Advanced Care Directives in Residential Aged Care for Residents with Major Neuro-Cognitive Disorders (Dementia): A Scoping Review

References

• Allen, R. S., DeLaine, S. R., Chaplin, W. F., Marson, D. C., Bourgeois, M. S., Dijkstra, K., & Burgio, L. D. (2003). Advance care planning in nursing homes: Correlates of capacity and possession of advance directives. The Gerontologist, 43(3), 309–317. doi:10.1093/geront/43.3.309
   PubMed Web of Science ®Google Scholar
• American Psychiatric Association (2013). Diagnostic and statistical manual of mental disorders (DSM-5) (5th ed.). Washington: American Psychiatric Publishing.
   Google Scholar
• Bavelaar, L., Visser, M., Schlicksupp, P., Tilburgs, B., van der Maaden, T., Achterberg, W. P., & van der Steen, J. T. (2022). Change in advance care plans of nursing home residents with dementia and pneumonia: Secondary analysis of randomized controlled trial data. Journal of the American Medical Directors Association, 23(10), 1741.e19–1741.e26. doi:10.1016/j.jamda.2022.06.024
   PubMed Web of Science ®Google Scholar
• Bosisio, F., & Barazzetti, G. (2020). Advanced care planning: Promoting autonomy in caring for people with dementia. The American Journal of Bioethics, 20(8), 93–95. doi:10.1080/15265161.2020.1781958
   PubMed Web of Science ®Google Scholar
• Braun, V., & Clarke, V. (2021). Thematic analysis: A practical guide (1st ed.). Thousand Oaks, California: Sage Publications.
   Google Scholar
• Brazil, K., Carter, G., Cardwell, C., Clarke, M., Hudson, P., Froggatt, K., … Kernohan, W. G. (2018). Effectiveness of advance care planning with family carers in dementia nursing homes: A paired cluster randomized controlled trial. Palliative Medicine, 32(3), 603–612. doi:10.1177/0269216317722413
   PubMed Web of Science ®Google Scholar
• Bryant, J., Sellars, M., Sinclair, C., Detering, K., Buck, K., Waller, A., … Nolte, L. (2022). Inadequate completion of advance care directives by individuals with dementia: National audit of health and aged care facilities. BMJ Supportive & Palliative Care, 12(e3), e319–e328. doi:10.1136/bmjspcare-2020-002767
   Web of Science ®Google Scholar
• Casey, D., Lynch, U., Murphy, K., Cooney, A., Gannon, M., Houghton, C., … Meskell, P. (2020). Telling a “good or white lie”: The views of people living with dementia and their carers. Dementia, 19(8), 2582–2600. doi:10.1177/1471301219831525
   PubMedGoogle Scholar
• Cheung, D., & Dunn, M. (Eds.). (2023). Advance directives across Asia: A comparative socio-legal analysis. Cambridge, United Kingdom: Cambridge University Press.
   Google Scholar
• Clark, M. A., Ott, M., Rogers, M. L., Politi, M. C., Miller, S. C., Moynihan, L., … Dizon, D. (2017). Advance care planning as a shared endeavor: Completion of ACP documents in a multidisciplinary cancer program. Psycho-oncology, 26(1), 67–73. doi:10.1002/pon.4010
   PubMed Web of Science ®Google Scholar
• Clifton, M., Johnstone, W. M., & Kolasa, K. M. (2020). Feeding a person with advanced Alzheimer’s disease: An update. Nutrition Today, 55(5), 202–210. doi:10.1097/NT.0000000000000430
   Google Scholar
• Cohen, S. M., Volandes, A. E., Shaffer, M. L., Hanson, L. C., Habtemariam, D., & Mitchell, S. L. (2019). Concordance between proxy level of care preference and advance directives among nursing home residents with advanced dementia: A cluster randomized clinical trial. Journal of Pain and Symptom Management, 57(1), 37–46.e1. doi:10.1016/j.jpainsymman.2018.09.018
   PubMed Web of Science ®Google Scholar
• Davies, J., & George, R. (2013). Advance decisions to refuse treatment in cases of dementia. End of Life Journal, 3(2), 1–5. doi:10.1136/eoljnl-03-02.4
   Google Scholar
• Davis, D. S. (2018). Advance directives and Alzheimer’s disease. The Journal of Law, Medicine & Ethics, 46(3), 744–748. doi:10.1177/1073110518804235
   PubMed Web of Science ®Google Scholar
• Droz Mendelzweig, M. (2020). Social regulation activities in end-of-life: A qualitative study on completion of advance directives in Swiss nursing homes. BMC Palliative Care, 19(1), 57. doi:10.1186/s12904-020-00562-9
   PubMed Web of Science ®Google Scholar
• Fetherstonhaugh, D., McAuliffe, L., Bauer, M., & Shanley, C. (2017). Decision-making on behalf of people living with dementia: How do surrogate decision-makers decide? Journal of Medical Ethics, 43(1), 35–40. doi:10.1136/medethics-2015-103301
   PubMed Web of Science ®Google Scholar
• Fewing, R., Kirk, T. W., & Meisel, A. (2014). A fading decision. Hastings Center Report, 44(3), 14–16. doi:10.1002/hast.309
   PubMedGoogle Scholar
• Gaster, B. (2019). An advance directive for dementia: Documents that can guide care as dementia patients’ minds gradually fade. Generations, 79–82. Retrieved from https://nachw.org/wp-content/uploads/2020/07/NACDD/CDC215_A%20Primer%20on%20Managed%20Care-%20Multiple%20Chronic%20Conditions.pdf
   Google Scholar
• Goodman, C., Amador, S., Elmore, N., Machen, I., & Mathie, E. (2013). Preferences and priorities for ongoing and end-of-life care: A qualitative study of older people with dementia resident in care homes. International Journal of Nursing Studies, 50(12), 1639–1647. doi:10.1016/j.ijnurstu.2013.06.008
   PubMed Web of Science ®Google Scholar
• Goossens, B., Sevenants, A., Declercq, A., & Van Audenhove, C. (2020). Improving shared decision-making in advance care planning: Implementation of a cluster randomized staff intervention in dementia care. Patient Education and Counseling, 103(4), 839–847. doi:10.1016/j.pec.2019.11.024
   PubMed Web of Science ®Google Scholar
• Gupta, A., Bahl, B., Rabadi, S., Mebane, A., Levey, R., & Vasudevan, V. (2021). Value of advance care directives for patients with serious illness in the era of COVID pandemic: A review of challenges and solutions. The American Journal of Hospice & Palliative Care, 38(2), 191–198. doi:10.1177/1049909120963698
   PubMed Web of Science ®Google Scholar
• Harrison, K., Sampson, E. L., & De Vries, K. (2019). Advance care planning in dementia: recommendations for healthcare professionals. Palliative Care, 12, 1–10. https://doi.org/10.1177/1178224219826579
   Google Scholar
• Hendriks, S. A., Smalbrugge, M., Deliens, L., Koopmans, R. T. C. M., Onwuteaka-Philipsen, B. D., Hertogh, C. M. P. M., & van der Steen, J. T. (2017). End-of-life treatment decisions in nursing home residents dying with dementia in the Netherlands. International Journal of Geriatric Psychiatry, 32(12), e43–e49. doi:10.1002/gps.4650
   PubMed Web of Science ®Google Scholar
• Hickman, R. L. Jr., & Pinto, M. D. (2014). Advance directives lessen the decisional burden of surrogate decision-making for the chronically critically ill. Journal of Clinical Nursing, 23(5–6), 756–765. doi:10.1111/jocn.12427
   PubMed Web of Science ®Google Scholar
• Hong, Q. N., Fàbregues, S., Bartlett, G., Boardman, F., Cargo, M., Dagenais, P., … Pluye, P. (2018). The Mixed Methods Appraisal Tool (MMAT) version 2018 for information professionals and researchers. Education for Information, 34(4), 285–291. doi:10.3233/EFI-180221
   Web of Science ®Google Scholar
• Huang, H.-L., Shyu, Y.-I. L., Weng, L.-C., Chen, K.-H., & Hsu, W.-C. (2018). Predictors of advance directives among nursing home residents with dementia. International Psychogeriatrics, 30(3), 341–353. doi:10.1017/s1041610217001661
   PubMed Web of Science ®Google Scholar
• Ingravallo, F., Mignani, V., Mariani, E., Ottoboni, G., Melon, M. C., & Chattat, R. (2018). Discussing advance care planning: Insights from older people living in nursing homes and from family members. International Psychogeriatrics, 30(4), 569–579. doi:10.1017/s1041610217001983
   PubMed Web of Science ®Google Scholar
• Jimenez, G., Tan, W. S., Virk, A. K., Low, C. K., Car, J., & Ho, A. H. Y. (2018). Overview of systematic reviews of advance care planning: Summary of evidence and global lessons. Journal of Pain and Symptom Management, 56(3), 436–459.e25. doi:10.1016/j.jpainsymman.2018.05.016
   PubMed Web of Science ®Google Scholar
• Jimenez, G., Tan, W. S., Virk, A. K., Low, C. K., Car, J., & Ho, A. H. Y. (2019). State of advance care planning research: A descriptive overview of systematic reviews. Palliative & Supportive Care, 17(2), 234–244. doi:10.1017/S1478951518000500
   PubMed Web of Science ®Google Scholar
• Joanna Briggs Institute (2022). Critical appraisal tools. Adelaide, Australia: Joanna Briggs Institute. Retrieved from https://jbi.global/critical-appraisal-tools
   Google Scholar
• Jones, K., Birchley, G., Huxtable, R., Clare, L., Walter, T., & Dixon, J. (2019). End of life care: A scoping review of experiences of advance care planning for people with dementia. Dementia, 18(3), 825–845. doi:10.1177/1471301216676121
   PubMedGoogle Scholar
• Leong, L. J. P., & Crawford, G. B. (2018). Residential aged care residents and components of end-of-life care in an Australian hospital. BMC Palliative Care, 17(1), 1–9. doi:10.1186/s12904-018-0337-x
   PubMedGoogle Scholar
• Masukwedza, V., Traynor, V., Smyth, E., & Halcomb, E. J. (2019). Use of advance care directives for individuals with dementia living in residential accommodation: A descriptive survey. Collegian, 26(3), 348–354. doi:10.1016/j.colegn.2018.09.006
   Web of Science ®Google Scholar
• McDonald, W. M. (2017). Overview of neurocognitive disorders. Focus, 15(1), 4–12. doi:10.1176/appi.focus.20160030
   PubMedGoogle Scholar
• Menzel, P. T., & Chandler-Cramer, M. C. (2014). Advance directives, dementia, and withholding food and water by mouth. The Hastings Center Report, 44(3), 23–37. doi:10.1002/hast.313
   PubMed Web of Science ®Google Scholar
• Meyers, J. L., Moore, C., McGrory, A., Sparr, J., & Ahern, M. (2004). Physician orders for life-sustaining treatment form: Honoring end-of-life directives for nursing home residents. Journal of Gerontological Nursing, 30(9), 37–46. doi:10.3928/0098-9134-20040901-08
   PubMedGoogle Scholar
• Mitchell, S. L., Shaffer, M. L., Cohen, S., Hanson, L. C., Habtemariam, D., & Volandes, A. E. (2018). An advance care planning video decision support tool for nursing home residents with advanced dementia: A cluster randomized clinical trial. JAMA Internal Medicine, 178(7), 961–969. doi:10.1001/jamainternmed.2018.1506
   PubMed Web of Science ®Google Scholar
• National Heart Lung and Blood Institute (2021). Study Quality Assessment Tools. Bethesda, Maryland: National Heart Lung and Blood Institute. https://www.nhlbi.nih.gov/healthtopics/study-quality-assessment-tools
   Google Scholar
• Nedjat-Haiem, F. R., Hirsch, J., Currin-McCulloch, J., & Lundquist, M. (2023). Social workers’ perspectives about advance directives: A qualitative study. Patient Education and Counseling, 111, 107691. doi:10.1016/j.pec.2023.107691
   PubMed Web of Science ®Google Scholar
• Otis-Green, S., Thomas, J., Duncan, L., Walling, A., Lieto, C., Kung, J., … Wenger, N. (2019). Advance care planning: Opportunities for clinical social work leadership. Clinical Social Work Journal, 47(3), 309–320. doi:10.1007/s10615-019-00709-z
   Web of Science ®Google Scholar
• Palan Lopez, R., Mitchell, S. L., & Givens, J. L. (2017). Preventing burdensome transitions of nursing home residents with advanced dementia: It’s more than advance directives. Journal of Palliative Medicine, 20(11), 1205–1209. doi:10.1089/jpm.2017.0050
   PubMed Web of Science ®Google Scholar
• Ramos, M. D., Hold, J., & Mahmoud, R. (2021). End-of-life care decisions for patients with dementia. Journal of Nursing Practice Applications & Reviews of Research, 11(1), 58. doi:10.13178/jnparr.2021.11.01.1008
   Google Scholar
• Reinhardt, J. P., Chichin, E., Posner, L., & Kassabian, S. (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(2), 112–126. doi:10.1080/15524256.2014.906371
   PubMedGoogle Scholar
• Robinson, L., Dickinson, C., Bamford, C., Clark, A., Hughes, J., & Exley, C. (2013). A qualitative study: Professionals’ experiences of advance care planning in dementia and palliative care, “a good idea in theory but …”. Palliative Medicine, 27(5), 401–408. doi:10.1177/0269216312465651
   PubMed Web of Science ®Google Scholar
• Sellars, M., Chung, O., Nolte, L., Tong, A., Pond, D., Fetherstonhaugh, D., … Detering, K. M. (2019). 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. Palliative Medicine, 33(3), 274–290. doi:10.1177/0269216318809571
   PubMed Web of Science ®Google Scholar
• Silveira, M. J. (2021). Advance care planning and advance directives. UpToDate. Retrieved from https://www.uptodate.com/contents/advance-care-planning-and-advance-directives
   Google Scholar
• Street, M., Ottmann, G., Johnstone, M.-J., Considine, J., & Livingston, P. M. (2015). Advance care planning for older people in Australia presenting to the emergency department from the community or residential aged care facilities. Health & Social Care in the Community, 23(5), 513–522. doi:10.1111/hsc.12162
   PubMed Web of Science ®Google Scholar
• Sudore, R. L., Lum, H. D., You, J. J., Hanson, L. C., Meier, D. E., Pantilat, S. Z., … Heyland, D. K. (2017). Defining advance care planning for adults: A consensus definition from a multidisciplinary Delphi panel. Journal of Pain and Symptom Management, 53(5), 821–832.e1. doi:10.1016/j.jpainsymman.2016.12.331
   PubMed Web of Science ®Google Scholar
• The EndNote Team (2013). EndNote. In (Version EndNote 20) [64-bit]. Philadelphia: Clarivate.
   Google Scholar
• Tjia, J., Dharmawardene, M., & Givens, J. L. (2018). Advance directives among nursing home residents with mild, moderate, and advanced dementia. Journal of Palliative Medicine, 21(1), 16–21. doi:10.1089/jpm.2016.0473
   PubMed Web of Science ®Google Scholar
• Tricco, A. C., Lillie, E., Zarin, W., O'Brien, K. K., Colquhoun, H., Levac, D., … Straus, S. E. (2018). PRISMA extension for Scoping Reviews (PRISMA-ScR): Checklist and explanation. Annals of Internal Medicine, 169(7), 467–473. doi:10.7326/M18-0850
   PubMed Web of Science ®Google Scholar
• van Soest-Poortvliet, M. C., van der Steen, J. T., Gutschow, G., Deliens, L., Onwuteaka-Philipsen, B. D., de Vet, H. C. W., & Hertogh, C. M. P. M. (2015). Advance care planning in nursing home patients with dementia: A qualitative interview study among family and professional caregivers. Journal of the American Medical Directors Association, 16(11), 979–989. doi:10.1016/j.jamda.2015.06.015
   PubMed Web of Science ®Google Scholar
• Vandervoort, A., van den Block, L., van der Steen, J. T., Vander Stichele, R., Bilsen, J., & Deliens, L. (2012). Advance directives and physicians’ orders in nursing home residents with dementia in Flanders, Belgium: Prevalence and associated outcomes. International Psychogeriatrics, 24(7), 1133–1143. doi:10.1017/S1041610212000142
   PubMed Web of Science ®Google Scholar
• Veritas Health Innovation (2022). Covidence systematic review software [Computer software]. Veritas Health Innovation. Retrieved from www.covidence.org
   Google Scholar
• Volicer, L., & Stets, K. (2016). Acceptability of an advance directive that limits food and liquids in advanced dementia. The American Journal of Hospice & Palliative Care, 33(1), 55–63. doi:10.1177/1049909114554078
   PubMed Web of Science ®Google Scholar
• Wagle, K., Cottingham, A. H., Butler, D., Grover, J., & Litzelman, D. K. (2021). Understanding social workers’ hidden roles in medication safety for older adults: A qualitative study. Social Work in Health Care, 60(4), 369–386. doi:10.1080/00981389.2021.1900023
   PubMed Web of Science ®Google Scholar
• Wang, C.-W., Chan, C. L. W., & Chow, A. Y. M. (2018). Social workers’ involvement in advance care planning: A systematic narrative review. BMC Palliative Care, 17(1), 5. doi:10.1186/s12904-017-0218-8
   Google Scholar
• Weiss, B. D., & Fain, M. J. (2017). Dementia care: More than just prescription drugs. American Family Physician, 95(12), 766–767.
   PubMed Web of Science ®Google Scholar
• World Health Organization (2020). UN decade of healthy ageing 2020–2030. Retrieved from www.who.int/initiatives/decade-of-healthy-ageing
   Google Scholar
• World Health Organization (2021a). Fact sheet: Dementia. Retrieved from https://www.who.int/news-room/fact-sheets/detail/dementia
   Google Scholar
• World Health Organization (2021b). ICD-11 for mortality and morbidity statistics. Retrieved from https://icd.who.int/browse11/l-m/en#/http://id.who.int/icd/entity/546689346
   Google Scholar
• Wilkins, J. M. (2018). Narrative interest standard: A novel approach to surrogate decision-making for people with dementia. The Gerontologist, 58(6), 1016–1020. doi:10.1093/geront/gnx107
   PubMed Web of Science ®Google Scholar
• Wright, M. S. (2019). Dementia, healthcare decision making, and disability law. The Journal of Law, Medicine & Ethics, 47(4_suppl), 25–33. doi:10.1177/1073110519898040
   PubMed Web of Science ®Google Scholar
• Yadav, K. N., Gabler, N. B., Cooney, E., Kent, S., Kim, J., Herbst, N., … Courtright, K. R. (2017). Approximately one in three US adults completes any type of advance directive for end-of-life care. Health Affairs, 36(7), 1244–1251. doi:10.1377/hlthaff.2017.0175
   PubMed Web of Science ®Google Scholar