Dementia, End of Life, and Euthanasia: A Survey Among Dementia Specialists Organized by the Belgian Dementia Council

Article type: Research Article

Authors: Picard, Gaëtane^a | Bier, Jean-Christophe^b | Capron, Isabelle^c | De Deyn, Peter Paul^{d; e} | Deryck, Olivier^f | Engelborghs, Sebastiaan^{d; r} | Hanseeuw, Bernard^{g; h} | Lemper, Jean-Claudeⁱ | Mormont, Eric^{j; h} | Petrovic, Mirko^k | Salmon, Eric^{l; m} | Segers, Kurtⁿ | Sieben, Anne^o | Thiery, Evert^o | Ventura, Manfredi^p | Versijpt, Jan^r | Ivanoiu, Adrian^{g; h; *}

Affiliations: [a] Department of Neurology, Clinique Saint-Pierre, Ottignies, Belgium | [b] Department of Neurology, Erasme University Hospital, Université Libre de Bruxelles, Brussels, Belgium | [c] Department of Neurology, Cliniques de l’Europe – St Michel, Brussels, Belgium | [d] Reference Center for Biological Markers of Dementia (BIODEM), Laboratory of Neurochemistry and Behavior, Institute Born-Bunge, University of Antwerp, Belgium | [e] Department of Neurology and Memory Clinic, Hospital Network Antwerp (ZNA) Middelheim and Hoge Beuken, Antwerp, Belgium | [f] Department of Neurology, Memory Clinic General Hospital Sint-Jan Brugge-Oostende Brugge, Belgium | [g] Department of Neurology, Cliniques Universitaires St Luc, Université catholique de Louvain, Brussels, Belgium | [h] Institute of Neuroscience (IoNS), Université catholique de Louvain, Brussels, Belgium | [i] Geriatric center Scheutbos, Brussels, Belgium | [j] Department of Neurology, Université catholique de Louvain, CHU UCL Namur, Yvoir, Belgium | [k] Department of Internal Medicine, Section of Geriatrics, Ghent University, Gent, Belgium | [l] GIGA Cyclotron Research Centre in vivo Imaging, University of Liége, Liége, Belgium | [m] Department of Neurology, Memory Clinic, Centre Hospitalier Universitaire (CHU) Liége, Liége, Belgium | [n] Department of Neurology, Brugmann University Hospital, Brussels, Belgium | [o] Department of Neurology, Ghent University Hospital, Ghent University, Ghent, Belgium | [p] Grand Hôpital de Charleroi (GHdC), Gilly, Belgium | [r] Department of Neurology, Universitair Ziekenhuis Brussel (UZ Brussel), Center for Neurosciences, Vrije Universiteit Brussel (VUB), Brussels, Belgium

Correspondence: [*] Correspondence to: Professor Adrian Ivanoiu, Saint Luc University Hospital and Institute of Neuroscience, Université catholique de Louvain, Avenue Hippocrate 10 Brussels 1200 Belgium. Tel.: +3227642146; Fax: +3227649046; E-mail: [email protected].

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

DOI: 10.3233/JAD-181277

Journal: Journal of Alzheimer's Disease, vol. 69, no. 4, pp. 989-1001, 2019