title: End-of-life care in intensive care units: family routines and environmental factors.
abstract: The purpose of this study was to describe family care routines and to explore environmental factors when patients die in Swedish intensive care units (ICUs). The main research questions were: what are the physical environmental circumstances and facilities when caring for patients in end-of-life and are there any routines or guidelines when caring for dying patients and their families? A questionnaire was sent to 79 eligible Swedish ICUs in December 2003, addressed to the unit managers. The response rate was 94% (n = 74 units). The findings show that, despite recommendations highlighting the importance of privacy for dying ICU patients and their families, only 11% of the respondents stated that patients never died in shared rooms in their ICU. If a patient dies in a shared room, nurses strive to ensure a dignified goodbye by moving the body to an empty room or to one specially designated for this purpose. The majority (76%) of the units had waiting rooms within the ICU. The study also revealed that there is a need for improvements in the follow-up routines for bereaved families. Many units reported (51%) that they often or almost always offer a follow-up visit, although in most cases the bereaved family had to initiate the follow-up by contacting the ICU. Guidelines in the area of end-of-life care were used by 25% of the ICUs. Further research is necessary to acquire a deeper knowledge of the circumstances under which patients die in ICUs and what impact the ICU environment has on bereaved families.
authors.affiliation: Institute of Health and Care Sciences, The Sahlgrenska Academy, Göteborg University, Göteborg, Sweden. isabell.fridh@fhs.gu.se
authors.forename: Isabell
authors.initials: I
authors.lastname: Fridh
authors.forename: Anna
authors.initials: A
authors.lastname: Forsberg
authors.forename: Ingegerd
authors.initials: I
authors.lastname: Bergbom
mesh_terms: D005190:Family; D007362:Intensive Care Units; D011795:Surveys and Questionnaires; D013548:Sweden; D013727:Terminal Care