Hospice Admission and Decision-Making for Unrepresented Patients

Abstract: While there is a literature on decision-making for unrepresented patients, there little published about the characteristics of these patients. Similarly, there is very little information regarding how decisions are made for these patients in the post-acute care environment. Historically, fears about undertreating vulnerable patients continue to present barriers to accessing hospice care for these patients, potentially impacting the diversity of patients served by hospice care. We have conducted a small empirical study which begins to address these gaps. This session reports the findings of our study and proposes ethical questions raised by those findings.
This study was a chart review of unrepresented patients admitted to a large urban hospice care program 2018-2022 (N=48). IRB review deemed the study exempt. We collected data on patient demographics; care utilization; cause of lack of decision-making capacity; information about possible surrogate decision-makers; and decisions regarding major medical and life-sustaining treatments. Where relevant, characteristics of these variables were compared to those of the general population of patients admitted to the hospice program during the study years. Our findings raise several ethical questions about the assumptions informing current models of decision-making for unrepresented patients.
We also propose a need for, and questions to guide, a larger multi-site study of unrepresented patients admitted to hospice care programs. In addition to enabling results which are generalizable, such a study would address the need for evidence-informed recommendations for the development of state statutes, applicable regulations, and organizational policies to expand access to hospice care for unrepresented patients.

Michelle Newman, MD – Attending Physician, MJHS Hospice & Palliative Care; Tina Wexler, MD – Attending Physician, Palliative Medicine, Montefiore Medical Center