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Background  Health-related quality of life (HRQL), life satisfaction, living conditions, patients’ attitudes towards life and death, expectations, beliefs and unmet needs are all poorly understood aspects associated with patients receiving invasive home mechanical ventilation (HMV) following ICU treatment and unsuccessful weaning. Therefore, the present study aimed to assess (1) HRQL, (2) life satisfaction and (3) patients’ perspectives on life and death associated with invasive HMV as the consequence of unsuccessful weaning.    Results  Patients undergoing invasive HMV with full technical supply and maximal patient care were screened over a 1-year period and assessed in their home environment. The study comprised the following: (1) detailed information on specific aspects of daily life, (2) self-evaluation of 23 specific daily life aspects, (3) HRQL assessment using the Severe Respiratory Insufficiency Questionnaire, (4) open interviews about the patient’s living situation, HRQL, unsolved problems, treatment options, dying and the concept of an afterlife. Out of 112 patients admitted to a specialized weaning centre, 50 were discharged with invasive HMV and 25 out of these (14 COPD and 11 neuromuscular patients) were ultimately enrolled. HRQL and life satisfaction were severely impaired, despite maximal patient care and full supply of technical aids. The most important areas of dissatisfaction identified were mobility, communication, social contact and care dependency. Importantly, 32% of patients would have elected to die in hindsight rather than receive invasive HMV.    Conclusions  Despite maximal patient care and a full supply of technical aids, both HRQL and life satisfaction are severely impaired in many invasive HMV patients who have failed prolonged weaning. These findings raise ethical concerns about the use of long-term invasive HMV following unsuccessful weaning.    Electronic supplementary material  The online version of this article (10.1186/s13613-018-0384-8) contains supplementary material, which is available to authorized users.

annals of intensive care

Quality of life and life satisfaction are severely impaired in patients with long-term invasive ventilation following ICU treatment and unsuccessful weaning