The decision-making process for sedation in specialist palliative care: a qualitative interview study with team members, relatives, and patients

The decision-making process for sedation in palliative care remains under-researched, with evidence of limited involvement of patients and their relatives despite guidelines. The aim of this study was to explore the decision-making process for sedation in specialist palliative care in Germany, including all types of sedation (light to deep, temporary or continuous (until death)). Qualitative semi-structured interviews with 26 physicians, 22 nurses, eleven other members of the multiprofessional care team, eight relatives, and six patients. Recruitment took place via contact person in ten palliative care units and seven specialist palliative home care services in Germany. We analysed the transcripts by Framework Analysis and applied the shared treatment decision-making model by Charles et al. Findings could be assigned to the adapted 5-phase decision-making process: (1) In the initiation phase, preemptive discussions were typically limited to patients with chronic diseases or potential catastrophic events, with some physicians avoiding early discussions due to fears of pressure. (2) During information exchange, the amount of detail varied by sedation type, with often only little information given for mild forms. (3) In the deliberation phase, informed consent was more common for deep sedation, and some team members criticized inadequate documentation of consent. (4) Decisions to start sedation were usually collaborative, though challenges arose when there was no defined starting point for deep sedation. (5) Re-evaluation was partly described to be challenging due to concerns about reintroducing suffering if sedation was reduced. This study highlights the processual nature of the decision-making process for sedation in palliative care and proposes re-evaluation as a fifth phase. It underscores the importance of early communication, addressing professionals’ concern, and supporting shared decision-making throughout all phases.