End-of-Life Care for Persons Under Guardianship

• Published in: Journal of pain and symptom management Vol. 62; no. 1; pp. 81 - 90.e2
• Main Authors: Moye, Jennifer, Stolzmann, Kelly, Auguste, Elizabeth J., Cohen, Andrew B., Catlin, Casey C., Sager, Zachary S., Weiskittle, Rachel E., Woolverton, Cindy B., Connors, Heather L., Sullivan, Jennifer L.
• Format: Journal Article
• Language: English
• Published: United States Elsevier Inc 01.07.2021; Elsevier Limited
• Subjects: Access; Clinical outcomes; Courts; Decision makers; End of life decisions; end-of-life care; Ethics; Family conflict; Guardians; Guardianship; Health care; hospice; Hospice Care; Humans; Intensive care; Intensive Care Units; Legal Guardians; Management; Massachusetts; Military hospitals; Narratives; Palliative Care; Patients; Qualitative research; Terminal Care; Veterans; Massachusetts; Guardianship; intensive care; hospice; palliative care; family conflict; end-of-life care
• ISSN: 0885-3924; 1873-6513
• DOI: 10.1016/j.jpainsymman.2020.11.008

Guardians are surrogate decision makers appointed by a court when other health care decision-makers are unable, unwilling, or unavailable to make decisions. Prior studies suggest that persons under guardianship may experience delays in transitions of care. To compare quality of end-of-life care for persons under guardianship to a matched group on objective indicators and to identify narrative themes characterizing potential obstacles to quality end-of-life care. One hundred sixty-seven persons under guardianship who died between 2003 and 2019 within the Veterans Healthcare Administration in Massachusetts and Connecticut matched on a 1:1 basis to persons without guardians. The groups were compared on treatment specialty at death, days of hospice and intensive care unit care, and receipt of palliative care consultation. Additionally, patient narratives for those under guardianship with extended lengths in intensive care unit were subjected to qualitative analysis. Overall, <1% were under guardianship. Within this sample of persons who died within the Veterans Health Administration, persons under guardianship were as likely as patients in the comparison group to receive palliative care consultation (odds ratio [CI] = 0.93 [.590-1.46], P = .359), but were more likely to have ethics consultation (odds ratio [CI] = 0.25 [0.66–0.92], P = .036) and have longer lengths of ICU admission (β = −.34, t = −2.70, P = .009). Qualitative findings suggest that issues related to family conflict, fluctuating medical course, and limitations in guardian authority may underlie extended lengths of stay. Guardianship appears to be rare, and as a rule, those under guardianship have equal access to hospice and palliative care within Veterans Health Administration. Guardianship may be associated with health-care challenges in a small number of cases, and this may drive perceptions of adverse outcomes.