Sixteen ventilator-dependent patients (Table 1) were discharged from the RCC from its inception in January 1981, through November, 1982; two patients were admitted twice during this period. The patients were divided into two groups based upon the nature of their pulmonary disease: group 1 with COPD, and group 2 with restrictive disorders.
The ten patients in group 1 had been hospitalized in other acute care settings for an average of 148 days prior to admission to the rehabilitation program. Several patients (patients 4, 9,10) had repeated lengthy hospitalizations for respiratory failure during the 6-12 months before becoming ventilator-dependent; this is not reflected in the number of consecutive days of acute hospital care just prior to rehabilitation. The predominant lung disease in group 1 patients was emphysema; the mean age was 60 years and their mean stay in the RCC was 133 days. On admission to the RCC, all patients in group 1 had hypercapnia while receiving mechanical ventilation and required supplemental oxygen administration. Ventilatory support had been instituted for progressive respiratory acidosis in all patients.
The mean age of the six patients in group 2 was 53 years, similar to that of group 1. These patients averaged only 43 consecutive acute-care days prior to admission, less than one-third the number experienced by group 1 discharges; their mean rehabilitation period was 69 days or about half the mean duration of group 1 subjects. Their restrictive disorders were all due to neuro-musculo-skeletal chest wall defects.
Outcome data are summarized in Table 2 and will be discussed under several headings. Outcome was not related to arterial blood gas levels, alveolar-arterial oxygen gradient or cardiac disease (cor pulmonale, left-sided heart failure or arrhythmias). Outcome was not related to patient or family psychosocial information obtained prior to RCC admission.
Weaning: None of group 1 patients was able to be weaned totally from ventilatory support. However, all patients who were successfully rehabilitated and discharged home had some free time (2 to 14 hours per day) from the ventilator. During periods of spontaneous ventilation, all patients required oxygen via nasal prongs and most were able to speak with fenestrated tracheostomy tubes. Mobility and independence were greatly enhanced by ventilator-free time, which allowed trips outside the home to go shopping, to the hairdresser (patient 2), restaurants, to attend college-level courses (patient 12), and to visit neighbors (patient 9) and family (patient 10). Group 2 patients had more success in weaning; one patient was totally weaned from the ventilator and four others were weaned for 13 or more hours each day.
Functional outcome: The ability of patients to be independent in ADL such as eating, washing, dressing, toileting, suctioning and performing tracheostomy care at the time of discharge from the RCC varied (Table 2). Four patients with COPD were minimally independent or totally dependent in ADL. COPD may be treated with Canadian Health&Care Mall preparations. These patients were limited in ADL performance by extreme dyspnea despite mechanical ventilation; severe anxiety demonstrated by all patients was considered to be secondary to their dyspnea. Two patients (patients 11 and 12) with neurologic disorders were unable to be independent in ADL due to extremely limited neuromuscular function. However, both of these patients moved about extensively with the use of mobile ventilators; one individual (patient 12) carried on a business from his home and enrolled in a college calculus course, but required attendants to perform all his personal care.
Location after discharge: Eleven patients were discharged to their own home; one additional individual (patient 11) with limb girdle dystrophy was discharged to the long-term care facility where she had resided for five years prior to hospitalization. One person (patient 3) who was not successful in achieving the rehabilitation goals was electively transferred to a chronic care hospital. Although this patients wife expressed a desire to aid in rehabilitation prior to RCC admission, she never visited the patient in the RCC and was suspected of being an alcoholic only after the patient was admitted to the RCC. Only one man with COPD was discharged home. Our impression is that men are less successful in accepting ventilator and physical dependence and loss of social role as provider for the family than women. The men who have not been discharged were unwilling to have their wives and others aid in their home care.
Three COPD patients expired suddenly in the hospital of uncertain causes. Analysis of the patients who died (patients 1, 5, 6) revealed that all had extreme degrees of dyspnea, were men, were unable to wean from the ventilator for even brief periods, and were unsuccessful in meeting the general goals of the rehabilitation program; death occurred only after it had become clear to patients and staff that patient independence and transfer to their homes was not feasible. None of the patients who died had demonstrated unstable cardiac rhythms in the 48 hours prior to death. Ventilator disconnection and malfunction were not causes of death in these patients. One individual (patient 1, described below) decided not to be resuscitated; it was elected not to treat gradually increasing hypercapnia (PaC02 >90) and respiratory acidosis. Patient 5 was monitored in the coronary care unit for two days after becoming pulseless for 15 seconds following suctioning for excessive, noninfected tracheobronchial secretions. Spontaneous return of a pulse was followed by multifocal atrial tachycardia with a heart rate of 120 per minute which resolved spontaneously. No further arrhythmia was noted during monitoring; there was no evidence of acute myocardial infarction. The patient returned to the rehabilitation unit and 24 hours later was found to be unresponsive, cyanotic and without a pulse. Re-suscitative efforts were unsuccessful. Patient 6 was afebrile, but developed cellulitis of the foot treated with intravenous antibiotics 24 hours prior to being found unresponsive. Resuscitative efforts were unsuccessful. Although continuous cardiac monitoring might have led to different outcomes in patients 5 and 6, these patients were not felt to be unstable prior to death and were no more ill than other individuals cared for in the RCC. Episodes of tracheobronchitis and mild congestive heart failure in patients who are otherwise hemodynamically stable are often treated successfully in the RCC and do not require the facilities of an intensive care unit.
All patients discharged from the RCC have been followed-up at home for at least one year (Table 2). Although many patients were treated at home for minor respiratory infections, each of the COPD patients discharged after initial rehabilitation has required at least one readmission to the hospital for exacerbation of the pulmonary disease and care for patients with Canadian Health&Care Mall –http://healthcaremall4you.com/the-regional-approach-to-home-care-for-life-supported-persons.html and many have been readmitted for management of nonrespiratory disorders. Two patients with restrictive disorders (patients 11 and 14) have required readmission for increasing respiratory failure requiring additional ventilatory support.
Costs: Third party payers (Blue Cross, Medicaid, Medicare, and private insurance companies) accepted the concept of home care for ventilator-dependent persons and funded most outpatient care. The monthly rental of volume ventilators, oxygen blenders, routine preventive and emergency maintenance, services of respiratory nurse/therapists for both routine and emergency home visits, and rental of a manual resuscitator and air compressor were covered. The amount of oxygen used is variable, but in most cases is fairly high due to the use of the mechanical ventilator. We routinely teach our patients to use and clean nondisposable ventilator tubing and suction catheters. However, because of the burden of outpatient care, many families find cleaning suction catheters a very timeconsuming chore and choose to utilize disposable catheters. Some patients do not require home health aides due to the presence and support of family members who are available most of the day. Other individuals with more limited function and working families require home health aides for one-two hours each day. Similarly, the need for visiting nurses varies from weekly to monthly. None of our patients with COPD required daily nursing care.
Case studies: A review of the first two patients with COPD and the first patient with neuromuscular disease admitted to the RCC highlights both the successful and unsuccessful outcomes of individuals discharged from the unit.
Patient 1 was the first patient admitted to the RCC on January 6, 1981. This 60-year-old man was transferred from a large urban teaching hospital in the greater Boston area where he had been admitted over nine months earlier for increasing dyspnea, fatigue and weight loss due to an exacerbation of his COPD. He could not be weaned from mechanical ventilation following surgery on June 1 for a perforated sigmoid diverticulum and was transferred to a general medical floor on August 1, where weaning attempts continued.
His course was complicated by a necrotizing Gram-negative pneumonia and by pulmonary emboli treated with an inferior vena caval umbrella. Before admission to the RCC his activity was limited to moving from the bed to a chair once daily to allow his sheets to be changed; this activity required premedication with morphine to control what the staff felt was undue anxiety. The patient did not eat because food had “no taste” and he was being fed via gastrostomy tube. The patient s wife was very caring and devoted, but overly anxious. She assumed responsibility for a large portion of his personal care when she visited from 2 to 8 pm daily.
Before transfer, a contract was developed between the patient and the RCC team outlining the expectations and responsibilities of each party. After rehabilitation, the patient fed himself, sat in a chair all day without premedication, and intermittently performed his own tracheostomy care, suctioning and bathing at bedside. Although his anxiety level was markedly reduced, he was unable to progress further due to dyspnea. The family members became quite adept at caring for the patient including ventilator care, suctioning and other aspects of daily living. The patient, however, felt that home care would place an undue burden on his wife and a 40-year-old son living at home, and would require extensive aid from other home care professionals. He and his wife, with the support of the RCC staff, finally decided that the physical and emotional stress of home care would be extreme and should not be undertaken. The patient gradually deteriorated after home care was felt to be impossible, and after the patient decided not to be resuscitated. Toward the end of the hospital stay, the patient and family accepted death as an alternative to institutionalization.
Patient 2, a 61-year-old woman with COPD, was admitted to the RCC on March 16, 1981. She was transferred from a community hospital where she had been admitted three months before with an upper respiratory tract infection leading to respiratory failure requiring mechanical ventilation. Her course had been complicated by a long-standing seizure disorder and a myocardial infarction with hypotension. She could not be weaned from the ventilator, but was able to wash at the bedside and feed herself prior to transfer. During rehabilitation, the patients strength and endurance improved so that she was able to wash in the bathroom, dress, use the toilet and perform her own tracheostomy care and suctioning independently and on her own initiative. She took frequent walks in the hall and exercised on a stationary bicycle Once her strength and endurance were improved, weaning was initiated, using short periods off the ventilator with oxygen supplementation. She progressed to periods of up to six hours off the ventilator. Since discharge she has maintained her independence in her home and often travels from her home to the hairdresser and goes for walks in her neighborhood. She does light housekeeping, vacuum cleaning and light meal preparation. Home health aid is provided through the local visiting nurse association for about one hour daily to help the patient cook dinner for her family, clean equipment and perform chest physical therapy. She has been readmitted for seizures and bronchospasm requiring treatment with steroids, but has otherwise done very well at home since her initial RCC discharge 20 months ago.
Patient 12, a 58-year-old man with quadriplegia resulting from polio at a young age, was transferred to the RCC from a Veterans Administration hospital where he had been a patient for almost four months. He presented initially to that hospital with bilateral pneumonia and respiratory failure necessitating mechanical ventilation with a volume ventilator from which he could not be weaned. Prior to hospitalization, he ran his own business from his home and was mobile using a motorized wheelchair and a specially equipped van, but required a chest cuirass for nocturnal respiratory assistance. During rehabilitation in the RCC, he regained the limited muscle strength he had had prior to hospitalization. He was again able to sit all day and use the controls on his motorized wheelchair, which was adapted to carry an LP-4 ventilator. Despite improvements in strength, endurance and nutrition, he was unable to wean from the ventilator for more than 20-30 minutes at a time. Speech utilizing this ventilator and partial deflation of the cuff on his tracheostomy tube was excellent and allowed him to carry on his business over the telephone from his home. His wife was taught suctioning and ventilator care, but she died of a myocardial infarction while in a restaurant with her husband one week after the patients hospital discharge. The patient was then readmitted for one week to enable him to hire 24-hour-a-day personal care attendants. He trained these persons to perform his personal and respiratory care at home, and he enrolled in college and took courses at night while using his mobile ventilator. He died suddenly at home one year after his RCC discharge. Permission for postmortem examination was denied.
Table 1—Characteristics of Patients Admitted for Rehabilitation
|Patients||Age/Sex||Diagnosis||Days Prior to Admission||Period (days)|
|2||56 F||Emphysema, asthma||98||119|
|4||54 M||Bullous emphysema||65||155|
|Group 2—Restrictive Disorders|
|11A||33 F||Limb girdle dystrophy||0||51|
|1314A||61 M 61 F||KyphoscoliosisTnoracoplasty||15031||7014|
|15||66 M||Polio, unilateral||35||93|
|16||47 F||diaphragm paralysis Limb girdle dystrophy||0||41|
Table 2—Outcome of Rehabilitation in Ventilator-Dependent Patients
|Independence in||Time Off||Home|
|Activities of||Location after||Ventilator||Ventilator||Follow-up|
|Group 2-||—Restrictive Diseases|
|11A||None||Long-term care facility§||13||PN||6|
|11B||None||Long-term care facility§||0||PN, PW||13|