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      Barriers to Advance Care Planning at the End of Life: An Explanatory Systematic Review of Implementation Studies

      1 , 2 , * , 1 , 3 , 4 ,   1 , 3 , 4
      PLoS ONE
      Public Library of Science

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          Advance Care Plans (ACPs) enable patients to discuss and negotiate their preferences for the future including treatment options at the end of life. Their implementation poses significant challenges.


          To investigate barriers and facilitators to the implementation of ACPs, focusing on their workability and integration in clinical practice.


          An explanatory systematic review of qualitative implementation studies.

          Data sources

          Empirical studies that reported interventions designed to support ACP in healthcare. Web of Knowledge, Ovid MEDLINE, CINAHL, PsycINFO, British Nursing Index and PubMed databases were searched.


          Direct content analysis, using Normalization Process Theory, to identify and characterise relevant components of implementation processes.


          13 papers identified from 166 abstracts were included in the review. Key factors facilitating implementation were: specially prepared staff utilizing a structured approach to interactions around ACPs. Barriers to implementation were competing demands of other work, the emotional and interactional nature of patient-professional interactions around ACPs, problems in sharing decisions and preferences within and between healthcare organizations.


          This review demonstrates that doing more of the things that facilitate delivery of ACPs will not reduce the effects of those things that undermine them. Structured tools are only likely to be partially effective and the creation of a specialist cadre of ACP facilitators is unlikely to be a sustainable solution. The findings underscore both the challenge and need to find ways to routinely incorporate ACPs in clinical settings where multiple and competing demands impact on practice. Interventions most likely to meet with success are those that make elements of Advance Care Planning workable within complex and time pressured clinical workflows.

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          Most cited references24

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          Understanding patients' experiences of treatment burden in chronic heart failure using normalization process theory.

          Our goal was to assess the burden associated with treatment among patients living with chronic heart failure and to determine whether Normalization Process Theory (NPT) is a useful framework to help describe the components of treatment burden in these patients. We performed a secondary analysis of qualitative interview data, using framework analysis, informed by NPT, to determine the components of patient "work." Participants were 47 patients with chronic heart failure managed in primary care in the United Kingdom who had participated in an earlier qualitative study about living with this condition. We identified and examined data that fell outside of the coding frame to determine if important concepts or ideas were being missed by using the chosen theoretical framework. We were able to identify and describe components of treatment burden as distinct from illness burden using the framework. Treatment burden in chronic heart failure includes the work of developing an understanding of treatments, interacting with others to organize care, attending appointments, taking medications, enacting lifestyle measures, and appraising treatments. Factors that patients reported as increasing treatment burden included too many medications and appointments, barriers to accessing services, fragmented and poorly organized care, lack of continuity, and inadequate communication between health professionals. Patient "work" that fell outside of the coding frame was exclusively emotional or spiritual in nature. We identified core components of treatment burden as reported by patients with chronic heart failure. The findings suggest that NPT is a theoretical framework that facilitates understanding of experiences of health care work at the individual, as well as the organizational, level. Although further exploration and patient endorsement are necessary, our findings lay the foundation for a new target for treatment and quality improvement efforts toward patient-centered care.
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            A clinical framework for improving the advance care planning process: start with patients' self-identified barriers.

            To explore barriers to multiple advance care planning (ACP) steps and identify common barrier themes that impede older adults from engaging in the process as a whole. Descriptive study. General medicine clinic. San Francisco County. One hundred forty-three English and Spanish speakers aged 50 and older (mean 61) enrolled in an advance directive preference study. Six months after reviewing two advance directives, self-reported ACP engagement and barriers to each ACP step were measured with open- and closedended questions using quantitative and qualitative (thematic content) analyses. Forty percent of participants did not contemplate ACP, 46% did not discuss with family or friends, 80% did not discuss with their doctor, and 90% did not document ACP wishes. Six barrier themes emerged: perceiving ACP as irrelevant (84%), personal barriers (53%), relationship concerns (46%), information needs (36%), health encounter time constraints (29%), and problems with advance directives (29%). Some barriers were endorsed at all steps (e.g., perceiving ACP as irrelevant). Others were endorsed at individual steps (e.g., relationship concerns for family or friend discussions, time constraints for doctor discussion, and problems with advance directives for documentation). Perceiving ACP to be irrelevant was the barrier theme most often endorsed at every ACP step. Other barriers were endorsed at specific steps. Understanding ACP barriers may help clinicians prioritize and address them and may also provide a framework for tailoring interventions to improve ACP engagement.
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              Describing reporting guidelines for health research: a systematic review.

              To describe the process of development, content, and methods of implementation of reporting guidelines for health research. A systematic review of publications describing health research reporting guidelines developed using consensus. Eighty-one reporting guidelines for health research were included in the review. The largest number of guidelines do not focus on a specific study type (n=35; 43%), whereas those that do primarily refer to reporting of randomized controlled trials (n=16; 35%). Most of the guidelines (n=76; 94%) include a checklist of recommended reporting items, with a median of 21 checklist items (range: 5-64 items). Forty-seven (58%) reporting guidelines were classified as new guidance. Explanation documents were developed for 11 (14%) reporting guidelines. Reporting-guideline developers provided little information about the guideline development process. Developers of 50 (62%) reporting guidelines encouraged endorsement, most commonly by including guidelines in journal instructions to authors (n=18; 36%). Reporting-guideline developers need to endeavor to maximize the quality of their product. Recently developed guidance is likely to facilitate more robust guideline development. Journal editors can be more confident in endorsing reporting guidelines that have followed these approaches. Copyright © 2011 Elsevier Inc. All rights reserved.

                Author and article information

                Role: Academic Editor
                PLoS One
                PLoS ONE
                PLoS ONE
                Public Library of Science (San Francisco, CA USA )
                13 February 2015
                : 10
                : 2
                [1 ]Faculty of Health Sciences, University of Southampton, Southampton, United Kingdom
                [2 ]Royal Berkshire NHS Foundation Trust, Reading, United Kingdom
                [3 ]University Hospital Southampton NHS Foundation Trust, Southampton, United Kingdom
                [4 ]National Institute for Health Research Collaboration for Leadership in Applied Research and Care Wessex, Southampton, United Kingdom
                University of Glasgow, UNITED KINGDOM
                Author notes

                Competing Interests: The authors have declared that no competing interests exist.

                Conceived and designed the experiments: SL CM AR. Performed the experiments: SL. Analyzed the data: SL CM. Wrote the paper: SL CM AR.


                This is an open access article distributed under the terms of the Creative Commons Attribution License, which permits unrestricted use, distribution, and reproduction in any medium, provided the original author and source are credited

                Page count
                Figures: 3, Tables: 2, Pages: 15
                SL is a Post Doctoral Research Fellow supported by the former South Central Strategic Health Authority. AR and CRM’s contribution to this work was partly supported by the National Institute for Health Research Collaboration for Leadership in Applied Health Research and Care (NIHR CLAHRC) Wessex which is a partnership between Wessex NHS organizations and partners and the University of Southampton. The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
                Research Article
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                All relevant data are within the paper and its Supporting Information files.



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