BackgroundThe aim of this paper is to critically discuss some of the ethically controversial issues regarding continuous deep palliative sedation at the end of life that are addressed in the EAPC recommended framework for the use of sedation in palliative care.DiscussionWe argue that the EAPC framework would have benefited from taking a clearer stand on the ethically controversial issues regarding intolerable suffering and refractory symptoms and regarding the relation between continuous deep palliative sedation at the end of life and euthanasia. It is unclear what constitutes refractory symptoms and what the relationship is between refractory symptoms and intolerable suffering, which in turn makes it difficult to determine what are necessary and sufficient criteria for palliative sedation at the end of life, and why. As regards the difference between palliative sedation at the end of life and so-called slow euthanasia, the rationale behind stressing the difference is insufficiently demonstrated, e.g. due to an overlooked ambiguity in the concept of intention. It is therefore unclear when palliative sedation at the end of life amounts to abuse and why.ConclusionsThe EAPC framework would have benefited from taking a clearer stand on some ethically controversial issues regarding intolerable suffering and refractory symptoms and regarding the relation between continuous deep palliative sedation at the end of life and euthanasia. In this text, we identify and discuss these issues in the hope that an ensuing discussion will clarify the EAPC's standpoint.
Introduction:Current research of moral distress is mainly derived from challenges within high-resource health care settings, and there is lack of clarity among the different definitions. Disaster responders are prone to a range of moral challenges during the work, which may give rise to moral distress. Further, organizations have considered increased drop-out rates and sick leaves among disaster responders as consequences of moral distress. Therefore, initiatives have been taken to address and understand the impacts of moral distress and its consequences for responders. Since there is unclarity among the different definitions, a first step is to understand the concept of moral distress and its interlinkages within the literature related to disaster responders.Hypothesis/Problem:To examine how disaster responders are affected by moral challenges, systematic knowledge is needed about the concepts related to moral distress. This paper aims to elucidate how the concept of moral distress in disaster response is defined and explained in the literature.Methods:The paper opted to systematically map the existing literature through the methods of a scoping review. The searches derived documents which were screened regarding specific inclusion criteria. The included 16 documents were analyzed and collated according to their definitions of moral distress or according to their descriptions of moral distress.Results:The paper provides clarity among the different concepts and definitions of moral distress within disaster response. Several concepts exist that describe the outcomes of morally challenging situations, centering on situations when individuals are prevented from acting in accordance with their moral values. Their specific differences suggest that to achieve greater clarity in future work, moral stress and moral distress should be distinguished.Conclusion:Based on the findings, a conceptual model of the development of moral distress was developed, which displays a manifestation of moral distress with the interplay between the responder and the context. The overview of the different concepts in this model can facilitate future research and be used to illuminate how the concepts are interrelated.
The results suggest a need for guidelines on benefit sharing, as well as trustworthy and stable measures to maintain privacy, as a means for increasing personal relevance and trust among potential participants in genetic research. Measures taken from biobanks seem insufficient in maintaining and increasing trust, suggesting that broader societal measures should be taken.
What challenges must a principle of need for prioritisations in health care meet in order to be plausible and practically useful? Some progress in answering this question has recently been made by Hope, Østerdal and Hasman. This article continue their work by suggesting that the characteristic feature of principles of needs is that they are sufficientarian, saying that we have a right to a minimally acceptable or good life or health, but nothing more. Accordingly, principles of needs must answer two distributive questions: when do we have sufficient and how should we prioritise among those who do not yet have a sufficiency? Furthermore, it is argued that Roger Crisp's theory of need, which combines sufficientarianism with prioritarianism below the threshold of need, is better equipped than alternatives to answer these questions as well as meeting the challenges formulated by Hope, Østerdal and Hasman. However, Crisp's theory faces two major challenges. First, it has to say something about the currency of distribution: a principle of need must be complemented either with a theory on the human good or a theory about the proper goals of health care. Second, it has to say something about where the threshold should be set. However, any attempt to set a threshold seems morally arbitrary in the light of the sufficientarian idea that those just above the threshold never should be given priority over those just below the threshold.
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