Our experience indicates that not only can ventilator-dependent persons be discharged from the hospital and cared for in their homes, but also that these individuals can be mobile, functional, and retain a good deal of independence. Although it is well known that patients with neuromuscular and chest wall diseases can successfully receive ventilatory support in the home, there has been mixed success in the home care of ventilator-dependent persons with COPD.
Sivak et al reported sending four patients with amyotrophic lateral sclerosis and six patients with other restrictive disorders home on mechanical ventilators, but suggested that COPD is a “relative contraindication” to home care. Dull and Sadoul in France retrospectively reviewed the records of seven patients with COPD sent home on ventilator treatment and suggested that their quality of life was not improved. Although mechanical ventilation resulted in decreased respiratory acidosis, there was no reduction in hospitalization after initiating home care. Another French group reported that ventilator-dependent patients with restrictive disorders managed at home had significantly higher survival rates and a better quality of life than persons with obstructive disease. Although home ventilation in COPD patients was felt to probably provide a lower mortality and improved life, the course of the underlying disease was not altered. Fischer and Prentice recently reviewed 29 selected patients (14 with obstructive lung disease) discharged on mechanical ventilators and found a reduction in hospitalization requirements after home care was begun. Feldman and Tuteur reported a single patient with bronchiectasis discharged on home mechanical ventilation.
Our results indicate that six of ten selected ventilator-dependent patients with COPD and all eight with restrictive disorders were able to be discharged home. Two factors, lack of family support, and severe dyspnea which limited activities and which was not improved by adjustment of ventilator settings, were associated with failure to discharge several of our patients.
Other investigators have not commented extensively on the level of independence or activities of daily living performed by patients receiving mechanical ventilation. Many patients with neuromuscular disorders have maintained some mobility, function and independence despite ventilator dependence, probably because the medical community has long recognized the need to provide not only medical care but also an overall rehabilitation program for such individuals. While pulmonary rehabilitation has become an accepted practice for ambulatory patients with COPD, the principles of rehabilitation have not generally been applied to ventilator-dependent persons with COPD. In the 22 ventilator-dependent patients with COPD receiving home care, reported in the English language, patient functional ability and independence have not been reported extensively. No comment was made on the function of the seven patients reported by Dull and Sadoul. A patient with bronchiectasis reported by Feldman and Tuteur was able to write letters and watch TV, but required 24-hour-a-day private-duty nurses, probably to perform respiratory care such as suctioning and ventilator monitoring.
Fisher and Prentice reported the activity status of only six of their 14 patients with COPD; one patient was confined to bed, two were housebound, one was occasionally able to travel outside the house, and two were “independent during the day” None of these reported programs focused on rehabilitation, and their primary goal was the reduction of the direct costs of medical care. Our program was begun with the dual goal of rehabilitation and home care, a goal achieved by the majority of our patients despite their continued need for ventilatory assistance. We believe that the psychologic benefit to the patient and family living together at home and the feelings of independence in patients who have some control over their lives argue strongly in favor of such a program.
The ability of patients to perform their own care greatly affects the cost of outpatient care. In some patients reported by Sivak et al, Feldman and Tuteur, and Banaszak et al, monthly home care costs were $5,000 to $12,000 because of the requirements for skilled medical personnel, such as nurses on a daily basis. Although we have not yet analyzed the indirect costs of home care including the family’s participation, many of our patients (Nos 2, 4, 7, 13 and 16) had working spouses and thus the indirect costs of home care probably do not substantially influence the cost-bene-fit ratio of home care. It is important to emphasize that many of our patients are self-sufficient, a goal of our rehabilitation program. The type of ventilator required by the patient is a second important factor in the cost of home care. Large, volume ventilators used in acute care hospitals are very expensive, but may be required to adequately ventilate patients with severe obstructive or interstitial lung disease. Small, portable ventilators are less costly. The amount of oxygen required and the mechanism by which oxygen is delivered can escalate home care costs. Our results are in general agreement with those of other investigators who have documented a reduction in direct costs with home care as compared to hospital care.
In conclusion, this preliminary communication has demonstrated the feasibility of a rehabilitation program to discharge home ventilator-dependent persons with obstructive and restrictive lung disorders to lead functional, independent lives. We are planning a more detailed analysis of the physical function, ADL performance, and psychologic status of patients before and after this form of pulmonary rehabilitation and an estimate of cost/effectiveness. Because of the high personnel costs of our in-hospital unit, and the experience necessary to make the program run efficiently, we suggest that similar programs only be instituted in referral institutions until the techniques of care can be further refined and standardized and more in-depth cost analyses are available. At present, the long-term prognosis for our patients is not clear. Nevertheless, we believe that the rehabilitation program described here provides ventilator-dependent persons with a hopeful alternative for an improved quality of life at home compared to continued institutional care.