Skip to main content Accessibility help
×
Home

Advance directives in dementia: issues of validity and effectiveness

Published online by Cambridge University Press:  10 August 2009

Marike E. de Boer
Affiliation:
Department of Nursing Home Medicine, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands
Cees M. P. M. Hertogh
Affiliation:
Department of Nursing Home Medicine, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands
Rose-Marie Dröes
Affiliation:
Department of Psychiatry/Alzheimer Center, VU University Medical Center, Amsterdam, The Netherlands
Cees Jonker
Affiliation:
Department of Psychiatry/Alzheimer Center, VU University Medical Center, Amsterdam, The Netherlands
Jan A. Eefsting
Affiliation:
Department of Nursing Home Medicine, EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands
Corresponding
E-mail address:

Abstract

Background: Although advance directives may seem useful instruments in decision-making regarding incompetent patients, their validity in cases of dementia has been a much debated subject and little is known about their effectiveness in practice. This paper assesses the contribution of advance directives to decision-making in the care of people with dementia, with a special focus on non-treatment directives and directives for euthanasia.

Methods: The relevant problems from the ethical debate on advance directives in cases of dementia are summarized and we discuss how these relate to what is known from empirical research on the validity and effectiveness of advance directives in the clinical practice of dementia care.

Results: The ethical debate focuses essentially on how to respond to the current wishes of a patient with dementia if these contradict the patient's wishes contained in an advance directive. The (very limited) empirical data show that the main factors in medical decision-making in such cases is not the patient's perspective but the medical judgment of the physician and the influence of relatives. Insight into the experiences and wishes of people with dementia regarding advance directives is totally lacking in empirical research.

Conclusions: Ethics and actual practice are two “different worlds” when it comes to approaching advance directives in cases of dementia. It is clear, however, that the use of advance directives in practice remains problematic, above all in cases of advance euthanasia directives, but to a lesser extent also when non-treatment directives are involved. Although generally considered valid, their effectiveness seems marginal. Further empirical research into the (potential) value of advance directives in dementia care is recommended.

Type
Review Article
Copyright
Copyright © International Psychogeriatric Association 2009

Access options

Get access to the full version of this content by using one of the access options below.

References

Alzheimer Europe (2005). Advance Directives. A Position Paper – 6/2005. Available at: http://www.alzheimer-europe.org/upload/SPTUNFUYGGOM/downloads/7939D9FD4CEE.pdfGoogle Scholar
Brauer, S., Biller-Adorno, N. and Adorno, R. (2008). Country Reports on Advance Directives. ESF Exploratory Workshop: Advance Directives – Towards a Coordinated European Perspective. Switzerland: University of Zurich. Available at: http://www.ethik.uzh.ch/ibme/news/advance-directives/Country_Reports_AD.pdf (last accessed 3 April 2008).Google Scholar
de Boer, M. E., Hertogh, C. M. P. M., Dröes, R. M., Jonker, C. and Eefsting, J. A. (2008). Use of advance directives in dementia: the patient's perspective. Palliative Medicine, 22, 400401.Google Scholar
Dworkin, R. (1986). Autonomy and the demented self. The Milbank Quarterly, 64 (Suppl. 2), 416.CrossRefGoogle ScholarPubMed
Dresser, R. (1995). Dworkin on dementia: elegant theory, questionable policy. Hastings Center Report, 25 (6), 3238.CrossRefGoogle ScholarPubMed
Dute, J. C. J. et al. (2000). Evaluatie Wet op de geneeskundige behandelingsovereenkomst [Evaluation of the Medical Treatment Contract Act]. Den Haag: Zorg Onderzoek Nederland.Google Scholar
Fazel, S., Hope, T. and Jacoby, R. (1999). Assessment of competence to complete advance directives: validation of a patient-centred approach. BMJ, 318, 493497.CrossRefGoogle ScholarPubMed
Hertogh, C. M. P. M., de Boer, M. E., Dröes, R. M. and Eefsting, J. A. (2007). Would we rather lose our life than lose our self? Lessons from the Dutch debate on euthanasia for patients with dementia. American Journal of Bioethics, 7, 4856.CrossRefGoogle ScholarPubMed
Jaworska, A. (1999). Respecting the margins of agency: Alzheimer's patients and the capacity to value. Philosophy and Public Affairs, 28, 105138.CrossRefGoogle Scholar
Moody, H. (1988). From informed consent to negotiated consent. Gerontologist, 28, 64.CrossRefGoogle ScholarPubMed
Moody, H. (1992). Ethics in an Aging Society. Baltimore, MD: The Johns Hopkins University Press.Google Scholar
Onwuteaka-Philipsen, B. D. et al. (2007). Evaluatie. Wet toetsing levensbeëindiging op verzoek en hulp bij zelfdoding [Evaluation. Termination of Life on Request and Assisted Suicide Act]. Den Haag: ZonMw.Google Scholar
Parfit, D. (1984). Reasons and Persons. New York: Oxford University Press.Google Scholar
Rurup, M. L., Onwuteaka-Philipsen, B. D., van der Heide, A., van der Wal, G. and van der Maas, P. J. (2005a). Physicians’ experiences with demented patients with advance euthanasia directives in the Netherlands. Journal of the American Geriatrics Society, 53, 11381144.CrossRefGoogle ScholarPubMed
Rurup, M. L., Onwuteaka-Philipsen, B. D., Pasman, H. R. W., Ribbe, M. W. and van der Wal, G. (2005b). Attitudes of physicians, nurses and relatives towards end-of-life decisions concerning nursing home patients with dementia. Patient Education and Counseling, 61, 372–80.CrossRefGoogle ScholarPubMed
Schermer, M. (2009). Wiens leven, welke belangen? Over dementie, wilsverklaringen en het leven-als-geheel. In Rijpkema, P., van, G. Donselaar, Verbeek, B. and Wijsbek, H. (eds.), Als vuur. Opstellen voor Govert den Hartogh ter gelegheid van zijn emeritaat (pp. 109126). Den Haag: Boom Juridische Uitgevers.Google Scholar
Termination of Life on Request and Assisted Suicide (Review Procedures) Act. (2002). Available at: http://www.nvve.nl/assets/nvve/english/euthlawenglish.pdf; last accessed 7 November 2008.Google Scholar
The, A. M., Pasman, R., Onwuteaka-Philipsen, B., Ribbe, M. and van der Wal, G. (2002). Withholding the artificial administration of fluids and food from elderly patients with dementia: ethnographic study. BMJ, 325, 13261330.CrossRefGoogle ScholarPubMed
Tulsky, J. A. (2005). Beyond advance directives: importance of communication skills at the end of life. JAMA, 294, 359365.CrossRefGoogle ScholarPubMed
van Delden, J. J. M. (2004). The unfeasibility of requests for euthanasia in advance directives. Journal of Medical Ethics, 30, 447452.CrossRefGoogle ScholarPubMed
van der Maas, P. J., van Delden, J. J. M. and Pijnenborg, L. (1991). Medische beslissingen rond het levenseinde: het onderzoek voor de commissie onderzoek medische praktijk inzake euthanasia [Medical Decision-making at the End of Life]. 's Gravenhage: SDU uitgeverij.Google Scholar
van der Wal, G. and van der Maas, P. J. (1996). Euthanasie en andere beslissingen rond het levenseinde: de praktijk en de meldingsprocedure [Euthanasia and Other Medical Decisions concerning the End of Life: Practice and Notification Procedure]. 's Gravenhage: SDU uitgeverij.Google Scholar
van der Wal, G., van der Heide, A., Onwuteaka-Philipsen, B. D. and van der Maas, P. J. (2003). Medische besluitvorming aan het Einde van het Leven: De praktijk en toetsingsprocedure euthanasie. [Medical Decision-making at the End of Life: Practice and Review Procedure for Euthanasia]. Utrecht: Uitgeverij de Tijdstroom.Google Scholar
Vezzoni, C. (2005). The Legal Status and Social Practice of Treatment Directives in the Netherlands. Groningen: RUG.Google Scholar
Wet op de Geneeskundige Behandelingsovereenkomst (WGBO) [Medical Treatment Contract Act] (1995). Available at: http://www.hulpgids.nl/wetten/wgbo-tekst.htm; last accessed 7 November 2008 [in Dutch].Google Scholar
Widdershoven, G., and Berghmans, R. (2001). Advance directives in psychiatric care: a narrative approach. Journal of Medical Ethics, 27, 9297.CrossRefGoogle ScholarPubMed

Altmetric attention score

Full text views

Full text views reflects PDF downloads, PDFs sent to Google Drive, Dropbox and Kindle and HTML full text views.

Total number of HTML views: 39
Total number of PDF views: 620 *
View data table for this chart

* Views captured on Cambridge Core between September 2016 - 25th January 2021. This data will be updated every 24 hours.

Hostname: page-component-898fc554b-p5tlp Total loading time: 0.654 Render date: 2021-01-25T15:19:35.654Z Query parameters: { "hasAccess": "0", "openAccess": "0", "isLogged": "0", "lang": "en" } Feature Flags: { "shouldUseShareProductTool": true, "shouldUseHypothesis": true, "isUnsiloEnabled": true, "metricsAbstractViews": false, "figures": false, "newCiteModal": false }

Send article to Kindle

To send this article to your Kindle, first ensure no-reply@cambridge.org is added to your Approved Personal Document E-mail List under your Personal Document Settings on the Manage Your Content and Devices page of your Amazon account. Then enter the ‘name’ part of your Kindle email address below. Find out more about sending to your Kindle. Find out more about sending to your Kindle.

Note you can select to send to either the @free.kindle.com or @kindle.com variations. ‘@free.kindle.com’ emails are free but can only be sent to your device when it is connected to wi-fi. ‘@kindle.com’ emails can be delivered even when you are not connected to wi-fi, but note that service fees apply.

Find out more about the Kindle Personal Document Service.

Advance directives in dementia: issues of validity and effectiveness
Available formats
×

Send article to Dropbox

To send this article to your Dropbox account, please select one or more formats and confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your <service> account. Find out more about sending content to Dropbox.

Advance directives in dementia: issues of validity and effectiveness
Available formats
×

Send article to Google Drive

To send this article to your Google Drive account, please select one or more formats and confirm that you agree to abide by our usage policies. If this is the first time you use this feature, you will be asked to authorise Cambridge Core to connect with your <service> account. Find out more about sending content to Google Drive.

Advance directives in dementia: issues of validity and effectiveness
Available formats
×
×

Reply to: Submit a response


Your details


Conflicting interests

Do you have any conflicting interests? *