Family members do not have an official position in the practice of euthanasia and physician assisted suicide in the Netherlands according to statutory regulations and related guidelines. However, recent empirical findings on the influence of family members on EAS decision-making raise practical and ethical questions. Therefore, the aim of this review is to explore how family members are involved in the Dutch practice of EAS according to empirical research, and to map out themes that could serve as a starting point (...) for further empirical and ethical inquiry. A systematic mixed studies review was performed. The databases Pubmed, Embase, PsycInfo, and Emcare were searched to identify empirical studies describing any aspect of the involvement of family members before, during and after EAS in the Netherlands from 1980 till 2018. Thematic analysis was chosen as method to synthesize the quantitative and qualitative studies. Sixty-six studies were identified. Only 14 studies had family members themselves as study participants. Four themes emerged from the thematic analysis. 1) Family-related reasons to request EAS. 2) Roles and responsibilities of family members during EAS decision-making and performance. 3) Families’ experiences and grief after EAS. 4) Family and ‘the good euthanasia death’ according to Dutch physicians. Family members seem to be active participants in EAS decision-making, which goes hand in hand with ambivalent feelings and experiences. Considerations about family members and the social context appear to be very important for patients and physicians when they request or grant a request for EAS. Although further empirical research is needed to assess the depth and generalizability of the results, this review provides a new perspective on EAS decision-making and challenges the Dutch ethical-legal framework of EAS. Euthanasia decision-making is typically framed in the patient-physician dyad, while a patient-physician-family triad seems more appropriate to describe what happens in clinical practice. This perspective raises questions about the interpretation of autonomy, the origins of suffering underlying requests for EAS, and the responsibilities of physicians during EAS decision-making. (shrink)

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. (shrink)

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. (shrink)

All articles in May 2019’s special issue of Bioethics offer profound insights into the issue of “being a burden to others” in relation to wishes to die, which are highly relevant for ethical debates about end‐of‐life care and physician‐assisted dying. In this reply, we wish to stress the importance of acknowledging and analyzing the sociopolitical context of the phenomenon “being a burden” in relation to wishes to die and we will show how this analysis could benefit from a care ethical (...) approach. As discussions in care ethics have made clear, caring practices are both social and political practices. An empirical and ethical analysis of “being a burden” therefore needs to take institutional and societal norms and structures into account, in addition to first‐person experiences and concepts such as caring needs, relational autonomy, and interdependency. Besides the relevance of the sociopolitical context for the phenomenon “being a burden” as such, the sociopolitical context also seems relevant for the investigation of the phenomenon, which we will illustrate by reflecting on “being a burden” in relation to the practice of physician‐assisted dying in the Netherlands. (shrink)

In this article I will argue that there are two theories of distributive justice hidden in Walzer's Spheres of Justice. The first one emphasises the separation of distributive spheres. It tries to formulate distributive criteria by sticking faithfully to sphere‐specificity. I shall refer to this theory as ‘pure pluralism’. The second theory downplays the separation of spheres and emphasises ‘across spheres’ or ‘between spheres’ criteria instead. I shall call this theory ‘mitigated pluralism’. Mitigated pluralism has become popular among Walzer's friendly (...) critics who apparently do not want to charge him with a distributive theory as clear and rigid as pure pluralism. Although I consider myself another friendly critic, I shall argue in favour of pure pluralism. (shrink)

Jacobson finds two distinct meanings of “dignity” in the literature on dignity and health: intrinsic human dignity and social dignity constituted through interactions with caregivers. Especially the latter has been central in empirical health research and warrants further exploration. This article focuses on the social dignity of people marginalized by mental illness, substance abuse and comparable conditions in extramural settings. 35 studies published between 2007 and 2017 have addressed this issue, most of them identifying norms for social dignity: civilized interactions, (...) non-stigmatizing treatment, treatment as unique individuals, being taken seriously, maintaining a positive identity, experiencing independence, relating to others, and participating in daily life. We argue that these norms belong to ideal theory, whereas we agree with Robeyns and others that improving practice is better served by non-ideal theory. Towards this end, we derive from the literature four building blocks for a non-ideal theory of dignity: avoid violations of dignity rather than seeking to promote it; dignity is not a goal to be reached; it requires ongoing effort; promoting dignity is a balancing act; contradictory norms can make it impossible to realize; and dignity can be undermined by organizational and discursive constraints. (shrink)

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. (shrink)

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. (shrink)

Traditional welfare states were based on passive solidarity. Able bodied, healthy minded citizens paid taxes and social premiums, usually according to a progressive taxation logic following the ability to pay principle. Elderly, fragile, weak, unhealthy and disabled citizens were taken care of in institutions, usually in quiet parts of the country. During the nineteen eighties and nineties of the twentieth century, ideas changed. Professionals, patients and policy makers felt that it would be better for the weak and fragile to live (...) in mainstream society, rather than be taken care of in institutions outside society. This might be cheaper too. Hence policy measures were taken to accomplish deinstitutionalization. This article discusses the implications of deinstitutionalization for distributive justice. It is argued that the weakest among the weak and fragile stand to lose from this operation. For able bodied citizens deinstitutionalization entails a move from passive to active solidarity. Rather than just pay taxes they have to actively care for and help the needy themselves. The move from passive to active solidarity tends to take advantage of benevolent citizens and burden the socioeconomically disadvantaged. This may be a reason to reconsider the policy move toward deinstitutionalization. (shrink)

Part of the debate on cost containment in healthcare systems may be characterized as applied political philosophy One might say that the current debate between competing theories of justice that started with Rawls' A Theory of Justice in 1971 has acquired a small sister debate in healthcare philosophy Major participants in the debate on social justice have become an important source of inspiration for bioethicists interested in a just distribution of healthcare resources. Thus Rawls' A Theory of Justice has been (...) remodeled for healthcare philosophy by Norman Daniels. Nozick's libertarian manifesto Anarchy, State, and Utopia has been used for bioethical purposes by H.T. Engelhardt. The books of Daniel Callahan evidently belong to a family of communitarian theories, though Callahan cannot be said to follow one or another communitarian thinker in particular. In the next two sections of this article I will give a very brief sketch of the debate on social justice in political philosophy and then discuss the sister debate on social justice in healthcare. (shrink)

Society in the 21st century is in many ways different from society in the 1950s, the 1960s or the 1970s. Two of the most important changes relate to the level of education in the population and the balance between work and private life. These days a large percentage of people are highly educated. Partly as a result of economic progress in the 1950s and the 1960s and partly due to the fact that many women entered the labour force, people started (...) searching for ways to combine their career with family obligations and a private life (including hobbies, outings and holidays). Medical professional ethics, more specifically: professional attitudes towards patients and colleagues, is influenced by developments such as these, but how much and in what way? It was assumed that surgery ethics would be more robust, resistant to change and that general practitioner (GP) ethics would change more readily in response to a changing society, because surgeons perform technical work in operating theatres in hospitals whereas GPs have their offices in the midst of society. The journals of Dutch surgeons and GPs from the 1950s onwards were studied so as to detect traces of change in medical professional ethics in The Netherlands. GP ethics turned out to be malleable compared with surgery ethics. In fact, GP medicine proved to be an agent of change rather than merely responding to it, both with regard to the changing role of patients and with regard to the changing work life balance. (shrink)

Part of the debate on cost containment in healthcare systems may be characterized as applied political philosophy One might say that the current debate between competing theories of justice that started with Rawls'A Theory of Justicein 1971 has acquired a small sister debate in healthcare philosophy Major participants in the debate on social justice have become an important source of inspiration for bioethicists interested in a just distribution of healthcare resources. Thus Rawls'A Theory of Justicehas been remodeled for healthcare philosophy (...) by Norman Daniels. Nozick's libertarian manifestoAnarchy, State, and Utopiahas been used for bioethical purposes by H.T. Engelhardt. The books of Daniel Callahan evidently belong to a family of communitarian theories, though Callahan cannot be said to follow one or another communitarian thinker (be it Christopher Lasch, Alisdair Maclntyre, or Amitai Etzioni) in particular. In the next two sections of this article I will give a very brief sketch of the debate on social justice in political philosophy and then discuss the sister debate on social justice in healthcare. (shrink)

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, MPs 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. (shrink)

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. (shrink)

To explore whether market reforms in a health care system affect medical professional ethics of hospital-based specialists on the one hand and physicians in independent practices on the other. Qualitative interviews with 27 surgeons and 28 general practitioners in The Netherlands, held 2–3 years after a major overhaul of the Dutch health care system involving several market reforms. Surgeons now regularly advertise their work (while this was forbidden in the past) and pay more attention to patients with relatively minor afflictions, (...) thus deviating from codes of ethics that oblige physicians to treat each other as brothers and to treat patients according to medical need. Dutch GPs have abandoned their traditional reticence and their fear of medicalization. They now seem to treat more in accordance with patients’ preferences and less in accordance with medical need. Market reforms do affect medical professional principles, and it is doubtful whether these changes were intended when Dutch policy makers decided to introduce market elements in the health care system. Policy makers in other countries considering similar reforms should pay attention to these results. (shrink)