Abstract
OBJECTIVES: Concerns have repeatedly been raised about end-of-life decision making when a patient with diminished capacity is represented by a professional guardian, a paid official appointed by a judge. Such guardians are said to choose high-intensity treatment even when it is unlikely to be beneficial or to leave pivotal decisions to the court. End-of-life decision making by professional guardians has not been examined systematically, however. DESIGN: Retrospective cohort study. SETTING: Inpatient and outpatient facilities in the Department of Veterans Affairs (VA) Connecticut Healthcare System. PARTICIPANTS: Decedent patients represented by professional guardians who received care at Connecticut VA facilities from 2003 to 2013 and whose care in the last month of life was documented in the VA record. MEASUREMENTS: Through chart reviews, we collected data about the guardianship appointment, the patient's preferences, the guardian's decision-making process, and treatment outcomes. RESULTS: There were 33 patients with professional guardians who died and had documentation of their end-of-life care. The guardian sought judicial review for 33%, and there were delays in decision making for 42%. In the last month of life, 29% of patients were admitted to the intensive care unit, intubated, or underwent cardiopulmonary resuscitation; 45% received hospice care. Judicial review and high-intensity treatment were less common when information about the patient's preferences was available. CONCLUSION: Rates of high-intensity treatment and hospice care were similar to older adults overall. Because high-intensity treatment was less likely when the guardian had information about a patient's preferences, future work should focus on advance care planning for individuals without an appropriate surrogate. J Am Geriatr Soc 67:2161-2166, 2019.