Advance Directives - Importance Of Communication For End-of-life Care

The consideration of an advance directive should be the start of an ongoing discussion among the individual, family members, and the family doctor about end-of-life health care. Discussions about one's advance directive do not have to be limited to treatment preferences and medical circumstances. Sometimes knowing things such as the patient's religious beliefs and values can be important for the proxy when speaking for the patient's interests. The Center for Health Law and Ethics at the University of New Mexico has devised a values questionnaire to help people examine their attitudes about issues related to illness, health care, and dying. It may serve as a valuable tool to guide discussions between the patient and the proxy, as well as among family members.

When preparing an advance directive, it is vitally important for the family and proxy to fully understand the care and measures that are wanted. Even when a patient has a living will calling for no "heroic measures," if the family demands such medical intervention, it is likely that the hospital or doctor will comply with the family's wishes rather than risk a lawsuit.

Highlighting the need for communication, a 1998 study of 250 terminally ill patients and their families showed that only 66% of the families surveyed accurately predicted the level of treatment their dying family member would want. Researchers from the Georgetown University Center for Clinical Bioethics separately questioned the patient and the patient's likely surrogate about the treatment that the patient would desire in three different end-of-life scenarios. One-third of the surrogates chose differently than the patient, evenly divided between picking too much and too little treatment.

Bernard Lo and Robert Steinbrook also highlight the need for patient-physician communication regarding end-of-life matters in "Resuscitating Advance Directives" (Archives of Internal Medicine, vol. 164, no. 14, July 26, 2004). The authors state that "Advance directives have not fulfilled their promise of facilitating decisions about end-of-life care for incompetent patients," and explain that legal requirements and restrictions make it difficult for patients to complete advance directives during visits to their doctors. They suggest that the patient's discussion with the physician is probably more important to the patient's end-of-life care than is the legal document. Lo and Steinbrook thus conclude that the procedures for the written advance directives should be simplified to foster this discussion.

The National Conference of State Legislatures and the Center to Improve Care of the Dying also recognize that standard advance directives may not be applicable to specific medical conditions and to medical conditions that may evolve over time. Thus, if patients have had end-of-life care discussions with their physicians, Lo and Steinbrook suggest, then "physicians can identify and correct misunderstandings about the medical situation, options, and outcomes." The NCSL and the CICD believe that—in addition to patient-physician discussions—patients should have access to advance directives that are flexible enough to allow for changes in their medical conditions and end-of-life education as was initially intended in the Patient Self-Determination Act of 1990.