The symptom burden of chronic critical illness*

OBJECTIVE: To assess self-reported symptom burden of chronic critical illness. DESIGN: Prospective cohort study. SETTING: Respiratory care unit for treatment of chronically critically ill patients at an academic, tertiary-care, urban medical center. PATIENTS: Fifty patients who underwent elective tracheotomy and transfer from an adult intensive care unit to the respiratory care unit for weaning from mechanical ventilation. INTERVENTIONS: Assessment of physical and psychological symptoms through patients' self-reports using a modification of the Condensed Form of the Memorial Symptom Assessment Scale. MEASUREMENTS AND MAIN RESULTS: We measured self-reported symptom burden, ventilator outcomes, and vital status and functional status at discharge and 3 and 6 months after discharge. Half of the patients were successfully liberated from mechanical ventilation, but most hospital survivors were discharged to skilled nursing facilities and more than half of the cohort was dead at 3 months after discharge. Seventy-two percent (36 of 50) of patients were able to self-report symptoms during the period of respiratory care unit treatment. Among patients responding to symptom assessment, approximately 90% were symptomatic. Forty-four percent of patients reported pain at the highest levels. More than 60% reported psychological symptoms at these levels, and approximately 90% of patients reported severe distress due to difficulty communicating. CONCLUSIONS: Physical and psychological symptom distress is common and severe among patients receiving treatment for chronic critical illness. The majority of these patients die soon after hospital discharge. Given the level of distress in our study patients and the high mortality rate that we and others have observed, greater attention should be given to relief of pain and other distressing symptoms and to assessment of burdens and benefits of treatment for the chronically critically ill.