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Advance care planning in different settings for people with dementia: A systematic review and narrative synthesis

Published online by Cambridge University Press:  10 June 2019

Adele J. Kelly ,
Tim Luckett ,
Josephine M. Clayton ,
Liam Gabb ,
Slavica Kochovska  and
Meera Agar
Adele J. Kelly
Affiliation:
HammondCare, Sydney, Australia
Tim Luckett*
Affiliation:
Improving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT), Faculty of Health, University of Technology Sydney, Sydney, Australia
Josephine M. Clayton
Affiliation:
HammondCare, Sydney, Australia Palliative Care Service, Greenwich and Royal North Shore Hospitals, Sydney, Australia Kolling Institute, Northern Clinical School, Sydney Medical School, University of Sydney, Sydney, Australia
Liam Gabb
Affiliation:
Princess Royal University Hospital, Kings College Hospital NHS Foundation Trust, UK
Slavica Kochovska
Affiliation:
Improving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT), Faculty of Health, University of Technology Sydney, Sydney, Australia
Meera Agar
Affiliation:
Improving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT), Faculty of Health, University of Technology Sydney, Sydney, Australia South Western Sydney Clinical School, University of New South Wales, Sydney, Australia Ingham Institute of Applied Medical Research, Sydney, Australia
*
Author for correspondence: Tim Luckett, Improving Palliative, Aged and Chronic Care through Clinical Research and Translation (IMPACCT), zFaculty of Health, University of Technology Sydney, Sydney, Australia. E-mail: [email protected]
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Abstract

Background

Advance care planning (ACP) is identified as being an important process for people with dementia. However, its efficacy for improving outcomes relevant for the individual, carers and the health system has yet to be established.

Aim

We conducted a systematic review with the aims of testing the efficacy of ACP for people with dementia and describing the settings and population in which it has been evaluated.

Methods

A search was completed of electronic databases in August 2016. Articles were included if they described interventions aimed at increasing planning for future care of people with dementia, delivered to the person with dementia, their carers and/or health professionals.

Results

Of 4,772 articles returned by searches, 30 met the inclusion criteria, testing interventions in nursing home (n= 16) community (n = 10) and acute care (n = 4) settings. Only 18 interventions directly involved the person with dementia, with the remainder focusing on surrogate decision-makers. In all settings, interventions were found effective in increasing ACP practice. In nursing homes, ACP was found to influence care and increase the concordance between end of life wishes and care provided. Interventions in the community were found to improve patient quality of life but were not shown to influence concordance.

Conclusion

Future research should focus on ways to involve people with dementia in decision-making through supported means.

Keywords

Dementiaend-of-life careadvance care planningsystematic reviewdecision-makingadvance care directivesdeathdying
Type
Review Article
Information
Palliative & Supportive Care , Volume 17 , Issue 6 , December 2019 , pp. 707 - 719
Copyright
Copyright © Cambridge University Press 2019 

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References

Ahronheim, JC, Morrison, RS, Morris, J, et al. (2000) Palliative care in advanced dementia: A randomized controlled trial and descriptive analysis. Journal of Palliative Medicine 3, 265–273. doi:10.1089/jpm.2000.3.265Google Scholar
Bekelman, DB, Black, BS, Shore, AD, et al. (2005) Hospice care in a cohort of elders with dementia and mild cognitive impairment. Journal of Pain and Symptom Management 30, 208–214.Google Scholar
Birkmeyer, J, Kerr, E, and Dimick, J (2006) Improving the quality of quality measurement. Performance Measurement: Accelerating Improvement. Institute of Medicine of the National Academies. Washington, DC: National Academies Press 177–203.Google Scholar
Bonner, GJ, Wang, E, Wilkie, DJ, et al. (2014) Advance care treatment plan (ACT-Plan) for African American family caregivers: A pilot study. Dementia (London) 13, 79–95.Google Scholar
Bravo, G, Dubois, MF, and Wagneur, B (2008) Assessing the effectiveness of interventions to promote advance directives among older adults: A systematic review and multi-level analysis. Social Science & Medicine 67, 1122–1132.Google Scholar
Brinkman-Stoppelenburg, A, Rietjens, JA, and van der Heide, A (2014) The effects of advance care planning on end-of-life care: a systematic review. Palliative Medicine 28, 100–125.Google Scholar
Campbell, ML and Guzman, JA (2004) A proactive approach to improve end-of-life care in a medical intensive care unit for patients with terminal dementia. Critical Care Medicine 32, 1839–1843.Google Scholar
Caplan, GA, Meller, A, Squires, B, et al. (2006) Advance care planning and hospital in the nursing home. Age & Ageing 35, 581–585.Google Scholar
Casarett, D, Karlawish, J, Morales, K, et al. (2005) Improving the use of hospice services in nursing homes: A randomized controlled trial. JAMA 294, 211–217.Google Scholar
Catic, AG, Berg, AI, Moran, JA, et al. (2013) Preliminary data from an advanced dementia consult service: Integrating research, education, and clinical expertise. Journal of the American Geriatrics Society 61, 2008–2012.Google Scholar
Chambaere, K, Cohen, J., Robijn, L, et al. (2015) End-of-life decisions in individuals dying with dementia in Belgium. Journal of the American Geriatrics Society 63, 290–296.Google Scholar
Connolly, A, Sampson, EL, and Purandare, N (2012) End-of-life care for people with dementia from ethnic minority groups: a systematic review. Journal of the American Geriatrics Society 60, 351–360.Google Scholar
Connors, AF, Dawson, NV, Desbiens, NA, et al. (1995) A controlled trial to improve care for seriously iII hospitalized patients: The study to understand prognoses and preferences for outcomes and risks of treatments (SUPPORT). JAMA 274, 1591–1598.Google Scholar
Danis, M, Southerland, LI, Garrett, JM, et al. (1991) A prospective study of advance directives for life-sustaining care. New England Journal of Medicine 324, 882–888.Google Scholar
DeLaGarza, VW, Andersen, RE, Mach, J, et al. (2001) Improving rates of advance directive discussions among managed care nursing home enrollees. Journal of the American Medical Directors Association 2, 105–109.Google Scholar
Dening, KH, Jones, L, and Sampson, EL (2011) Advance care planning for people with dementia: A review. International Psychogeriatrics 23, 1535–1551.Google Scholar
Dickinson, C, Bamford, C, Exley, C, et al. (2013) Planning for tomorrow whilst living for today: The views of people with dementia and their families on advance care planning. International Psychogeriatrics 25, 2011–2021.Google Scholar
Donabedian, A (1988) The quality of care. How can it be assessed? JAMA 260, 1743–1748.Google Scholar
Einterz, SF, Gilliam, R, Lin, FC, et al. (2014) Development and testing of a decision aid on goals of care for advanced dementia. Journal of the American Medical Directors Association 15, 251–255.Google Scholar
Ersek, M, Sefcik, JS, Lin, FC, et al. (2014) Provider staffing effect on a decision aid intervention. Clinical Nursing Research 23, 36–53.Google Scholar
Garden, G, Green, S, Pieniak, S, et al. (2016) The Bromhead Care Home Service: The impact of a service for care home residents with dementia on hospital admission and dying in preferred place of care. Clinical Medicine (London) 16, 114–118.Google Scholar
Givens, JL, Kiely, DK, Carey, K, et al. (2009) Healthcare proxies of nursing home residents with advanced dementia: Decisions they confront and their satisfaction with decision-making. Journal of the American Geriatrics Society 57, 1149–1155.Google Scholar
Hanson, LC, Carey, TS, Caprio, AJ, et al. (2011) Improving decision-making for feeding options in advanced dementia: A randomized, controlled trial. Journal of the American Geriatrics Society 59, 2009–2016.Google Scholar
Hanson, LC, Reynolds, KS, Henderson, M, et al. (2005) A quality improvement intervention to increase palliative care in nursing homes. Journal of Palliative Medicine 8, 576–584.Google Scholar
Hanson, LC, Song, MK, Zimmerman, S, et al. (2016) Fidelity to a behavioral intervention to improve goals of care decisions for nursing home residents with advanced dementia. Clinical Trials 13, 599–604.Google Scholar
Hilgeman, MM, Allen, RS, Snow, AL, et al. (2014) Preserving Identity and Planning for Advance Care (PIPAC): Preliminary outcomes from a patient-centered intervention for individuals with mild dementia. Aging & Mental Health 18, 411–424.Google Scholar
Hockley, J, Watson, J, Oxenham, D, et al. (2010) The integrated implementation of two end-of-life care tools in nursing care homes in the UK: An in-depth evaluation. Palliative Medicine 24, 828–838.Google Scholar
Hoffmann, TC, Erueti, C, and Glasziou, PP (2013) Poor description of non-pharmacological interventions: Analysis of consecutive sample of randomised trials. British Medical Journal 347, f3755.Google Scholar
Hoffmann, TC, Glasziou, PP Boutron, I., et al. . (2014). Better reporting of interventions: template for intervention description and replication (TIDieR) checklist and guide. British Medical Journal 348, g1687.Google Scholar
Lewis, M, Rand, E, Mullaly, E, et al. (2015) Uptake of a newly implemented advance care planning program in a dementia diagnostic service. Age and Ageing 44, 1045–1049.Google Scholar
Livingston, G, Lewis-Holmes, E, Pitfield, C, et al. (2013) Improving the end-of-life for people with dementia living in a care home: an intervention study. International Psychogeriatrics 25, 1849–1858.Google Scholar
Logsdon, RG, McCurry, SM, and Teri, L (2007) Time-limited support groups for individuals with early stage dementia and their care partners: Preliminary outcomes from a controlled clinical trial. Clinical Gerontologist: The Journal of Aging and Mental Health 30, 5–19.Google Scholar
Menne, HL and Whitlatch, CJ (2007) Decision-making involvement of individuals with dementia. The Gerontologist 47, 810–819.Google Scholar
Miura, Y, Asai, A, Matsushima, M, et al. (2006) Families' and physicians' predictions of dialysis patients' preferences regarding life-sustaining treatments in Japan. American Journal of Kidney Diseases 47, 122–130.Google Scholar
Moher, D, Pham, B, Klassen, TP, et al. (2000) What contributions do languages other than English make on the results of meta-analyses? Journal of Clinical Epidemiology 53, 964–972.Google Scholar
Molloy, DW, Guyatt, GH, Russo, R, et al. (2000) Systematic implementation of an advance directive program in nursing homes: a randomized controlled trial. JAMA 283, 1437–1444.Google Scholar
Moorhouse, P and Mallery, LH (2012) Palliative and therapeutic harmonization: A model for appropriate decision-making in frail older adults. Journal of the American Geriatrics Society 60, 2326–2332.Google Scholar
Morrison, RS, Chichin, E, Carter, J, et al. (2005) The effect of a social work intervention to enhance advance care planning documentation in the nursing home. Journal of the American Geriatrics Society 53, 290–294.Google Scholar
Murphy, E, Froggatt, K, Connolly, S, et al. (2016) Palliative care interventions in advanced dementia. The Cochrane Database of Systematic Reviews 12, CD011513.Google Scholar
Popay, J, Roberts, H, Sowden, A, et al. (2006) Guidance on the conduct of narrative synthesis in systematic reviews. A product from the ESRC methods programme Version, 1, b92. Available at https://www.lancaster.ac.uk/shm/research/nssr/research/dissemination/publications/NS_Synthesis_Guidance_v1.pdf. Accessed May 7, 2019.Google Scholar
Pratt, C, Nay, T, Ladd, L, et al. (1989) A model legal-financial education workshop for families caring for neurologically impaired elders. Gerontologist 29, 258–262.Google Scholar
Purser, KJ and Rosenfeld, T (2014) Evaluation of legal capacity by doctors and lawyers: The need for collaborative assessment. The Medical Journal of Australia 201, 483–485.Google Scholar
Reinhardt, JP, Chichin, E, Posner, L, et al. (2014) Vital conversations with family in the nursing home: preparation for end-stage dementia care. Journal of Social Work in End-of-Life & Palliative Care 10, 112–126.Google Scholar
Rhee, JJ, Zwar, NA, and Kemp, LA (2012) Advance care planning and interpersonal relationships: A two-way street. Family Practice cms063.Google Scholar
Roberts, JS and Silverio, E (2009) Evaluation of an education and support program for early-stage Alzheimer's disease. Journal of Applied Gerontology 28, 419–435.Google Scholar
Robinson, L, Dickinson, C, Rousseau, N, et al. (2012) A systematic review of the effectiveness of advance care planning interventions for people with cognitive impairment and dementia. Age and Ageing 41, 263–269.Google Scholar
Sabatino, CP (2010). The evolution of health care advance planning law and policy. Milbank Quarterly 88, 211–239.Google Scholar
Sampson, EL, Jones, L, Thune-Boyle, IC, et al. (2011) Palliative assessment and advance care planning in severe dementia: An exploratory randomized controlled trial of a complex intervention. Palliative Medicine 25, 197–209.Google Scholar
Samus, QM, Johnston, D, Black, BS, et al. (2014) A multidimensional home-based care coordination intervention for elders with memory disorders: The Maximizing Independence at Home (MIND) pilot randomized trial. American Journal of Geriatric Psychiatry 22, 398–414.Google Scholar
Sarabia-Cobo, CM, Pérez, V, de Lorena, P, et al. (2016) Decisions at the end of life made by relatives of institutionalized patients with dementia. Applied Nursing Research 31, e6–e10.Google Scholar
Scott, IA, Mitchell, GK, Reymond, EJ, et al. (2013) Difficult but necessary conversations: The case for advance care planning. Medical Journal of Australia 199, 662–666.Google Scholar
Silverstein, NM and Sherman, R (2010) Taking control of Alzheimer's disease: A training evaluation. Gerontology and Geriatrics Education 31, 274–288.Google Scholar
Smebye, KL, Kirkevold, M, and Engedal, K (2012) How do persons with dementia participate in decision making related to health and daily care? A multi-case study. BMC Health Services Research 12, 241.Google Scholar
Sulmasy, DP, Haller, K, and Terry, PB (1994) More talk, less paper: Predicting the accuracy of substituted judgments. American Journal of Medicine 96, 432–438.Google Scholar
Teno, JM, Lynn, J, Phillips, RS, et al. (1994) Do formal advance directives affect resuscitation decisions and the use of resources for seriously ill patients? SUPPORT Investigators. Study to Understand Prognoses and Preferences for Outcomes and Risks of Treatments. Journal of Clinical Ethics 5, 23–30.Google Scholar
US Preventive Services Task Force (2008) US Preventive Services Task Force Procedure Manual. Rockville, MD: Agency for Healthcare Research and Quality.Google Scholar
van der Steen, JT, Arcand, M, Toscani, F, et al. (2012) A family booklet about comfort care in advanced dementia: Three-country evaluation. Journal of the American Medical Directors Association 13, 368–375.Google Scholar
van Soest-Poortvliet, MC, van der Steen, JT, de Vet, HCW, et al. (2015) Comfort goal of care and end-of-life outcomes in dementia: A prospective study. Palliative Medicine 29, 538–546.Google Scholar
Volicer, L, Rheaume, Y, Brown, J, et al. (1986) Hospice approach to the treatment of patients with advanced dementia of the Alzheimer type. JAMA 256, 2210–2213.Google Scholar
Wickson-Griffiths, A, Kaasalainen, S, Ploeg, J, et al. (2014). A review of advance care planning programs in long-term care homes: Are they dementia friendly? Nursing Research and Practice 2014, 875897.Google Scholar
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