Refractory suffering at the end of life and the assisted dying debate: An interview study with palliative care nurses and doctors

Abstract

Background How often does refractory suffering, which is suffering due to symptoms that cannot be adequately controlled, occur at the end of life in modern palliative care? What are the causes of such refractory suffering? Should euthanasia be offered for refractory suffering at the end of life? We sought to shed light on these questions through interviews with palliative care specialists. Methods Semi-structured interviews with six nurses and six doctors working in palliative care in five Norwegian hospitals. Transcripts were analysed with systematic text condensation, a qualitative analysis framework. Results Informants find that refractory suffering is rare, and that with palliative sedation satisfactory symptom control can nearly always be achieved at the end of life. However, the process of reaching adequate symptom control can be protracted, and there can be significant suffering in the meantime. Both somatic, psychological, social and existential factors can contribute to refractory suffering and potentiate each other. However, informants also place significant weight on factors pertaining to the organization of palliative care services as contributing to insufficient symptom control. Conclusions If refractory suffering is indeed rare, then this arguably weakens a common prima facie argument for the legalization of assisted dying. However, the process of reaching adequate symptom control can be protracted and involve significant suffering. The experiences of palliative care clinicians constitute important empirical premises for the assisted dying debate. The study points to several areas in which palliative care can be improved.

Norwegian nurses' perceptions of assisted dying requests from terminally ill patients—A qualitative interview study

“…The nurses in our study felt trapped in a situation that could not be resolved, making them feel vulnerable and powerless as they were unable to relieve suffering. This finding is comparable with that of the study by Gustad et al ( 2020 ) suggesting that nurses' lack of medical knowledge might lead to underdosing and, thereby, the unnecessary suffering of terminally ill patients.…”

“…In a review of the available literature undertaken in planning this study, it appeared that Norwegian nurses are invisible in the research literature and in public discussions about assisted dying. Information regarding their perceptions of requests for assisted dying is limited (Gustad et al, 2020 ; Hol et al, 2022 ). However, a recent survey among Norwegian nurses revealed that 58% of 205 responding nurses had received requests for assisted dying from terminally ill patients (Hol et al, 2022 ).…”

Ought the level of sedation to be reduced during deep palliative sedation? A clinical and ethical analysis

“…Furthermore, it would certainly have an impact on the euthanasia debate, as one of the main arguments against euthanasia is that effective symptom control can be achieved through DPS, thereby rendering euthanasia redundant at the end of life. 21 …”

Expanded terminal sedation in end-of-life care

“…Furthermore, even where the removal of consciousness and/or the potential hastening of death are deemed to be ‘bad’ effects, this does not necessarily mean that TS should be reserved as an option of last resort. First, the process of exhausting other palliative care measures can take time and involve significant distress along the way 18. Second, the assessment of how much suffering (and over what period of time) counts as ‘refractory’ is inherently subjective and value based.…”

“…First, the process of exhausting other palliative care measures can take time and involve significant distress along the way. 18 Second, the assessment of how much suffering (and over what period of time) counts as ‘refractory’ is inherently subjective and value based. Arguably, it is only the patient who can ultimately determine when suffering becomes intolerable.…”