Objective: To compare prolonged mechanical ventilation decision-makers' expectations for long-term patient outcomes with prospectively observed outcomes and to characterize important elements of the surrogate-physician interaction surrounding prolonged mechanical ventilation provision. Prolonged mechanical ventilation provision is increasing markedly despite poor patient outcomes. Misunderstanding prognosis in the prolonged mechanical ventilation decision-making process could provide an explanation for this phenomenon.
Design: Prospective observational cohort study.
Setting: Academic medical center.
Patients: A total of 126 patients receiving prolonged mechanical ventilation.
Interventions: None.
Measurements and main results: Participants were interviewed at the time of tracheostomy placement about their expectations for 1-yr patient survival, functional status, and quality of life. These expectations were then compared with observed 1-yr outcomes measured with validated questionnaires. The 1-yr follow-up was 100%, with the exception of patient death or cognitive inability to complete interviews. At 1 yr, only 11 patients (9%) were alive and independent of major functional status limitations. Most surrogates reported high baseline expectations for 1-yr patient survival (n = 117, 93%), functional status (n = 90, 71%), and quality of life (n = 105, 83%). In contrast, fewer physicians described high expectations for survival (n = 54, 43%), functional status (n = 7, 6%), and quality of life (n = 5, 4%). Surrogate-physician pair concordance in expectations was poor (all kappa = <0.08), as was their accuracy in outcome prediction (range = 23%-44%). Just 33 surrogates (26%) reported that physicians discussed what to expect for patients' likely future survival, general health, and caregiving needs.
Conclusions: One-year patient outcomes for prolonged mechanical ventilation 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 seem to be potentially modifiable deficiencies in surrogate-physician interactions.