Guardianship and End-of-Life Decision Making

Background/Objective A key objective of advance care planning (ACP) is improving surrogates’ knowledge of patients’ treatment goals. Little is known about whether ACP outside of a trial accomplishes this. The objective was to examine patient and surrogate reports of ACP engagement and associations with surrogate knowledge of goals. Design Cohort study Setting Primary care in a Veterans Affairs Medical Center. Participants 350 community-dwelling Veterans age ≥ 55 years and the individual they would choose to make medical decisions on their behalf, interviewed separately. Measurements Treatment goals were assessed by Veterans’ ratings of 3 health states: severe physical disability, cognitive disability, and pain, as an acceptable or unacceptable result of treatment for severe illness. Surrogates had knowledge if they correctly predicted all 3 responses. Veterans and surrogates were asked about living will and health care proxy completion and communication about life-sustaining treatment and quality versus quantity of life (QOL). Results Over 40% of dyads agreed that the Veteran had not completed a living will or health care proxy and that there was no QOL communication. For each activity, sizeable proportions (18% – 34%) disagreed about participation. In dyads who agreed QOL communication had occurred, 30% of surrogates had knowledge, compared to 21% in dyads who agreed communication had not occurred and 15% in dyads who disagreed (P = 0.01). This relationship persisted in multivariable analysis. Agreement about other ACP activities was not associated with knowledge. Conclusions Disagreement about ACP participation was common. Agreement about communication regarding QOL was modestly associated with surrogate knowledge of treatment goals. Eliciting surrogates’ perspectives is critical to ACP. Even dyads who agree about participation may need additional support for successful engagement.

“…While the results inform ACP for patients who have an available surrogate, there is a growing number of individuals who may not have an available surrogate. 29 …”

Section: Discussionmentioning

confidence: 99%

Engagement in Advance Care Planning and Surrogates’ Knowledge of Patients’ Treatment Goals

Fried

Zenoni

Iannone

et al. 2017

“…The AGS supports greater uniformity with respect to states' legal standards involving unbefriended older adults. Existing laws and pending legislation governing surrogate decision making lack uniformity and are often unclear . Seven states (Massachusetts, Minnesota, Missouri, Nebraska, New Hampshire, Rhode Island and Vermont) lack surrogate consent laws .…”

Section: Policy Recommendationsmentioning

confidence: 99%

“…Identifying public guardians can be time consuming, expensive and slow. Moreover, some states prohibit public guardians from authorizing DNR orders or other end of life decisions, potentially creating additional barriers to the provision of high‐quality care for older adults with advanced illness . As a result, the AGS encourages clinicians, health care organizations, communities and other stakeholders to develop innovative models for medical decision making for unbefriended older adults, such as several already developed .…”

Section: Policy Recommendationsmentioning

confidence: 99%

AGS Position Statement: Making Medical Treatment Decisions for Unbefriended Older Adults

Farrell

Widera

Rosenberg

et al. 2016

In this position statement, we define unbefriended older adults as patients who: (1) lack decisional capacity to provide informed consent to the medical treatment at hand; (2) have not executed an advance directive that addresses the medical treatment at hand and lack capacity to do so; and (3) lack family, friends or a legally authorized surrogate to assist in the medical decision‐making process. Given the vulnerable nature of this population, clinicians, health care teams, ethics committees and other stakeholders working with unbefriended older adults must be diligent when formulating treatment decisions on their behalf. The process of arriving at a treatment decision for an unbefriended older adult should be conducted according to standards of procedural fairness and include capacity assessment, a search for potentially unidentified surrogate decision makers (including non‐traditional surrogates) and a team‐based effort to ascertain the unbefriended older adult's preferences by synthesizing all available evidence. A concerted national effort is needed to help reduce the significant state‐to‐state variability in legal approaches to unbefriended patients. Proactive efforts are also needed to identify older adults, including “adult orphans,” at risk for becoming unbefriended and to develop alternative approaches to medical decision making for unbefriended older adults. This document updates the 1996 AGS position statement on unbefriended older adults.

“…One is by selecting high‐intensity treatment regardless of the likely benefit because the guardian perceives this to be the “safer” course . The other is by avoiding complex decisions and leaving them to the court, whether or not the law requires the guardian to do so . The result is that high‐intensity treatment is delivered by default while health professionals wait for a judge to make a decision …”

mentioning

confidence: 99%

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

Cohen

Benjamin

Fried

2019

Self Cite

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