Deconstructing the Complexities of Advance Care Planning Outcomes: What Do We Know and Where Do We Go? A Scoping Review

McMahan, Ryan D.; Tellez, Ismael; Sudore, Rebecca L.

doi:10.1111/jgs.16801

Cited by 260 publications

(295 citation statements)

References 163 publications

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“…17 The ACP process is complex and outcomes from previous studies have been mixed. 30 This study demonstrates the effectiveness of an ACP intervention to prepare surrogates for a future decision-making role, increasing communication and understanding of a person's treatment preferences over time. We recommend future trials of ACP test for population heterogeneity and use innovative approaches to more accurately describe ACP outcomes, consistent with the call to conduct longitudinal, trajectory-based studies of tested interventions.…”

Section: Discussionmentioning

confidence: 82%

Advance Care Planning—Complex and Working: Longitudinal Trajectory of Congruence in End-of-Life Treatment Preferences: An RCT

Lyon

Caceres

Scott

et al. 2021

Am J Hosp Palliat Care

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Context: The effect of advance care planning (ACP) interventions on the trajectory of end-of-life treatment preference congruence between patients and surrogate decision-makers is unstudied. Objective: To identify unobserved distinctive patterns of congruence trajectories and examine how the typology of outcome development differed between ACP and controls. Methods: Multisite, assessor-blinded, intent-to-treat, randomized clinical trial enrolled participants between October 2013 to March 2017 from 5 hospital-based HIV clinics. Persons living with HIV(PLWH)/surrogate dyads were randomized to 2 weekly 60-minute sessions: ACP (1) ACP facilitated conversation, (2) advance directive completion; or Control (1) Developmental/relationship history, (2) Nutrition/Exercise. Growth Mixed Modeling was used for 18-month post-intervention analysis. Findings: 223 dyads (N = 449 participants) were enrolled. PLWH were 56% male, aged 22 to 77 years, and 86% African American. Surrogates were 56% female, aged 18 to 82 years, and 84% African American. Two latent classes (High vs. Low) of congruence growth trajectory were identified. ACP influenced the trajectory of outcome growth (congruence in all 5 AIDS related situations) by latent class. ACP dyads had a significantly higher probability of being in the High Congruence latent class compared to controls (52%, 75/144 dyads versus 27%, 17/62 dyads, p = 0.001). The probabilities of perfect congruence diminished at 3-months post-intervention but was then sustained. ACP had a significant effect (β = 1.92, p = 0.006, OR = 7.10, 95%C.I.: 1.729, 26.897) on the odds of being in the High Congruence class. Conclusion: ACP had a significant effect on the trajectory of congruence growth over time. ACP dyads had 7 times the odds of congruence, compared to controls. Three-months post-intervention is optimal for booster sessions.

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Section: Discussionmentioning

confidence: 82%

Advance Care Planning—Complex and Working: Longitudinal Trajectory of Congruence in End-of-Life Treatment Preferences: An RCT

Lyon

Caceres

Scott

et al. 2021

Am J Hosp Palliat Care

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“…A recent review of 69 randomized controlled trials found mostly positive outcomes of advance care planning interventions, such as improving the quality of communication and of documents produced and reducing the psychosocial burdens of proxy decision-making. 47 Yet future care is not always congruent with the wishes expressed in advance care directives, and some degree of incongruence may always exist in the context of high-stakes, end-of-life care decisions. For example, a directive may request life-sustaining interventions that go against the medically recommended care.…”

Section: E R H E R Hmentioning

confidence: 99%

Advance Research Directives: Dementia Researchers' Views on a Prototype Directive and Implementation Strategies

Ries

Mansfield

2021

Ethics & Human Research

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Advance research directives (ARDs) enable people to document preferences for future research participation in the event of incapacity. This article reports on interviews with 11 dementia researchers in Australia that focused on the content of a prototype ARD and processes for making and using ARDs. Participants agreed that an ARD template should provide information to explain research and the rationale for making a directive, allow the person to nominate trusted individuals to be involved in future decisions, and record the person's general willingness or unwillingness to be involved in research. Providing a list of various research activities elicits preferences and risk tolerances in more detail. Priority groups for ARD implementation include people with a diagnosis involving progressive cognitive impairment and people interested in research. Researchers and health and legal professionals have a role in promoting ARDs. Our findings suggest that, as a voluntary strategy, ARDs could promote appropriate inclusion in research.

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“…Proxies expressed satisfaction with the procedure, especially with the opportunity to discuss these issues with the facilitator. High-quality trials demonstrate the potential of ACP understood as a longitudinal conversation to help future surrogates prepare for in the moment decision making (50). These studies evaluated a broader (and more tting) range of outcomes than prior work, including surrogate preparedness.…”

Section: Acceptability Of the Adia Toolmentioning

confidence: 99%

Implementing advance care planning in dementia care: results and insights from a pilot interventional trial

Bosisio

Sterie

Truchard

et al. 2021

Preprint

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Background: Advance care planning (ACP) is particularly appropriate for persons with dementia (PWD) since it fosters conversation about dementia-specific illness scenarios, addresses inconsistencies between advance directives and patients’ observed behaviour, emphasises prospective and relational autonomy, and may be generally consistent to elderly’s decision-making needs. However, despite the evidence of its benefits, ACP is yet to become widely used among PWD. In this paper, we present results regarding the feasibility and acceptability of a pilot intervention designed to foster ACP among PWD and their relative and explore future outcome measures in prevision of a randomized controlled trial. Methods: In order to assess pre-post variations, we used qualitative interviews and four psychometric scales: Hospital Anxiety and Depression Scale, Questionnaire of Psychological Autonomy, Decisional conflict scale, and Zarit burden scale. We added two visual analog scales for perceived control over and perceived involvement in healthcare decisions, as well as two hypothetic scenarios to test concordance between PWD’s and surrogate’s decisions.Results: Five main challenges in terms of feasibility were 1) to locate eligible patients, 2) to tailor recruitment procedures to recruitment locations, 3) to adapt inclusion criteria to meet clinical routines, 4) to engage PWD and their relatives in ACP, and 5) to choose outcome criteria that do not burden PWD. Alongside with those expected challenges, we discuss substantial unanticipated gatekeeping by the research ethics committee and healthcare professionals. Despite the setbacks, the intervention was well received by PWD and their relatives that expressed satisfaction with the procedure, especially in regard to the opportunity to discuss a sensitive topic with the help of a facilitator. Relatives’ perceived control over healthcare decisions increased, as well as concordance between PWD’s preferences and relatives’ decision. Conclusion: Misconceptions about dementia and ACP, both in the patient, relatives, and healthcare providers, combined with structural institutional challenges, have the power to impede research and implementation of ACP in dementia care. For this reason, we advocate for a systemic approach of ACP and for the use of ACP tools and research adapted to PWD cognitive capacities.Trial registration: This trial was registered in the database clinicaltrial.gov with the number NCT03615027

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Deconstructing the Complexities of Advance Care Planning Outcomes: What Do We Know and Where Do We Go? A Scoping Review

Abstract: BACKGROUND/OBJECTIVES: Advance care planning (ACP) has shown benefit in some, but not all, studies. It is important to understand the utility of ACP. We conducted a scoping review to identify promising interventions and outcomes. DESIGN: Scoping review.

Cited by 260 publications

References 163 publications

Advance Care Planning—Complex and Working: Longitudinal Trajectory of Congruence in End-of-Life Treatment Preferences: An RCT

Advance Care Planning—Complex and Working: Longitudinal Trajectory of Congruence in End-of-Life Treatment Preferences: An RCT

Advance Research Directives: Dementia Researchers' Views on a Prototype Directive and Implementation Strategies

Implementing advance care planning in dementia care: results and insights from a pilot interventional trial

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