Euthanasia in patients with dementia and an advance euthanasia directive:towards practical guidance
Euthanasie bij mensen met ernstige dementie op basis van een schriftelijke euthanasieverklaring: de ontwikkeling van een handreiking: het DALT-project
Schriftelijke euthanasieverklaring van mensen met dementie
Al sinds de invoering van de euthanasiewet (2002) worstelen artsen met het dilemma hoe zij om moeten gaan met schriftelijke euthanasieverklaringen van mensen met ernstige dementie. Artsen zijn in meerderheid huiverig om het leven te beëindigen van iemand met wie zij daarover niet meer kunnen communiceren, maar de eerste uitvoeringen zijn een feit.
Doel en werkwijze
In dit onderzoek wordt vanuit juridisch, ethisch, en praktisch oogpunt inzicht verkregen in deze thematiek. Daarbij wordt gebruikt gemaakt van verschillende methoden, waaronder vragenlijstonderzoek onder specialisten ouderengeneeskunde, interviews met artsen en naasten, een review van de ethische en juridische literatuur gevolgd door interviews met experts, en een delphi studie gericht op de toepasselijkheid van de zorgvuldigheidscriteria.
Als eindresultaat beoogt dit onderzoek een handreiking te ontwikkelen waaraan artsen houvast kunnen hebben in het zorgvuldig omgaan met euthanasieverklaringen van mensen met dementie.
Auteur: D. Coers, M.E. de Boer, E.M. Sizoo, M. Smalbrugge, C.J.W. Leget, C.M.P.M. Hertogh
Magazine: Tijdschrift voor Ouderengeneeskunde (TvO)
Auteur: Djura Coers
Magazine: Huisarts & Wetenschap
Auteur: Coers DO, de Boer ME, Sizoo EM, Smalbrugge M, Leget CJW, Hertogh CMPM.
Magazine: Age and Ageing
Auteur: Djura Coers, Marike de Boer, Martin Buijsen, Carlo Leget, Cees Hertogh
Magazine: Tijdschrift voor Ouderengeneeskunde (TvO)
Auteur: Eefje Sizoo, Djura Coers, Marike de Boer
Auteur: Coers,D.O., Scholten,S., Sizoo,E.M., de Boer,M.E., Frederiks,B.J.M., Buijsen,M.A.J.M., Leget,C.J.W., Hertogh,C.M.P.M.
Auteur: M.E. de Boer, S.Scholten, D.O. Coers
Auteur: D.O. Coers, M.E. de Boer, E.M. Sizoo, M. Smalbrugge, C.J.W. Leget, C.M.P.M. Hertogh
Samenvatting van de aanvraag
BACKGROUND AND PROBLEM DEFINITION Already before the enactment of the Euthanasia Law (EL) in 2002 there has been an on-going debate on widening the practice of physician assisted death (PAD) to incompetent patients with and advance euthanasia directive (AED), with dementia being one of the conditions for which people are seeking such an end-of-life solution. Physicians however are reluctant to apply euthanasia to a person with whom they can no longer communicate in a meaningful way, because this makes it impossible to verify whether the current person still supports his AED. The 2002 EL offered no guidance to practitioners and patients on this issue. It says that the AED can replace the verbal request in case of incompetency, and that the due care criteria for lawful PAD “shall apply mutatis mutandis”. Since then there has been debate on the meaning of this cryptic formulation. Research in 2007 among elderly care physicians (ECP) - who have many patients with dementia in their practice - and relatives of people with dementia has shown that an AED cannot be adhered to without meaningful communication and the Royal Dutch Medical Association (KNMG) formulated as her professional norm, that euthanasia in dementia cases is feasible only if the patient can confirm his AED. This resulted in criticism from the Euthanasia Review Committees, who held that this professional norm was far too strict. A government working group confirmed the position of the Review Committees, but offered no new insights or guidance. Two cases recently published by the Review Committees led to fierce opposition among physicians. Both cases concerned incompetent nursing home residents with dementia and an AED who were sedated prior to the life terminating act to prevent them from offering resistance. 450 Physicians supported a page large newspaper ad, stating a strong disapproval of this “sneaky euthanasia”. In addition, a recent survey among ECPs showed that attitudes with regard to adherence to an AED have hardly changed since 2007. Also ECPs and residents report feelings of insecurity and pressure and they express a need for guidance and normative support in handling AEDs of people with dementia. RESEARCH OBJECTIVE The overarching goal of this project is to develop a research based guideline for ECPs for a careful and responsible handling of AEDs in dementia cases. METHODS This will be a mixed method study, encompassing a survey among ECPs, qualitative interviews among physicians and relatives of people with dementia, a review of the legal and ethical literature followed by interviews with ethicists and legal experts, and a Delphi study. The work will be divided in five parts or work packages. (1) First, grounds for complying or not with and AED and the general impact of deciding how to deal with an AED will be explored among physicians and relatives. Hereto a questionnaire will be send out to ECPs, ECPs working as consultants in PAD cases (SCEN physicians) and ECPs working at the ‘end of life clinic’. The questionnaire will inform after their experiences with AEDs in dementia cases and their reasons to comply (or not) with the AED. This will be followed by interviews with physicians (ECPs, but if relevant also general practitioners) and relatives involved in the reported cases on the decision making process and the grounds to comply or not a with the AED. Other topics to be explored in these interviews are ethical considerations, feelings of pressure and uncertainty, the emotional impact of the situation and elements of controversy. (2) In a parallel part of the study, physicians who supported the call “no sneaky euthanasia in dementia cases” will be interviewed on their motives, views on PAD and ideas about good end-of-life care for people with dementia. (3) A third part of the study will be directed to the relation between the EL and other statutory arrangements and human right treaties that apply to vulnerable people such as nursing home residents with dementia. This study will consist of a literature review followed by interviews with ethical and legal experts. (4) Findings from the preceding three parts of the study will serve as input for a Delphi study with a panel of ECPs, ethicists and legal experts. The goal of the Delphi study will be to develop consensus regarding the applicability of the due care criteria for lawful PAD in cases of patients with dementia and an AED. Specific attention will be given to the meaning of the “mutatis mutandis” application of the due care criteria.(5) As a final step, the project group will design a concept guideline, to be discussed with experts in the field in an invitational conference. DELIVERABLES Practice guideline for careful handling of euthanasia requests in advance directives of patients with dementia. The findings of the different parts of the study will be published in scientific journals and the whole project will result in a PhD thesis.