Margo Trappenburg

Patient participation in collective healthcare decision making: the Dutch model

Objective  To study whether the Dutch participation model is a good model of participation.

Reconsidering Patient Participation in Guideline Development

Health care has become increasingly patient-centred and medical guidelines are considered to be one of the instruments that contribute towards making it so. We reviewed the literature to identify studies on this subject. Both normative and empirical studies were analysed. Many studies recommend active patient participation in the process of guideline development as the instrument to make guidelines more patient-centred. This is done on the assumption that active patient participation will enhance the quality of the guidelines. We found no empirical evidence, however, to support this assumption. Moreover, the studies show that patients experience several difficulties in the participation process, which cannot solely be traced back to flawed practices. Given this poor track record we conclude that the plea to actively involve patients in the guideline development process should be reconsidered.

Opinions of health care professionals and the public after eight years of euthanasia legislation in the Netherlands: A mixed methods approach

Background: The practice of euthanasia and physician-assisted suicide (PAS) in the Netherlands has been regulated since 2002 by the Euthanasia Act. In the ongoing debate about the interpretation of this Act, comparative information about the opinions of the different stakeholders is needed. Aim: To evaluate the opinions of Dutch physicians, nurses and the general public on the legal requirements for euthanasia and PAS. Design: A cross-sectional survey among Dutch physicians and nurses in primary and secondary care and members of the Dutch general public, followed by qualitative interviews among selected respondents. The participants were: 793 physicians, 1243 nurses and 1960 members of the general public who completed the questionnaire; 83 were interviewed. Results: Most respondents agreed with the requirement of a patient request (64–88%) and the absence of a requirement concerning life expectancy (48–71%). PAS was thought acceptable by 24–39% of respondents for patients requesting it because of mental suffering due to loss of control, chronic depression or early dementia. In the case of severe dementia, one third of physicians, 58% of nurses and 77% of the general public agreed with performing euthanasia based on an advance directive. Interviewees illustrated these findings and supported the Act. Conclusions: Health care professionals and the general public mostly support the legal requirements for euthanasia and PAS. The law permits euthanasia or PAS for mental suffering but this possibility is not widely endorsed. The general public is more liberal towards euthanasia for advanced dementia than health care professionals. We conclude that there is ample support for the law after eight years of legal euthanasia.

Exciting but exhausting: experiences with participatory research with chronically ill adolescents.

Background  Adolescents with chronic conditions are major users of paediatric hospitals, but seldom participate in the evaluation of services or in research. Little is known about the usefulness of the participatory approach in adolescent health research.

Government Influence on Patient Organizations

Patient organizations increasingly play an important role in health care decision-making in Western countries. The Netherlands is one of the countries where this trend has gone furthest. In the literature some problems are identified, such as instrumental use of patient organizations by care providers, health insurers and the pharmaceutical industry. To strengthen the position of patient organizations government funding is often recommended as a solution. In this paper we analyze the ties between Dutch government and Dutch patient organizations to learn more about the effects of such a relationship between government and this part of civil society. Our study is based on official government documents and existing empirical research on patient organizations. We found that government influence on patient organizations has become quite substantial with government influencing the organizational structure of patient organizations, the activities these organizations perform and even their ideology. Financing patient organizations offers the government an important means to hold them accountable. Although the ties between patient organizations and the government enable the former to play a role that can be valued as positive by both parties, we argue that they raise problems as well which warrant a discussion on how much government influence on civil society is acceptable.

Lifestyle Solidarity in the Healthcare System

Encompassing health care systems in modern welfarestates embody several forms of solidarity: between thesick and the healthy, the old and the young andbetween those who take good care of their health onthe one hand and fellow citizens who choose to risktheir lives by smoking or unsafe sex on the other. Thelatter form is called lifestyle solidarity. In theNetherlands this type of solidarity has become theobject of a debate between medical ethicists. Mostmedical ethicist seem to want to uphold lifestylesolidarity. Most Dutch citizens agree with them. TheDutch government, however, embarked on a project tochange the health care system by transferring stateresponsibilities to other actors (employers, insurers,individuals). This changing policy may diminish ordestroy lifestyle solidarity despite the fact that noone intended this to happen.

Voice and choice by delegation

In many Western countries, options for citizens to influence public services are increased to improve the quality of services and democratize decision making. Possibilities to influence are often cast into Albert Hirschmans taxonomy of exit (choice), voice, and loyalty. In this article we identify delegation as an important addition to this framework. Delegation gives individuals the chance to practice exit/choice or voice without all the hard work that is usually involved in these options. Empirical research shows that not many people use their individual options of exit and voice, which could lead to inequality between users and nonusers. We identify delegation as a possible solution to this problem, using Dutch health care as a case study to explore this option. Notwithstanding various advantages, we show that voice and choice by delegation also entail problems of inequality and representativeness.

The relationship between mental health workers and family members

OBJECTIVE To study the relationship between family members and mental health care workers to learn more about the support available to family members of mental health patients. METHODS Eighteen interviews were conducted with family members, seven with professionals and two with patients. Observations were performed at a long-term hospital ward and at family and client council meetings. RESULTS Family members perform an important carer role which greatly affects their lives. They need support from mental health professionals in order to cope. However, communication between mental health care workers and family members is problematic. Family members report a lack of information, consultation and support. CONCLUSION Family members and mental health care workers frame the role of family members in the care process differently. PRACTICE IMPLICATIONS Since the role of family members in the care process can be beneficial for all actors including the mental health patient it is important that mental health professionals acknowledge this and provide support to family members. Considering relatives as fellow carers (reframing their role) could be the way to do this.

News media coverage of euthanasia: a content analysis of Dutch national newspapers

BackgroundThe Netherlands is one of the few countries where euthanasia is legal under strict conditions. This study investigates whether Dutch newspaper articles use the term ‘euthanasia’ according to the legal definition and determines what arguments for and against euthanasia they contain.MethodsWe did an electronic search of seven Dutch national newspapers between January 2009 and May 2010 and conducted a content analysis.ResultsOf the 284 articles containing the term ‘euthanasia’, 24% referred to practices outside the scope of the law, mostly relating to the forgoing of life-prolonging treatments and assistance in suicide by others than physicians. Of the articles with euthanasia as the main topic, 36% described euthanasia in the context of a terminally ill patient, 24% for older persons, 16% for persons with dementia, and 9% for persons with a psychiatric disorder. The most frequent arguments for euthanasia included the importance of self-determination and the fact that euthanasia contributes to a good death. The most frequent arguments opposing euthanasia were that suffering should instead be alleviated by better care, that providing euthanasia can be disturbing, and that society should protect the vulnerable.ConclusionsOf the newspaper articles, 24% uses the term ‘euthanasia’ for practices that are outside the scope of the euthanasia law. Typically, the more unusual cases are discussed. This might lead to misunderstandings between citizens and physicians. Despite the Dutch legalisation of euthanasia, the debate about its acceptability and boundaries is ongoing and both sides of the debate are clearly represented.

Fighting Sectional Interests in Health Care

In the 1970s policy making in the Netherlands took place in sectoral networks, consisting of professional interest groups and like minded civil servants, advisory councils, mp’s and departmental ministers. In this article the author examines whether such a sectoral policy network still exists in Dutch health care by comparing past and present data on the background of civil servants, mp’s and departmental ministers. Next she describes the political fight against the health care sectoral network, which has gone on for decades. She concludes that the health care sectoral network has been severely weakened, although it remains to be seen whether this will lead to a substantial reduction of health care costs, which was one of the main reasons why politicians fought against sectoral interests in the first place.