Engagement in Advance Care Planning and Surrogates’ Knowledge of Patients’ Treatment Goals

Fried, Terri R.; Zenoni, Maria; Iannone, Lynne; OʼLeary, John R.; Fenton, Brenda T.

doi:10.1111/jgs.14858

Cited by 36 publications

(31 citation statements)

References 27 publications

(45 reference statements)

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“…20 This upstream model also allowed the primary palliative care social worker to explore differences in opinions about goals-of-care between patients and their families, to facilitate communication of patients' wishes, and finally to help rectify those differences before the patient experiences a clinical decline. 21 By discussing goals of care directly with patients, and not surrogates, in advance of a clinical decline, patients could explore, reflect, and process their illness, and in turn prepare for the inevitable while having choice and control in that process. Due to the complexity and challenges of medical decision making and ACP, these upstream conversations do not negate the need for a conversation about goals and values at the time of a change in clinical condition.…”

Section: Discussionmentioning

confidence: 99%

A Social Worker-Led Primary Palliative Care Model for Hospitalized Patients Admitted to the Hospital Medicine Service

Berglund

Chai

Moreno

et al. 2020

Palliative Medicine Reports

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Objective: To increase earlier access to palliative care, and in turn increase documented goals of care and appropriate hospice referrals for seriously ill patients admitted to hospital medicine. Background: Due to the growing number of patients with serious illness and the specialty palliative care workforce shortage, innovative primary palliative care models are essential to meet this population's needs. Methods: Patients with serious illness admitted to hospital medicine at a quaternary urban academic medical center in New York City and received an embedded palliative care social worker consultation in 2017. We used univariate analyses of sociodemographic, clinical, and utilization data to describe the sample. Results: Overall, 232 patients received a primary palliative care consultation (mean age of 69 years, 44.8% female, 34% white, median Karnofsky Performance Status of 40%), and 159 (69%) had capacity to participate in a goals-of -are conversation. Referrals were from palliative care solid tumor oncology trigger program (113 [49%]), specialty palliative care consultation team (42[18%]), and hospital medicine (34[14.6%]). Before the consultation, 10(4.3%) had documented goals of care and 207 (89%) did after the consultation. The percentage of those referred to hospice was 24.1%. Of those transferred to specialty palliative care consultation service, nearly half required symptom management. Discussion: Patients who received a primary palliative care consultation were seen earlier in their illness trajectory, based on their higher functional impairment, and the majority had capacity to participate in goals-of-care discussions, compared with those who were seen by specialty palliative care. The consultation increased goals-of-care documentation and the hospice referral rate was comparable with that of the specialty palliative consultation team.

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Section: Discussionmentioning

confidence: 99%

A Social Worker-Led Primary Palliative Care Model for Hospitalized Patients Admitted to the Hospital Medicine Service

Berglund

Chai

Moreno

et al. 2020

Palliative Medicine Reports

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show abstract

“…This gap has also been noted in previous work, where disagreements as to whether a conversation had even taken place were common. 15 This discrepancy between actual and perceived preparedness has direct clinical implications. Physicians should take care to ensure that substitute decision-makers fully understand their role and base their understanding of the patient's wishes, values and beliefs on reasonably detailed conversations.…”

Section: Discussionmentioning

confidence: 99%

Gaps in public preparedness to be a substitute decision-maker and the acceptability of high school education on resuscitation and end-of-life care: a mixed-methods study

Wong

Médor

Labre

et al. 2019

cmajo

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Background: When a patient is incapable of making medical decisions for him-or herself, a substitute decision-maker makes choices according to the patient's previously expressed wishes, values and beliefs; however, little is known about public readiness to act as a substitute decision-maker in Canada. Our primary objective was to measure public self-reported preparedness to act as a substitute decision-maker, and explore the attitudes, barriers and enablers associated with preparedness. Methods: From November 2017 to June 2018, we conducted a mixed-methods street intercept survey at 12 pedestrian areas in Ottawa, Ontario. We used descriptive statistics and logistic regression analysis to assess predictors of perceived preparedness to be a substitute decision-maker and determine support for high school education. We analyzed qualitative interview questions using inductive thematic analysis. Results: Of the 626 eligible respondents, 196 refused to participate, leaving 430 participants (response rate 68.7%). A total of 404 surveys (94.0%) were fully complete with no missing data. The respondents were mostly female (243 [56.5%]) and residents of Ontario (364 [84.6%]). The average age was 33.9 years. Although 314 respondents (73.0%) felt prepared to be a substitute decisionmaker, 194 (45.1%) reported never having had meaningful conversations with loved ones to understand their wishes in the event of critical illness. A total of 293 participants (68.1%) identified important barriers to feeling prepared. Most respondents (309 [71.9%]) agreed that high school students should learn about being a substitute decision-maker, citing age appropriateness, potential societal benefit and improved decision-making, while cautioning the need to respect different maturity levels, cultures and experiences. Interpretation: The lack of conversation between loved ones reveals a gap between perceived and actual preparedness to be a substitute decision-maker for a loved one with a critical illness. The overall acceptability of high school education warrants further exploration.

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“…A sizeable proportion of seriously ill older adults will experience a time when they lack the capacity to make their own medical treatment decisions, thus shifting the decision responsibility to a surrogate or ‘substitute’ decision-maker (SDM) 1 2. The ability of SDMs to make decisions consistent with their loved one’s wishes is generally poor and needs improvement 3–5. In order to ensure the patient’s prior expressed values and wishes are followed, patients and their SDM would ideally have engaged in a process to increase their ‘decisional readiness’.…”

Section: Background Rationalementioning

confidence: 99%

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

et al. 2019

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ObjectiveThe 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 analysisThis 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 disseminationApproval 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 numberNCT03239639; Pre-results.

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Engagement in Advance Care Planning and Surrogates’ Knowledge of Patients’ Treatment Goals

Cited by 36 publications

References 27 publications

A Social Worker-Led Primary Palliative Care Model for Hospitalized Patients Admitted to the Hospital Medicine Service

A Social Worker-Led Primary Palliative Care Model for Hospitalized Patients Admitted to the Hospital Medicine Service

Gaps in public preparedness to be a substitute decision-maker and the acceptability of high school education on resuscitation and end-of-life care: a mixed-methods study

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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