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

Abstract

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.

Level of knowledge, emotional impact and perception about the role of nursing professionals concerning palliative sedation

“…This therapy is used in palliative care as a strategy to provide relief from refractory symptoms, such as delirium, dyspnoea, psychological suffering and pain, among others (Altisent et al., ; De Graeff & Dean, ; Maltoni, Scarpi, & Nanni, ; Schildmann & Schildmann, ). Although its administration is more common every day and there are several guidelines available, it is still a subject of much clinical, legal and ethical debate in different contexts (Abarshi et al., ; Leboul et al., ; Melia, ; Raus et al., ; Verkerk, van Wijlick, Legemaate, & de Graeff, ). Most guidelines on PS and studies regarding its use derive from developed countries (Abarshi et al., ; Schildmann & Schildmann, ) and data regarding guidelines, practices and perceptions of healthcare providers in developing regions (e.g., Latin America) are very scarce (Moyano, Zambrano, Ceballos, Santacruz, & Guerrero, ; Pelluchon, ; Soriano, Lima, Batista, Febles, & Morales, ; Spineli, Kurashima, & De Gutiérrez, ).…”

“…Yet, it is important to note that this role may come bearing an emotional toll. Healthcare providers express concerns and experiences of emotional and moral distress when performing PS, which may be related to skills, availability of clinical guidelines, work organisation aspects and uncertainties and debates surrounding PS (Leboul et al., ; Raus et al., ). Indeed, nurses have been found to be particularly vulnerable to concerns regarding the practice of PS (Abarshi et al., ; Leboul et al., ), even before graduating from nursing programmes (Edo‐Gual, Tomás‐Sábado, Bardallo‐Porras, & Monforte‐Royo, ).…”

Ethical dilemmas faced by hospice nurses when administering palliative sedation to patients with terminal cancer

“…A study by Raus et al (2014) that included the same three countries as above focused on the emotional impact of involvement in continuous sedation by nurses, physicians, and relatives and their understanding of their moral responsibility. Interviews were conducted with 57 physicians, 73 nurses, and 34 relatives.…”

The impact of the inpatient practice of continuous deep sedation until death on healthcare professionals’ emotional well-being: a systematic review

“…However, engaging the family involves managing the emotional context of families and patients coping with suffering [28]. Conflicting wishes between patients and families and lack of consensus between healthcare professionals are potentially burdensome [20].…”