When critical illness becomes chronic: informational needs of patients and families

Abstract

Purpose: A large and growing group of intensive care unit survivors are "chronically critically ill," with ongoing respiratory failure and poor outcomes for postdischarge survival and functional recovery. In this qualitative study, we investigated what information is relevant and important for clinician-patient/family communication when critical illness becomes chronic, as indicated by tracheotomy for prolonged mechanical ventilation.

Methods: We conducted focus groups and structured interviews of patients who survived chronic critical illness, of surrogates of such patients and of nonsurvivors, and of clinicians with relevant experience. Discussions were audiotaped, transcribed, and analyzed using grounded theory.

Results: Twenty-five subjects participated (4 survivors, 7 survivors' surrogates, 4 nonsurvivors' surrogates, 10 clinicians). We found broad agreement on 6 major domains of information that are relevant and important: (1) nature of illness/treatments, (2) prognosis, (3) impact of treatment, (4) potential complications, (5) expected care needs after hospitalization, and (6) alternatives to continuation of treatment. Participants endorsed the multidisciplinary family meeting as an effective communication strategy.

Conclusions: Given poor outcomes for most patients and high costs and burdens of treatment, effective communication is essential when critical illness enters a chronic phase. Our findings provide a framework for such communication and a basis for further research.