The objective of this paper is to understand from a sociological perspective how the moral question of euthanasia, framed as the “right to die”, emerges and is dealt with in society. It takes France and Germany as case studies, two countries in which euthanasia is prohibited and which have similar legislation on the issue. I presuppose that, and explore how, each society has its own specificities in terms of practical, social and political norms that affect the ways in which they (...) deal with these issues. The paper thus seeks to understand how requests for the “right to die” emerge in each society, through both the debate (analysis of daily newspapers, medical and philosophical literature, legal texts) and the practices (ethnographic work in three French and two German hospitals) that elucidate the phenomenon. It does so, however, without attempting to solve the moral question of euthanasia. In spite of the differences observed between these two countries, the central issue at stake in their respective debates is the question of the individual’s autonomy to choose the conditions in which he or she wishes to die; these conditions depend, amongst others, on the doctor-patient relationship, the organisation of end-of-life care in hospital settings, and more generally, on the way autonomy is defined and handled in the public debate. (shrink)

Continuous deep sedation at the end of life is a practice that has been the topic of considerable ethical debate, for example surrounding its perceived similarity or dissimilarity with physician-assisted dying. The practice is generally considered to be legal as a form of symptom control, although this is mostly only assumed. France has passed an amendment to the Public Health Act that would grant certain terminally ill patients an explicit right to continuous deep sedation until they pass away. Such a (...) framework would be unique in the world. In this paper we will highlight and reflect on four relevant aspects and shortcomings of the proposed bill. First, that the bill suggests that continuous deeps sedation should be considered as a sui generis practice. Second, that it requires that sedation should always be accompanied by the withholding of all artificial nutrition and hydration. In the most recently amended version of the legal proposal it is stated that life sustaining treatments are withheld unless the patient objects. Third, that the French bill would not require that the suffering for which continuous deep sedation is initiated is unbearable. Fourth, the question as to whether the proposal should be considered as a way to avoid having to decriminalise euthanasia and/or PAS or, on the contrary, as a veiled way to decriminalise these practices. The French proposal to amend the Public Health Act to include a right to continuous deep sedation for some patients is a unique opportunity to clarify the legality of continuous deep sedation as an end-of-life practice. Moreover, it would recognize that the practice of continuous deep sedation raises ethical and legal issues that are different from those raised by symptom control on the one hand and assisted dying on the other hand. Nevertheless, there are still various issues of significant ethical concern in the French legislative proposal. (shrink)

Slow euthanasia or a good palliative intervention?There are many ways in which doctors influence the circumstances and/or the timing of a patient’s death. Some of these are accepted as normal medical practice—for instance, when a disproportional treatment is forgone, others are considered tolerable only under strict conditions or even intolerable, such as non-voluntary active euthanasia. A relatively new phenomenon in the ethical discussion on end-of-life decisions is terminal sedation. Terminal sedation is used in patients with terminal illnesses where normal medical (...) treatments cannot relieve severe symptoms such as pain and agitation, and no option is left but to take away the perception of these symptoms. Often, the decision to start terminal sedation is accompanied by the decision to forgo the provision of artificial nutrition and hydration in these patients. In The Netherlands, terminal sedation was estimated to be applied in 4–10% of all deaths in 2001.1 The combination of these two decisions have made the moral status of terminal sedation the subject of fierce ethical debates. Is it slow euthanasia2,3 or is it a good palliative intervention that should be sharply distinguished from euthanasia?4,5 One of the characteristics of this debate is that it is a very confused one: people disagree about the meaning of the term, the appropriateness of it and, of course, about the conditions under which it would be morally justified. As a matter of fact, these three discussions are deeply connected: as is often the case, a discussion about terms is a discussion about norms in disguise.The first observation to be made is that many seemingly descriptive definitions of terminal sedation contain normative claims. Examples of this are definitions of terminal sedation in which only …. (shrink)