Surrogate Decision Makers Need Better Preparation for Their Role: Advice from Experienced Surrogates

Bakke, Brian; Feuz, Mariko; McMahan, Ryan D.; Barnes, Deborah E.; Li, Brookelle; Volow, Aiesha; J, Powell; Sudore, Rebecca L.

doi:10.1089/jpm.2021.0283

Cited by 21 publications

(18 citation statements)

References 35 publications

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“…Thus, while our primary focus was on assessment of feasibility and acceptability, these findings suggest that the events were also effective in at least one key area of ACP readiness. 50 We did not follow-up with participants beyond the postevent surveys, and therefore do not have data on whether and how they ultimately engaged in ACP.…”

Section: Discussionmentioning

confidence: 99%

“Advocating for what we need”: A CBPR approach to advance care planning in the Latinx older adult community

Nouri

Tan

Rangel³

et al. 2023

J American Geriatrics Society

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Background Advance care planning (ACP) is low among Latinx older adults. We used community‐based participatory research (CBPR) to identify ACP barriers/facilitators and design community‐based ACP events. Methods In partnership with community‐based organizations, clinicians, and local government, we formed a Latinx Community Committee (n = 13 community members). We then conducted 6 focus groups with Latinx‐identifying, English or Spanish‐speaking older adults (age ≥ 55), caregivers, and community leaders to assess ACP barriers/facilitators. We analyzed transcripts using thematic analysis and, based on these learnings, designed and implemented community‐based ACP events. Using a validated survey, we assessed acceptability and pre‐to‐post‐event ACP readiness (4‐point scale; 4 = most ready; 0.2 change considered meaningful) with Wilcoxon signed‐rank tests. Results Focus groups included 10 Spanish‐speaking older adults, 8 caregivers, and 10 community leaders. Themes highlighted the importance of ACP (e.g., means of advocacy), barriers (e.g., how to start conversations), and facilitators (e.g., trusted community spaces) in the Latinx community. Ninety‐seven people attended 5 events targeting 3 Latinx populations (LGBTQI+, intergenerational, and older adults broadly). Overall pre‐to‐post‐event ACP readiness increased (2.62 (SD 0.97) to 2.95 (SD 0.93); p = 0.05). Readiness to document wishes increased significantly (2.44 (SD 1.0) to 2.98 (SD 0.95); p = 0.003). Most reported being comfortable attending events (85%) and would recommend them to others (90%). Conclusions This study describes a feasible, acceptable, and effective CBPR ACP intervention. Co‐developed community events represent a promising approach to reducing disparities in ACP among the Latinx population.

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Section: Discussionmentioning

confidence: 99%

“Advocating for what we need”: A CBPR approach to advance care planning in the Latinx older adult community

Nouri

Tan

Rangel³

et al. 2023

J American Geriatrics Society

Self Cite

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“…In addition, personal characteristics related to SDM, such as coping strategies and competitive responsibilities, may also affect the effect of this intervention. People who have faced similar situations before tend to do the job better than those who have served as SDM for the rst time [44,45]. The assessments of these meta-analyses related to alternative decision-making intervention had high between-study heterogeneity, as well as their null evidence class, suggesting that there is no clear scienti c evidence to support the link between alternative decision-making intervention and adverse outcomes in ICU patients.…”

Section: Summary Of Main Ndingsmentioning

confidence: 99%

Care intervention on psychological outcomes among patients admitted to intensive care unit: an umbrella review of systematic reviews and meta-analyses

Zheng

Zhang

et al. 2023

Preprint

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Background Numerous studies have explored care interventions to improve the psychological outcome of intensive care unit (ICU) patients, but inconclusive evidence makes it difficult for decision-makers, managers and clinicians to get familiar with all available literatures and find appropriate interventions. This umbrella review aimed to analyze the relationship between care intervention and psychological outcomes of ICU patients bases on existing systematic reviews. Methods Umbrella review of evidence across systematic reviews and meta-analyses published between 1987 and 2020 was undertaken. We systematically searched primary studies that examined the association between care intervention and the improvement of adverse psychological outcomes in ICU patients using PubMed, EMBASE, web of science, Cochrane library, and manual reference screening. The measurement tool (AMSTAR 2) was applied to evaluate the methodological quality of included studies. The excess significance bias, between-study heterogeneity expressed by I2, small study effect and evidence class were estimated. Results A total of 5110 articles were initially identified from the search databases and nine of them were included in analysis. By applying standardized criteria, only week evidence was observed in 13 associations, even though most included reviews were of moderate to high methodological quality. These associations pertained to eight interventions (music therapy, early rehabilitation, post ICU follow up, ICU diary, information intervention, preoperative education, communication and psychological support, surrogate decision-making) and five psychological outcomes (post intensive care syndrome, transfer anxiety, post-traumatic stress disorder, anxiety and depression). Weak or null association was shown among the rest of the associations (e.g., weak association between music therapy and maternal anxiety or stress level). Conclusions The evidence of these eight supporting interventions to improve the adverse psychological outcomes of ICU patients and caregivers was weak. Data from more and better-designed studies with lager sample size are needed to establish robust evidence.

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“…[17][18][19] Based on a recent qualitative study on how to better prepare surrogates for medical decision making, limited awareness of the importance of ACP and the lack of guidance in initiating ACP conversations account for the lack of knowledge about patients' treatment wishes. 20 Thus, we hope to further examine the mechanism between one's involvement in medical decision making for a loved one and ACP engagement by looking at the mediating effect of the knowledge of a loved one's EOL treatment preferences.…”

Section: Introductionmentioning

confidence: 99%

Previous Experience in Medical Decision Making and Advance Care Planning Conversations: Findings From a Nationwide Cross-Sectional Survey

Zhang

Cagle

2023

Am J Hosp Palliat Care

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Background: Despite the extensive literature on facilitating advance care planning (ACP) with patients with serious illnesses, opportunities to include surrogates or family caregivers are overlooked. The research objective was to examine whether previous medical decision-making involvement for a loved one is associated with one’s own ACP conversations with family and the potential mediating effect of knowledge of a loved one’s end-of-life treatment preferences. Methods: This study employed a cross-sectional design using data from the 2016 Kaiser Family Foundation/The Economist Four-Country Survey on Aging and End-of-Life Medical Care. The sample included 627 US adults who completed the survey and were involved in making medical decisions for a loved one in the past. Multiple binary logistic regression and linear regression models were established for mediation analyses. Results: Participants in our nationally derived sample were largely confident in their knowledge of a deceased loved one’s end-of-life treatment preferences. 66.8% of the sample had ACP conversations with family. The involvement in a loved one’s medical decision making was significantly associated with higher odds of having ACP conversations with family (OR = 1.93, P = .01), but this relationship was significantly mediated by knowledge of one’s end-of-life treatment preferences ( b = .31, Boot CI = .12-.49). Conclusions: Previous experience in making medical decisions for a loved one may facilitate one’s own ACP behavior through knowing a loved one’s end-of-life treatment preferences. Clinicians in end-of-life settings are uniquely positioned to engage family members who were involved in medical decision-making for others before in ACP.

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Surrogate Decision Makers Need Better Preparation for Their Role: Advice from Experienced Surrogates

Cited by 21 publications

References 35 publications

“Advocating for what we need”: A CBPR approach to advance care planning in the Latinx older adult community

“Advocating for what we need”: A CBPR approach to advance care planning in the Latinx older adult community

Care intervention on psychological outcomes among patients admitted to intensive care unit: an umbrella review of systematic reviews and meta-analyses

Previous Experience in Medical Decision Making and Advance Care Planning Conversations: Findings From a Nationwide Cross-Sectional Survey

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