The main premise of the Royal Dutch Medical Association's (RDMA) guideline on palliative sedation is that palliative sedation, contrary to euthanasia, is normal medical practice. Although we do not deny the ethical distinctions between euthanasia and palliative sedation, we will critically analyse the guideline's argumentation strategy with which euthanasia is demarcated from palliative sedation. First, we will analyse the guideline's main premise, which entails that palliative sedation is normal medical treatment. After this, we will critically discuss three crucial propositions of (...) the guideline that are used to support this premise: (1) the patient's life expectancy should not exceed 2 weeks; (2) the aim of the physician should be to relieve suffering and (3) expert consultation is optional. We will conclude that, if inherent problematic aspects of palliative sedation are taken seriously, palliative sedation is less normal than it is now depicted in the guideline. (shrink)

Volume 20, Issue 8, August 2020, Page 104-106.

It is unclear what proper remuneration for surrogacy is, since countries disagree and both commercial and altruistic surrogacy have ethical drawbacks. In the presence of cross-border surrogacy, these ethical drawbacks are exacerbated. In this article, we explore what would be ethical remuneration for surrogacy, and suggest regulations for how to ensure this in the international context. A normative ethical analysis of commercial surrogacy is conducted. Various arguments against commercial surrogacy are explored, such as exploitation and commodification of surrogates, reproductive capacities, (...) and the child. We argue that, although commodification and exploitation can occur, these problems are not specific to surrogacy but should be understood in the broader context of an unequal world. Moreover, at least some of these arguments are based on symbolic rhetoric or they lack knowledge of real-world experiences. In line with this critique we argue that commercial surrogacy can be justified, but how and under what circumstances depends on the context. Surrogates should be paid a sufficient amount and regulations should be in order. In this article, the Netherlands and India are case examples of contexts that differ in many respects. In both contexts, surrogacy can be seen as a legitimate form of work, which requires the same wage and safety standards as other forms of labor. Payments for surrogacy need to be high enough to avoid exploitation by underpayment, which can be established by the mechanisms of either minimum wage, or Fair-Trade guidelines. An international treaty governing commercial surrogacy should be in place, and local professional bodies to protect the interests of surrogates should be required. Commercial surrogacy should be permitted across the globe, which would also reduce the need for intended parents to seek surrogacy services abroad. (shrink)

The aim of this research was to gain insight into the experiences and perspectives of individual members of a Medical Research Ethics Committee regarding their individual roles and possible tensions within and between these roles. We conducted a qualitative interview study among members of a large MREC, supplemented by a focus group meeting. Respondents distinguish five roles: protector, facilitator, educator, advisor and assessor. Central to the role of protector is securing valid informed consent and a proper risk-benefit analysis. The role (...) of facilitator implies that respondents want to think along with and assist researchers in order to help medical science progress. As educators, the respondents want to raise ethical and methodological awareness of researchers. The role of advisor implies that respondents bring in their own expertise. The role of assessor points to contributing to the overall evaluation of the research proposal. Various tensions were identified within and between roles. Within the role of protector, a tension is experienced between paternalism and autonomy. Between the role of protector and facilitator tensions occur when the value of a study is questioned while risks and burdens for the subjects are negligible. Within the role of assessor, a tension is felt between the implicit nature of judgments and the need for more explicit formulations. Awareness of various roles and responsibilities may prevent one-sided views on MREC work, not only by members themselves, but also by researchers. Tensions within and between the roles require reflection by MREC members. (shrink)

The aim of this research was to gain insight into the experiences and perspectives of individual members of a Medical Research Ethics Committee regarding their individual roles and possible tensions within and between these roles. We conducted a qualitative interview study among members of a large MREC, supplemented by a focus group meeting. Respondents distinguish five roles: protector, facilitator, educator, advisor and assessor. Central to the role of protector is securing valid informed consent and a proper risk-benefit analysis. The role (...) of facilitator implies that respondents want to think along with and assist researchers in order to help medical science progress. As educators, the respondents want to raise ethical and methodological awareness of researchers. The role of advisor implies that respondents bring in their own expertise. The role of assessor points to contributing to the overall evaluation of the research proposal. Various tensions were identified within and between roles. Within the role of protector, a tension is experienced between paternalism and autonomy. Between the role of protector and facilitator tensions occur when the value of a study is questioned while risks and burdens for the subjects are negligible. Within the role of assessor, a tension is felt between the implicit nature of judgments and the need for more explicit formulations. Awareness of various roles and responsibilities may prevent one-sided views on MREC work, not only by members themselves, but also by researchers. Tensions within and between the roles require reflection by MREC members. (shrink)

This contribution is a report of a two months' participant observation in a Dutch hospice. The goal of the observation was to gain an overview of moral decisions in a hospice in which euthanasia, a tolerated practice in the Netherlands, is not accepted as an option. In an introduction, the development of palliative care in the Netherlands will be briefly presented. Subsequently, various moral decisions that were taken during the participant observation are presented and analysed by means of case reports. (...) Attention is especially drawn to decisions that directly or indirectly relate to euthanasia. These moral decisions will be clarified in the light of the philosophy behind the concept of palliative care as it has evolved since the foundation of St Christopher's Hospice, London in 1967. (shrink)

If a hereditary predisposition to colorectal cancer or breast cancer is diagnosed, most guidelines state that clinical geneticists should request index patients to inform their at-risk relatives about the existence of this condition in their family, thus enabling them to consider presymptomatic genetic testing. Those identified as mutation carriers can undertake strategies to reduce their risk of developing the disease or to facilitate early diagnosis. This procedure of informing relatives through the index patient has been criticised, as it results in (...) relatively few requests for genetic testing, conceivably because a certain number of relatives remain uninformed. This pilot study explored attitudes toward informing family members and relevant practices among clinical geneticists. In general, clinical geneticists consider it to be in the interests of family members to be informed and acknowledge that this goal is not accomplished by current procedures. The reasons given for maintaining present practices despite this include clinical ‘mores’, uncertainty about the legal right of doctors to inform family members themselves, and, importantly, a lack of resources. We discuss these reasons from an ethical point of view and conclude that they are partly uninformed and inconsistent. If informing relatives is considered to be in their best interests, clinical geneticists should consider informing relatives themselves. In the common situation in which index patients do not object to informing relatives, no legal obstacles prevent geneticists from doing so. An evaluation of these findings among professionals may lead to a more active approach in clinical practice. (shrink)

Within a period of one year, two countries have enacted laws that articulate conditions under which euthanasia and physician assisted suicide are permitted. Belgium and the Netherlands thus distinguish themselves from all other countries of the world.In Belgium, palliative care organisations have been pro-actively involved in the debate on the contents of the law, highlighting that if euthanasia can ever be justified, it is necessary to provide good palliative care for all and to include in the euthanasia law what has (...) been called a palliative filter, i.e. a compulsory prior consultation with a specialised palliative care team. In the Netherlands, before the euthanasia law was enacted, there had been a policy of pragmatic tolerance for decades. The enactment itself did not give rise to intense debate. It can be questioned whether the new law would change anything at all since it only officially sanctioned an existing practice. This however does not mean that caregivers in palliative care, together with palliative care organisations, have not participated in the euthanasia debate.In the first part of this article the input of palliative care organisations in the Dutch euthanasia debate is described and explained by situating it in its broader context. First opinions on euthanasia of a variety of palliative care organisations are described. Secondly the Dutch debate on palliative care and euthanasia is analysed and evaluated. In a second part of this article a brief introduction to Belgian palliative care is given. This introduction is followed by an overview of the way organised palliative care has been active in the Belgian euthanasia debate. Attention too is given to the Belgian discussion on palliative sedation, sedation being presented by some as the palliative alternative to euthanasia but seen by others as nothing but euthanasia in disguise. (shrink)

Continuous sedation is increasingly used as a way to relieve symptoms at the end of life. Current research indicates that some physicians, nurses, and relatives involved in this practice experience emotional and/or moral distress. This study aims to provide insight into what may influence how professional and/or family carers cope with such distress.

This article discusses the latest developments regarding euthanasia and palliative care in the Netherlands. On the one hand, a legally codified practice of euthanasia has been established. On the other hand, there has been a strong development of palliative care. The combination of these simultaneous processes seems to be rather unique. This contribution first focuses on these remarkable developments. Subsequently, the analysis concentrates on the question of how these new developments have influenced the ethical debate.

Dutch euthanasia and physician-assisted suicide stand on the eve of important legal changes. In the summer of 1999, a new government bill concerning euthanasia and physician-assisted suicide was sent to Parliament for discussion. This bill legally embodies a ground for exemption from punishment for physicians who conduct euthanasia or physician-assisted suicide and comply with certain requirements. On November 28, 2000, the Dutch parliament approved an adapted version of this bill. Since the approval by the Dutch Senate can be regarded as (...) a formality, it is expected that the bill will come into force in the course of this year (2001). In this paper we discuss these new developments. (shrink)

ABSTRACTThe massive influx of refugees into Europe in the past few years has given rise to different kinds of challenges among which is the challenge to successfully communicate with newly arrived immigrants. In this article, we will focus on the public service provision sector where quality of service is to a large extent determined by the capability of a service provider and his or her “client” to understand one another. The article centres on a study involving public organisations providing asylum (...) services or healthcare services in the multilingual and multicultural city of Brussels. Several interviews were conducted to gain insight into the communication problems such organisations face, as well as their communication requirements and solutions when providing services to people of different linguistic and cultural backgrounds. We will focus on the types of bridging functions commonly deployed by these organisations in multilingual service encounters and on the motivations for using them. In a... (shrink)