Assisted dying is a divisive and controversial topic and it is therefore desirable that a broad range of interests inform any proposed policy changes. The purpose of this study is to collect and synthesize the views of an important stakeholder group—namely people with disabilities —as expressed by disability rights organisations in Great Britain. Parliamentary consultations were reviewed, together with an examination of the contemporary positions of a wide range of DROs. Our analysis revealed that the vast majority do not have (...) a clear public stance; those that do exhibit a significant diversity of opinion. DROs opposing legislation on assisted dying have argued that it would be premature, misguided, inequitable and culturally undesirable. Some specify conditions that would have to be satisfied before they could support legalisation, such as radical improvements in health and social care services and the elimination of discrimination against PwD. DROs supporting assisted dying maintain that a change in the law would promote autonomy, end intense suffering, can be delivered safely and is supported by the DRO’s membership. The discussion considers the reasons why several DROs adopt a neutral stance and the argument is made that, whatever their overarching stance on the issue, DROs need to be involved in the policy debate so that the crucial perspectives of PwD are heard and addressed. This is an important message for countries around the world that permit, or are considering legalising, assisted dying. (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)

Objectives Potentially life-shortening medical end-of-life practices ) remain subject to conceptual vagueness. This study evaluates how physicians label these practices by examining which of their own practices they label as euthanasia or sedation.Methods We conducted a large stratified random sample of death certificates from 2007 . The physicians named on the death certificate were approached by means of a postal questionnaire asking about ELDs made in each case and asked to choose the most appropriate label to describe the ELD. Response (...) rate was 58.4%.Results In the vast majority of practices labelled as euthanasia, the self-reported actions of the physicians corresponded with the definition in the Belgian euthanasia legislation; practices labelled as palliative or terminal sedation lack clear correspondence with definitions of sedation as presented in existing guidelines. In these cases, an explicit life-shortening intention by means of drug administration was present in 21.6%, life shortening was estimated at more than 24 h in 51% and an explicit patient request was absent in 79.7%.Discussion Our results suggest that, unlike euthanasia, the concept of palliative or terminal sedation covers a broad range of practices in the minds of physicians. This ambiguity can be a barrier to appropriate sedation practice and indicates a need for better knowledge of the practice of palliative sedation by physicians. (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...

Objectives To examine the frequency and characteristics of decisions to forgo artificial nutrition and/or hydration at the end of life.Design Postal questionnaire survey regarding end-of-life decisions to physicians certifying a large representative sample of Belgian death certificates in 2007.Setting Flanders, Belgium, 2007.Participants Treating physicians of deceased patients.Results Response rate was 58.4%. A decision to forgo ANH occurred in 6.6% of all deaths . Being female, dying in a care home or hospital and suffering from nervous system diseases or malignancies were (...) the most important patient-related factors positively associated with a decision to forgo ANH. Physicians indicated that the decision to forgo ANH had had some life-shortening effects in 77% of cases. There had been no consultation with the patient in 81%, mostly due to incapacity . The family, colleague physicians and nurses were involved in decision making in 76%, 41% and 62%, respectively.Conclusions A substantial number of deaths are preceded by a decision to forgo ANH in Belgium. These decisions, ethically laden and involving a considerable chance of life shortening, are mostly not preceded by discussion with the patient despite existing patient rights legislation. It is recommended that physicians and patients and their families alike dedicate ample time to the discussion of treatment options and communication about the possibility of forgoing ANH and that this discussion takes place earlier as part of overall end-of-life care planning rather than at the very end of life. (shrink)