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.
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.
Background: In the organization of health care and health care systems, there is an increasing trend towards integrated care. Policy-makers from different countries are creating policies intended to promote cooperation and collaboration between health care providers, while facilitating the integration of different health care services. Hopes are high, as such collaboration and integration of care are believed to save resources and improve quality. However, policy-makers are likely to encounter various challenges and limitations when attempting to turn these great ideas into effective policies. In this paper, we look into these challenges. Main body: We argue that the organization of health care and integrated care is of public concern, and should thus be of crucial interest to policy-makers. We highlight three challenges or limitations likely to be encountered by policy-makers in integrated care. These are: (1) conceptual challenges; (2) empirical/methodological challenges; and (3) resource challenges. We will argue that it is still unclear what integrated care means and how we should measure it. 'Integrated care' is a single label that can refer to a great number of different processes. It can describe the integration of care for individual patients, the integration of services aimed at particular patient groups or particular conditions, or it can refer to institution-wide collaborations between different health care providers. We subsequently argue that health reform inevitably possesses a political context that should be taken into account. We also show how evidence supporting integrated care may not guarantee success in every context. Finally, we will discuss how promoting collaboration and integration might actually demand more resources. In the final section, we look at three different paradigmatic examples of integrated care policy: Norway, the UK's NHS, and Belgium. Conclusions: There seems widespread agreement that collaboration and integration are the way forward for health care and health care systems. Nevertheless, we argue that policy-makers should remain careful; they should carefully consider what they hope to achieve, the amount of resources they are willing to invest, and how they will evaluate the success of their policy.
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.
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.
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.
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.
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