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Voortgangsverslag

Samenvatting
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Onder artsen bestaat terughoudendheid over euthanasie bij wilsonbekwame patiënten met dementie op basis van een schriftelijke euthanasieverklaring. Een van de redenen hiervoor is dat de situatie van gevorderde dementie de mogelijkheid tot betekenisvolle communicatie en gezamenlijke besluitvorming beperkt, terwijl artsen dit juist als noodzakelijk ervaren. Dit heeft geleid tot een groeiende behoefte aan houvast hoe om te gaan met dit dilemma. Dit onderzoek beoogt in die behoefte aan houvast te voorzien.

Er wordt gebruik gemaakt van een combinatie van diverse onderzoeksmethoden, waaronder vragenlijstonderzoek, interviews, een literatuurstudie van de juridische, rechtstheoretische en ethische literatuur en een Delphi-studie naar de toepasbaarheid van de zorgvuldigheidsvoorwaarden bij wilsonbekwame patiënten met dementie. De doelstelling van het onderzoek is een handreiking voor het zorgvuldig omgaan met euthanasieverklaringen van wilsonbekwame patiënten met dementie.

Resultaten
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De vragenlijst onder artsen (specialisten ouderengeneeskunde en artsen in opleiding hiertoe, artsen werkzaam bij de levenseindekliniek, en SCEN artsen) is afgerond. Resultaten worden geanalyseerd. De kwalitatieve interviews onder artsen die de petitie 'niet stiekem bij dementie' hebben getekend zijn eveneens afgerond en een publicatie hierover is in voorbereiding.

Over de achtergronden en de opzet van het onderzoek zij twee Nederlandstalige artikelen gepubliceerd: één in het Tijdschrift voor Ouderengeneeskunde en één in Huisarts & Wetenschap.

Samenvatting van de aanvraag

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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.

 

 

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