Ventilator-Assisted Living©

Spring 1993, Vol. 7, No. 1

ISSN 1066-534X

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Read selected articles from this issue ...

Communication for the Ventilator User with a Tracheostomy
Daniel M. Goodenberger, MD, Saint Louis, Missouri

The Cof-flator Revisited
Judith R. Fischer, California

Portable Positive Pressure Ventilators: A History
Jerry Daniel, Vancouver, Washington

Profile: Bill Kibbie
Betty Scharf, RN

Sailing with a Ventilator
Audrey King, MA, Toronto, Ontario, Canada

Mobility and ALS
March Ballard, San Francisco, California

Nasal Mask Adjustments

Potpourri: Books, Videos

Camps for Ventilator-Assisted Children

Communication for the Ventilator User with a Tracheostomy

Daniel M. Goodenberger, MD, Washington University, Saint Louis, Missouri

Daniel M. Goodenberger, MD, is a pulmonary specialist with a particular interest in the lung problems of people with neurologic and muscle diseases. He is on the faculty at Washington University, where he was Director of Pulmonary Fellowship and Director of the Internal Medicine Training Program at the time of this newsletter. (In 2003, he is Chief, Division of Medical Education, and Director, Internal Medicine Residency Program.)

Progressive respiratory failure may occur in a variety of situations. Diseases with worsening neuromuscular weakness commonly are associated with progressive difficulty in breathing; examples include the muscular dystrophies, post-polio syndrome, and amyotrophic lateral sclerosis (ALS or Lou Gehrig's disease). Severe deformities of the chest wall or spine, such as kyphoscoliosis or thoracoplasty, may cause progressive respiratory insufficiency.

Respiratory failure requiring mechanical support may also result from acute neurologic events, such as high spinal cord injury. In addition, marginally compensated individuals with chronic bronchitis or emphysema may deteriorate acutely, resulting in the need for mechanical ventilation; in some cases, these individuals may continue to survive only with the aid of long-term ventilatory support. In many of the above situations, chronic respiratory insufficiency may progress to the point at which ventilatory support is desirable even in the absence of any acute event.

A wide variety of methods of artificial ventilatory support, both negative and positive pressure, are available. Noninvasive positive pressure ventilation is thought of as a relatively recent development, although some variations of it have been used successfully by certain physicians for years. These noninvasive methods may forestall the need for delivering breathing assistance via an endotracheal tube or a tracheostomy tube, but, despite our best efforts, there are those for whom tracheostomy delivered positive pressure ventilation is necessary and/or desirable.

In addition to undergoing a surgical procedure, a major fear on the part of both patients and physicians has been that having a tracheostomy must necessarily interfere with the production of normal speech. It has been our observation that this may lead to the inappropriate refusal of mechanical ventilation by the affected individual, by his or her physician, or both. Unfortunately, many physicians (and many pulmonary specialists) are unaware that tracheal positive pressure ventilation does not necessarily mandate loss of vocal communication.

There are a number of options for communication for patients who require positive pressure ventilation via tracheostomy. Those who maintain muscle control may communicate by writing. This is, however, slow, cumbersome, and tends to truncate communication. Computer-generated mechanical speech has generally been reserved for those who have severely impaired speech at baseline (as in some cases of cerebral palsy), and for those who are unable to control the muscles of speech due to progressive illness, as may occur with ALS.

The Electrolarynx functions by producing vibrations which are applied to the larynx (voicebox). This generates sound in the larynx which can be formed into audible and interpretable speech by the other muscles of communication. The speech quality is somewhat tinny (sometimes likened to R2D2), but individuals' speech may be highly recognizable – we have routinely been able to identify individual patients over the phone.

The major disadvantage of the Electrolarynx is that it requires the use of the hands for application, and is therefore not appropriate for most patients with muscular dystrophy or spinal cord injury. Patients must also have normal function in the muscles of the mouth, lips, and tongue to produce intelligible speech. Additionally, many patients are somewhat hesitant about using this because of the feeling that it calls attention to themselves.

Some individuals who use only nocturnal tracheostomy-delivered positive pressure ventilation may revert to normal vocal speech during the daytime. During these periods, the tracheostomy tube must have the cuff deflated, or the patient must be ventilated with a cuffless tracheostomy tube. Speech may be accomplished simply by plugging the tracheostomy tube, in which case the patient breathes through the mouth and nose with air moving around the tracheostomy tube in the trachea (windpipe). The increased resistance to breathing may be too much for some patients; for that reason a variety of valves are available which attach to the tracheostomy tube and allow air to enter via the tracheostomy tube, but leave by way of the mouth and nose. With the exception of the Passy-Muir Tracheostomy Speaking Valve, none of these valves may also be used with a ventilator.

For those patients requiring 24-hour mechanical ventilation through a tracheostomy, several other communication options are available. Some patients may require mechanical ventilation with the tracheostomy tube cuff inflated. This may be necessary to prevent aspiration, although simply inflating the cuff during meals may be appropriate for those patients.

Some patients with chronic bronchitis and emphysema may be difficult to ventilate with the cuff down because their lung physiology is such that the adequacy of ventilation with an uncuffed tracheostomy tube is uncertain from hour-to-hour and day-to-day. However, it has been our experience that a substantial number of patients even with chronic bronchitis and emphysema can be ventilated with the tracheostomy tube cuff down. For those who cannot, the Electrolarynx may be used.

Another device, the Venti-Voice, is no longer available through retail sales, but a used one may be occasionally obtained. It uses switch-activated airflow to generate vibrations in the back of the nose and throat which may be transformed into speech by the muscles of vocalization. It is not generally recommended because of multiple problems, including poor voice quality.

"Talking" tracheostomy tubes are also available. These devices allow for the delivery of air into the larynx on demand from a source other than the air that the patient is breathing. Thus, the mechanisms of ventilation and voice production are completely separated. This air is delivered to the larynx by closure of a valve by the finger of a patient or caregiver. Relatively high flow rates are necessary to achieve adequate voice production. Problems with this system include plugging of the air outflow site in the throat by secretions, drying of the mouth and nose by the relatively high airflow rates required, the necessity for a compressor or other external air source, and the fact that plugging of a valve is necessary for speech production, which makes this inappropriate for the severely neurologically-impaired patient.

The best alternative for communication for most patients using mechanical ventilation via tracheostomy is with the cuff down or absent. As noted above, this requires that the patient has no trouble with chronic aspiration of food or fluids, that the vocal cord mechanism be intact, that the windpipe itself be clear above the tracheostomy tube, and that the patient has the ability to form intelligible speech (which may be absent in the later stages of ALS).

With this method of speech production, air enters via the tracheostomy from the mechanical ventilator, and exits (at least in part) through the mouth. As noted above, the tracheostomy tube must be cuffless or have the cuff deflated, and the tracheostomy tube must be of the appropriate size for the individual's trachea in order to allow adequate egress of air during exhalation.

Occasionally this may require direct inspection of the interior of the windpipe for adequate sizing. Most patients can produce adequate speech in the absence of any additional valves. However, because the air for speech production enters during inhalation, the affected individual must learn to produce speech during inhalation, which is counter-intuitive for many, but essentially all patients master this. Because speech occurs during inhalation, sentence structure tends to be somewhat choppy. With experience, many patients learn to develop relatively natural patterns of speech geared to their ventilatory cycle.

Diagram showing valve placement for use with ventilator users.Currently, there is only a single one-way valve, the Passy-Muir Tracheostomy Speaking Valve, available for use with the ventilator. This device, manufactured by Passy-Muir, Inc., allows air to enter the lungs through the tracheostomy tube, but it must leave by way of the mouth and throat. As a result, speech patterns can be more normal, with speech occurring appropriately during expiration, allowing for variation in phrase length. As an example, one of our patients runs a business requiring extensive phone contact. Most individuals speaking with her are unaware that she requires mechanical ventilation, and many of her casual acquaintances do not know of her mechanical ventilation, even while in her presence.

This form of speech during mechanical ventilation is best for patients with chronic respiratory failure due to neuromuscular disease. It is less appropriate and often more difficult in patients with chronic bronchitis or emphysema, for the reasons noted above. In addition, a significant amount of education may be necessary for both the patient and caregiver, although virtually all patients with a normal mental status and normal muscles of vocalization will be able to generate speech successfully.

In summary, tracheostomy positive pressure ventilation may be life-saving, and the prospect for excellent speech is quite good. In some individuals it may be even better than before, because breathing larger volumes may allow a stronger voice. Patients with substantial disability due to neuromuscular disease may find that mechanical ventilation with a tracheostomy changes their level of function very little. Many continue to lead a full life, which may even include international travel.

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