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      Perspectives of people with dementia and carers on advance care planning and end-of-life care: A systematic review and thematic synthesis of qualitative studies

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          Abstract

          Background:

          Advance care planning aims to ensure that care received during serious and chronic illness is consistent with the person’s values, preferences and goals. However, less than 40% of people with dementia undertake advance care planning internationally.

          Aim:

          This study aims to describe the perspectives of people with dementia and their carers on advance care planning and end-of-life care.

          Design:

          Systematic review and thematic synthesis of qualitative studies.

          Data sources:

          Electronic databases were searched from inception to July 2018.

          Results:

          From 84 studies involving 389 people with dementia and 1864 carers, five themes were identified: avoiding dehumanising treatment and care (remaining connected, delaying institutionalisation, rejecting the burdens of futile treatment); confronting emotionally difficult conversations (signifying death, unpreparedness to face impending cognitive decline, locked into a pathway); navigating existential tensions (accepting inevitable incapacity and death, fear of being responsible for cause of death, alleviating decisional responsibility); defining personal autonomy (struggling with unknown preferences, depending on carer advocacy, justifying treatments for health deteriorations); and lacking confidence in healthcare settings (distrusting clinicians’ mastery and knowledge, making uninformed choices, deprived of hospice access and support at end of life).

          Conclusion:

          People with dementia and their carers felt uncertain in making treatment decisions in the context of advance care planning and end-of-life care. Advance care planning strategies that attend to people’s uncertainty in decision-making may help to empower people with dementia and carers and strengthen person-centred care in this context.

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          Most cited references100

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          Defining Advance Care Planning for Adults: A Consensus Definition From a Multidisciplinary Delphi Panel.

          Despite increasing interest in advance care planning (ACP) and previous ACP descriptions, a consensus definition does not yet exist to guide clinical, research, and policy initiatives.
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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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              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

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                Author and article information

                Journal
                Palliat Med
                Palliat Med
                PMJ
                sppmj
                Palliative Medicine
                SAGE Publications (Sage UK: London, England )
                0269-2163
                1477-030X
                08 November 2018
                March 2019
                : 33
                : 3
                : 274-290
                Affiliations
                [1 ]Advance Care Planning Australia, Austin Health, Melbourne, VIC, Australia
                [2 ]Sydney Medical School, The University of Sydney, Sydney, NSW, Australia
                [3 ]Sydney School of Public Health, The University of Sydney, Sydney, NSW, Australia
                [4 ]School of Medicine and Public Health (General Practice), The University of Newcastle, Callaghan, NSW, Australia
                [5 ]Australian Centre for Evidence Based Aged Care, La Trobe University, Melbourne, VIC, Australia
                [6 ]Wicking Dementia Research and Education Centre, College of Health and Medicine, University of Tasmania, Hobart, TAS, Australia
                [7 ]Rural Clinical School of Western Australia, University of Western Australia, Albany, WA, Australia
                [8 ]Faculty of Medicine, Dentistry and Health Science, University of Melbourne, Melbourne, VIC, Australia
                Author notes
                [*]Marcus Sellars, Advance Care Planning Australia, Austin Health, 145 Studley Road, PO Box 5555, Melbourne, VIC 3084, Australia. Email: marcus.sellars@ 123456austin.org.au
                Author information
                https://orcid.org/0000-0002-8299-0313
                https://orcid.org/0000-0003-1781-402X
                https://orcid.org/0000-0003-2734-2951
                Article
                10.1177_0269216318809571
                10.1177/0269216318809571
                6376607
                30404576
                56d9f53a-cc7e-4208-8f4d-d4901049e853
                © The Author(s) 2018

                This article is distributed under the terms of the Creative Commons Attribution 4.0 License ( http://www.creativecommons.org/licenses/by/4.0/) which permits any use, reproduction and distribution of the work without further permission provided the original work is attributed as specified on the SAGE and Open Access pages ( https://us.sagepub.com/en-us/nam/open-access-at-sage).

                History
                Funding
                Funded by: Australian Government Department of Health National Palliative Care Program, ;
                Categories
                Review Articles

                Anesthesiology & Pain management
                dementia,advance care planning,carers,qualitative research,end-of-life,systematic review

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