Dataset Information

Decision support intervention (Plan Well Guide) for patients and their substitute decision-makers to improve engagement in advance care planning: protocol for a randomised trial.

ABSTRACT: OBJECTIVE:The purpose of this randomised trial is to evaluate the efficacy of a decision support intervention for serious illness decisions (the Plan Well Guide decision aid; www.PlanWellguide.com) in increasing the engagement of substitute decision-makers (SDMs) in the patient's advance care planning process (ie, 'ACP engagement'), specifically the SDM's confidence and readiness for the role in the future. METHODS AND ANALYSIS:This study is a parallel group randomised controlled trial. We aim to enrol 90 participant dyads: patients aged 65 years and older attending outpatient healthcare settings and with indicators they would be at high risk of needing future medical decisions and their SDM. The intervention is the Plan Well Guide decision aid, administered to the patient by a facilitator, with the SDM present. The primary endpoint is change after 3 months in the SDM's ACP engagement using a validated measure of behavioural change (SDM's knowledge, contemplation, self-efficacy and readiness) to enact the role. The secondary endpoints are (1) ACP engagement of the patient measured by a validated survey; (2) change in SDM decisional conflict regarding involvement in future decision-making and (3) postintervention patient decisional conflict regarding preference for life-sustaining treatments. Primary and secondary continuous outcomes will be analysed using the linear regression. The mean difference and 95% CIs will be reported. ETHICS AND DISSEMINATION:Approval was received August 2017 (2017-3714-GRA) from the Hamilton Integrated Research Ethics Board. We plan to disseminate trial results in peer-reviewed journals, at national and international conferences, and via our web-based knowledge translation platforms. TRIAL REGISTRATION NUMBER:NCT03239639; Pre-results.

SUBMITTER: Howard M

PROVIDER: S-EPMC6756453 | biostudies-literature | 2019 Sep

REPOSITORIES: biostudies-literature

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Decision support intervention (Plan Well Guide) for patients and their substitute decision-makers to improve engagement in advance care planning: protocol for a randomised trial.

Howard Michelle M Slaven Marissa M Bernard Carrie C Borhan Sayem S Elston Dawn D Arora Neha N Tan Amy A Heyland Daren K DK

BMJ open 20190920 9

<h4>Objective</h4>The purpose of this randomised trial is to evaluate the efficacy of a decision support intervention for serious illness decisions (the Plan Well Guide decision aid; www.PlanWellguide.com) in increasing the engagement of substitute decision-makers (SDMs) in the patient's advance care planning process (ie, 'ACP engagement'), specifically the SDM's confidence and readiness for the role in the future.<h4>Methods and analysis</h4>This study is a parallel group randomised controlled ...[more]

PMID: 31542737

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Project description:Background: Advance care planning (ACP) is intended to help patients and their spokespersons prepare for end-of-life decision making, yet little is known about what factors influence the extent to which spokespersons feel prepared for that role. Objective: To examine spokespersons' perceived preparedness for surrogate decision making after engaging in ACP. Design: Mixed methods experimental design with qualitative thematic analysis and data transformation (creating categorical data from rich qualitative data) of interviews collected during a randomized controlled trial (2012-2017). Setting/Participants: Two tertiary care medical centers (Hershey, PA and Boston, MA). Of 285 dyads (patients with advanced illness and their spokespersons) enrolled in the trial, 200 spokesperson interviews were purposively sampled and 198 included in the analyses. Main Outcomes and Measures: Interviews with spokespersons (four weeks post-intervention) explored spokespersons' perceived preparedness for surrogate decision making, occurrence of ACP conversations, and spokespersons' intentions regarding future surrogate decisions. Data transformation was used to categorize participants' responses into three categories: Very Prepared, Very Unprepared, or In Between Prepared and Unprepared. Themes and categories were compared across arms. Results: About 72.72% of spokespersons (144/198) reported being Very Prepared and 27.28% (54/198) reported being Very Unprepared or In Between with no differences in preparedness across study arms. Occurrence of post-intervention ACP conversations did not influence perceived preparedness; however, spokespersons who used an ACP decision aid reported more conversations. Four themes emerged to explain spokespersons' perceived preparedness: (1) perceptions about ACP; (2) level of comfort with uncertainty; (3) relational issues; and (4) personal characteristics. Regarding future intentions, it emerged that spokespersons believed their knowledge of patient wishes, as well as other personal, relational, situational, and emotional factors would influence their surrogate decisions. Conclusions: Factors extrinsic to specific ACP interventions influence how prepared spokespersons feel to act as spokespersons. Understanding these factors is important for understanding how to improve concordance between patients' stated end-of-life wishes and surrogate decisions. Trial Registration: NCT02429479.

Project description:Advance care planning (ACP) helps ensure that treatment preferences are met at the end of life. Medical professionals typically are responsible for facilitating patients' ACP, and may be especially effective in doing so if they have first-hand insights from their own planning. However, no large-scale U.S. studies examine whether persons working on the front lines of health care are more likely than other workers to have done ACP. We contrast the use of three ACP components (living wills, durable power of attorney for health care, and informal discussions) among persons working in medical, legal, social/health support services, other professional, and other non-professional occupations. Data are from the Health and Retirement Study (n = 7668) and Wisconsin Longitudinal Study (n = 5464). Multivariable logistic regression analyses are adjusted for socioeconomic, demographic, health, and psychosocial factors that may confound associations between occupational group and ACP. Medical professionals in both samples are more likely than other professional workers to discuss their own treatment preferences, net of all controls. Medical professionals in the WLS are more likely to execute living wills and DPAHC designations, whereas legal professionals in the HRS are more likely to name a DPAHC. Non-professional workers are significantly less likely to do all three types of planning, although these differences are accounted for by socioeconomic factors. Social and health services professionals are no more likely than other professionals to do ACP. The on-the-job experiences and expertise of medical professionals may motivate them to discuss their own end-of-life preferences, which may render them more trustworthy sources of information for patients and clients. The Affordable Care Act provides reimbursement for medical professionals' end-of-life consultations with Medicare beneficiary patients, yet practitioners uncomfortable with such conversations may fail to initiate them. Programs to increase medical professionals' own ACP may have the secondary benefit of increasing ACP among their patients.

Dataset Information

Decision support intervention (Plan Well Guide) for patients and their substitute decision-makers to improve engagement in advance care planning: protocol for a randomised trial.

Publications

Decision support intervention (Plan Well Guide) for patients and their substitute decision-makers to improve engagement in advance care planning: protocol for a randomised trial.

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