How does Serious Illness and End-of-Life Care Impact Caregiving Families? The Use of International Registry Data to Enhance Family-Based Studies in Palliative Care Research
A core component of palliative care is the provision of support to caregiving families who are the predominant providers of end-of-life (EOL) care. While we know that the caregiving experience and treatment intensity at the EOL impact the health and well-being of caregiving families, it is unclear how family caregivers themselves utilize the healthcare system as they are caring for individuals with serious illness. Prior evidence regarding caregiving families at the EOL has been constrained by a narrow focus on specific diseases or the “primary” caregiver, methodological limitations due to reliance on convenience samples, or recall biases associated with mortality follow-back study design. The goal of the proposed study is to explore the feasibility of using prospective data from a large international data registry to more comprehensively examine how caring for a seriously ill family member impacts the family. This study will produce preliminary data for an R01, wherein we will examine family healthcare spending patterns across the trajectory of serious illness using registry data in Denmark and across several similar international registry databases. This is an unprecedented opportunity to capture all deaths from serious illness in a population and to examine spending for all family members. Our work will allow us to develop the infrastructure necessary to understand the impact of serious illness and EOL care on families using large, population-based datasets. By linking patients with serious illness to their families, our research will enable us to reframe our approach to healthcare to be more family-centered and ultimately enhance the ability of palliative care to truly support caregiving families.
Katherine Ornstein, PhD, MPH is an epidemiologist and Assistant Professor in the Department of Geriatrics and Palliative Medicine and the Institute for Translational Epidemiology at the Icahn School of Medicine at Mount Sinai. Her research interests include family caregiving and the epidemiology of the homebound population. Her current work applies a social epidemiologic framework to palliative care research by linking existing national and international databases to determine how treatment intensity, including hospice care, for patients with serious illness impacts the health and healthcare utilization of family members.