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By Michael Green, MD, MS. The Evanston Hospital, 2650 Ridge Avenue, Evanston, IL 60201. USA. and Benjamin Horowitz, MA. University of Illinois College of Medicine, Medical Scholars Program, 190 Medical Sciences Building, 506 S. Matthews Street, Urbana, IL 61801, USA. Published in Journal of General Internal Medicine, Vol 4, Nov/Dec, 1989.
I was taught that in medicine, as in life, it is best to be truthful. While I knew that sometimes it would be difficult to speak honestly with my patients, I never questioned whether it would be right to do so. Never, that is, until I met Mary.
Mary was a shy 23-year-old from a small Midwest farming community. She was pleasant and polite, but nervous with her role as patient. Choosing her words carefully, she divulged that she was concerned about two somewhat sensitive masses in her groin. They had been present for as long as she could remember, and although they caused her no great distress, she nonetheless wanted to have them checked out.
Perhaps she knew all along that the lumps were not her only problem, or that in themselves, they represented a superficial expression of a more significant internal disorder. Even so, she barely mentioned, and then only in passing, that while many of her friends were having children, she had never menstruated.
We talked. She had always been healthy. Nevertheless, her physical exam revealed several peculiarities: two round masses in her inguinal region and the absence of both a cervix and uterus. Otherwise, she appeared to be a healthy, normal 23-year-old woman. Her unusual physical exam and menstrual history raised my suspicion about a sex hormone problem. I ordered a number of confirmational lab tests, counselled her about the need for careful follow-up, and suggested that we biopsy and perhaps remove the two masses. She left the office, pledging to remain in close contact.
Later that week, I received the results of the awaited tests. Her serum testosterone was greatly elevated for a woman. My fears were confirmed; Mary was born with a rare syndrome known as testicular feminization, and was, in fact, genetically male. The two lumps were, in all likelihood, testicles that had never descended.
The disorder is an odd one. Affected individuals have the genetic material of a male, yet are phenotypically female. They appear female, are raised as female, behave and believe as female, and for all intents and purposes are female. It is an old sociologic question whether nature or nurture determines gender; here the experiment is performed by the body itself. The individuals, seen by themselves and by others as female, become females. Yet, as is clear with the case of Mary, they don't menstruate, they are sterile, and they lack a uterus, ovaries, and tubes. What, then, is Mary's true sex, and more urgent, what should I tell her?
If I were Mary, would I want to know that my sex is not what I have always believed it to be? As her physician, would I best serve Mary by telling her the truth, the whole truth and nothing but the truth, or should potentially harmful information be paternalistically withheld in order to protect her from the pain, confusion and humiliation of sexual ambiguity? If I told Mary, what should I say? Should I conceal aspects of her condition or should I simply reveal what had been discovered? Was I legally bound to inform her of all that I knew? Who else should know? Perhaps I should inform Mary about the details of her condition only if she wanted to know; could her option to remain ignorant be preserved without sacrificing her right to decide? The issues were complex, the solutions difficult. I had entered the gray area of medicine where right and wrong were not obvious, and where revealing the truth was not necessarily the best policy.
Part of the dilemma stems from the myth of full disclosure which maintains that we are both obliged and able to tell all. Really, we can never tell all, for no such whole truth exists; what gets told to a patient always depends upon someone's judgment. We are constantly deciding what information is relevant, and which aspects of it warrant emphasis. It is in part this ambiguity over how much one should disclose that makes paternalism such a turbulent and contested issue.
In addition to the question of what I should disclose was the matter of how I should communicate the information. Was I to tell Mary that, in fact, she was male, or was I to keep her lost but safe in medical jargon? I knew I could not regard my disclosure as simply objective. Still, I was troubled by the idea that really, there are facts of the matter, and that these should be disclosed. For example, I could describe Marys condition in genotypic and anatomical terms, explaining that Marys testicles needed to be removed, that she would be sterile, and that she might need hormonal supplementation. But how could Mary not hear jock strap when I told her she had testicles? What I really needed was a word for testicles without all the connotations of testicles. Since truth appears to lie in the meanings of words, I needed to choose carefully the words I would use to express Mary's condition.
Most important, I also had to understand Mary's perspective, else I would risk projecting my own values onto her. It is possible, for example, that Mary's condition had caused her problems unknown to me, and an opportunity to change gender would be welcomed. Unless I became aware of Mary's concerns, I could not gauge what information was most relevant or in what manner it should be communicated. In one sense then, my two questions, what I should disclose and how I should communicate the information, collapsed into one. I had to tell Mary something, but precisely what I would say depended on many different factors, among them what would actually be heard by Mary.
What seemed most clear to me was that I needed to know Mary better in order to promote her best interests. Still, I decided that my disclosure must be an honest one. My decision rested in large part on a respect for individuals' autonomy, for it is my belief that the value we attribute to human life and the respect we give it are based on the exercise of autonomy. One of our duties as physicians is to help patients shape their own destinies, regardless of our own preferences. To decide for Mary what she should or should not know would deny her the opportunity to exercise her autonomy. She had, after all, come in to find out if anything was wrong.
There were other reasons for my decision to tell Mary what I knew of her condition. I did not want to destroy her faith in the medical profession should she later come to discover what I had not told her, and I wanted Mary to have access to such information should it prove helpful in future medical situations. While the argument for paternalistically withholding information can be strengthened if we know the consequences of our failure to disclose, I nevertheless felt that my obligation to respect Mary's autonomy governed this situation. So, in the end, I concluded that I had to tell her all I could, albeit with the utmost sensitivity and discretion. Sensitive disclosure would, of course, require some amount of counseling. Even so, I hoped that the empowerment that comes with autonomy would outweigh the pain often associated with knowledge.
Unfortunately, in the real world where we practice medicine, we do not always attain the outcomes we desire. Much to my chagrin, Mary missed her next appointment, moved to another town, and I have been unable to locate her since.
I still believe that honesty is the best policy, but I also learned a new lesson from my experience with Mary; sometimes our own decisions are not the most important ones.