Family‐centred end‐of‐life care and bereavement services in Swedish intensive care units: A cross‐sectional study

Background Post-intensive care syndrome-family is a common problem in relatives of patients who die in an intensive care unit. Family-centred end-of-life care with support for the family during and after the death is supposed to prevent suffering and avoid illness. Aims and objectives This study aimed to investigate family-centred end-of-life care and bereavement follow-up services offered to family members of patients who die in Swedish intensive care units. Design, Methods A cross-sectional study using a 16-question survey based on family-centred end-of-life care was sent to all 81 adult intensive care units. Data were analysed by descriptive statistics and chi-square. Respondents were able to add individual comments to the questionnaire. Results Although the majority (76.7%) offered some kind of follow up, this service was not always offered. Modes for invitation, timing, and contents in the follow up varied between the units. The staff tried to individualize the follow-up service according to the family's needs. Nurses and social workers were the only professionals who provided follow-up conversations on their own. Most of the intensive care units (97.3%) kept diaries that were handed over to the family when they left the unit after the patient's death or at a follow-up visit. Only 8.8% reported that they always offer the family the opportunity to be present during resuscitation. Most respondents reported that patients (60.6%) died in a private room. Conclusions Family-centred end-of-life care varied among the intensive care units, and some families were not offered any follow up at all. Timing, invitation, and elements in the follow up differ between the units. Diaries were commonly kept and usually given to the family. Few units offered the family to be present during resuscitation. Relevance to clinical practice There is a need for national guidelines to ensure that all bereaved families receive equal and individual family-centred end-of-life care.