What Do Older Adults with Frailty and Their Caregivers Want from Advance Care Planning Discussions? A Descriptive Qualitative Study.

Introduction: Advance care planning (ACP) may facilitate person-centered, goal-concordant care for this population. However, we know little about what older adults expect from ACP discussions (that is, the outcomes they expect or desire). We sought to explore patient and family views on the outcomes they consider most pertinent to ACP discussions for older adults living with frailty. Methods: This qualitative descriptive study used semi-structured telephone/video-conferencing interviews with older persons with frailty (65+ years) and their family/friend caregivers from across Canada. All interviews took place in person or via telephone or Zoom with healthcare professionals, depending on the participant's preference, and were conducted by a researcher with experience in qualitative methods. Data analysis involved coding, grouping, detailing, and comparing the data, using techniques commonly employed in descriptive qualitative research. Results: Nine participants took part in this study: two were individuals living with frailty, and seven were caregivers of persons with frailty. They described three desired outcomes of ACP: (1) maximizing comfort and quality-of-life; (2) enhancing confidence in decision-making, which would heighten families' level of reassurance as their loved one's function and health status declines; and (3) maintaining autonomy so that people can live and die on their own terms. Conclusions: Ultimately, research and clinical care should tailor their ACP initiatives and evaluation metrics to align with what patients and families deem most important. The outcomes described by participants of this study should be further investigated and refined in future research.