Last 3 months of life in home ventilated patients: the family perception

Background: Information on quality of care in end-stage home ventilated patients is lackingMethods: To describe the family’s perception of quality of care delivered to these patients during the last 3 months of life, 11 Respiratory Units proposed a questionnaire to close relatives of 168 deceased patients. Results: Response rate was 98.8%. Answers to the binary 35-item questionnaire were distributed into just 4 groups (COPD or non-COPD and tracheostomized or NIV users) for each of 6 identified domains (Control of symptoms, awareness of disease, family burden, process of dying, medical troubles, technical problems). More than 80% of patients were thought to be conscious of their illness, and only 59% had satisfactory control of symptoms, while who did not, mainly COPD patients (50%), required increased use of drugs. 46% of patients died at home, but a large portion (83%) of COPD patients required hospital admission (mainly in ICU) during the last 3 months of life. NIV patients required more technical interventions and settings adjustments than tracheotomized patients (20% and 12 % p=0.038, respectively), irrespective of the diagnosis. Conclusions: Close relatives of home ventilated patients in their last 3 months of life, perceive that most of their beloved have high awareness of prognosis. Symptoms control was not always achieved and COPD patients and those with NIV needed more frequent health care assistance, notwithstanding, half of patients died at home. This report suggests a stronger way forward improvement in the quality of care in terminally-ill ventilated patients.