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. MEASUREMENTS We searched MEDLINE/PubMed, EMBASE, CINAHL, PsycINFO, and Web of Science for ACP randomized controlled trials from January 1, 2010, to March 3, 2020. We used standardized Preferred Reporting Items for Systematic Review and Meta-Analyses methods to chart study characteristics, including a standardized ACP Outcome Framework: Process (e.g., readiness), Action (e.g., communication), Quality of Care (e.g., satisfaction), Health Status (e.g., anxiety), and Healthcare Utilization. Differences between arms of P < .05 were deemed positive. RESULTS Of 1,464 articles, 69 met eligibility; 94% were rated high quality. There were variable definitions, age criteria (≥18 to ≥80 years), diseases (e.g., dementia and cancer), and settings (e.g., outpatient and inpatient). Interventions included facilitated discussions (42%), video only (20%), interactive, multimedia (17%), written only (12%), and clinician training (9%). For written only, 75% of primary outcomes were positive, as were 69% for multimedia programs; 67% for facilitated discussions, 59% for video only, and 57% for clinician training. Overall, 72% of Process and 86% of Action outcomes were positive. For Quality of Care, 88% of outcomes were positive for patient-surrogate/clinician congruence, 100% for patients/surrogate/clinician satisfaction with communication, and 75% for surrogate satisfaction with patients' care, but not for goal concordance. For Health Status outcomes, 100% were positive for reducing surrogate/clinician distress, but not for patient quality of life. Healthcare Utilization data were mixed. CONCLUSION ACP is complex, and trial characteristics were heterogeneous. Outcomes for all ACP interventions were predominantly positive, as were Process and Action outcomes. Although some Quality of Care and Health Status outcomes were mixed, increased patient/surrogate satisfaction with communication and care and decreased surrogate/clinician distress were positive. Further research is needed to appropriately tailor interventions and outcomes for local contexts, set appropriate expectations of ACP outcomes, and standardize across studies.

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

The Effectiveness of Advance Care Planning in Improving End-of-Life Outcomes for People With Dementia and Their Carers: A Systematic Review and Critical Discussion

BACKGROUND: Advance care planning is seen as an important strategy to improve end-of-life communication and the quality of life of patients and their relatives. However, the frequency of advance care planning conversations in practice remains low. In-depth understanding of patients' experiences with advance care planning might provide clues to optimise its value to patients and improve implementation. AIM: To synthesise and describe the research findings on the experiences with advance care planning of patients with a life-threatening or life-limiting illness. DESIGN: A systematic literature review, using an iterative search strategy. A thematic synthesis was conducted and was supported by NVivo 11. DATA SOURCES: The search was performed in MEDLINE, Embase, PsycINFO and CINAHL on 7 November 2016. RESULTS: Of the 3555 articles found, 20 were included. We identified three themes in patients' experiences with advance care planning. 'Ambivalence' refers to patients simultaneously experiencing benefits from advance care planning as well as unpleasant feelings. 'Readiness' for advance care planning is a necessary prerequisite for taking up its benefits but can also be promoted by the process of advance care planning itself. 'Openness' refers to patients' need to feel comfortable in being open about their preferences for future care towards relevant others. CONCLUSION: Although participation in advance care planning can be accompanied by unpleasant feelings, many patients reported benefits of advance care planning as well. This suggests a need for advance care planning to be personalised in a form which is both feasible and relevant at moments suitable for the individual patient.

/pdf/advance-care-planning-a-systematic-review-about-experiences-437fio1q8y.pdf

Advance care planning: A systematic review about experiences of patients with a life-threatening or life-limiting illness

Preconditions for successful advance care planning in nursing homes: A systematic review.

Approximately 630,000 people in the United States carried a diagnosis of Parkinson disease (PD) in 2010, and worldwide estimates indicate that up to 10 million individuals may be diagnosed currently.1,2 The national economic burden of PD was estimated to exceed $14.4 billion in 2010.1 PD is a heterogeneous disorder with motor and nonmotor features that are often underdiagnosed and, in turn, provided limited treatment options. The American Academy of Neurology (AAN) created a quality measurement set in 2010 to provide a framework for measuring progress on addressing these treatment gaps in care.3

https://n.neurology.org/content/neurology/86/24/2278.full.pdf

Quality improvement in neurology: Parkinson disease update quality measurement set: Executive summary

Background: advance care planning (ACP) is a process to establish an individual's preference for care in the future; few UK studies have been conducted to ascertain public attitudes towards ACP.Objective: the aim of this study was to assess the attitudes of older people in East Midlands through the development and administration of a survey.Design: the survey questionnaire was developed on the basis of a literature review, exploratory focus groups with older adults and expert advisor input. The final questions were then re-tested with lay volunteers.Setting: thirteen general practices were enrolled to send out surveys to potential participants aged 65 or older. There were no additional inclusion or exclusion criteria for participants.Methods: simple descriptive statistics were used to describe the responses and regression analyses were used to evaluate which items predicted responses to key outcomes.Results: of the 5,375 (34%) community-dwelling older peoples, 1,823 returned questionnaires. Seventeen per cent of respondents had prepared an ACP document; of whom, 4% had completed an Advance Decision to Refuse Treatment (ADRT). Five per cent of respondents stated that they had been offered an opportunity to talk about ACP. Predictors of completing an ACP document included: being offered the opportunity to discuss ACP, older age, better physical function and male gender. Levels of trust were higher for families than for professionals. One-third of the respondents would be interested in talking about ACP if sessions were available.Conclusion: although a third of the respondents were in favour of discussing ACP if the opportunity was available with their GP, only a relative minority (17%) had actively engaged. Preferences were for informal discussions with family rather than professionals.

Irfana Musa

Papers

A survey of older peoples’ attitudes towards advance care planning