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Former Wishes and Current Desires

Demented Patients and Their Family Members’ Effort to Decide What they Would have Wanted

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Ethics, Health Policy and (Anti-) Aging: Mixed Blessings

Part of the book series: Ethics and Health Policy ((EHP,volume 1))

Abstract

By generally getting older, we stand a greater chance of in the last phases of our lives not being able to decide for ourselves anymore, either through dementia or through other diseases that affect cognitive functioning. Not everybody ages successfully, after all. Demographic estimations show that with the increase of life expectancy and of the percentage of elderly people in Western societies, the prevalence of dementia and other age related diseases increases greatly too (Plassman et al. 2007). Since in our Western culture we attach great worth to being able to decide for ourselves, this is a frightening prospect. People fear loosing their identity and tend to want to control what will happen to them and therefore may write down advance wishes . Even when they did not, their loved ones, having to take over the promotion of interest of the person who became decisionally incompetent, will try to do what they think the person himself would have wanted, herewith trying to take over self determination .

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Notes

  1. 1.

    Both cases derive from empirical qualitative research done by the author in different nursing homes in the Netherlands, in the years 1999–2008.

  2. 2.

    The issue of the professional responsibility and the relation between the physician’s judgment and the wishes of the patient, exceeds the scope of this paper, and is extensively discussed elsewhere (e.g. Touwen 2010).

References

  • Albrecht, G.L., and P.J. Devlieger. 1999. The disability paradox: high quality of life against all odds. Social Science & Medicine 48(8): 977–988.

    Article  CAS  Google Scholar 

  • Boer, M.E. de, C.M.P.H. Hertogh, R.M. Dröes, C. Jonker, and J.A. Eefsting. 2010. Advance directives in dementia: issues of validity and effectiveness. International Psychogeriatrics 22(2): 201–208.

    Article  PubMed  Google Scholar 

  • Brudney, D. 2009. Choosing for another. Beyond autonomy and best interests. Hastings Center Report 39(2): 31–37.

    Article  PubMed  Google Scholar 

  • Buchanan, A.E., and D.W. Brock. 1990. Deciding for others. The ethics of surrogate decision making. Cambridge/New York/Melbourne: Cambridge University Press.

    Book  Google Scholar 

  • DeGrazia, D. 2005. Human Identity and Bioethics. Cambridge/New York: Cambridge University Press.

    Book  Google Scholar 

  • Dresser, R. 1994. Missing persons: Legal perceptions of incompetent patients. Rutgers Law Review 46(2): 609–719.

    Google Scholar 

  • Dresser, R. 2003. Standards for family decisions: Replacing best interests with harm prevention. American Journal of Bioethics 3(2): 54–55.

    Article  PubMed  Google Scholar 

  • Dresser, R. 2005. Dworkin on dementia. Elegant theory, questionable policy. Hastings Center Report 25(6): 32–38.

    Google Scholar 

  • Dworkin, R. 1994. Life’s dominion. An argument about abortion, euthanasia, and individual freedom. New York: Vintage.

    Google Scholar 

  • Fagerlin, A., and C.E. Schneider. 2004. Enough: The failure of the Living Will. Hastings Center Report 34(2): 30–42.

    Article  PubMed  Google Scholar 

  • Hertogh, C.M.P.M. 2006. Advance care planning and the relevance of a palliative care approach in dementia. Age and Aging 35(6): 553–555.

    Article  Google Scholar 

  • Hertogh, C.M.P.H. 2009. The role of advance euthanasia directives as an aid to communication and shared decision-making in dementia. Journal of Medical Ethics 35: 100–103.

    Article  PubMed  CAS  Google Scholar 

  • Hertogh, C.M.P.H., M.E. de Boer, R. Dröes, and J.A. Eefsting. 2007. Would we rather lose our life than lose our self? Lessons from the Dutch debate on euthanasia for patients with dementia. The American Journal of Bioethics 7(4): 48–56.

    Article  PubMed  Google Scholar 

  • Jaworska, A. 1999. Respecting the margins of agency: Alzheimer’s patients and the capacity to value. Philosophy and Public Affairs 28(2): 105–138.

    Article  PubMed  Google Scholar 

  • Kutner, J.S., D.E. Nowels, C.T. Kassner, J. Houser, L.L. Bryant, and D.S. Main. 2003. Confirmation of the “disability paradox” among hospice patients: Preservation of quality of life despite physical ailments and psychosocial concerns. Palliative and Supportive Care 1(3): 231–237.

    PubMed  Google Scholar 

  • Livingston, G., G. Leavy, M. Manela, D. Linvingston, G. Rait, E. Sampson, S. Bavishi, K. Shahriyarolki, and C. Cooper. (2010). Making decisions for people with dementia who lack capacity: qualitative study of family carers in UK. British Medical Journal 341: c4148

    Article  Google Scholar 

  • Nuffield Council on Bioethics (2009) Dementia. Ethical issues.

    Google Scholar 

  • Plassman, B.L., K.M. Langa, G.G. Fisher, S.G. Heeringa, D.R. Weir, M.B. Ofstedal, J.R. Burke, M.D. Hurd, G.G. Potter, W.L. Rodgers, D.C. Steffens, R.J. Willis, and R.B. Wallace. (2007). Prevalence of dementia in the United States; The aging, demographics, and memory study. Neuroepidemiology 29(1–2): 125–132.

    Article  PubMed  CAS  Google Scholar 

  • Schermer, M. 2003. In search of ‘the good life’ for demented elderly. Medicine, Healthcare and Philosophy 6(1): 35–44.

    Article  Google Scholar 

  • Shalowitz, D.I., E. Garrett-Mayer, and D. Wendler. 2006. The accuracy of Surrogate Decision Makers. Archives of Internal Medicine 112: 493–497.

    Article  Google Scholar 

  • Touwen, D.P. 2008. Voor een ander. Beslissingsverantwoordelijkheden in de verpleeghuisgeneeskunde. Amsterdam: Aksant.

    Google Scholar 

  • Touwen, D.P. 2010. Tijdschrift voor Geriatrie en Gerontologie.

    Google Scholar 

  • Ubel, P.A., G. Loewenstein, N. Schwarz, and D. Smith. 2005. Mismanaging the unimaginable: The disability paradox and healthcare decision making. Health Psychology 24(4): 57–62.

    Article  Google Scholar 

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Correspondence to Dorothea P. Touwen PhD .

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Touwen, D. (2013). Former Wishes and Current Desires. In: Schermer, M., Pinxten, W. (eds) Ethics, Health Policy and (Anti-) Aging: Mixed Blessings. Ethics and Health Policy, vol 1. Springer, Dordrecht. https://doi.org/10.1007/978-94-007-3870-6_9

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  • DOI: https://doi.org/10.1007/978-94-007-3870-6_9

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