Home mechanical ventilation difficulties in the last 3 months of life as reported by caregivers

In this pilot study, we assessed difficulties reported by caregivers of patients under home mechanical ventilation (HMV) during the last 3 months of life. We submitted a post mortem 14-item questionnaire to the main caregiver of all patients who died between 1 April 2000 and 30 September 2005 after having followed an HMV program in 11 Respiratory Units. We explored three specific factors: difficulties with use of oxygen and ventilator use, presence of tracheostomy, and organizational relation between home company and family. A total of 168 out of 174 questionnaires were collected. Minimal differences were found among diseases (chronic obstructive pulmonary disease, chest wall disease, amyotrophic lateral sclerosis and neuromuscular diseases) for most of the tested parameters. Time spent under mechanical ventilation (MV) (p = 0.024), oxygen supply need (p = 0.004), tracheostomy change necessity (p = 0.037), disposable materials (p = 0.037) and emergency call number availability from the home company (p = 0.001) were statistically different among groups. Only 15 % of caregivers had severe technical problems with the ventilator; the most frequent problem was ventilator malfunction. Suction problems, cuff rupture, tracheal decubitus, and pain were the major side effects in 20 % of tracheostomized patients. None had a tracheocannula dislocation. Family satisfaction about home care company services was, in general, very high, as well as for its prompt intervention. Family reported an extra cost increase in 30 % of the cases. In the majority of the cases, a pulmonologist was involved for problem resolution. As reported by caregivers and generally irrespective of diagnosis, caring for long-term HMV patients during their last 3 months of life was accompanied by minimal difficulties using ventilators and minimal need for tracheostomy assistance. Increased equipment needs and costs were relevant and satisfaction with the service received from home company high. These data, from a pilot descriptive study, indicate that specific studies of the impact of patient care on caregivers are warranted.