Advance Care Planning in Nursing Homes and Assisted Living Communities

Abstract

To determine the prevalence and characteristics of advance care planning (ACP) among persons dying in long-term care (LTC) facilities, and to examine the relationship between respondent, facility, decedent, and family characteristics and ACP. After-death interviews of family members of decedents and facility liaisons where decedents received care. Stratified sample of 164 residential care/assisted living facilities and nursing homes in Florida, Maryland, New Jersey, and North Carolina. Family members and facility liaisons who gave 446 and 1014 reports, respectively, on 1015 decedent residents. Reports of death/dying discussions, known treatment preferences, and reports and records of signed living wills (LW), health care powers of attorney (HCPOA), do-not-resuscitate orders, and do-not-hospitalize orders. Family respondents reported a higher prevalence, compared with facility reports, of HCPOAs (92% versus 49%) and LWs (84% versus 43%). In family reports, non-white race and no private insurance were significantly associated with lower prevalence of LWs and HCPOAs; additionally, residing in nursing homes (versus assisted living facilities) and in North Carolina were associated with lower prevalence of reported LWs. In facility reports, non-white race, unexpected death, and residing in North Carolina or Maryland were significantly associated with lower prevalence of LWs, whereas high Medicaid case mix, intact cognitive status, and high family involvement were associated with lower prevalence of HCPOAs. Concordance of family and facility reporting of HCPOAs was significantly greater in facilities with fewer than 120 beds. The prevalence of ACP in LTC is much higher than previously described, and there is marked variation in characteristics associated with ACP, despite moderately high concordance, when reported by the facility or family caregivers.