End-of-Life Decision Making for Alzheimer’s Disease Across Cultures
This chapter discusses a range of policy and ethical issues dealing with end-of-life decision making for Alzheimer’s patients. It analyzes issues including: palliative care; advance directives; withholding or withdrawing artificial hydration and feeding, antibiotics, and other care; and physician-assisted suicide. Caring for someone with AD at the end of life raises unique challenges because, in contrast to cancer and other advanced chronic diseases, a person with AD at some stage will lose cognitive abilities, function, and capacity. Therefore, they will be unable to make decisions about their care and treatment or express their needs and wishes for a protracted period as death approaches. This chapter also reviews the wide variation of end-of-life policies across cultures and within the United States.
KeywordsEnd-of-life decision making Palliative care Euthanasia Ethical issues
- Alzheimer’s Association (2016) End-of-life decisions: Honoring the wishes of a person with Alzheimer’s Disease. http://www.alz.org/national/documents/brochure_endoflifedecisions.pdf.
- Alzheimer’s Disease International (2016) World Alzheimer Report 2016. Improving Healthcare for People Living with Dementia; Coverage, Quality and Costs Now and in the Future. London: Alzheimer’s Disease International.Google Scholar
- Alzheimer Europe (2008) End-of-Life Care for People with Dementia. http://www.alzheimereurope.org/Ethics/Ethical-issues-in-practice/2008-End-of-Lifecare-for-people-with-dementia.
- Blank, R.H. (1995) Biomedical Policy. Chicago: Nelson-Hall.Google Scholar
- Blank, R.H. and J. Merrick, eds. (2007) End-of-Life Decision Making: A Cross-National Study. Cambridge: MIT Press.Google Scholar
- Cox, C.L., E. Cole, T. Reynolds, M. Wandrag et al. (2006) “Implications of cultural diversity in do not attempt resuscitation (DNAR) decisions.” Journal of Multicultural Nursing & Health 12 (1): 20–28.Google Scholar
- Dunn, H. (2009) Hard Choices for Loving People, 5th ed. Lansdowne, VA: A&A Publishers.Google Scholar
- Guidry, M. (2014) “On the boundaries of bioethics: Alzheimer’s, dementia, and euthanasia.” Applied Sentience. https://appliedsentience.com/2014/12/19/on-the-boundaries-of-bioethics-alzheimers-dementia-and-euthanasia/.
- Humphry, D. (2014) “Can an Alzheimer’s victim end their own life?” Assisted-Dying Blog. http://assisteddying.org/blog/2011/01/10/can-an-alzheimers-victim-end-their-own-life/.
- Johnstone, M-J. (2013) Alzheimer’s Disease, Media Representations and the Politics of Euthanasia: Constructing Risk and Selling Death in an Ageing Society. Surrey, UK: Ashgate.Google Scholar
- Kouwenhoven, P.S.C., N.J.H. Raijmakers, J.J.M. van Delden, J.A.C. Rietjens et al. (2015) “Opinions about euthanasia and advanced dementia: A qualitative study among Dutch physicians and members of the general public.” BMC Medical Ethics 16: 7. http://www.biomedcentral.com/1472-6939/16/7.CrossRefGoogle Scholar
- Livingston, G., A. Sommerlad, V. Orgeta, S.G. Costafreda et al. (2017) “Dementia prevention, intervention, and care.” The Lancet. https://doi.org/10.1016/S0140-6736(17)31363-6.
- McCrae, N. (2014) “Assisted suicide and dementia.” http://www.carenotkilling.org.uk/medical-opinion/assisted-suicide-and-dementia/.
- Miller, D.G., R. Dresser and S.Y.H. Kim (2018) “Advance euthanasia directives: A controversial case and its ethical implications.” Journal of Medical Ethics. https://doi.org/10.1136/medethics-2017-104644.
- Owen, J.E., K.T. Goode and W.E. Haley (2001) “End of life care and reactions to death in African-American and white family caregivers of relatives with Alzheimer’s disease.” Omega(Westport) 43: 349–61.Google Scholar
- Pinzon, L.C.E., M. Claus, K.M. Perrar, K.I. Zepf et al. (2013) “Dying with dementia: Symptom burden, quality of care, and place of death.” Deutsches Ärzteblatt International 110: 195–202.Google Scholar
- Prosporo, S. (2015) “A patient’s decision: Dementia and euthanasia.” https://sozoprosporo.com/2015/12/.
- Searight, H.R. and J. Gafford (2005) “Cultural diversity at the end of life: Issues and guidelines for family physicians.” American Family Physician 71 (3): 515–22.Google Scholar
- Smith, W.J. (2013) “Swiss suicide clinic kills Alzheimer’s patient, euthanasia activists applaud.” http://www.lifenews.com/2013/06/09/swiss-suicide-clinic-kills-alzheimers-patient-euthanasia-activists-applaud/
- Tomlinson, E. and J. Stott (2014) “Assisted dying in dementia: A systematic review of the international literature on the attitudes of health professionals, patients, carers and the public, and the factors associated with these.” International Journal of Geriatric Psychiatry 30 (1): 10–20.CrossRefGoogle Scholar