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Dementia, end of life, and euthanasia : a survey among dementia specialists organized by the Belgian Dementia Council

(2019) JOURNAL OF ALZHEIMERS DISEASE. 69(4). p.989-1001
Author
Organization
Abstract
Background: Palliative care and Advance Care Planning (ACP) are increasingly recommended for an optimal management of late-stage dementia. In Belgium, euthanasia has been decriminalized in 2002 for patients who are "mentally competent" (interpreted as non-demented). It has been suggested that advance directives for euthanasia (ADE) should be made possible for dementia patients. Objective: This study presents the results of an internet survey among Belgian dementia specialists. Methods: In 2013, the Belgian Dementia Council (BeDeCo) organized a debate on end of life decisions in dementia. Participants were medical doctors who are specialists in the dementia field. After the debate, an anonymous internet survey was organized. The participation rate was 55%. The sample was representative of the BeDeCo members. Results: The results showed consensus in favor of palliative care and ACP, although ACP is not systematically addressed in practice. Few patients with dementia have requested euthanasia, but for those who did the participants had agreed to implement it for some patients. A majority of participants (94%) believe that most patients and their families are poorly informed about euthanasia. Although most participants (77%) said they approved the Law on euthanasia, 65% said they were against an extension of the Law to allow ADE for dementia. Conclusion: Palliative care and ACP are clearly accepted by professionals, although a gap between recommendation and practice remain. Euthanasia is a much more debated issue, even if a majority of professionals are, in principle, in favor of the current Law and seem to disapprove with a Law change allowing ADE for dementia. A better education for both health professionals and the lay public will be a key element in the future.
Keywords
Advance directive, Alzheimer's disease, dementia, end of life, euthanasia, expert opinion, QUALITY-OF-LIFE, NURSING-HOME RESIDENTS, ALZHEIMERS-DISEASE, PALLIATIVE CARE, ADVANCE DIRECTIVES, PHYSICIANS, ANOSOGNOSIA, PROFESSIONALS, EXPERIENCES, CAREGIVERS

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Citation

Please use this url to cite or link to this publication:

MLA
Picard, Gaëtane, et al. “Dementia, End of Life, and Euthanasia : A Survey among Dementia Specialists Organized by the Belgian Dementia Council.” JOURNAL OF ALZHEIMERS DISEASE, vol. 69, no. 4, 2019, pp. 989–1001.
APA
Picard, G., Bier, J.-C., Capron, I., De Deyn, P. P., Deryck, O., Engelborghs, S., … Ivanoiu, A. (2019). Dementia, end of life, and euthanasia : a survey among dementia specialists organized by the Belgian Dementia Council. JOURNAL OF ALZHEIMERS DISEASE, 69(4), 989–1001.
Chicago author-date
Picard, Gaëtane, Jean-Christophe Bier, Isabelle Capron, Peter Paul De Deyn, Olivier Deryck, Sebastiaan Engelborghs, Bernard Hanseeuw, et al. 2019. “Dementia, End of Life, and Euthanasia : A Survey among Dementia Specialists Organized by the Belgian Dementia Council.” JOURNAL OF ALZHEIMERS DISEASE 69 (4): 989–1001.
Chicago author-date (all authors)
Picard, Gaëtane, Jean-Christophe Bier, Isabelle Capron, Peter Paul De Deyn, Olivier Deryck, Sebastiaan Engelborghs, Bernard Hanseeuw, Jean-Claude Lemper, Eric Mormont, Mirko Petrovic, Eric Salmon, Kurt Segers, Anne Sieben, Evert Thiery, Manfredi Ventura, Jan Versijpt, and Adrian Ivanoiu. 2019. “Dementia, End of Life, and Euthanasia : A Survey among Dementia Specialists Organized by the Belgian Dementia Council.” JOURNAL OF ALZHEIMERS DISEASE 69 (4): 989–1001.
Vancouver
1.
Picard G, Bier J-C, Capron I, De Deyn PP, Deryck O, Engelborghs S, et al. Dementia, end of life, and euthanasia : a survey among dementia specialists organized by the Belgian Dementia Council. JOURNAL OF ALZHEIMERS DISEASE. 2019;69(4):989–1001.
IEEE
[1]
G. Picard et al., “Dementia, end of life, and euthanasia : a survey among dementia specialists organized by the Belgian Dementia Council,” JOURNAL OF ALZHEIMERS DISEASE, vol. 69, no. 4, pp. 989–1001, 2019.
@article{8623878,
  abstract     = {Background: Palliative care and Advance Care Planning (ACP) are increasingly recommended for an optimal management of late-stage dementia. In Belgium, euthanasia has been decriminalized in 2002 for patients who are "mentally competent" (interpreted as non-demented). It has been suggested that advance directives for euthanasia (ADE) should be made possible for dementia patients. 
Objective: This study presents the results of an internet survey among Belgian dementia specialists. 
Methods: In 2013, the Belgian Dementia Council (BeDeCo) organized a debate on end of life decisions in dementia. Participants were medical doctors who are specialists in the dementia field. After the debate, an anonymous internet survey was organized. The participation rate was 55%. The sample was representative of the BeDeCo members. 
Results: The results showed consensus in favor of palliative care and ACP, although ACP is not systematically addressed in practice. Few patients with dementia have requested euthanasia, but for those who did the participants had agreed to implement it for some patients. A majority of participants (94%) believe that most patients and their families are poorly informed about euthanasia. Although most participants (77%) said they approved the Law on euthanasia, 65% said they were against an extension of the Law to allow ADE for dementia. 
Conclusion: Palliative care and ACP are clearly accepted by professionals, although a gap between recommendation and practice remain. Euthanasia is a much more debated issue, even if a majority of professionals are, in principle, in favor of the current Law and seem to disapprove with a Law change allowing ADE for dementia. A better education for both health professionals and the lay public will be a key element in the future.},
  author       = {Picard, Gaëtane and Bier, Jean-Christophe and Capron, Isabelle and De Deyn, Peter Paul and Deryck, Olivier and Engelborghs, Sebastiaan and Hanseeuw, Bernard and Lemper, Jean-Claude and Mormont, Eric and Petrovic, Mirko and Salmon, Eric and Segers, Kurt and Sieben, Anne and Thiery, Evert and Ventura, Manfredi and Versijpt, Jan and Ivanoiu, Adrian},
  issn         = {1387-2877},
  journal      = {JOURNAL OF ALZHEIMERS DISEASE},
  keywords     = {Advance directive,Alzheimer's disease,dementia,end of life,euthanasia,expert opinion,QUALITY-OF-LIFE,NURSING-HOME RESIDENTS,ALZHEIMERS-DISEASE,PALLIATIVE CARE,ADVANCE DIRECTIVES,PHYSICIANS,ANOSOGNOSIA,PROFESSIONALS,EXPERIENCES,CAREGIVERS},
  language     = {eng},
  number       = {4},
  pages        = {989--1001},
  title        = {Dementia, end of life, and euthanasia : a survey among dementia specialists organized by the Belgian Dementia Council},
  url          = {http://dx.doi.org/10.3233/jad-181277},
  volume       = {69},
  year         = {2019},
}

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