Development and dissemination of institutional practice guidelines on medical end-of-life decisions in Dutch health care institutions

Abstract

Objectives

To describe how Dutch healthcare institutions develop and disseminate institutional practice guidelines on medical end-of-life decisions and policy statements on euthanasia and physician-assisted suicide (EAS) to relevant parties, and to describe supportiveness of EAS guidelines experienced by Dutch physicians.

Methods

Questionnaires to all Dutch health care institutions in 2005. Questionnaire to sample of Dutch clinical specialists and nursing home physicians.

Results

In most health care institutions, physicians (79%), ethics committees (79%), board of directors (64%) and nurses (61%) were involved in the development of guidelines. The Euthanasia Act and national guidelines were the most frequently reported sources for the development (73% and 71%, respectively). Not all institutions disseminated their written EAS policy statements and practice guidelines on medical end-of-life decisions to all relevant parties. Dutch physicians who reported the presence of a written guideline for EAS in their institution, felt supported by it in their decision-making after a patient's request for EAS.

Conclusions

It is recommended that more health care institutions pay attention to the dissemination of their policy statements and practice guidelines to relevant parties. This will only lead to improvement in medical practice if this is accompanied by efforts to also stimulate the use of guidelines in practice.

Introduction

Medical end-of-life decisions require careful decision-making and physicians do not always have very much experience in this respect. Therefore, practice guidelines on medical end-of-life decisions can help to improve the quality of care for the dying. They can improve the consistency of patient care by making recommendations for the treatment and care that is provided for patients, and can support health care professionals in the decision-making process [1]. It is also desirable that health care institutions in the countries and states in which euthanasia and assisted suicide (EAS) is allowed formulate a written statement, providing clarity to professionals and patients as to whether or not EAS is allowed in the specific institution.

In 2005, 85% of all Dutch health care institutions had a policy statement regarding EAS (of which 70% in writing and 15% verbal), and two thirds of all Dutch health care institutions had EAS practice guidelines, especially hospitals (83%) and nursing homes (78%). One quarter to one-third of the institutions had practice guidelines for intensified alleviation of symptoms and withholding/withdrawing life-prolonging treatments. In general, the number of institutions with practice guidelines for medical end-of-life decisions had increased in 2005 compared to 1994 [2], [3]. Also in Belgium, in 2004, the majority of Flemish Catholic hospitals (79%) had a written ethics policy on EAS, but only 30% of the Flemish Catholic nursing homes had such a policy [4]. Taking all (Catholic and other) Flemish nursing homes into account, the percentage of nursing homes with a written ethics policy on EAS was only 15% in 2006 [5].

To encourage the use of practice guidelines, physicians and nurses must be aware of both the existence and the content of the guidelines. Research showed that the most effective guidelines are developed by those who are going to use them [6], [7]. Therefore, one way to improve knowledge about and acceptance of institutional guidelines might be involving physicians and other relevant persons in the development of these guidelines. Besides that, other strategies for dissemination are important too. The dissemination of written EAS policy statements was investigated at institutional level in Dutch and Catholic Flemish hospitals and nursing homes in 1994 and 2004, respectively [3], [4]. The results of these studies showed that the majority of Dutch and Catholic Flemish hospitals and nursing homes systematically disseminated their written EAS policy statements to physicians and nurses (between 67% and 94%). These studies also looked at dissemination of EAS policies to patients, and it appeared that patients in both countries were much fewer informed than physicians and nurses, especially in hospitals; 4% of Dutch hospitals and 3% of Flemish Catholic hospitals systematically disseminated their written EAS policy statement to patients, and 31% of Dutch nursing homes and 57% of Flemish Catholic nursing homes systematically informed patients about these policies [3], [4].

No recent information is available about the development and dissemination of written EAS policy statements and institutional practice guidelines on medical end-of-life decisions in Dutch health care institutions, even though there have been many changes in the field of medical end-of-life decisions in the Netherlands. In 2002 the Euthanasia Act came into effect [8] and the increased attention being paid to palliative sedation, which resulted in a national guideline on palliative sedation [9], [10].

Therefore the major aims of this study were to describe (1) the professionals and sources involved in the development and revision of institutional guidelines on medical end-of-life decisions in Dutch health care institutions and (2) the dissemination of written EAS policy statements to all relevant parties and the dissemination of institutional practice guidelines on medical end-of-life decisions to physicians and nurses. The following institutional practice guidelines on medical end-of-life decisions were considered: euthanasia and physician-assisted suicide (EAS), palliative sedation, alleviation of symptoms with a possible life-shortening effect, do-not-resuscitate (DNR) decisions, and withdrawing or withholding treatment on medical grounds, taking into account that this could possibly lead to hastening death. Finally, the supportiveness of EAS guidelines experienced by Dutch physicians in decision-making when there is a request for EAS was investigated, to get information about the importance of developing and disseminating these guidelines to physicians.