• Background Lack of communication from healthcare providers contributes to the anxiety and distress reported by patients’ families after a patient’s death in the intensive care unit.
• Objective To obtain a detailed picture of the experiences of family members during the hospitalization and death of a loved one in the intensive care unit.
• Methods A qualitative study with 4 focus groups was used. All eligible family members from 8 intensive care units were contacted by telephone; 8 members agreed to participate.
• Results The experiences of the family members resembled a vortex: a downward spiral of prognoses, difficult decisions, feelings of inadequacy, and eventual loss despite the members’ best efforts, and perhaps no good-byes. Communication, or its lack, was a consistent theme. The participants relied on nurses to keep informed about the patients’ condition and reactions. Although some participants were satisfied with this information, they wished for more detailed explanations of procedures and consequences. Those family members who thought that the best possible outcome had been achieved had had a physician available to them, options for treatment presented and discussed, and family decisions honored.
• Conclusions Uncertainty about the prognosis of the patient, decisions that families make before a terminal condition, what to expect during dying, and the extent of a patient’s suffering pervade families’ end-of-life experiences in the intensive care unit. Families’ information about the patient is often lacking or inadequate. The best antidote for families’ uncertainty is effective communication.
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