Trends in advance care planning and end-of-life care among persons living with dementia requiring surrogate decision-making.

Abstract

Previous studies have demonstrated positive impacts of advance care planning (ACP) on end-of-life (EOL) care. We sought to examine trends in ACP and EOL care intensity among persons living with dementia who required surrogate decision-making in their final days of life. We analyzed the participants of the Health and Retirement Study (HRS), a nationally representative longitudinal panel study of U.S. residents, with dementia 70 years and older who required surrogate decision-making in the final days of life and died between 2000 and 2014. Based on surrogate reports after the death of a participant, our study measured the completion of three specific types of patient-engaged ACP (written EOL care instructions, assignment of a durable power of attorney for healthcare, patient engagement in EOL care discussions) and four measures of EOL care in the final days of life (death in hospital, receipt of life-prolonging treatments, limiting or withholding certain treatments, and receipt of comfort-oriented care). All analyses accounted for the complex survey design of HRS. Among 870 adults (weighted N= 2,812,380) with dementia who died in 2000-2014 and required surrogate decision-making at EOL, only 34.8% of patients participated in all three aspects of ACP, and there was not a significant increase in ACP completion between 2000 and 2014. The receipt of life-prolonging treatments in the final days of life has increased over time (adjusted change per year, 1.4 percentage points [pp]; 95% CI, 0.5 to 2.2pp; P-for-trend=0.002), while the percentage of death in hospital, limiting or withholding certain treatments, or comfort-oriented care did not change. Our findings suggest that the rates of ACP completion have not increased over time despite its potential benefits and life-prolonging treatments are still common among PLWD who require surrogate decision-making, a population who might benefit greatly from early ACP.