Elders' preferences for end-of-life care are not captured by documentation in their medical records

Research Activities, June 2011, No. 370

Advance care planning informs medical decisionmaking for seriously ill patients, particularly older patients. This planning typically includes several elements: documentation of patient preferences for care, designation of a surrogate decisionmaker to enact those preferences, and the completion of an advance directive. Despite acceptance of advance care planning and advance directives in the care of older patients, less than 30 percent of Americans, including those with chronic disease, have advance directives.

To understand why advance care planning is not more successful, a team of Los Angeles-based researchers analyzed the flow of advance care planning information from patients to medical records by examining two Assessing Care of Vulnerable Elders (ACOVE) studies. These two studies compared patient preferences in these areas, as expressed in structured interviews, with information found in their medical records. The vast majority of the seriously ill elderly (88 to 93 percent) preferred to die rather than remain permanently in a coma, on a ventilator, or tube fed. In ACOVE-1 and ACOVE-2, 67 percent and 73 percent of patients, respectively, reported having an advance directive compared with less than 30 percent of people nationally.

Yet only 15-22 percent of patients had preference information in their medical record. Among patients who reported that they had completed an advance directive and had given it to their health care provider, 15 percent (ACOVE-1) and 47 percent (ACOVE-2) had advance directive information in the medical record. Among patients who had not completed an advance directive but reported that they had given surrogate decisionmaker information to their provider, 0 percent (ACOVE-1) and 16 percent (ACOVE-2) had documentation of this in the medical record.

The researchers believe that electronic health records and standardized data collection for end-of-life care could begin to ameliorate the problem of documentation not reflecting the preferences and proposed decisionmakers of the seriously ill. This study was supported in part by the Agency for Healthcare Research and Quality (HS17621).

See "Documentation of advance care planning for community-dwelling elders," by Victoria Y. Yung, B.A., Anne M. Walling, M.D., Lillian Min, M.D., M.S.H.S., and others in the Journal of Palliative Medicine, 13(7), pp. 861-867, 2010.

Current as of June 2011
Internet Citation: Elders' preferences for end-of-life care are not captured by documentation in their medical records: Research Activities, June 2011, No. 370. June 2011. Agency for Healthcare Research and Quality, Rockville, MD. http://www.ahrq.gov/news/newsletters/research-activities/jun11/0611RA25.html