Agency for Healthcare Research and Quality.

BACKGROUND: There is little understanding about the experiences and preferences at the end of life (EOL) for people from unique cultural and socioeconomic backgrounds. Homeless individuals are extreme examples of these overlooked populations; they have the greatest risk of death, encounter barriers to health care, and lack the resources and relationships assumed necessary for appropriate EOL care. Exploring their desires and concerns will provide insight for the care of this vulnerable and disenfranchised population, as well as others who are underserved.OBJECTIVE: Explore the concerns and desires for EOL care among homeless persons. DESIGN: Qualitative study utilizing focus groups.PARTICIPANTS: Fifty-three homeless persons recruited from agencies providing homeless services. MEASUREMENTS:In-depth interviews, which were audiotaped and transcribed. RESULTS:We present 3 domains encompassing 11 themes arising from our investigation, some of which are previously unreported. Homeless persons worried about dying and EOL care; had frequent encounters with death; voiced many unique fears, such as dying anonymously and undiscovered; favored EOL documentation, such as advance directives; and demonstrated ambivalence towards contacting family. They also spoke of barriers to EOL care and shared interventions to improve dying among the very poor and estranged.CONCLUSIONS: Homeless persons have significant personal experience and feelings about death, dying, and EOL care, much of which is different from those previously described in the EOL literature about other populations. These findings have implications not only for homeless persons, but for others who are poor and disenfranchised.

Advance care planning honors patients' goals and preferences for future care by creating a plan for when illness or injury impedes the ability to think or communicate about health decisions. Fewer than 50% of severely or terminally ill patients have an advance directive in their medical record, and physicians are accurate only about 65% of the time when predicting patient preferences for intensive care. Decision aids can support the advance care planning process by providing a structured approach to informing patients about care options and prompting them to document and communicate their preferences. This review, commissioned as a technical brief by the Agency for Healthcare Research and Quality Effective Health Care Program, provides a broad overview of current use of and research related to decision aids for adult advance care planning. Using interviews of key informants and a search of the gray and published literature from January 1990 to May 2014, the authors found that many decision aids are widely available but are not assessed in the empirical literature. The 16 published studies testing decision aids as interventions for adult advance care planning found that most are proprietary or not publicly available. Some are constructed for the general population, whereas others address disease-specific conditions that have more predictable end-of-life scenarios and, therefore, more discrete choices. New decision aids should be designed that are responsive to diverse philosophical perspectives and flexible enough to change as patients gain experience with their personal illness courses. Future efforts should include further research, training of advance care planning facilitators, dissemination and access, and tapping potential opportunities in social media or other technologies.

Agency for Healthcare Research and Quality.