare Research and Quality (AHRQ) indicates that most patients have not participated in advance care planning, even though many are willing to discuss end-of-life care. Less than 50 percent of the severely or terminally ill patients studied had an advance directive in their medical record, and only 12 percent of patients with a medical directive had received input from their physician in its development
Moreover, AHRQ research found that even the existence of a medical directive is no guarantee that the patient''s wishes will be followed. Between 65 and 76 percent of physicians whose patients had a medical directive were not aware that it existed. It''s no surprise, therefore, that research shows that care at the end of life sometimes appears to be inconsistent with the patients'' preferences to forgo life-sustaining treatment, and patients may receive care they do not want.
According to the AHRQ, lack of communication between patients and physicians and other health care providers is a chief culprit. One AHRQ study indicated that about one-third of patients would discuss advance care planning if the physician brought up the subject and about one-fourth of patients had been under the impression that advance care planning was only for people who were very ill or very old. AHRQ-funded studies have shown that discussing advance care planning and directives with their doctor increased patient satisfaction among patients age 65 years and over.
An article on the findings, "Advance Care Planning: Preferences for Care at the End of Life," suggests processes that physicians can use to structure discussions with patients on end-of-life care.
For the AHRQ article, go to: http://www.ahrq.gov/research/endliferia/endria.htm
For more on medical directives, click here.