Patient Voices from an Advance Care Planning Intervention and Optimizing Care for Serious Illness

PROJECT SUMMARY / ABSTRACT People with serious illness near the end of life may be subjected to aggressive or uncomfortable medical procedures, and die in the hospital, even if this is against their wishes. Advance Care Planning (ACP) seeks to ensure that people have opportunities to reflect on their personal values and make decisions about the possible types of future care they want to receive – before they are too impaired to express themselves. Unfortunately, too few healthcare providers in the US are trained in palliative care principles, and current delivery of ACP tends to occur in hospital settings and later than optimal in the disease course. Increasingly, chronic illness care is being delivered in community and home settings. There is great need for high-quality, more flexible models of ACP that can reach more patients where they are and that are sensitive to the diverse array of cultural backgrounds and views on quality of life that exist. Our proposed R21 study will explore secondary data produced in an NIH-funded trial of a video-based ACP intervention for the home setting. The trial’s participants are racially and ethnically diverse homebound patients with advanced disease. In the R21, we will transcribe audio-recordings made of the conversations around the short educational videos, then conduct comprehensive qualitative analyses of these transcripts to better understand patients’ perspectives on their illness, intensive care services, hospice services, and ACP. Additional anticipated themes in these conversations include faith and cultural traditions, familial obligations, conception of death, and personal empowerment through ACP. Our analyses will also explore unexpected themes, and we will identify contrasts among patient groups defined by, e.g., demographic characteristics and diagnoses. The home setting and lower-income population in this study will be unprecedented within the body of research on serious illness communication. Emphasizing these particular patient voices will yield new insights that will inform future designs of community-based ACP. Finally, we will quantify selected themes from and other unexamined aspects of the video home visits and merge these data with downstream outcomes from the parent trial (e.g., patient-reported knowledge of and satisfaction with ACP, ACP documentation in the medical record, and use of intensive services and hospice near the end of life). Our explorations of patient-clinician communication around ACP during the video home visit will help explain variations in patient outcomes within the intervention arm of the parent trial. Ultimately, this R21 study will point toward ways that ACP can be made more effective and lead to care that is well- aligned with patient preferences.