Advance care planning by proxy in German nursing homes: Descriptive analysis and policy implications

Abstract

Background: Legally recognized advance directives (ADs) have to be signed by the person to whom the decisions apply. In practice, however, there are also ADs written and signed by legal proxies (surrogates) on behalf of patients who lack decision-making capacity. Given their practical relevance and substantial ethical and legal implications, ADs by proxy (AD-Ps) have received surprisingly little scientific attention so far.Objectives: To study the form, content, validity, and applicability of AD-Ps among German nursing home residents and develop policy implications. Methods: Secondary analysis of two independent cross-sectional studies in three German cities, comprising 21 nursing homes and 1528 residents. The identified AD-Ps were analyzed in parallel by three independent raters. Interrater agreement was measured using free-marginal multi-rater kappa statistics.Results: Altogether, 46 AD-Ps were identified and pooled for analysis. On average (range), AD-Ps were 1 (1-7) year(s) old, 0.5 (0.25-4) pages long, signed by 1 (0-5) person, with evidence of legal proxy involvement in 35%, and signed by a physician in 20% of cases. Almost all the AD-Ps reviewed aimed to limit life-sustaining treatment (LST), but had widely varying content and ethical justifications, including references to earlier statements (30%) or actual behavior (11%). The most frequent explicit directives were: do-not-hospitalize (67%), do-not-tube-feed (37%), do-notattempt-resuscitation (20%), and the general exclusion of any LST (28%). Inter-rater agreement was mostly moderate (kappa ≥0.6) or strong (kappa ≥0.8).Conclusions: Although AD-Ps are an empirical reality in German nursing homes, formal standards for such directives are lacking and their ethical justification based on substituted judgment or best interest standard often remains unclear. A qualified advance care planning process and corresponding documentation are required in order to safeguard the appropriate use of this important instrument and ensure adherence to ethico-legal standards.See related editorial by Cohen et al.

“What Is the Most Important to Them?” Swiss Health Care Proxies, Nurses, and Physicians Discuss Planning Practices for Aged Care Residents Who No Longer Have Medical Decision-Making Capacity

“…However, all parties reported these processes to be highly variable, with a lack of standardization in terms of the content of discussions with health care proxies, the timing of these discussions, the types of decisions which are made, the types of information that are documented, and the forms on which these decisions are documented. These variable practices are consistent with the findings in other countries, such as Australia [ 26 ] and Germany, where document analyses have shown variation in types of decisions, presence of proxy and physician signatures and ethical justifications [ 27 ]. This variability reflects the willingness of health professionals to engage in developing their processes within each institution, but this also poses problems for the transmissibility of information and coordination, especially in case of hospital transfer.…”

Effectiveness of a complex regional advance care planning intervention to improve care consistency with care preferences: study protocol for a multi-center, cluster-randomized controlled trial focusing on nursing home residents (BEVOR trial)

“…A written condensation of the “attitudes” forms the AD’s base for documenting concrete treatment preferences in three distinct clinical scenarios: (1) treatment preferences in an emergency (documented on a Physician’s Order for Life-Sustaining Treatment in Case of Emergency (POLST-E)), (2) treatment preferences for hospital care in case of an incapability to consent of uncertain duration, and (3) treatment preferences for a possible future permanent incapability to consent. In surrogate decision-making, besides the “attitudes” two concrete scenarios are documented in the AD-P form: (1) emergency preferences as in the AD, and (2) treatment preferences in case of future severe functional or emotional deterioration [ 32 – 34 ] see Additional file 1 (selected intervention details).…”

Care Planning Interventions for Care Home Residents: A Scoping Review

“…Despite these substantial benefits, international evidence has shown that many care home residents do not have an ACP (Batchelor et al, 2019;Detering et al, 2010;Garden et al, 2022;In der Schmitten et al, 2021;Jennings et al, 2016). Batchelor et al (2019) attributed the low prevalence of ACPs to a lack of knowledge and education on the part of care home staff, including uncertainty regarding the legal status of care plans.…”