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Abstract 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 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.

Abstract Background The experience of Wish to Die is common in patients living with Advanced Disease. It has been studied worldwide and qualitative studies have contributed to the understanding of the complexity of the phenomenon of the WTD but a deeper understanding on the individual’s views is still needed. The objective of this study was to identify common characteristics of the experience of wish to die in advanced disease. Methods A phenomenological study was carried out with multicenter participation of patients with advanced disease who had expressed their wish to die to health professionals. Semi-structured interviews were employed to obtain an in-depth perspective of each patient’s lived experience. A phenomenological analysis of the data collected was performed to describe and explore the characteristic aspects of the phenomenon under study. Results Fourteen patients with advanced disease were interviewed. Most of them had cancer. In the analysis of the patients’ accounts of their experiences, three common characteristics were identified: a) experiencing a state of transience; b) the attempt to reconnect with oneself; and c) additional disease-related aspects that influence the wish to die. Patients expressed the need for a safe space to address the wish to die and the importance of receiving care that considers both ‘being’ and ‘doing’. Conclusions Patients with advanced disease and wish to die experience a state of transience where the patient lives and ephemeral state of existence. Interventions focused on reinforcing the intrinsic value of the individual emerge as essential components of a compassionate accompaniment of those facing the wish to die.