Ventilator-Assisted Living©

Fall 1990, Vol. 4, No. 2


Musings: Into the Wonderland
of Words and Ventilators

Karan McKibben, PhD, California

In the last issue of IVUN News, there was an invitation to comment on the terminology commonly used to refer to people who rely on ventilators. The main objections to the three terms used most often were then indicated, and they set one to wondering whether there is any terminology that is unambiguous and at the same time politically sensitive to the concerns of the readers of IVUN News.

The term "on the ventilator" illustrates well some of the problems. In a hospital setting, where the focus of communication is on immediate physical concerns about bodies, machines, and drugs, referring to a patient being either on or off the ventilator seems as acceptable as referring to a patient being on or off a specific drug. However, if the context is broadened to include the possibility of a future life outside the walls of an institution, the term becomes not only crude but quite illogical. One can hardly offer to someone living long and happily "on the ventilator" without insinuating that being "on the ventilator" may be something akin to being "on the reservation."

"On the ventilator" presents further difficulties because the preposition can be taken literally, leading the reader into an Alice-in-Wonderland state of mind where there is a crazy confusion over whether "on" might not really mean "under." I once got so lost in this Wonderland, while "on the ventilator" and in a hospital context, that I could not make sense of the German short story I was attempting to read. When the protagonist was described as being "unter dem Ventilator," the only image I could conjure up was one resembling the cartoons drawn by Audrey. It took a strong dose of common sense, and a good look at the context, to figure out that "ventilator auf Deutsch" can mean ceiling fan and that the image intended more closely resembled the bar scene from Casablanca than a surrealistic ICU.

With "on the ventilator" relegated to hospital-speak, those wishing to speak seriously about long-term reliance on ventilators frequently turn to the term "ventilator dependent," despite the negative applications of the word "dependent." Admirably straightforward, this term has a place in contexts where the focus of discussion is on the fact of physical dependency. To avoid Alice's Wonderland, it helps to call a spade a spade, and when discussing physical dependency on ventilators, saying so without slipping into murky euphemisms helps to achieve clarity, which is of course the goal of informative, as opposed to persuasive, communication.

However, when the context is broadened to include a social environment, calling attention to this physical dependency is clearly undesirable, and "ventilator user," with its implication of control, is the term of choice. It may even, as has been noted elsewhere, perform the political function of empowering the user and enhancing the perception of independence, although one wonders how much power can be conferred by tinkering with word choice.

The chief advantage of "ventilator user" is that "use" is a common word capable of a wide variety of syntactical arrangements and of making the use of a ventilator sound as common and natural as the use of a toothbrush or a can opener. Not calling attention to itself, this unpretentious term is clearly user friendly.

Even so, as has been observed, "ventilator user," with its implication of choice, seems inappropriate in a context focusing on children and infants. Certainly an infant of five months can hardly have enough autonomy to exercise choice and thus properly use anything. Substituting "assisted" for "user," however, does not wholly overcome this objection since the word "assisted" is most often used in context with an adult doing something complex enough to need assistance.

Further, the syntactical possibilities of "ventilator assisted" lead right into Alice's Wonderland by allowing the reader to ask just what exactly the ventilator is assisting the infant to do. If the answer is that the ventilator is assisting the infant to breathe, "ventilator dependent" would probably be a better choice because it is less ambiguous, and, in the context of infants and children who are commonly considered to be dependents anyway, "ventilator dependent" seems appropriate.

But there are undoubtedly other objections, and finding a perfect word suitable for all contexts is as difficult as finding the exit to Wonderland. Though one may hope to meet the main objections with carefully considered word choices and though one may hope to control the meaning of those choices with sharply focused contexts, this control is as fragile as Humpty Dumpty, who said "in a rather scornful tone" just before falling, 'When I use a word ... it means just what I choose it to mean – neither more nor less." To keep from falling, about all one can do is to understand the full meaning of the words one chooses and to match those words as closely and unambiguously to the truth as spelled out in the context.

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