The Yale Journal for Humanities in Medicine

The "Diving Bell"
and the Medical Student

Prashant Tamaskar, B.S.

Here is a review of a very important "pathography," the story of a "locked in" patient who was able to write a book. The author of the review, a medical student, has learned how important it is to "be with" our patients, communicating with them by word and gesture and, I would add, by empathy. The ancient Greeks knew the importance of expressing feelings when they wrote about catharsis.

In medical school you are never told to stop caring. I’m willing to bet that during internship and residency you are never told to stop caring. Frankly, I doubt that any physicians ever really stop caring about their patients. But at some point, misunderstandings  have accumulated between doctors and patients, especially in the hospital setting, that have created the  perception that physicians are too jaded and cynical to act in the best interests of their patients.

Many of the literary works focusing on the medical field have done little to eradicate this fallacy. Or perhaps it is more accurate to say that the common interpretations of these works have not tempered the misconception. Take the immortal The House of God by Samuel Shem, for example. Any discussion of this novel centers on “GOMERS,” “BUFFING,” “TURFING,” and the other harsh elements that shock those who have never worked in a hospital and cause snickers of acknowledgment in those with experience in this atmosphere. But what is often lost in the analysis of “The House of God” is that the book is really about physicians, who amidst all sorts of madness, are wonderful caregivers. The Fatman, who coins and liberally utilizes the now famous floor lingo, is an amazing doctor who is revered by his patients. The set of interns, nearly broken down by their first year, overcome adversity in coming full circle from idealistic to cynical back to idealistic again. At the end of the story, we feel certain that the protagonists are on their way to being physicians who place the needs of their patients above all else. However, whenever the book is mentioned, people only seem to remember “GOMERS” and chaos.

In a much more subtle way, the memoir The Diving Bell and The Butterfly also casts physicians in a negative light. The author, Jean-Dominique Bauby, writes about his experiences in a French hospital after a stroke leaves him with “locked-in syndrome.” His characterization of doctors and other health care providers may be too  severe and a bit unfair. However, because of the poetic eloquence of Bauby’s prose, the reader gains a true appreciation for his frustration. And although his criticism of health care workers to me seems  too tough, there is  much a medical student can glean from this book that can only enhance our ability to take care of our future  patients.

The most remarkable aspect of The Diving Bell and the Butterfly is the optimism and resiliency of the human spirit manifested in the writing. Not all is positive. The writer feels  fear and immense sadness. Bauby surrealistically dreams of Radovan Karadzic performing a tracheotomy on him and being drugged in a dark basement nightclub with Ravel’s “Bolero” playing in the background. He writes about the pain of his own  father, imprisoned in his apartment by old age, and how “it cannot be easy for him to speak to a son who, as he well knows, will never reply” (Bauby, p. 45). He thinks of  his own son and how he has “lost the simple right to ruffle his bristly hair, clasp his downy neck, hug his small, lithe, warm body tight against me” (p. 71). Of Bauby’s suffering there can be no doubt. However, at no point does he lose hope or his  will to live. His main theme throughout is that his “diving bell becomes less oppressive” and that his “mind takes flight like a butterfly” (p. 5).

But what is it about this patient that prevents him from becoming as  despondent as one of us might be, and ultimately surrendering to his fate? The answer is, quite simply, he has not lost the ability to communicate. Though he cannot speak, through the help of his speech therapist who he refers to as his “guardian angel” (p. 39), Bauby finds a way to interact with the rest of the world. The process is a simple  one where the alphabet is read until the blink of his  eye indicates which letter to stop at. For  a highly educated, sophisticated man who was once editor of a major magazine, this serves as his salvation. Unlike others suffering from similar conditions, he has an outlet to express the emotions waging war within his mind. He is not left to drown in his own collecting thoughts. They are  released so that others understand him and continue to interact with him on the level of a peer. This ability to express himself helps him to  fight hopelessness. When told that street gossip characterizes him as a vegetable, Bauby writes “I would have to rely on myself in order to prove that my IQ was still higher than a turnip’s” (p. 82).His writing proves that he is no less of a person than before his stroke.

Of course, I felt that  the author has many advantages over others who are also “locked in”. He has enough money to receive reasonable care in the hospital. Someone else with less money might  not find  the same resources available. He has a wide network of friends who value language enough to use his communication system in order to decipher what Bauby really is saying, and not merely to put words in his mouth or guess at his thoughts. And most important, at his disposal, he has someone to take down all of his thoughts so they can be published to the outside world. This is a luxury that most other  patients  like him simply do not have. Bauby can be confident that those in the world outside the hospital will sense how the stroke has restricted  his life. Others will relate to  him in a way impossible to other  patients who cannot move or speak. This must have  provided at least a small feeling of empowerment.

Because he has a far greater range of communication than most other locked-in patient, Bauby becomes extremely frustrated with seemingly oblivious health care workers. In what is the most interesting passage of the book  from my  perspective, the author writes about a particularly distressing experience with an  ophthalmologist who has come to sew his  right eyelid  shut because it is not functioning properly. Uncertain of why this is being done, Bauby  is overcome with fear that the doctor might mistakenly sew up his left eye, “my only link to the outside world, the only window to my cell, the one tiny opening of my diving bell” (p. 53). After doing his job, the physician quickly leaves without saying more than three words, “the very model of the couldn’t-care-less doctor: arrogant, brusque, sarcastic…” (p. 53).

For a medical student reading this chapter, the author seems a bit unfair in his anger at  his doctor (and of other medical professionals, in general). After all, the physician did act in the patient’s interest by sealing his eye to prevent an ulcerated cornea. Moreover, perhaps the ophthalmologist was in a rush to complete other tasks and did not have the time to attempt to communicate with Bauby. Or maybe health care workers behave the way they do in order to  be of use in a field where the suffering can seem unrelenting and investing too much emotionally in patients can be your downfall.

However, none of these things are really important. My  main point is that the patient and physician are having a misunderstanding, which agitates  the patient. This chapter, along with the rest of The Diving Bell and the Butterfly underscores the importance of communication in health care. The book presents a most extreme case--a patient whose only means of conveying information is the blink of an eye. Yet, his eye  blinking becomes   a mouthpiece to the rest of the world, releasing negative energy building within him so that he can continue to live with  his affliction.

Unfortunately, some  health care workers block his outlet by refusing to communicate or by ignoring his system of relating.  By keeping silent, the opthalmologist becomes another   impediment to Bauby’s survival. He  is left desperate, feeling almost like a vegetable at this point. Whether intentional or not, the physician has highlighted his position of superiority, and left the patient he came to help feeling oppressed.  Bauby’s anger is lessened because friends, family, and kind souls like the speech therapist are willing to acknowledge his communication, so  affirming him as a human being on an equal level as them.  

The author survives because he has found  the opportunity to communicate on a complex scale. Is it really surprising then that he died two days after the publication of The Diving Bell and the Butterfly, once his desire to express his innermost thoughts on a grand scale, had been realized?

For a medical student, there is  much to be learned from this remarkable account. As future physicians we must realize that communication help the healing process and we must try to connect with our patients even if  we are not sure they understand us. It is so easy to ignore a seemingly unresponsive patient because talking to them may feel awkward or embarrassing. But we must overcome such  discomfort because we can never  be certain that a seemingly  comatose patient  does not comprehend us or at least appreciate our efforts. In fact, by not attempting to communicate and, more important, to  interact we may be standing in the way of patient improvement or the perception of improvement, which in some ways is just as significant.

Moreover, this can extend to far less critical situations, in the clinic or officve situation. setting. Perhaps by communicating effectively with a patient we may enhance the likelihood of a positive response. Certainly no harm will be done.  Bauby  wanted to be treated as a human , not to be viewed as an inanimate object. Not everyone is so blessed to have such an extensive network. The very least  we future  physicians can do is to make a concerted effort to speak with our patients  and not just at them. If that helps people, is this really too much to ask?           


References:

1. Shem, Samuel. The House of God. New York: Dell Publishing; 1978.
2. Bauby, Jean-Dominique. The Diving Bell and the Butterfly. New York: Vintage Books; 1997.

Please forward comments to:
Prashant Tamaskar
Medical College of Ohio
Toledo, Ohio
Class of 2003

Please also feel free to send responses to the Editor for publication.

Published: October 4, 2001