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

Abstract

We studied the family's perception of care in patients under home mechanical ventilation during the last 3 months of life.In 11 respiratory units, we submitted a 35-item questionnaire to relatives of 168 deceased patients exploring six domains: symptoms, awareness of disease, family burden, dying, medical and technical problems.Response rate was 98.8%. The majority of patients complained respiratory symptoms and were aware of the severity and prognosis of the disease. Family burden was high especially in relation to money need. During hospitalisation, 74.4% of patients were admitted to the intensive care unit (ICU). 78 patients died at home, 70 patients in a medical ward and 20 in ICU. 27% of patients received resuscitation manoeuvres. Hospitalisations and family economical burden were unrelated to diagnosis and mechanical ventilation. Families of the patients did not report major technical problems on the use of ventilators. In comparison with mechanical invasively ventilated patients, noninvasively ventilated patients were more aware of prognosis, used more respiratory drugs, changed ventilation time more frequently and died less frequently when under mechanical ventilation.We have presented good points and bad points regarding end-of-life care in home mechanically ventilated patients. Noninvasive ventilation use and diagnosis have impact on this burden.

The use of non-invasive ventilation at end of life in patients with motor neurone disease: A qualitative exploration of family carer and health professional experiences

“…19 It may be of note that the two bulbar-onset patients in this study were not using NIV at time of death.…”

Home mechanical ventilation: who cares about how patients die?

“…The study by VITACCA et al [14] does, however, have some limitations, which have also been acknowledged by the authors. First, the study was retrospectively performed, and we do not know if the findings are an accurate reflection of the final months of life.…”

“…In this issue of the European Respiratory Journal, VITACCA et al [14] present an Italian multicentre trial on the family's perception of HMV patient care during the last 3 months of life. Six domains of end-of-life care were addressed by a questionnaire which was developed for the purpose of the study and submitted to relatives of 168 deceased patients (65% with additional long-term oxygen therapy), these were: symptoms, awareness of disease, family burden, dying, medical problems and technical problems.…”

Unusual applications of noninvasive ventilation

“…As reported in a recent survey using a specifically designed questionnaire on the families' attitudes regarding care in the last 3 months of life of patients on home mechanical ventilation, the majority of patients complained of respiratory symptoms [88]. Symptom burden and palliative care needs of breathless patients with severe COPD are considerable and as high as among patients with advanced primary and secondary lung cancer, although patients with COPD have longer survival [89].…”