End‐of‐Life Decision Making and Treatment for Patients with Professional Guardians

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

Developing Age‐friendly Cities: Policy Opportunities and Challenges

“…Studies in intensive care units revealed that 16 percent of patients admitted have no family or friend guardian (White, Curtis, Lo, & Luce, 2006), and these patients account for 5.5 percent of deaths annually (White et al, 2007). For those assessed in acute care settings, a large proportion of individuals without a family or friend guardian are admitted from nursing homes (Cohen, Benjamin, & Fried, 2019;Courtwright, Abrams, & Robinson, 2017;Griggins, Blackstone, McAliley, & Daly, 2019). Research estimates that older adults under public guardianship comprise 3 to 4 percent of the nursing home population, an estimate based on anecdotal information from focus groups of healthcare leaders (Karp & Wood, 2003).…”

Comment on: End‐of‐Life Decision Making and Treatment for Patients With Professional Guardians

“…We read with great interest the study by Cohen and colleagues, 1 which examined the role of professional guardian when making ending of life decisions. The definition of a professional guardian is unclear and requires further clarification regarding role delineation.…”

“…Patient advocates provide a variety of services to individuals other than being there for "selecting intensity treatment," like a professional guardian is required to do. 1 They oversee medical, home health, assistance to individuals 65 years and older, navigate health issues, and communicate the individual's thoughts and feelings to his/her medical team. 4 At present, one may qualify as a boardcertified patient advocate (BCPA).…”

“…We appreciate the interest in our work by LaRock and Siniscarco. 1 As we detail in our recent article, 2 the terminology around guardianship is complex and varies by jurisdiction. We use the term guardian to refer to a guardian of person-an individual appointed by a judge to make decisions about the well-being of another, including healthcare decisions.…”

Guardianship and End‐of‐Life Care for Veterans with Dementia in Nursing Homes

“…In prior work, our team overcame this issue by developing a method to identify a population‐based sample of individuals with professional guardians using data from the Department of Veterans Affairs (VA) 10 . We examined the end‐of‐life care for a small number of patients at VA facilities in a single state 11 . Our objective in the present study was to use this method to assemble a larger national cohort of decedent veterans who were represented by professional guardians and had moderately severe or severe dementia and to compare their end‐of‐life care with the care received by decedent veterans without guardians who had similar characteristics.…”