Satisfaction with end-of-life care and self-rated health among bereaved family members; a descriptive cross-sectional study in an intensive care context

Abstract Background In intensive care units, critically ill patients often require life-sustaining interventions. When these no longer benefit the patient, care is often transferred to end-of-life care. Family members may find themselves in a stressful situation, since they often act as proxies in decision-making processes, and support the patient nearing the end of life, while also coping with their own grief. The aim of this study is to investigate bereaved family members’ satisfaction with care, decision-making, the patients’ last hours of life, and their own self-rated health in end-of-life care in an intensive care setting. Method A descriptive cross-sectional design with the questionnaire Family Satisfaction with Care in the Intensive care unit (FS-ICU 24) and its subscales FS-ICU Care and FS-ICU Decision-making was used: Bereaved family members from seven intensive care units in an urban region in Sweden participated. Data were analysed using descriptive and inferential statistics. Results Bereaved family members (n = 141) reported overall satisfaction with end-of-life care, FS-ICU Total 77.6 (SD = 20.4); FS-ICU Care 79.5 (SD = 19.9), and FS-ICU Decision-making 74.8 (SD = 23.3). Dissatisfaction were reported by 12.3% (n = 17) of the family members with insufficient emotional support, 14.7% (n = 20) inconsistent information, and 17% (n = 24) limited control over patients’ care. Family members who rated their health as worse compared to a year ago, reported lower satisfaction in FS-ICU Decision-making (p = 0.05). Conclusion This study shows an overall high satisfaction with end-of-life care in ICUs with summary scores in the upper quarter as measured by the FS-ICU 24. This study also uncovers a lack of attention to the individual needs of family members. Dissatisfaction stemmed from the items concerning insufficient emotional support, inconsistent information, and limited control over patients’ care. A markedly dissatisfied subgroup were also identified. These findings underscore the importance of paying attention to family members who express dissatisfaction with care and decision-making and items that received the lowest satisfaction scores. It is of paramount importance that when patients are cared for in ICU at the end of life, family members needs are identified and measures are taken to meet those needs, particularly for the most dissatisfied family members.