• Alina Siddiqui, Katherine A Ornstein, and Claire K Ankuda.
• Department of Geriatrics and Palliative Medicine, Icahn School of Medicine at Mount Sinai, New York, New York, USA.
• J Palliat Med. 2021 Jun 1; 24 (6): 879-886.

AbstractBackground: Little is known about the experience of treatment burden, or the difficulties that arise when the treatment workload overwhelms one's ability to take on treatment activities, at the end of life. Objective: We first assessed rates of treatment burden experienced by all older adults in the last three years of life. Among the subset of our sample who had multiple chronic conditions (MCCs), we determined correlates of treatment burden with sociodemographic, health, and caregiving factors. Design: We conducted a cross-sectional study using nationally representative data from the National Health and Aging Trends Study (NHATS). Setting/Subjects: Our sample included 356 adults, aged 65 years and older, who died within three years of completing the 2012 NHATS Treatment Burden Questionnaire. Our MCC cohort included only those in our sample with two or more chronic conditions. Measurements: Our measure of treatment burden included reports of difficulty in managing treatment activities, delays in treatments, or feeling that physicians asked for too much. We built a composite measure to identify burden if participants reported that at least one item occurred sometimes or often. Results: Forty-three percent of older adults in their last three years of life experienced treatment burden. Among individuals with MCCs, bivariate analysis found that treatment burden was associated with being a racial minority and having depression, anxiety, and a cancer diagnosis. These associations were not statistically significant in a multivariable model. Conclusion: Treatment burden is a common experience among older adults regardless of sociodemographic, clinical, and caregiving factors.

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