Advance Directives for Euthanasia in Dementia

How Do They Affect Resident Care in Dutch Nursing Homes? Experiences of Physicians and Relatives

Marike E. de Boer, MSc; Rose-Marie Dröes, PhD; Cees Jonker, PhD, MD; Jan A. Eefsting, PhD, MD; Cees M.P.M. Hertogh, PhD, MD

Disclosures

J Am Geriatr Soc. 2011;59(6):989-996. 

In This Article

Abstract and Introduction

Abstract

Objectives: To gain insight into how advance directives for euthanasia affect resident care in Dutch nursing homes.
Design: Survey of elderly care physicians and additional qualitative interviews with a selection of elderly care physicians and relatives of people with dementia who had an advance directive for euthanasia.
Setting: Dutch nursing home practice.
Participants: Four hundred thirty-four elderly care physicians completed the general part of the questionnaire; 110 physicians provided case histories. Interviews were conducted with 11 physicians and eight relatives.
Measurements: The questionnaire contained general questions about the incidence of advance directives for euthanasia in people with dementia. A second part involved questions about the most recent case of a person with dementia and an advance directive for euthanasia who had died. The interviews with elderly care physicians and relatives focused on further exploration of the decision-making process regarding adherence to the advance directive for euthanasia.
Results: Despite law-based possibilities, advance directives for euthanasia of people with dementia were rarely adhered to, although they seem to have a supportive role in setting limitations on life-sustaining treatments. Elderly care physicians and relatives were found to be reluctant to adhere to advance directives for euthanasia. Not being able to engage in meaningful communication played a crucial role in this reluctance.
Conclusion: Advance directives for euthanasia are never adhered to in the Netherlands in the case of people with advanced dementia, and their role in advance care planning and end-of-life care of people with advanced dementia is limited. Communication with the patient is essential for elderly care physicians to consider adherence to an advance directive for euthanasia of a person with dementia.

Introduction

Advance directives are developed as a way of allowing people to state their preferences for future care and how medical decisions are to be made should they become incompetent in the future. Several countries legally recognize the most common form of advance directive (nontreatment directives or living wills).[1] In the Netherlands, advance directives for euthanasia are also legally recognized as part of the euthanasia law enacted in 2002 (Termination of Life on Request and Assisted Suicide Act 2002).[2] According to this act, euthanasia and assisted suicide (EAS) still fall under the penal code, but physicians will not be prosecuted if they follow the specifically defined due care requirements (Table 1) and report cases to a regional review committee.

According to this euthanasia legislation, an advance directive can replace an oral request in case of incompetence (Table 1: Requirement 1), meaning that physicians may perform euthanasia following an advance directive as long as the remaining requirements (Requirements 2–6) of due care are met "in a corresponding way." In principle, this new law opened the door for adherence to the advance directives for euthanasia of incompetent people, such as people with dementia, but euthanasia is not standard medical practice, and other than in cases of nontreatment directives, physicians are not obliged to adhere to advance directives for euthanasia, nor do they have a moral duty to facilitate the transfer of patients to another physician in case of nonadherence. Before the enactment of the law, advance directives for euthanasia were rarely adhered to,[3] so the question is whether this new legislation has led to changes in practice.

In the Netherlands, approximately 90% of all people with dementia are admitted to a nursing home in the advanced stages of their disease and die there.[4] Having their principal site of practice in nursing homes, elderly care physicians, formerly called nursing home physicians, are the doctors most likely to be confronted with advance directives for euthanasia of people with dementia.

Data on the experiences of physicians with advance directives for euthanasia of people with dementia in nursing home practice is limited, and to the knowledge of the authors, no data exist on the experiences of relatives of these people and their involvement in the decision-making process regarding adherence to advance directives for euthanasia.

Therefore, this study aimed at gaining insight into the way advance directives for euthanasia of people with dementia affect resident care in nursing homes and at identifying any changes regarding this issue since the introduction of the new euthanasia law by comparing the results with data from previous research.[3] The research highlights experiences of elderly care physicians and of relatives of people with dementia who had an advance directive for euthanasia.

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