• Jonathan J Suen, Emily Vo, Catherine A Clair, Marie T Nolan, Joseph J Gallo, and Abshire SaylorMarthaMJohns Hopkins School of Nursing (J.J.S, E.V., M.T.N., M.A.S.), Baltimore, Maryland, USA; Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health (J.J.S.), Baltimore, Maryland, USA; Department of Health, Behavior an.
• Johns Hopkins School of Nursing (J.J.S, E.V., M.T.N., M.A.S.), Baltimore, Maryland, USA; Department of Epidemiology, Johns Hopkins Bloomberg School of Public Health (J.J.S.), Baltimore, Maryland, USA; Department of Health, Behavior and Society, Johns Hopkins Bloomberg School of Public Health (C.A.C.), Baltimore, Maryland, USA; Department of Mental Health, Johns Hopkins Bloomberg School of Public Health (J.J.G.), Baltimore, Maryland, USA.
• J Pain Symptom Manage. 2022 Apr 1; 63 (4): 590598590-598.

ContextPatients and family caregivers perceive burden in care at the end of life differently even when the patient is a physican.ObjectivesWe describe how older adult physicians as prospective patients (hereafter "physician-patients") and family caregivers of physician-patients view burden in care at the end of life.MethodsInterviews with physician-patients (n = 28) and family caregivers (n = 26) of physician-patients who had died were conducted as part of a shared decision-making study. Both groups expressed concerns with burden at the end of life. We coded and analyzed descriptions of burden using inductive and deductive approaches to coding sub-themes as in qualitative description. We then created a conceptual model depicting the relationships among the concepts, returning to the interviews to verify respective contexts.ResultsUnilateral actions taken at different points in the illness trajectory by both groups suggested different concerns about burden occurring in parallel. While everyone anticipated burden associated with care at the end of life, physician-patients made legal and financial arrangements to minimize this burden. Nevertheless several family caregivers described the burden that they experienced. We propose a conceptual model to guide future research and care.ConclusionPhysician-Patients ' clinical insights drive their attempts to alleviate burden on their families. However, family caregivers still experienced burden. Recognizing the parallel perspectives of burden may inform the type and timing of interventions to effectively minimize burden and provide compassionate care to both patients and families at the end of life.Copyright © 2021 American Academy of Hospice and Palliative Medicine. Published by Elsevier Inc. All rights reserved.

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