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Underlying goals of advance care planning (ACP): a qualitative analysis of the literature.

ABSTRACT: BACKGROUND:Since the introduction of the concept of advance care planning (ACP), many studies have been conducted exploring beneficial effects. These studies show a heterogeneity in clinical endpoints, which reflects diversity of goals connected to ACP. This study aims to get insight in the range of underlying goals that comprise the legitimacy of ACP. METHODS:Systematic literature search in PubMed, EMBASE, PsychInfo, CINAHL and Cochrane Library. Articles on normative aspects of ACP were included, based on title and abstract. Due to the quantity of inclusions, of which many had similar content, purposive sampling was used to select articles for full text document analysis. Analysis stopped once saturation was reached. RESULTS:In total, 6497 unique articles were found of which 183 were included. Saturation was reached after document analysis of 55 articles (30%); this yielded 141 codes concerning goals of ACP and also 70 codes about objections against ACP, which shed light on the underlying goals of ACP as well. We identified five underlying goals: respecting individual patient autonomy, improving quality of care, strengthening relationships, preparing for end-of-life, reducing overtreatment. CONCLUSIONS:Five distinctive underlying goals of ACP were identified, each with corresponding objections that need to be considered. Specifying underlying goals of ACP may direct the debate on definitions, methods and preferred outcomes of ACP. This study was funded by the Netherlands Organisation for Health Research and Development, grant 839120002.

SUBMITTER: Fleuren N

PROVIDER: S-EPMC7059342 | biostudies-literature | 2020 Mar

REPOSITORIES: biostudies-literature

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Underlying goals of advance care planning (ACP): a qualitative analysis of the literature.

Fleuren Nienke N Depla Marja F I A MFIA Janssen Daisy J A DJA Huisman Martijn M Hertogh Cees M P M CMPM

BMC palliative care 20200306 1

<h4>Background</h4>Since the introduction of the concept of advance care planning (ACP), many studies have been conducted exploring beneficial effects. These studies show a heterogeneity in clinical endpoints, which reflects diversity of goals connected to ACP. This study aims to get insight in the range of underlying goals that comprise the legitimacy of ACP.<h4>Methods</h4>Systematic literature search in PubMed, EMBASE, PsychInfo, CINAHL and Cochrane Library. Articles on normative aspects of A ...[more]

PMID: 32143601

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Project description:BACKGROUND:While various initiatives have been taken to improve advance care planning in nursing homes, it is difficult to find enough details about interventions to allow comparison, replication and translation into practice. OBJECTIVES:We report on the development and description of the ACP+ program, a multi-component theory-based program that aims to implement advance care planning into routine nursing home care. We aimed to 1) specify how intervention components can be delivered; 2) evaluate the feasibility and acceptability of the program; 3) describe the final program in a standardized manner. DESIGN:To develop and model the intervention, we applied multiple study methods including a literature review, expert discussions and individual and group interviews with nursing home staff and management. We recruited participants through convenience sampling. SETTING AND PARTICIPANTS:Management and staff (n = 17) from five nursing homes in Flanders (Belgium), a multidisciplinary expert group and a palliative care nurse-trainer. METHODS:The work was carried out by means of 1) operationalization of key intervention components-identified as part of a previously developed theory on how advance care planning is expected to lead to its desired outcomes in nursing homes-into specific activities and materials, through expert discussions and review of existing advance care planning programs; 2) evaluation of feasibility and acceptability of the program through interviews with nursing home management and staff and expert revisions; and 3) standardized description of the final program according to the TIDieR checklist. During step 2, we used thematic analysis. RESULTS:The original program with nine key components was expanded to include ten intervention components, 22 activities and 17 materials to support delivery into routine nursing home care. The final ACP+ program includes ongoing training and coaching, management engagement, different roles and responsibilities in organizing advance care planning, conversations, documentation and information transfer, integration of advance care planning into multidisciplinary meetings, auditing, and tailoring to the specific setting. These components are to be implemented stepwise throughout an intervention period. The program involves the entire nursing home workforce. The support of an external trainer decreases as nursing home staff become more autonomous in organizing advance care planning. CONCLUSIONS:The multicomponent ACP+ program involves residents, family, and the different groups of people working in the nursing home. It is deemed feasible and acceptable by nursing home staff and management. The findings presented in this paper, alongside results of the subsequent randomized controlled cluster trial, can facilitate comparison, replicability and translation of the intervention into practice.

Project description:More than 90,000 patients with ESRD die annually in the United States, yet advance care planning (ACP) is underutilized. Understanding patients' and families' diverse needs can strengthen systematic efforts to improve ACP.In-depth interviews were conducted with a purposive sample of patients and family/friends from dialysis units at two study sites. Applying grounded theory, interviews were audiotaped, professionally transcribed, and analyzed in an iterative process. Emergent themes were identified, discussed, and organized into major themes and subthemes.Thirteen patients and nine family/friends participated in interviews. The mean patient age was 63 years (SD 14) and five patients were women. Participants identified as black (n=1), Hispanic (n=4), Native American (n=4), Pacific Islander (n=1), white (n=11), and mixed (n=1). Three major themes with associated subthemes were identified. The first theme, "Prior experiences with ACP," revealed that these discussions rarely occur, yet most patients desire them. A potential role for the primary care physician was broached. The second theme, "Factors that may affect perspectives on ACP," included a desire for more of a connection with the nephrologist, positive and negative experiences with the dialysis team, disenfranchisement, life experiences, personality traits, patient-family/friend relationships, and power differentials. The third theme, "Recommendations for discussing ACP," included thoughts on who should lead discussions, where and when discussions should take place, what should be discussed and how.Many participants desired better communication with their nephrologist and/or their dialysis team. A number expressed feelings of disenfranchisement that could negatively impact ACP discussions through diminished trust. Life experiences, personality traits, and relationships with family and friends may affect patient perspectives regarding ACP. This study's findings may inform clinical practice and will be useful in designing prospective intervention studies to improve patient and family experiences at the end of life.

Project description:BackgroundFewer than half of the US population has an advance healthcare directive. Hospitalizations offer a key opportunity for clinicians to engage patients in advance care planning (ACP) conversations. Guidelines suggest screening for the presence of "serious illness" but do not further specify how to prioritize the 12.4 million patients hospitalized each year.ObjectiveTo establish a normative standard for prioritizing hospitalized patients for ACP conversations.Design and settingA modified Delphi study, with three iterative rounds of online surveys.ParticipantsMulti-disciplinary group of US-based clinicians with research and practical expertise in ACP.Main measuresIndirect and direct elicitation of short-term and 1-year risk of mortality that prompt experts to prioritize ACP conversations for hospitalized adults.Main resultsFifty-seven of 108 (52%) candidate panelists completed round 1, and 47 completed rounds 2 and 3. Panelists were primarily physicians (84%), with significant experience (mean years 23 [SD 9.8]), who either taught (55%) and/or performed research about ACP (55%). In round 1, > 70% of panelists agreed that all hospitalized adults ≥ 65 years should have an ACP conversation before discharge, but disagreed about the timing and content of the conversation. By round 3, > 70% of participants agreed that patients with either high (> 10%) short-term or high (≥ 34%) 1-year risk of mortality should have a goals of care conversation (i.e., focused on preferences for near-term treatment), while patients with low (≤ 10%) short-term and low (< 19%) 1-year risk of mortality warranted an ACP conversation (i.e., focused on preferences for future care) before discharge.LimitationsUse of case vignettes to elicit clinician judgment; response rate.ConclusionsPanelists agreed that clinicians should have an ACP conversation with all hospitalized adults over 65 years in an ACP conversation, adjusting the content and timing of the conversation conditional on the patient's risk of short-term and 1-year mortality.

Project description:IntroductionPatients in intensive care units (ICUs) may transition into an end-of-life phase during treatment. Advance care planning (ACP) for this population has not been studied comprehensively, and support for its implementation is insufficient.ObjectiveThis study aims to clarify the ACP support needs among critical perioperative patients.MethodsIn this qualitative descriptive study, semistructured interviews were conducted with patients previously admitted to the ICU. The survey was conducted from September to November 2019. Participants comprised 13 individuals, who were admitted to the ICU for a period of 3 months to 2 years after surgery.ResultsThe average age of the participants was 63.8 years. The average mechanical ventilation duration following surgery was 24.5 h. The interviews focused on the ACP needs from the preoperative period to discharge. About 90% of the patients thought about the possibility of death before surgery and considered giving advance orders (e.g., "I don't want life-sustaining treatment"). The participants discussed inheritance, work-related matters, and household issues with their families but rarely spoke about treatment and care. Although they examined the content of the advance directives, the medical staff was not informed about them. Patients revealed that they wanted to understand the distinction between life-prolonging and life-saving treatments and discuss it with the medical staff, apart from being educated on ACP. Many patients previously admitted to the ICU are unclear about the difference between life-prolonging and life-saving treatments; this is also true for medical staff.ConclusionPatients who had been admitted to the ICU after high-risk surgery thought they needed help with ACP before surgery. Therefore, patients have the right to know about treatment risks; however, medical staff believes that this is difficult to communicate. Thus, medical staff should consider ways to communicate clearly with patients, including discussing the risks associated with surgery.

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Underlying goals of advance care planning (ACP): a qualitative analysis of the literature.

Publications

Underlying goals of advance care planning (ACP): a qualitative analysis of the literature.

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