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Keywords:

  • Intensive care;
  • terminal care;
  • end-of-life decisions;
  • family care;
  • physical environment

Background:  In an intensive care unit (ICU), privacy and proximity are reported to be important needs of dying patients and their family members. It is assumed that good communication between the ICU team and families about end-of-life decisions improves the possibilities of meeting families’ needs, thus guaranteeing a dignified and peaceful death in accordance with end-of-life care guidelines. The aim of this study was to explore the circumstances under which patients die in Swedish ICUs by reporting on the presence of family and whether patients die in private or shared rooms. An additional aim was to investigate the frequency of end-of-life decisions and whether nurses and family members were informed about such decisions.

Methods:  A questionnaire based on the research questions was completed when a patient died in the 10 ICUs included in the study. Data were collected on 192 deaths.

Results:  Forty per cent of the patients died without a next of kin at the bedside and 46% of deaths occurred in a shared room. This number decreased to 37% if a family member was present. Patients without a family member at their bedside received less analgesics and sedatives. There was a significant relationship between family presence, expected death and end-of-life decisions.

Conclusions:  The results indicate the necessity of improving the ICU environment to promote the need for proximity and privacy for dying patients and their families. The study also highlights the risk of underestimating the needs of patients without a next of kin at their bedside at the time of death.