LAUSR

Objective Although prolonged mechanical ventilation (PMV) is increasingly common, little is known concerning patient symptom burden or attitudes toward PMV. This study aims to describe the mood, well-being, distressing symptoms, and attitudes toward prolonged ventilation among PMV patients treated either at home or long-term acute care (LTAC). Design An observational study. Setting and Participants 62 communicative participants treated with PMV, aged ≥18 years, insurees of a single HMO, treated at home hospital or LTAC specializing in ventilation in Jerusalem. Measures Sociodemographic characteristics; chronic conditions; functional status; symptom burden measured by revised Edmonton Symptomatic Assessment System (r-ESAS); attitudes toward PVM. Results Participants were aged 61.7 ± 20.7 years, commonly suffered progressive neuromuscular disease (43.5%) or chronic lung disease (29%), were functionally dependent, treated at home (64.5%) or LTAC (35.5%), and had a mean PMV duration of 36.6 months (interquartile range 10.8-114.1). The 5-item, short Geriatric Depression Scale identified depression among 38% of participants, and was less at home vs LTAC (34% vs 44%, P < .001). Mean revised Edmonton Symptom Assessment System score was 24.5 ± 14.8 (maximum severity = 100), and participants reported severe or distressing symptoms for tiredness (27%/20%), pain (10%/25%), anxiety (16%/14%), depression (9%/21%), drowsiness (12%/17%), shortness of breath (9%/15%), poor appetite (7%/9%), and nausea (0%/10%). Impaired general well-being was reported as severe, moderate, mild, or none among 15%, 40%, 30%, and 15%, respectively. Only 1 patient had advance directives concerning ventilation prior to intubation, and when asked if they had to choose again today, 85% of patients would again opt for ventilation. Conclusions and Implications Few PMV patients reported distressing symptoms, and 85% would choose ventilation if asked again. These findings might be useful in clinical practice to assist in decision making concerning prolonged ventilation.