Background: End-of-life decisions are common in intensive care units (ICUs), and increasingly, non-invasive ventilation (NIV) is used as a ceiling of ventilatory care. However, little is known about the outcome following that decision.

Methods: An observational, single-center, retrospective, follow-up study with no interventions, on ICU patients treated with NIV and a do-not-intubate (DNI) order. The patients were followed until a 5-year survival rate could be calculated.

Results: One hundred and fifty-seven patients were treated with NIV during 2002 and 2003, and among 38 a DNI order was in effect. Of the 38 DNI patients, 11 died in the ICU, 16 died on the ward and 11 survived the hospital stay. Five of these 11 survivors died within 6 months, two died after 2.7 and 3.3 years, respectively, but four were still alive after 5 years. The long-term (>6 months) survivors have, surprisingly only been admitted to the hospital 0–2 times a year – and seldom with the need for ICU treatment.

Conclusions: According to this study, and previous ones, it seems worthwhile treating DNI patients with NIV. Twenty-five to 35% leave the hospital alive, every 6th patient lives for at least 1 year, and this paper shows that 10% may survive for 5 years or more. However, only chronic obstructive pulmonary disease and chronic heart failure patients (both with a concomitant low APACHE score) seem to have a reasonable outcome, and patients should be informed about this. So far, no study has investigated the quality of life of these survivors.