Ventilator users

Bach JR, Alba AS. Sleep and nocturnal mouthpiece IPPV efficiency in postpoliomyelitis ventilator users. Chest 1994 106 1705-1710. 

Particularly of use is the Ventilator User Network (www.post-polio.org/ivun). 

Wood DE, Mathisen DJ. Late complications of tracheotomy. Clin Chest Med 1991 12 597-609. Bach JR, Alba AS, Saporito LR. Intermittent positive pressure ventilation via the mouth as an alternative to tracheostomy for 257 ventilator users. Chest 1993 103 174-182. 

In a study of 91 ventilator users with DMD, 51 went on to require continuous NIPPV for 6.3 4.6 (range to 25) years. None of the 34 full-time NIPPV users who had access to MAC died from respiratory complications, whereas three died from severe cardiomyopathy. Five patients with no breathing capacity were extubated or decannulated to continuous NIPPV and five became continuously dependent on NIPPV for one year or more without ever being hospitalized (15). It has previously been reported that DMD patients undergoing tracheostomy tend to have a prolongation of survival of about seven years but also have a tendency to die from complications related to invasive mechanical ventilation (IMV) (24). 

The major benefit of NPPV is the improvement in survival, although this has only been demonstrated in patients with NMD (16). In Denmark, the benefit of NPPV on survival of patients with Duchenne muscular dystrophy was evaluated between 1977 and 2001 (17). While overall incidence remained stable at 2 per 10 persons, prevalence rose from 3.1 to 5.5 per 10, mortality fell firom 4.7 to 2.6 per 100 years at risk, and the prevalence of ventilator users rose from 0.9 to 43.4 per 100. Ventilator use is probably the main reason for this dramatic increase in survival. An increase in survival has not been demonstrated in CF patients. 

There remains a widespread public perception that life for a ventilator user is of poor quality, despite reports that ventilator users adapt well to ongoing mechanical ventilation, recognize its positive impact, and would choose ventilation again if the opportunity arose (12-14). While ventilator dependency does not preclude the pursuit of a satisfying existence, ventilator users encounter numerous social and material harriers that isolate and exclude them from participation in community life. 

Miller and colleagues (15) surveyed 17 of the first adult ventilator users in the United States with neuromuscular conditions regarding their health, education, work, recreation, resources, and hfe satisfaction pre- and post-ventilation. The majority (11 of 17) indicated that their quality of life had declined over time and listed decreased mohihty, increased dependence, decreased community access, and decreased activity as factors. Progression of... 

Although ventilator users and their families experience frustration with the myriad of barriers encountered in daily life, they also report a number of sources of life satisfaction including advocacy, successfiil health management, and supportive relationships with family, friends, and volunteers (14). In Brooks study, a large majority of the ventilator users report that ventilation had a positive effect on their lives, resulting in improved sleep and concentration (13,14), as indicated by one participant ... 

III. Relationship Between Personal Support Workers and Ventilator Users... 

Personal support workers (PSW) play an important role in the lives of ventilator users, as unmet personal care needs are associated with poor health, especially in individuals with severe disability (29). Although the role of family carers, particularly among women, has received some attention (30,31), less attention has been focused on the work of paid caregivers. 

Noyes conducted 34 face-to-face interviews with young ventilator users and their families (36). Of the 12 subjects who were living at home, there were large differences in the services delivered hy PSW, with whom their relationship was often negative. Participants complaints included incompetence, poor communication, lack of respect for family and privacy, and lack of clear role description. 

Personal observations of family caregivers of ventilator users with ALS over a 22-year time frame... 

This chapter is dedicated to the late Edward A. Oppenheimer, MD, FCCP, who has served as a special colleague, mentor, and advocate of this long-term investigation. His dedication to improving the quality of life of people with ALS and ventilator users will always be remembered. The author also gives special thanks to the many patients and families who participated in the studies, as well as their physicians, nurses, respiratory therapists, and social workers. 

The best environment might be an intermediate option of an LTMV unit that is more homelike and less institutional in its functioning, where family members are directly involved in care, supported by trained staff. This model would enable the ventilator user to benefit from the best of both worlds, the support of technically competent professionals and the personal loving care of families. Our challenge remains to turn this ideal model into a reality. 

Figure 2 Median (interquartile range) center size for each country measured by number of home ventilation users. Denmark shows median only (range 250-253 fm its two centers). Source From Ref. 15.

Some communities have created a system under which home care patients are transferred to local hospitals in anticipation of an electric power failure or flood disaster. Local fire departments will also assist in the event of a power failure or need for evacuation. Some electric power companies will arrange power generators available for 24-hour ventilator users in case of an electrical failure. 

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