Kasper Raus

Is Continuous Sedation at the End of Life an Ethically Preferable Alternative to Physician-Assisted Suicide?

The relatively new practice of continuous sedation at the end of life (CS) is increasingly being debated in the clinical and ethical literature. This practice received much attention when a U.S. Supreme Court ruling noted that the availability of CS made legalization of physician-assisted suicide (PAS) unnecessary, as CS could alleviate even the most severe suffering. This view has been widely adopted. In this article, we perform an in-depth analysis of four versions of this “argument of preferable alternative.” Our goal is to determine the extent to which CS can be considered to be an alternative to PAS and to identify the grounds, if any, on which CS may be ethically preferable to PAS.

Similarities and differences between continuous sedation until death and euthanasia - professional caregivers' attitudes and experiences: A focus group study

Background: According to various guidelines about continuous sedation until death, this practice can and should be clearly distinguished from euthanasia, which is legalized in Belgium. Aim: To explore professional caregivers’ perceptions of the similarities and differences between continuous sedation until death and euthanasia. Design: Qualitative data were gathered through focus groups. Questions pertained to participants’ perceptions of continuous sedation. The focus groups were recorded and transcribed verbatim. Analyses were conducted by a multidisciplinary research team using constant comparison analyses. Setting/Participants: We did four focus groups at Ghent University Hospital: two with physicians (n = 4 and n = 4) and two with nurses (n = 4 and n = 9). The participants could participate if they were ever involved in the use of continuous sedation until death. Results: Although the differences and similarities between continuous sedation until death and euthanasia were not specifically addressed in the questions addressed in the focus groups, it emerged as an important theme in the participants’ accounts. Many caregivers elaborated on the differences between both practices, particularly with regard to patients’ preferences and requests, decision-making and physicians’ intentions. However, some stated that the distinction between the two sometimes becomes blurred, especially when the sedating medication is increased disproportionally or when sedation is used for patients with a longer life expectancy. Conclusions: The differences and similarities between continuous sedation until death and euthanasia is an issue for several Flemish professional caregivers in their care for unbearably suffering patients at the end of life. Although guidelines strictly distinguish both practices, this may not always be the case in Flemish clinical practice.

The ethical desirability of moral bioenhancement: a review of reasons

BackgroundThe debate on the ethical aspects of moral bioenhancement focuses on the desirability of using biomedical as opposed to traditional means to achieve moral betterment. The aim of this paper is to systematically review the ethical reasons presented in the literature for and against moral bioenhancement.DiscussionA review was performed and resulted in the inclusion of 85 articles. We classified the arguments used in those articles in the following six clusters: (1) why we (don’t) need moral bioenhancement, (2) it will (not) be possible to reach consensus on what moral bioenhancement should involve, (3) the feasibility of moral bioenhancement and the status of current scientific research, (4) means and processes of arriving at moral improvement matter ethically, (5) arguments related to the freedom, identity and autonomy of the individual, and (6) arguments related to social/group effects and dynamics. We discuss each argument separately, and assess the debate as a whole. First, there is little discussion on what distinguishes moral bioenhancement from treatment of pathological deficiencies in morality. Furthermore, remarkably little attention has been paid so far to the safety, risks and side-effects of moral enhancement, including the risk of identity changes. Finally, many authors overestimate the scientific as well as the practical feasibility of the interventions they discuss, rendering the debate too speculative.SummaryBased on our discussion of the arguments used in the debate on moral enhancement, and our assessment of this debate, we advocate a shift in focus. Instead of speculating about non-realistic hypothetical scenarios such as the genetic engineering of morality, or morally enhancing ‘the whole of humanity’, we call for a more focused debate on realistic options of biomedical treatment of moral pathologies and the concrete moral questions these treatments raise.

Continuous sedation until death: the everyday moral reasoning of physicians, nurses and family caregivers in the UK, The Netherlands and Belgium

BackgroundContinuous 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.MethodsThis study is an international qualitative interview study involving interviews with physicians, nurses, and relatives of deceased patients in the UK, The Netherlands and Belgium (the UNBIASED study) about a case of continuous sedation at the end of life they were recently involved in. All interviews were transcribed verbatim and analysed by staying close to the data using open coding. Next, codes were combined into larger themes and categories of codes resulting in a four point scheme that captured all of the data. Finally, our findings were compared with others and explored in relation to theories in ethics and sociology.ResultsThe participants’ responses can be captured as different dimensions of ‘closeness’, i.e. the degree to which one feels connected or ‘close’ to a certain decision or event. We distinguished four types of ‘closeness’, namely emotional, physical, decisional, and causal. Using these four dimensions of ‘closeness’ it became possible to describe how physicians, nurses, and relatives experience their involvement in cases of continuous sedation until death. More specifically, it shined a light on the everyday moral reasoning employed by care providers and relatives in the context of continuous sedation, and how this affected the emotional impact of being involved in sedation, as well as the perception of their own moral responsibility.ConclusionFindings from this study demonstrate that various factors are reported to influence the degree of closeness to continuous sedation (and thus the extent to which carers feel morally responsible), and that some of these factors help care providers and relatives to distinguish continuous sedation from euthanasia.

The language of sedation in end-of-life care: The ethical reasoning of care providers in three countries.

The application of ethically controversial medical procedures may differ from one place to another. Drawing on a keyword and text-mining analysis of 156 interviews with doctors and nurses involved in end-of-life care (‘care providers’), differences between countries in care providers’ ethical rationales for the use of sedation are reported. In the United Kingdom, an emphasis on titrating doses proportionately against symptoms is more likely, maintaining consciousness where possible. The potential harms of sedation are perceived to be the potential hastening of social as well as biological death. In Belgium and the Netherlands, although there is concern to distinguish the practice from euthanasia, rapid inducement of deep unconsciousness is more acceptable to care providers. This is often perceived to be a proportionate response to unbearable suffering in a context where there is also greater pressure to hasten dying from relatives and others. This means that sedation is more likely to be organised like euthanasia, as the end ‘moment’ is reached, and family farewells are organised before the patient is made unconscious for ever. Medical and nursing practices are partly responses to factors outside the place of care, such as legislation and public sentiment. Dutch guidelines for sedation largely tally with the practices prevalent in the Netherlands and Belgium, in contrast with those produced by the more international European Association for Palliative Care whose authors describe an ethical framework closer to that reportedly used by UK care providers.

Continuous Sedation at the End of Life: Ethical, Clinical and Legal Perspectives

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Factors that facilitate or constrain the use of continuous sedation at the end of life by physicians and nurses in Belgium: results from a focus group study

Continuous sedation at the end of life (CS) is the practice whereby a physician uses sedatives to reduce or take away a patients consciousness until death. Although the incidence of CS is rising, as of yet little research has been conducted on how the administration of CS is experienced by medical practitioners. Existing research shows that many differences exist between medical practitioners regarding how and how often they perform CS. We conducted a focus group study to find out which factors may facilitate or constrain the use of continuous sedation by physicians and nurses. The participants often had clear ideas on what could affect the likelihood that sedation would be used. The physicians and nurses in the focus groups testified that the use of continuous sedation was facilitated in cases where a patient has a very limited life expectancy, suffers intensely, makes an explicit request and has family members who can cope with the stress that accompanies sedation. However, this ‘paradigm case’ was considered to occur only rarely. Furthermore, deviations from the paradigm case were said to be sometimes due to physicians initiating the discussion on CS too late or not initiating it at all for fear of inducing the patient. Deviations from the paradigm case may also occur when sedation proves to be too difficult for family members who are said to sometimes pressure the medical practitioners to increase dosages and speed up the sedation.

Controversies surrounding continuous deep sedation at the end of life: the parliamentary and societal debates in France

BackgroundContinuous 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.DiscussionIn 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.SummaryThe 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.

An analysis of common ethical justifications for compassionate use programs for experimental drugs

BackgroundWhen a new intervention or drug is developed, this has to pass through various phases of clinical testing before it achieves market approval, which can take many years. This raises an issue for drugs which could benefit terminally ill patients. These patients might set their hopes on the experimental drug but are unable to wait since they are likely to pass away before the drug is available. As a means of nevertheless getting access to experimental drug, many seriously ill and terminally ill patients are therefore very willing to participate in randomised controlled trials. However, only very few terminally ill patients are able to actually participate, and those that do participate are at risk of participating solely as a way of getting experimental drugs. Currently, there are, however, ways of getting access to drugs that have not (yet) gained market approval. One such mean is via expanded access or compassionate use programs where terminally ill patients receive experimental new drugs that are not yet market approved. In this paper, I examine some of the common justifications for such programs.Main bodyThe most frequently voiced justifications for compassionate use or expanded access programs could be put in one of three categories. First, there are justifications of justice, where compassionate use programs could be seen as a just or fair way to distribute experimental new drugs to patients who are denied access to RCT’s through no fault of their own. Second, such programs could be justified by reference to the ethical principle of beneficence where it could be claimed that terminally ill patients stand to benefit greatly at very little risk (as they are already dying). Third, there are considerations of autonomy where, it is claimed, patients should be able to exercise their autonomy and have access to such drugs if that is there free choice and they are fully aware of the risks associated with that choice.Short conclusionIn this paper, I argue currently all justifications are potentially problematic. If they truly form the basis for justification, compassionate use programs should be designed to maximize justice, beneficence and autonomy.

Reasons for continuous sedation until death in cancer patients: a qualitative interview study.

End-of-life sedation, though increasingly prevalent and widespread, remains a highly debated medical practice in the context of palliative medicine. This qualitative study aims to look more specifically at how health care workers justify their use of continuous sedation until death and which factors they report as playing a part in the decision-making process. In-depth interviews were held with 28 physicians and 22 nurses of 27 cancer patients in Belgium who had received continuous sedation until death in hospitals, palliative care units or at home. Our findings indicate that medical decision-making for continuous sedation is not only based on clinical indications but also related to morally complex issues such as the social context and the personal characteristics and preferences of individual patient and their relatives. The complex role of non-clinical factors in palliative sedation decision-making needs to be further studied to assess which medically or ethically relevant arguments are underlying daily clinical practice. Finally, our findings suggest that in some cases continuous sedation was resorted to as an alternative option at the end of life when euthanasia, a legally regulated option in Belgium, was no longer practically possible.