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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.

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:ObjectiveTo evaluate the effect of a video decision support tool on the preferences for future medical care in older people if they develop advanced dementia, and the stability of those preferences after six weeks.DesignRandomised controlled trial conducted between 1 September 2007 and 30 May 2008. Setting Four primary care clinics (two geriatric and two adult medicine) affiliated with three academic medical centres in Boston.ParticipantsConvenience sample of 200 older people (>or=65 years) living in the community with previously scheduled appointments at one of the clinics. Mean age was 75 and 58% were women.InterventionVerbal narrative alone (n=106) or with a video decision support tool (n=94).Main outcome measuresPreferred goal of care: life prolonging care (cardiopulmonary resuscitation, mechanical ventilation), limited care (admission to hospital, antibiotics, but not cardiopulmonary resuscitation), or comfort care (treatment only to relieve symptoms). Preferences after six weeks. The principal category for analysis was the difference in proportions of participants in each group who preferred comfort care.ResultsAmong participants receiving the verbal narrative alone, 68 (64%) chose comfort care, 20 (19%) chose limited care, 15 (14%) chose life prolonging care, and three (3%) were uncertain. In the video group, 81 (86%) chose comfort care, eight (9%) chose limited care, four (4%) chose life prolonging care, and one (1%) was uncertain (chi(2)=13.0, df=3, P=0.003). Among all participants the factors associated with a greater likelihood of opting for comfort care were being a college graduate or higher, good or better health status, greater health literacy, white race, and randomisation to the video arm. In multivariable analysis, participants in the video group were more likely to prefer comfort care than those in the verbal group (adjusted odds ratio 3.9, 95% confidence interval 1.8 to 8.6). Participants were re-interviewed after six weeks. Among the 94/106 (89%) participants re-interviewed in the verbal group, 27 (29%) changed their preferences (kappa=0.35). Among the 84/94 (89%) participants re-interviewed in the video group, five (6%) changed their preferences (kappa=0.79) (P<0.001 for difference).ConclusionOlder people who view a video depiction of a patient with advanced dementia after hearing a verbal description of the condition are more likely to opt for comfort as their goal of care compared with those who solely listen to a verbal description. They also have more stable preferences over time.Trial registrationClinicaltrials.gov NCT00704886.

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.

Project description:Individuals acting as surrogate decision makers for critically ill patients frequently struggle in this role and experience high levels of long-term psychological distress. Prior interventions designed to improve the sharing of information by the clinical team with surrogate decision makers have demonstrated little effect on surrogates' outcomes or clinical decisions. In this report, we describe the study protocol and corresponding intervention fidelity monitoring plan for a multicenter randomized clinical trial testing the impact of a multifaceted surrogate support intervention (Four Supports) on surrogates' psychological distress, the quality of decisions about goals of care, and healthcare use. We will randomize the surrogates of 300 incapacitated critically ill patients at high risk of death and/or severe long-term functional impairment to receive the Four Supports intervention or an education control. The Four Supports intervention adds to the intensive care unit (ICU) team a trained interventionist (family support specialist) who delivers four types of protocolized support-emotional support; communication support; decisional support; and, if indicated, anticipatory grief support-to surrogates through daily interactions during the ICU stay. The primary outcome is surrogates' symptoms of anxiety and depression at 6-month follow-up, measured with the Hospital Anxiety and Depression Scale. Prespecified secondary outcome measures are the Patient Perception of Patient Centeredness Scale (modified for use with surrogates) and Impact of Event Scale scores at 3- and 6-month follow-up, respectively, together with ICU and hospital lengths of stay and total hospital cost among decedents. The fidelity monitoring plan entails establishing and measuring adherence to the intervention using multiple measurement methods, including daily checklists and coding of audiorecorded encounters. This approach to intervention fidelity may benefit others designing and testing behavioral interventions in the ICU setting. Clinical trial registered with www.clinicaltrials.gov (NCT01982877).

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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.

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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.

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