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      Barriers to Advance Care Planning in Cancer, Heart Failure and Dementia Patients: A Focus Group Study on General Practitioners' Views and Experiences

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          Abstract

          Background

          The long-term and often lifelong relationship of general practitioners (GPs) with their patients is considered to make them the ideal initiators of advance care planning (ACP). However, in general the incidence of ACP discussions is low and ACP seems to occur more often for cancer patients than for those with dementia or heart failure.

          Objective

          To identify the barriers, from GPs' perspective, to initiating ACP and to gain insight into any differences in barriers between the trajectories of patients with cancer, heart failure and dementia.

          Method

          Five focus groups were held with GPs (n = 36) in Flanders, Belgium. The focus group discussions were transcribed verbatim and analyzed using the method of constant comparative analysis.

          Results

          Three types of barriers were distinguished: barriers relating to the GP, to the patient and family and to the health care system. In cancer patients, a GP's lack of knowledge about treatment options and the lack of structural collaboration between the GP and specialist were expressed as barriers. Barriers that occured more often with heart failure and dementia were the lack of GP familiarity with the terminal phase, the lack of key moments to initiate ACP, the patient's lack of awareness of their diagnosis and prognosis and the fact that patients did not often initiate such discussions themselves. The future lack of decision-making capacity of dementia patients was reported by the GPs as a specific barrier for the initiation of ACP.

          Conclusion

          The results of our study contribute to a better understanding of the factors hindering GPs in initiating ACP. Multiple barriers need to be overcome, of which many can be addressed through the development of practical guidelines and educational interventions.

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          Most cited references24

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          Dying with advanced dementia in the nursing home.

          Nursing homes are important providers of end-of-life care to persons with advanced dementia. We used data from the Minimum Data Set (June 1, 1994, to December 31, 1997) to identify persons 65 years and older who died with advanced dementia (n = 1609) and terminal cancer (n = 883) within 1 year of admission to any New York State nursing home. Variables from the Minimum Data Set assessment completed within 120 days of death were used to describe and compare the end-of-life experiences of these 2 groups. At nursing home admission, only 1.1% of residents with advanced dementia were perceived to have a life expectancy of less than 6 months; however, 71.0% died within that period. Before death, 55.1% of demented residents had a do-not-resuscitate order, and 1.4% had a do-not-hospitalize order. Nonpalliative interventions were common among residents dying with advanced dementia: tube feeding, 25.0%; laboratory tests, 49.2%; restraints, 11.2%; and intravenous therapy, 10.1%. Residents with dementia were less likely than those with cancer to have directives limiting care but were more likely to experience burdensome interventions: do-not-resuscitate order (adjusted odds ratio [OR], 0.12; 95% confidence interval [CI], 0.09-0.16), do-not-hospitalize order (adjusted OR, 0.33; 95% CI, 0.16-0.66), tube feeding (adjusted OR, 2.21; 95% CI, 1.51-3.23), laboratory tests (adjusted OR, 2.53; 95% CI, 2.01-3.18), and restraints (adjusted OR, 1.79; 95% CI, 1.23-2.61). Distressing conditions common in advanced dementia included pressure ulcers (14.7%), constipation (13.7%), pain (11.5%), and shortness of breath (8.2%). Nursing home residents dying with advanced dementia are not perceived as having a terminal condition, and most do not receive optimal palliative care. Management and educational strategies are needed to improve end-of-life care in advanced dementia.
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            Use of constant comparative analysis in qualitative research.

            This article describes the application of constant comparative analysis, which is one method that can be used to analyse qualitative data. The need for data analysis to be congruent with the overall research design is highlighted.
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              End-of-life care conversations with heart failure patients: a systematic literature review and narrative synthesis.

              Current models of end-of-life care (EOLC) have been largely developed for cancer and may not meet the needs of heart failure patients. To review the literature concerning conversations about EOLC between patients with heart failure and healthcare professionals, with respect to the prevalence of conversations; patients' and practitioners' preferences for their timing and content; and the facilitators and blockers to conversations. Systematic literature review and narrative synthesis. Searches of Medline, PsycINFO and CINAHL databases from January 1987 to April 2010 were conducted, with citation and journal hand searches. Studies of adult patients with heart failure and/or their health professionals concerning discussions of EOLC were included: discussion and opinion pieces were excluded. Extracted data were analysed using NVivo, with a narrative synthesis of emergent themes. Conversations focus largely on disease management; EOLC is rarely discussed. Some patients would welcome such conversations, but many do not realise the seriousness of their condition or do not wish to discuss end-of-life issues. Clinicians are unsure how to discuss the uncertain prognosis and risk of sudden death; fearing causing premature alarm and destroying hope, they wait for cues from patients before raising EOLC issues. Consequently, the conversations rarely take place. Prognostic uncertainty and high risk of sudden death lead to EOLC conversations being commonly avoided. The implications for policy and practice are discussed: such conversations can be supportive if expressed as 'hoping for the best but preparing for the worst'.
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                Author and article information

                Contributors
                Role: Editor
                Journal
                PLoS One
                PLoS ONE
                plos
                plosone
                PLoS ONE
                Public Library of Science (San Francisco, USA )
                1932-6203
                2014
                21 January 2014
                : 9
                : 1
                : e84905
                Affiliations
                [1 ]End-of-Life Care Research group, Ghent University & Vrije Universiteit Brussel (VUB), Brussels, Belgium
                [2 ]LUCAS (Center for Care Research and Consultancy), Catholic University of Louvain, Louvain, Belgium
                [3 ]Department of Public and Occupational Health, and EMGO+ Institute for Health and Care Research, VU University Medical Centre, Amsterdam, The Netherlands
                [4 ]Heymans Institute of Pharmacology, Ghent University, Ghent, Belgium
                KEMRI-Wellcome Trust Research Progrmame, Kenya
                Author notes

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

                Conceived and designed the experiments: ADV KP KB DH RD CVA LD RVS. Analyzed the data: ADV KB. Wrote the paper: ADV KP. Contributed to the planning of the data collection and the actual collection of data: ADV KP LD RVS. Contributed to the writing of the article and approved the final version of this manuscript: ADV KP KB RD DH CVA LD RVS.

                Article
                PONE-D-13-29208
                10.1371/journal.pone.0084905
                3897376
                24465450
                4a2ca2bd-87bb-4094-9ec5-6125e4cbd01e
                Copyright @ 2014

                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.

                History
                : 15 July 2013
                : 28 November 2013
                Page count
                Pages: 9
                Funding
                This study is part of the 'Flanders Study to Improve End-of-Life Care and Evaluation Tools (FLIECE-project)', a collaboration between the Vrije Universiteit Brussel, Ghent University, the Katholieke Universiteit Leuven, Belgium, and VU University Medical Centre Amsterdam, the Netherlands. This study is supported by a grant from the Flemish government agency for Innovation by Science and Technology (Agentschap voor Innovatie door Wetenschap en Technologie) (SBO IWT nr. 100036). The funders had no role in study design, data collection and analysis, decision to publish, or preparation of the manuscript.
                Categories
                Research Article
                Medicine
                Clinical Research Design
                Qualitative Studies
                Non-Clinical Medicine
                Health Care Policy
                Health Education and Awareness
                Health Systems Strengthening
                Communication in Health Care
                Health Care Providers
                Health Care Quality
                Medical Communication
                Palliative Care
                Primary Care
                Public Health
                Behavioral and Social Aspects of Health

                Uncategorized
                Uncategorized

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