Ventilator-Assisted Living©

Spring 1990, Vol. 4, No. 1

ISSN 1066-534X

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Read selected articles from this issue ...

Quality of Life Perceptions of Ventilator-Assisted Individuals
John Bach, MD, and George Gombas, MD

Whatever Happened to Katie Beckett?
Julie Becket, Iowa City, Iowa

Health Care Reform
Debbie Poehlmann, Canoga Park, California

Notes from Australia
Hugh Newton-John, MD

Advocacy and Action By and For Ventilator Users

Kangaroo Kids: An Idea Whose Time Has Come
Judith Raymond Fischer

Don't Get Caught with Your Battery Down!
Jerry Daniel, Vancouver, Washington

One Person's Perspective
Debbie Poehlmann, Canoga Park, California

Musings: The Need for a Cat on Every Home Ventilator
Karan McKibben, PhD, Riverside, California

Custom-Built Mask
Marsha Ballard

Proceedings of the Home Mechanical Ventilation Workshop, GINI's 5th International Polio & Independent Living Conference, June 1989:

Home Care for Ventilator-Assisted Children & Adolescents
Allen Goldberg, MD, Chicago, Illinois

Sleep-Related Breathing Disorders
Oscar Schwartz, MD, Saint Louis, Missouri

Home Ventilation in Children and Adolescents
Virginia Nelson, MD, Ann Arbor, Michigan


Quality of Life Perceptions of Ventilator-Assisted Individuals

John Bach, MD and George Gombas, MD

With the availability of portable ventilators and the variety of noninvasive methods of assisted ventilation, it is unfortunate that many people with neuromuscular conditions and chronic hypoventilation are misdiagnosed early on and never appropriately counseled.

Many health care professionals who influence these individuals on options for ventilatory support may discourage use of these aids because of misperceptions about the individual's quality of life. A review of medical literature reveals a paucity of information regarding quality of life and life satisfaction perceptions in this population.

A survey regarding various quality of life issues was undertaken of 600 ventilator-assisted individuals with neuromuscular conditions, most of whom live at home in the New York/New Jersey area and who have an average age of 49 years, and 254 health care professionals with an average age of 33 years.

When asked, "Currently, how satisfied are you with your life as a whole?," 82% of the ventilator-assisted individuals responded that they were neutral to very satisfied (positive responses) with their lives in general. However, only 24% of the health care professionals thought that those individuals would respond in that manner.

Other aspects of the quality of life that were surveyed included satisfaction with health, social interaction, housing, transportation, education, employment, family situations, and sexual function. The percentage of ventilator-assisted individuals who responded positively to these issues follows: health 57%; social interaction 75%; housing 90%; transportation 78%; education 81%; employment 81%; family situations 87%; and sexual function 60%.

Most of the ventilator-assisted individuals were not dissatisfied with most aspects of their lives. When the same life satisfaction issues were asked of the health care professionals, the same number of subjects had positive responses to within +10% as did the ventilator-assisted individuals. In only three categories were there more positive responses from the health care professionals. They were in the areas of health, social satisfaction, and sexual function.

The results of this survey may help to alter our perceptions of how ventilator-assisted individuals view their lives. The results should discourage health care professionals from undervaluing the satisfaction with life that the majority of them individuals feels.


The Need for a Cat on Every Home Ventilator

Karan McKibben, PhD

Occasionally, when people first learn that I often hire untrained college students as live-in attendants, they seem to question my judgment in asking inexperienced strangers to be responsible for maintaining a ventilator. Their doubts most probably stem from the only image of a ventilator they have ever seen, the ICU image flashed on the TV screen every time someone wants to make a point about the wonders and/or horrors of modern medical technology.

Obviously, for home ventilator use, this image is inappropriate not simply because it is about fighting illness and death, but more importantly because it dramatizes the absolute dependency of the ventilator user and the mysterious complexity of the equipment involved. Dependency and complexity are, of course, just exactly what living with a home ventilator is not about.

When prospective attendants first enter my home and learn that some of the duties involve a ventilator, they do not see an intimidating array of medical equipment or hear an overwhelming list of responsibilities. Rather, they encounter a rather mundane home where a few pieces of medical equipment are almost lost in the clutter of books, plants, decorative and not so decorative knickknacks – the usual debris of daily living found in homes that have not been groomed for presentation in Better Homes and Gardens.

The explanation of ventilator duties is presented along with the explanation of household duties so that maintaining a ventilator appears no more mysterious than running a dishwasher or more demanding then dressing someone every day. And, invariably, just when a prospective attendant begins to conceive of the job as working with "life support" equipment, the cat leaps onto the ventilator, thoroughly demystifying the job and putting everything in its proper perspective: the perspective of an eminently do-able life. This perspective is important because it allows an uninitiated young person to begin working and to learn from experience that living with a ventilator is in fact as uncomplicated and manageable as living with a cat.

What also allows young, untrained students to begin working is the clear perception that, while they need to be responsible to me, they are by no means responsible for me. All of the various college students who have worked for me have understood that they would be the sole person upon whom I relied for essential services, yet all have realized that I, not they, would make sure that the equipment was running well and that they were doing all the right things.

Seeing from the beginning that they could depend on me for understandable instructions and appropriate decisions, students with varying degrees of resourcefulness and self-confidence have been able to remain calm and responsive when strange equipment malfunctions occurred or when those inevitable, unanticipated crises shattered the household routine.

But while it is unnecessary, even undesirable, for attendants to feel responsible for me, it is essential that they possess a wholesome sense of responsibility and that they be capable of carrying out that sense of responsibility.

Sometimes, however, an overactive libido overrules a good sense of responsibility as happened one dark night when a usually responsive young woman failed to respond to a call for assistance because she was in the upstairs apartment "visiting" a would-be rock singer.

Sometimes too, the recreational use of drugs undermines a decent sense of responsibility as I learned one other dark night when I found myself trying to communicate a disconnect to an ordinarily intelligent chemistry major whose drugged mind could not comprehend why the alarms were ringing and I was not talking.

And sometimes what appears to be an ordinary sense of responsibility is in reality unwholesome and even dangerous as I discovered with a sociology major whose need to accept responsibility turned out to be the pathological legacy of child abuse and whose own abusive tendencies were barely limited to verbal assaults.

It is fortunate that most college students who respond to ads for live-in attendants screen themselves and rarely place me in predicaments that cannot be tolerated. Indeed, most students come with a healthy mixture of economic self-interest and the altruistic desire to help someone who is disabled. They are well suited for a relationship of carefully circumscribed symbiosis – the kind of relationship cats have historically established with their live-in attendants.

Although initially these students may experience some anxiety over learning about strange medical equipment and over being the only person in the house able to provide essential services, they soon experience a certain amount of pride in doing tasks usually done by health professionals and helping a ventilator user live like a cat – with uncomplicated independence.

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