Palliative Sedation: A Focus Group Study on the Experiences of Relatives

Background: Most studies that have investigated the practice of palliative sedation have focused on physicians' practices and attitudes. Objective: The aim of this study was to explore relatives' experiences with palliative sedation and to gain more insight in positive and negative elements in their evaluation of palliative sedation. Design: Focus groups and individual interviews. Setting: Various care settings in the Netherlands. Subjects: A total of 14 relatives of patients who received palliative sedation until death participated. Results: Most relatives evaluated the provision of palliative sedation of their dying family member positively. Positive experiences were related to: the beneficial impact of palliative sedation on the patient's suffering, the opportunity that was offered to prepare for the patient's death, their involvement in the decision-making and care for the patient, and the pleasant care environment. However, the majority of the relatives were unsatisfied with one or more aspects of how information was being provided for. Some relatives were frustrated about the fact that nurses were not authorized to make decisions about the care for the patient and about the absence of physicians during weekends. None of the relatives mentioned the loss of the ability to communicate with the patient during the sedation and the possibility of hastening death'' as disadvantages of palliative sedation. Conclusion: Relatives tend to evaluate the provision of palliative sedation to their severely suffering family member positively because it contributes to a peaceful dying process. However, relatives indicated discontent with how information was being provided and with the communication in general.