Advance directives in dementia: issues of validity and effectiveness
Open accessAbstract
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.
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Much of the debate about dementia EAS focuses on challenges in determining decisional capacity, evaluating an advance euthanasia directive's applicability, assessing unbearable suffering, and implementing the EAS procedure in advance request cases.
“Much of the debate about dementia EAS focuses on challenges in determining decisional capacity, evaluating an advance euthanasia directive’s applicability, assessing unbearable suffering, and implementing the EAS procedure in advance request cases.(2, 11–16)”
From Euthanasia and Assisted Suicide of Persons With Dementia in the Netherlands (2020) · cites this paper as [16]
Key points of debate regarding advance requests-including difficulties interpreting advance euthanasia directives, assessing unbearable suffering, and implementing the EAS procedure-are indeed problems that arise in advance request EAS.
“It also appears that key points of debate regarding advance requests(11–16)—including difficulties interpreting advance euthanasia directives, assessing unbearable suffering, and implementing the EAS procedure—are indeed problems that arise in advance request EAS.”
From Euthanasia and Assisted Suicide of Persons With Dementia in the Netherlands (2020) · cites this paper as [16]
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- Authors
- de Boer, M. E., Hertogh, C. M. P. M., Dröes, R.-M., Jonker, C., & Eefsting, J. A.
- Affiliations
- Amsterdam Public Health (NL)
- Amsterdam UMC Location Vrije Universiteit Amsterdam (NL)
- Venue
- International Psychogeriatrics
- Publisher
- Elsevier BV
- Published
- 2010-03
- Volume
- 22
- Issue
- 2
- Pages
- 201-208
- ISSN
- 1041-6102 (ISSN-L)
- OpenAlex
- W2162787115
- Cited by
- 81
- References
- 18
- Citations by year
- 2026: 3 · 2025: 2 · 2024: 5 · 2023: 2 · 2022: 7 · 2021: 6 · 2020: 6 · 2019: 7 · 2018: 5 · 2017: 3 · 2016: 5 · 2015: 5 · 2014: 3 · 2013: 4 · 2012: 9
- FWCI
- 5.69
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Licence
- Locations
- International Psychogeriatrics (publishedVersion, cc-by-nc-nd)
- PubMed (publishedVersion)
- Amsterdam UMC (VU Amsterdam) - Institutional Repository (publishedVersion)
- VU Research Portal (publishedVersion)
- Digital Academic REpository of VU University Amsterdam (Vrije Universiteit Amsterdam) (submittedVersion)
- Pure Amsterdam UMC (submittedVersion)
- DigitalGeorgetown (Georgetown University Library) (submittedVersion)
- Data Archiving and Networked Services (DANS) (submittedVersion)
- Topics
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Palliative Care and End-of-Life Issues
- Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics and bioethics in healthcare
- Social Sciences › Psychology › Clinical Psychology › Healthcare Decision-Making and Restraints
- Keywords
- advance directives, dementia, clinical decision-making, physician judgment, family influence, ethical debate, patient wishes
- MeSH terms
- Aged, Decision Making, Dementia, Euthanasia, Passive, Humans, Advance Directives, Mental Competency, Advance Directive Adherence
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