Surrogate Decision Maker Stress in Advance Care Planning Conversations: A Mixed-Methods Analysis From a Randomized Controlled Trial

Lipnick, Daniella; Green, Michael; Thiede, Elizabeth; Smith, Theresa J.; Lehman, Erik; Johnson, Rhonda L.; La, In Seo; Wiegand, Debra L.; Levi, Benjamin H.; Scoy, Lauren Jodi Van

doi:10.1016/j.jpainsymman.2020.07.001

Cited by 14 publications

(19 citation statements)

References 34 publications

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“…RCTs were conducted in a variety of settings, including community (4, 11.4%),16 19 21 30 hospital (24, 68.6%),7 9–13 17 20 23–26 33–44 nursing home (3, 8.6%)18 32 45 and primary care (2, 5.7%) 22 46. Interestingly, most RCTs were conducted in North America (26 in the USA and 1 in Canada),7 9 10 12 13 16–20 22–26 33–37 39 40 42–46 followed by Europe (2 in the Netherlands, 1 in the UK and 1 in Spain),8 30–32 Australia (2)11 38 and Asia (Korea=1 and Hong Kong=1) 21 41…”

Section: Resultsmentioning

confidence: 99%

“…Target populations for ACP interventions included caregivers of healthy older adults (2, 5.7%) and patients 16 47. Of the caregivers of patients, 11 (31.4%) RCTs were conducted with caregivers of heterogenous groups of patients with various illnesses,8 11 21–23 31 33 34 37 44 46 followed by 7 (20.0%) with caregivers of patients with infectious diseases like HIV,9 10 20 25 26 35 43 6 (17.1%) with caregivers of patients with heart/renal failure,7 12 13 17 24 42 4 (11.4%) with caregivers of patients with cancer,38–41 4 (11.4%) with caregivers of people with dementia,18 32 36 45 and 1 with caregivers of patients with advanced chronic obstructive pulmonary disease (COPD) 30. Further, majority of the RCTs were conducted with caregivers of adults (82.9%) and only six (17.1%) RCTs with caregivers of adolescents 9 10 20 35 39 43…”

Section: Resultsmentioning

confidence: 99%

“…One RCT incorporated the use of an ACP decision aid in addition to the communication component of intervention 32. Five (14.3%) RCTs evaluated only a decision aid (one physical41 and four web/computer-based decision aids18 37 44 46) without a communication component. Lastly, one RCT was classified as an advance directive (AD) only intervention 8…”

Section: Resultsmentioning

confidence: 99%

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Advance care planning and caregiver outcomes: intervention efficacy – systematic review

Malhotra

Huynh

Shafiq

et al. 2022

BMJ Support Palliat Care

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ContextCaregivers make difficult end-of-life (EOL) decisions for patients, often adversely affecting their own psychological health. Understanding whether advance care planning (ACP) interventions benefit caregivers can enable healthcare systems to use these approaches to better support them.ObjectiveWe conducted a systematic review and meta-analysis to identify and quantify the impacts of ACP interventions on caregiver outcomes.MethodsWe searched MEDLINE, Embase and Cochrane databases for English-language randomised or cluster randomised controlled trials (RCTs) published until May 2021. Two reviewers independently assessed methodological quality using the Physiotherapy Evidence-Based Database Scale. We conducted a narrative synthesis for each outcome. Difference between arms with a p value of <0.05 was considered statistically significant.ResultsOf the 3487 titles reviewed, 35 RCTs met eligibility; 68.6% were rated high quality. Included RCTs were heterogeneous in intervention characteristics, setting and disease. Meta-analysis of 17 RCTs showed that ACP had large and significant improvement in congruence in EOL care preferences between caregivers and patients (standardised mean difference 0.73, 95% CI 0.42 to 1.05). The effect of ACP on this outcome, however, declined over time. We also found some evidence that ACP improved bereavement outcomes (three of four RCTs), satisfaction with care quality/communication (four of the six RCTs), reduced decisional conflict (two of the two RCTs) and burden (one RCT). No study showed that mental health of caregivers were adversely affected.ConclusionThe review provides most comprehensive evidence about the efficacy of ACP on caregiver outcomes. Findings suggest some evidence of benefit of ACP on caregiver outcomes.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

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Advance care planning and caregiver outcomes: intervention efficacy – systematic review

Malhotra

Huynh

Shafiq

et al. 2022

BMJ Support Palliat Care

View full text Add to dashboard Cite

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“…MYWK is an educational and interactive online program that takes 60-90 minutes, simulates conversations with a knowledgeable physician, and includes educational content, clinical vignettes, and values clarification exercises. 15,16 Standard ACP involved an online advance directive form with accompanying educational materials, taking ∼30 minutes to complete.…”

Section: Methodsmentioning

confidence: 99%

“…The codebook had 4 broad categories related to spokespersons’ experiences with ACP: perceived preparedness, processes for decision-making, stress related to ACP, and spokespersons’ understanding of patients’ wishes. Due to the volume of transcripts and the size of the overall analysis, only the final category is reported here (other categories are reported elsewhere 19,20 ). Final codes were organized into themes.…”

Section: Methodsmentioning

confidence: 99%

What Surrogates Understand (and Don’t Understand) About Patients’ Wishes After Engaging Advance Care Planning: A Qualitative Analysis

Simmons

Levi

Green

et al. 2021

Am J Hosp Palliat Care

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Background: The goal of advance care planning (ACP) is to improve end-of-life decision-making for patients and their spokespersons, but multiple studies have failed to show substantial or consistent benefit from ACP. Understanding how and why ACP under-performs in the setting of complex medical decision-making is key to optimizing current, or designing new, ACP interventions. Aim: To explore how ACP did or did not contribute to a spokespersons’ understanding of patient wishes after engaging in ACP. Design: Thematic analysis of 200 purposively sampled interviews from a randomized control trial of an ACP decision aid. Setting/Participants: 200 dyads consisting of patients 18 years or older with advanced serious illness and their spokesperson at 2 tertiary care centers in Hershey, PA and Boston, MA. Participants were interviewed 1 month after completing ACP. Results: ACP helped participants: 1) express clear end-of-life wishes, 2) clarify values, and 3) recognize challenges associated with applying those wishes in complex situations. Shortcomings of ACP included 1) unknown prognostic information or quality-of-life outcomes to inform decision-making, 2) skepticism about patients’ wishes, and 3) complicated emotions impacting end-of-life discussions. Conclusions: Helping patients and their spokespersons better anticipate decision-making in the face of prognostic and informational uncertainty as well as the emotional complexities of making medical decisions may improve the efficacy of ACP interventions.

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Decision aids for people facing health treatment or screening decisions

Stacey,

Lewis,

Smith

et al. 2024

Cochrane Database of Systematic Reviews

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Surrogate Decision Maker Stress in Advance Care Planning Conversations: A Mixed-Methods Analysis From a Randomized Controlled Trial

Cited by 14 publications

References 34 publications

Advance care planning and caregiver outcomes: intervention efficacy – systematic review

Advance care planning and caregiver outcomes: intervention efficacy – systematic review

What Surrogates Understand (and Don’t Understand) About Patients’ Wishes After Engaging Advance Care Planning: A Qualitative Analysis

Decision aids for people facing health treatment or screening decisions

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