Having Words with Ethicists

The limits of my language mean the limits of my world.

—L. J. Wittgenstein

I. INTRODUCTION

One could characterize the entire history of bioethics in North American as consisting of a series of skirmishes over the precise meanings of words.

At a recent conference I watched a fascinating example of this as two scholars debated whether artificial feeding was “natural.” One of the scholars, a philosopher, argued that removing devices such as feeding tubes should be viewed as the removal of an acquired external imposition by medicine upon the natural body. The other, a scholar of disability studies, argued that there was great danger in seeing artificial feeding in this way. She noted that she had many friends for whom the daily intake of nutrition through GI tubes was viewed as perfectly natural to them. Why so much intellectual work over this issue? For those in bioethics such distinctions have profound consequences. If we view GI tubes as no more unnatural than using a fork and knife then refusing a GI tube should be viewed by health care professionals with as much distress as a patient refusing to take food by mouth.

The trouble with the battle over words in bioethics is that it isn’t always glory. What I mean by “glory” is that it isn’t always a nice knockdown argument. Of course, you may protest, as Alice does to Humpty Dumpty in Through the Looking Glass (2002):

“But ‘glory’ doesn’t mean ‘a nice knock-down argument,’” Alice objected.

“When I use a word,” Humpty Dumpty said in rather a scornful tone, “it means just what I choose it to mean—neither more nor less.”

“The question is,” said Alice, “whether you can make words mean so many different things.”

“The question is,” said Humpty Dumpty, “which is to be master—that’s all.”

In the issue of which is to be master, a particularly telling example has been that concerning “death.” In the newsletter of the University of Pittsburgh’s Consortium Ethics Program there was a case presentation titled “Brain-Death and the Optimistic Family.” Following a sudden stroke, a 23-year-old-man was taken to an ICU, and, after three days, a neurological evaluation determined that he was “brain dead.” The family did not accept this finding and insisted that the patient be kept on a ventilator and cared for by the medical team. After three neurological consultations, the family “felt the doctors and the hospital were attempting to kill the patient due to his lack of medical insurance.”

The hospital decided eventually to discontinue any care for the patient. “The following day the attending physician again performed the standard physical exam with apnea test in the presence of the family. When the patient did not breathe spontaneously during the apnea test the ventilator was not reconnected and the patient ‘died’ within minutes.” The scare quotes around “died” in this sentence are quite telling: one imagines the writer had difficulty finding an alternative word. The need to use the word “died” for a patient that was already considered “dead” suggests just how unstable the word is, even as it seems stable to the hospital.

In his commentary on the case, Jon Merz seems certain that the patient “has died, medically and legally,” and it is the ability to think of someone as either being alive medically and dead legally or dead medically and alive legally that once again reveals how mutable this word remains. The question that lingers is truly who is to be master.

Bioethics remains a particularly important and interesting place to look at our culture’s keywords. This is because as with “death” and “natural,” in bioethics disagreement over the meaning of words has been where the action is. Once a definition wins over other definitions, the consequences can be profound. Define “suicide,” “consent,” or “competence” in a specific way and the lives of particular individuals will be affected in extraordinary ways. As those in bioethics know well, the potential dominance of particular definitions would have altered the narratives in the cases of Dax Cowart, Joyce Brown, and David Rivlin. The manner in which their stories seem incongruous with the meaning of the such words as competence have forced bioethicists to rethink these words.

For this issue of the Journal of Medicine and Philosophy, the inspiration and model for our interest in the language of bioethics is the work of the English cultural studies scholar Raymond Williams. As he observes in his book Keywords, his original concern was the word “culture,” which he came to conclude “is one of the two or three most complicated words in the English language.” It would be incorrect to understand Williams’s project as simply an interest in the origin of certain concepts. I know physicians who, whenever there is a dispute over a concept, will immediately turn to the Oxford English Dictionary to show the word’s original meaning. But Williams was intrigued not with a word’s original meaning but with the origin of conflicting meanings, the point at which diverse and divergent meanings began to develop.

A keywords approach to bioethics should examine not simply how words have been defined within academic bioethics but the places where there is divergent meaning between the discourse community of bioethics and other discourse communities. The word natural may very well have a different history within the discourse of bioethics than it does within the disability community, for whom natural may be a word that they have been trying to redefine in opposition to that of legal and medical discourse.

A keywords approach also provides a way of understanding how debates and arguments over meaning do not simply reflect changes in values but emphasizes “that some important social and historical processes occur within language.” Such an awareness seems particularly important to bioethics as it enters into its intellectual adolescence and thus begins to reflect upon its identity. And, like an adolescent, it is not doing so with very much rigor. One could cite David Rothman’s 1991 Strangers at the Bedside as the beginning of this self-reflection, but by Rothman’s own admission the methodology he used to trace the history of bioethics was more subjective than he normally utilizes.

Albert Jonsen referred in public discussions of his book The Birth of Bioethics as more of a “memoir” than a “history.” Social scientists have also not applied the rigorous method when reflecting on the bioethics movement; their key informants seem to be themselves. Furthermore, these various reflections tend to present bioethics as a series of discrete movements in social institutionalization and professionalization. Attention to institutional and professional identity is important in understanding the development of bioethics in North America. But such a focus does not portray the way bioethics as a movement has been a struggle not just over organization but over meaning. In the end what can be gained in approaches such as those looking at keywords is not a resolution to disagreements over meanings but a more humble goal. It offers, in Williams’s own words, “perhaps, at times, just that extra edge of consciousness.”

The words in this issue of the Journal of Medicine and Philosophy have not been selected because they are the most essential words within bioethics but rather because they represent words that benefit from a keywords approach. One can only hope that this will inspire others to take a similar approach to other words in bioethics. In the edition of Williams’s book that I own, the last 10 pages are blank and are marked as “Reader’s Notes,” and I suspect that he anticipated that others would add their own words and observations to his own, that he did not have the final word. I anticipate the same.