Family members’ experiences of palliative sedation -a systematic integrative review

Palliative care means care in the event of an incurable illness where the intention is to alleviate suffering and promote quality of life. In cases where the symptoms cannot be fully alleviated, palliative sedation may be required which is a lowering of consciousness in patients using medication to alleviate their suffering. The aim of this systematic integrative literature review was to describe how palliative sedation for patients at the end of life is experienced by their family members. A systematic integrative review as described by Whittemore and Knafl was performed using three databases; CINAHL, PubMed and APA PsychInfo. Eleven peer-reviewed studies published between 2005 and 2025 met the inclusion criteria. They described family members’ firsthand experiences with ethical considerations clearly stated and were not excluded for including participants under 18, being review articles, or being published in a language other than English. In total, the eleven studies comprised 1061 family members. Three of the studies came from Japan, two from the Netherlands, two more from the Netherlands, Belgium and UK and one from Belgium, Israel, Switzerland and Taiwan, respectively. Seven studies used quantitative methods, and four used qualitative methods. The results demonstrate how family members of a seriously ill person experience palliative sedation and are organized into eight categories: Affects the lifespan, Creates anxiety, Emphasizes importance of communication, Facilitates a good death, Highlights significance of participation, Impacts time and timing, Provides a chance for farewell and Relieves suffering. It was found that many family members of patients who received palliative sedation suffered. The suffering worsened the longer the sedation lasted. Palliative sedation also provided possibilities for a good death and farewell even though it was found to affect the life span. Clear information about what to expect and a good relationship with the healthcare staff was crucial. The well-being of family members was affected while the patients received palliative sedation, and they felt worse the longer the sedation lasted. Consistent information from the healthcare staff was of great importance. The lack of international guidelines and registries contributes to ambiguity regarding the definition and prevalence of palliative sedation in published articles, thereby limiting the scope of comparative research. Nevertheless, palliative sedation constitutes an important component of palliative care, underscoring the need for further studies, including examinations of cultural and religious influences on family members’ experiences.