Although advances in intensive care have enabled more patients to survive an acute critical illness, they also have created a large and growing population of chronically critically ill patients with prolonged dependence on mechanical ventilation and other intensive care therapies. Chronic critical illness is a devastating condition: mortality exceeds that for most malignancies, and functional dependence persists for most survivors. Costs of treating the chronically critically ill in the United States already exceed $20 billion and are increasing. In this article, we describe the constellation of clinical features that characterize chronic critical illness. We discuss the outcomes of this condition including ventilator liberation, mortality, and physical and cognitive function, noting that comparisons among cohorts are complicated by variation in defining criteria and care settings. We also address burdens for families of the chronically critically ill and the difficulties they face in decision-making about continuation of intensive therapies. Epidemiology and resource utilization issues are reviewed to highlight the impact of chronic critical illness on our health care system. Finally, we summarize the best available evidence for managing chronic critical illness, including ventilator weaning, nutritional support, rehabilitation, and palliative care, and emphasize the importance of efforts to prevent the transition from acute to chronic critical illness. As steps forward for the field, we suggest a specific definition of chronic critical illness, advocate for the creation of a research network encompassing a broad range of venues for care, and highlight areas for future study of the comparative effectiveness of different treatment venues and approaches.
Objective Although the majority of hospital deaths occur in the intensive care unit and virtually all critically ill patients and their families have palliative needs, we know little about how patients and families, the most important “stakeholders,” define high-quality intensive care unit palliative care. We conducted this study to obtain their views on important domains of this care. Design Qualitative study using focus groups facilitated by a single physician. Setting A 20-bed general intensive care unit in a 382-bed community hospital in Oklahoma; 24-bed medical–surgical intensive care unit in a 377-bed tertiary, university hospital in urban California; and eight-bed medical intensive care unit in a 311-bed Veterans’ Affairs hospital in a northeastern city. Patients Randomly-selected patients with intensive care unit length of stay ≥5 days in 2007 to 2008 who survived the intensive care unit, families of survivors, and families of patients who died in the intensive care unit. Interventions None. Measurements and Main Results Focus group facilitator used open-ended questions and scripted probes from a written guide. Three investigators independently coded meeting transcripts, achieving consensus on themes. From 48 subjects (15 patients, 33 family members) in nine focus groups across three sites, a shared definition of high-quality intensive care unit palliative care emerged: timely, clear, and compassionate communication by clinicians; clinical decision-making focused on patients’ preferences, goals, and values; patient care maintaining comfort, dignity, and personhood; and family care with open access and proximity to patients, interdisciplinary support in the intensive care unit, and bereavement care for families of patients who died. Participants also endorsed specific processes to operationalize the care they considered important. Conclusions Efforts to improve intensive care unit palliative care quality should focus on domains and processes that are most valued by critically ill patients and their families, among whom we found broad agreement in a diverse sample. Measures of quality and effective interventions exist to improve care in domains that are important to intensive care unit patients and families.
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