End-of-life care in intensive care units - family routines and environmental factors

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 good-bye 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.