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

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Picard, Gaëtane Bier, Jean-Christophe Capron, Isabelle De Deyn, Peter Paul Deryck, Olivier Hanseeuw, Bernard [UCL] Mormont, Eric [UCL] Ivanoiu, Adrian [UCL]

(eng) 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.

Type de document Article de périodique (Journal article) – Article de recherche
Type d'accès Accès libre
Année de publication 2019
Langue Anglais
Information sur le périodique "Journal of Alzheimer's Disease" - Vol. 69, no. 4, p. 989-1001 (2019)
Peer reviewed oui
Editeur IOS Press ((Netherlands) Amsterdam)
issn 1387-2877
e-issn 1875-8908
Statut de la publication Publié
Affiliations UCL - SSS/IONS/NEUR - Clinical Neuroscience
UCL - (MGD) Service de neurologie
UCL - (SLuc) Service de neurologie
Mots-clés Advance directive ; Alzheimer’s disease ; Dementia ; End of life ; Euthanisia ; Expert opinion
Liens
  1. Herrmann N., Gauthier S., Diagnosis and treatment of dementia: 6. Management of severe Alzheimer disease, 10.1503/cmaj.070804
  2. Crowther J., Wilson K. C. M., Horton S., Lloyd-Williams M., Palliative care for dementia--time to think again?, 10.1093/qjmed/hct078
  3. Nourhashemi F., Gillette S., Cantet C., Stilmunkes A., Saffon N., Rouge-Bugat M. -E., Vellas B., Rolland Y., End-of-life care for persons with advanced Alzheimer disease: Design and baseline data from the ALFINE study, 10.1007/s12603-011-0333-9
  4. de Boer Marike E., Hertogh Cees M. P. M., Dröes Rose-Marie, Jonker Cees, Eefsting Jan A., Advance directives in dementia: issues of validity and effectiveness, 10.1017/s1041610209990706
  5. Evans Natalie, Pasman H. Roeline, Vega Alonso Tomás, Van den Block Lieve, Miccinesi Guido, Van Casteren Viviane, Donker Gé, Bertolissi Stefano, Zurriaga Oscar, Deliens Luc, Onwuteaka-Philipsen Bregje, EUROIMPACT on behalf of, End-of-Life Decisions: A Cross-National Study of Treatment Preference Discussions and Surrogate Decision-Maker Appointments, 10.1371/journal.pone.0057965
  6. Heyland Daren K., Failure to Engage Hospitalized Elderly Patients and Their Families in Advance Care Planning, 10.1001/jamainternmed.2013.180
  7. Robinson Louise, Dickinson Claire, Bamford Claire, Clark Alexa, Hughes Julian, Exley Catherine, A qualitative study: Professionals’ experiences of advance care planning in dementia and palliative care, ‘a good idea in theory but …’, 10.1177/0269216312465651
  8. Vandervoort An, Houttekier Dirk, Van den Block Lieve, van der Steen Jenny T., Stichele Robert Vander, Deliens Luc, Advance Care Planning and Physician Orders in Nursing Home Residents With Dementia: A Nationwide Retrospective Study Among Professional Caregivers and Relatives, 10.1016/j.jpainsymman.2013.03.009
  9. Dening Karen Harrison, Greenish Wendy, Jones Louise, Mandal Uttara, Sampson Elizabeth L, Barriers to providing end-of-life care for people with dementia: a whole-system qualitative study, 10.1136/bmjspcare-2011-000178
  10. Chambaere Kenneth, Cohen Joachim, Robijn Lenzo, Bailey S. Kathleen, Deliens Luc, End-of-Life Decisions in Individuals Dying with Dementia in Belgium, 10.1111/jgs.13255
  11. Detering K. M, Hancock A. D, Reade M. C, Silvester W., The impact of advance care planning on end of life care in elderly patients: randomised controlled trial, 10.1136/bmj.c1345
  12. Vandervoort An, Van den Block Lieve, van der Steen Jenny T., Volicer Ladislav, Stichele Robert Vander, Houttekier Dirk, Deliens Luc, Nursing Home Residents Dying With Dementia in Flanders, Belgium: A Nationwide Postmortem Study on Clinical Characteristics and Quality of Dying, 10.1016/j.jamda.2013.01.016
  13. Davies Nathan, Maio Laura, Vedavanam Krish, Manthorpe Jill, Vernooij-Dassen Myrra, Iliffe Steve, , Barriers to the provision of high-quality palliative care for people with dementia in England: a qualitative study of professionals' experiences, 10.1111/hsc.12094
  14. Boersma I., Miyasaki J., Kutner J., Kluger B., Palliative care and neurology: Time for a paradigm shift, 10.1212/wnl.0000000000000674
  15. van Soest-Poortvliet Mirjam C, van der Steen Jenny T, de Vet Henrica CW, Hertogh Cees MPM, Deliens Luc, Onwuteaka-Philipsen Bregje D, Comfort goal of care and end-of-life outcomes in dementia: A prospective study, 10.1177/0269216315570409
  16. Evans Natalie, Pasman H Roeline W, Donker Gé A, Deliens Luc, Van den Block Lieve, Onwuteaka-Philipsen Bregje, Van den Block Lieve, De Groote Zeger, Brearley Sarah, Caraceni Augusto, Cohen Joachim, Francke Anneke, Harding Richard, Higginson Irene J, Kaasa Stein, Linden Karen, Miccinesi Guido, Onwuteaka-Philipsen Bregje, Pardon Koen, Pasman Roeline, Pautex Sophie, Payne Sheila, Luc Deliens, , End-of-life care in general practice: A cross-sectional, retrospective survey of ‘cancer’, ‘organ failure’ and ‘old-age/dementia’ patients, 10.1177/0269216314526271
  17. van der Steen Jenny T., Dying with Dementia: What We Know after More than a Decade of Research, 10.3233/jad-2010-100744
  18. Sachs Greg A., Shega Joseph W., Cox-Hayley Deon, Barriers to excellent end-of-life care for patients with dementia, 10.1111/j.1525-1497.2004.30329.x
  19. Marson Daniel C, Loss of competency in Alzheimer's disease: conceptual and psychometric approaches, 10.1016/s0160-2527(01)00064-4
  20. Bolt Eva Elizabeth, Snijdewind Marianne C, Willems Dick L, van der Heide Agnes, Onwuteaka-Philipsen Bregje D, Can physicians conceive of performing euthanasia in case of psychiatric disease, dementia or being tired of living?, 10.1136/medethics-2014-102150
  21. Seale C, Legalisation of euthanasia or physician-assisted suicide: survey of doctors’ attitudes, 10.1177/0269216308102041
  22. Rurup Mette L., Onwuteaka-Philipsen Bregje D., Pasman H. Roeline W., Ribbe Miel W., van der Wal Gerrit, Attitudes of physicians, nurses and relatives towards end-of-life decisions concerning nursing home patients with dementia, 10.1016/j.pec.2005.04.016
  23. Kouwenhoven Pauline SC, Raijmakers Natasja JH, van Delden Johannes JM, Rietjens Judith AC, Schermer Maartje HN, van Thiel Ghislaine JMW, Trappenburg Margo J, van de Vathorst Suzanne, van der Vegt Bea J, Vezzoni Cristiano, Weyers Heleen, van Tol Donald G, van der Heide Agnes, Opinions of health care professionals and the public after eight years of euthanasia legislation in the Netherlands: A mixed methods approach, 10.1177/0269216312448507
  24. Kouwenhoven Pauline SC, Raijmakers Natasja JH, van Delden Johannes JM, Rietjens Judith AC, van Tol Donald G, van de Vathorst Suzanne, de Graeff Nienke, Weyers Heleen AM, van der Heide Agnes, van Thiel Ghislaine JMW, Opinions about euthanasia and advanced dementia: a qualitative study among Dutch physicians and members of the general public, 10.1186/1472-6939-16-7
  25. de Boer Marike E., Dröes Rose-Marie, Jonker Cees, Eefsting Jan A., Hertogh Cees M.P.M., Advance Directives for Euthanasia in Dementia: How Do They Affect Resident Care in Dutch Nursing Homes? Experiences of Physicians and Relatives : ADVANCE DIRECTIVES FOR EUTHANASIA IN DEMENTIA, 10.1111/j.1532-5415.2011.03414.x
  26. Tomlinson Emily, Stott Joshua, Assisted dying in dementia: a systematic review of the international literature on the attitudes of health professionals, patients, carers and the public, and the factors associated with these : Assisted dying in dementia, 10.1002/gps.4169
  27. GASTMANS CHRIS, DE LEPELEIRE JAN, LIVING TO THE BITTER END? A PERSONALIST APPROACH TO EUTHANASIA IN PERSONS WITH SEVERE DEMENTIA, 10.1111/j.1467-8519.2008.00708.x
  28. Bier, Rev Med Brux, 35, 394 (2014)
  29. Ready Rebecca E., Ott Brian R., Grace Janet, Insight and Cognitive Impairment : Effects on Quality-of-Life Reports From Mild Cognitive Impairment and Alzheimer's Disease Patients, 10.1177/1533317506290589
  30. Berwig Martin, Leicht H., Gertz H. J., Critical evaluation of self-rated quality of life in mild cognitive impairment and Alzheimer’s disease — Further evidence for the impact of anosognosia and global cognitive impairment, 10.1007/s12603-009-0063-4
  31. Starkstein S E, A diagnostic formulation for anosognosia in Alzheimer's disease, 10.1136/jnnp.2005.085373
  32. Anosognosia in Alzheimer's disease: a study of associated factors, 10.1176/jnp.7.3.338
  33. Denial of memory deficit in Alzheimer's disease, 10.1176/ajp.150.5.748
  34. Hurt C., Banerjee S, Tunnard C, Whitehead D., Tsolaki M, Mecocci P, Kloszewska I, Soininen H, Vellas B, Lovestone S, , Insight, cognition and quality of life in Alzheimer's disease, 10.1136/jnnp.2009.184598
  35. Conde-Sala Josep L., Reñé-Ramírez Ramón, Turró-Garriga Oriol, Gascón-Bayarri Jordi, Juncadella-Puig Montserrat, Moreno-Cordón Laura, Viñas-Diez Vanesa, Garre-Olmo Josep, Clinical Differences in Patients with Alzheimer's Disease According to the Presence or Absence of Anosognosia: Implications for Perceived Quality of Life, 10.3233/jad-2012-121360
  36. Vogel Asmus, Mortensen Erik Lykke, Hasselbalch Steen G., Andersen Birgitte B., Waldemar Gunhild, Patient versus informant reported quality of life in the earliest phases of Alzheimer's disease, 10.1002/gps.1619
  37. Zhao Hongmei, Novella Jean-Luc, Dramé Moustapha, Mahmoudi Rachid, Barbe Coralie, di Pollina Laura, Aquino Jean-Pierre, Pfitzenmeyer Pierre, Rouaud Olivier, George Marie-Yvonne, Ankri Joël, Blanchard François, Jolly Damien, Factors Associated with Caregivers’ Underestimation of Quality of Life in Patients with Alzheimer’s Disease, 10.1159/000333070
  38. Gräske Johannes, Fischer Thomas, Kuhlmey Adelheid, Wolf-Ostermann Karin, Quality of life in dementia care – differences in quality of life measurements performed by residents with dementia and by nursing staff, 10.1080/13607863.2012.667782
  39. Rurup Mette L, Onwuteaka-Philipsen Bregje D, Van Der Heide Agnes, Van Der Wal Gerrit, Van Der Maas Paul J, Physicians' Experiences with Demented Patients with Advance Euthanasia Directives in the Netherlands : DEMENTIA PATIENTS: ADVANCE EUTHANASIA DIRECTIVES, 10.1111/j.1532-5415.2005.53354.x
  40. Naglie Gary, Hogan David B., Krahn Murray, Beattie B. Lynn, Black Sandra E., MacKnight Chris, Freedman Morris, Patterson Christopher, Borrie Michael, Bergman Howard, Byszewski Anna, Streiner David, Irvine Jane, Ritvo Paul, Comrie Janna, Kowgier Matthew, Tomlinson George, Predictors of Patient Self-Ratings of Quality of Life in Alzheimer Disease: Cross-Sectional Results From the Canadian Alzheimer's Disease Quality of Life Study, 10.1097/jgp.0b013e3182006a67
  41. Prevalence and correlates of dysthymia and major depression among patients with Alzheimer's disease, 10.1176/ajp.152.1.37
  42. Villars Hélène, Gardette Virginie, Perrin Amélie, Hein Christophe, Elmalem Sophie, de Peretti Eva, Zueras Audrey, Vellas Bruno, Nourhashémi Fati, Study protocol: Randomised controlled trial to evaluate the impact of an educational programme on Alzheimer’s disease patients’ quality of life, 10.1186/s13195-014-0066-1
  43. van der Steen Jenny T, Onwuteaka-Philipsen Bregje D, Knol Dirk L, Ribbe Miel W, Deliens Luc, Caregivers’ understanding of dementia predicts patients’ comfort at death: a prospective observational study, 10.1186/1741-7015-11-105
Référence bibliographique Picard, Gaëtane ; Bier, Jean-Christophe ; Capron, Isabelle ; De Deyn, Peter Paul ; Deryck, Olivier ; et. al. Dementia, End of Life, and Euthanasia: A Survey Among Dementia Specialists Organized by the Belgian Dementia Council.. In: Journal of Alzheimer's Disease, Vol. 69, no. 4, p. 989-1001 (2019)
Permalien http://hdl.handle.net/2078.1/216518