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Background: Palliative sedation refers to the proportional use of titrated medication which reduces consciousness with the aim of relieving refractory suffering related to physical and psychological symptoms and/or existential distress near the end of life. Palliative sedation is intended to be an end of life option that enables healthcare professionals to provide good patient care but there remains controversy on how it is used. Little is known about decision-making processes regarding this procedure. The aim of this study was to explore decision-making processes in palliative sedation based on the experiences and perceptions of relatives and healthcare professionals. Methods: We conducted a qualitative interview study with dyads (a bereaved relative and a healthcare professional) linked to 33 deceased patient with cancer who had palliative sedation, in seven in-patient palliative care settings in five countries (Belgium, Germany, Italy, the Netherlands, and Spain). A framework analysis approach was used to analyse the data. Results: Two main themes are defined: 1) Decision-making about palliative sedation is a complex iterative process, 2) Decision-making is a shared process between the patient, healthcare professionals, and relatives. Decision-making about palliative sedation appears to follow an iterative process of shared information, deliberation, and decision-making. The patient and healthcare professionals are the main stakeholders, but relatives are involved and may advocate for, or delay, the decision-making process. Starting palliative sedation is reported to be an emotionally difficult decision for all parties. Conclusions: As decision-making about palliative sedation is a complex and iterative process, patients, relatives and healthcare professionals need time for regular discussions. This requires a high level of engagement by healthcare professionals, that takes into account patients' wishes and needs, and helps to facilitate decision-making. [ABSTRACT FROM AUTHOR]

Background: Palliative sedation involves the intentional proportional lowering of the level of consciousness in patients with life-limiting disease who are experiencing refractory suffering. The efficacy of palliative sedation needs to be monitored to ensure patient comfort. The aim of this study was to evaluate the efficacy using discomfort levels combined with sedation/agitation levels., Methods: In this prospective observational study, adult patients with advanced malignancies were recruited from hospice units, palliative care units, and hospital wards in five European countries. Health care professionals used proxy observations of discomfort levels (Discomfort Scale-Dementia of Alzheimer Type, range 0-27) and sedation/agitation levels (Richmond Agitation-Sedation Scale modified for palliative care inpatients), range - 5 to + 4) to evaluate the efficacy of palliative sedation., Results: In 78 participants, discomfort levels were monitored during palliative sedation. The mean discomfort score before start was 9.4 points (95% CI 8.3-10.5), which showed a significant decrease of 6.0 points (95% CI 4.8-7.1) after start of sedation for the total sedation period. In the multivariable analysis, no significant factors influencing baseline discomfort levels were identified. The discomfort and depth of sedation scores were found to be positively correlated, with an r of 0.72 (95% CI 0.61-0.82). The internal consistency of the discomfort scale was good (0.83), but the "Noisy breathing" item was less informative of the total discomfort score., Conclusions: The efficacy of palliative sedation can be evaluated by measuring discomfort levels combined with sedation/agitation levels. The measurement of discomfort levels might provide a more specific and detailed evaluation of adequate sedation., Trial Registration: This study is registered at ClinicalTrials.gov since January 22, 2021, registration number: NCT04719702., Competing Interests: Declarations. Ethics approval and consent to participate: This study has been approved by the Research Ethics Committee (REC) of the Radboud University Medical Centre in Nijmegen (ref.nr. 2019/6016, June 2020), the REC of the University Hospital Navarra in Pamplona (ref.nr.2020.044, June 2020), the REC of the Rheinische Friedrich-Wilhelm’s University in Bonn (ref.nr. 300/20, July 2020), the REC of the University Hospital of Palermo (ref.nr. 7/2020, July 2020), and the REC of the University Hospitals in Leuven (ref.nr.S64008, August 2020). Written informed consent was obtained before participation in the study, both in the participants and in the relatives and health care professionals for completing questionnaires. All methods were conducted in accordance with relevant guidelines and applicable regulations. Consent for publication: Not applicable. Competing interests: The authors declare no competing interests., (© 2024. The Author(s).)