Background Growing numbers of critically ill patients receive prolonged mechanical ventilation. Little is known about their patterns of care as they transition from the acute hospital to post-acute care facilities or the associated resource utilization. Objectives To describe one-year trajectories of care and resource utilization for prolonged mechanical ventilation patients. Design One-year prospective cohort study. Setting 5 ICUs at Duke University Medical Center. Participants 126 prolonged mechanical ventilation patients as well as their 126 surrogates and 54 ICU physicians were enrolled consecutively during one year. Prolonged mechanical ventilation was defined as ventilation for ≥4 days with tracheostomy placement or ventilation for ≥21 days without tracheostomy. Measurements Patients and surrogates were interviewed in hospital, as well as 3 and 12 months later to determine patient survival, functional status, and facility type and duration of post-discharge care. Physicians were interviewed in-hospital to elicit prognoses. Institutional billing records were used to assign costs for acute care, outpatient care, and inter-facility transportation. We used Medicare claims data to assign costs for post-acute care. Results 103 (82%) hospital survivors experienced 457 separate transitions in post-discharge care location (median 4 [interquartile range 3, 5]), including 68 (67%) patients who were readmitted at least once. Patients spent an average of 74% (CI, 68% to 80%) of all days alive in a hospital, post-acute care facility, or receiving home health care. At one year, 11 (9%) patients had a good outcome (alive with no functional dependency), 33 (26%) had a fair outcome (alive with moderate dependency), and 82 (65%) had a poor outcome (either alive with complete functional dependency (n=4, 21%) or dead (n=56, 44%). Patients experiencing a poor outcome were older, had more comorbidities, and were more frequently discharged to a post-acute care facility than patients with either fair or good outcomes (all p <0.05). Costs per patient were $306,135 (SD $285,467) and total cohort costs totaled $38.1 million, for an estimated $3.5 million per one-year independently functioning survivor. Limitations The results of this single center study may not be applicable to other centers. Conclusions Prolonged mechanical ventilation patients experience multiple transitions of care, resulting in extraordinary health care costs and persistent, profound disability. The optimism of surrogate decision makers should be balanced by discussions of these outcomes when considering a course of prolonged life support.

Objective: Prolonged mechanical ventilation (PMV) provision is increasing markedly despite poor patient outcomes. Misunderstanding prognosis in the PMV decision making process could provide an explanation to this phenomenon. Therefore, we aimed to compare PMV decision makers' expectations for long-term patient outcomes with prospectively observed outcomes. Design, Setting, and Patients: 126 patients undergoing PMV, their surrogates, and their intensive care unit physicians were enrolled consecutively (total n=378) at an academic medical center between April 2006 and April 2007 and followed prospectively for one year. Measurements: Participants were interviewed at the time of tracheostomy placement about their expectations for one-year patient survival, functional status, and quality of life. These expectations were then compared to observed one-year outcomes measured with validated questionnaires. Results: One-year follow up was 100%, with the exception of patient death or cognitive inability to complete interviews. At one year, only 11 (9%) patients were alive and independent of major functional status limitations. Most surrogates reported high baseline expectations for one-year patient survival (117 [93%]), functional status (90 [71%]), and quality of life (105 [83%]). In contrast, fewer physicians described high expectations for survival (54 [43%]), functional status (7 [6%]), and quality of life (5 [4%]). Surrogate-physician pair concordance in expectations was poor (all κ<0.08), as was their accuracy in outcome prediction (range 23-44%). Just 33 (26%) surrogates reported that physicians discussed what to expect for patients' likely future survival, general health, and caregiving needs. Conclusions: One-year patient outcomes for PMV patients were significantly worse than expected by patients' surrogates and physicians. Lack of prognostication about outcomes, discordance between surrogates and physicians about potential outcomes, and surrogates' unreasonably optimistic expectations appear to be potentially modifiable deficiencies in surrogate-physician interactions.