"Visitor II", from the series Bearing Witness, by Boston artist Michael David.

The patient was a seventeen-year-old girl from an Orthodox Jewish community on the East Coast. Three weeks prior to admission, she had gone to her rabbi's wife to discuss Jewish laws regarding marriage in preparation for her upcoming wedding. As was the custom in her community, the wedding had been arranged. She had met her fiancé only once.

In the course of the marital counseling, it was discovered that she had dysfunctional uterine bleeding. This led to a medical evaluation, the eventual discovery of uterine cancer, and referral to our hospital, one of the top centers in the world for treatment of this cancer. The recommended treatment was radiation followed by a hysterectomy, which would of course leave her infertile.

When her father heard the medical recommendations, he requested of the doctors that they not tell his daughter that the treatment would leave her infertile. He thought that the news would be emotionally devastating—both in itself and because he feared that it might lead to the cancellation of her marriage. Because she would be infertile, her fiancé would no longer be obligated to marry her. The call for the ethics consult asked, "Do we have to tell her that she will be infertile?"

Well, in one sense, it was easy. Informed consent, respect for persons, truth telling. From a risk-management point of view, it was a no-brainer. You tell her; if she refused treatment, that's her choice. It may be tragic, but it isn't a tort. Treat without consent and she sues later; it is at least malpractice and maybe assault and battery. From a bioethics perspective, these legal considerations reflected appropriate moral concerns. Not to tell would be paternalistic, and in bioethics there is no greater sin than paternalism, although that might be hard to explain to her father.

But from another perspective, it seemed a little more complex. Were we really concerned about the patient's interest or about the hospital's? Whenever ethics and risk management agree, a red flag should go up. Furthermore, the legal and moral principles that we were relying on were neither timeless nor universal. If she had not been in the United States, or if it had been twenty-five years earlier, nobody would have told her. She was a minor. Her parents had the right to make decisions for her. In addition, her religion did not acknowledge the importance of autonomy. As her father said, "She must have the treatment. It is required by law. Why add to her suffering now, when she needs hope and strength?" Clearly, he had her best interests at heart.

The ethics committee meeting was a little acrimonious and inconclusive. Arguments flew about beneficence and autonomy, patriarchal religions and sexism, culture, families and parents. The conversation was intense.

We gave the gynecology service lots of good arguments on both sides but no consensus. They decided that she had to be told.

A family meeting was convened. The doctor didn't pull any punches. He wanted to tell her the honest truth, to make certain she understood, not to give any false hopes. He succeeded. After an hour of such talk, the conversation ebbed to silence. A pall hung over the room. Finally, the girl muttered something and walked out of the room. Her mother ran after her. Her father slumped down in his chair. "What'd she say?" we asked. "She said she doesn't want the treatment." He looked at us as if we were monsters.

Did we do the right thing? We followed all the rules. Our actions were based on adherence to the most idealistic moral principles. In a certain sense, what we did was unassailable. In the most difficult and trying circumstances, we had confronted ugly truths instead of hiding from them. We had helped a patient, who clearly had the capacity to make her own decisions, to understand the choices before her, and to make a choice based on her own deeply felt moral values. This was a triumph for patient autonomy, for feminism, for children's rights, a culmination of twenty-five years of work in health law, civil liberties, and bioethics. But it felt as if we had betrayed everything that medicine stands for and had become zealots in a cause that looked less like moral excellence and more like political dogma.

Unlike many stories, this one had a happy ending. The girl returned a few days after the family conference saying she'd changed her mind and wanted treatment. She signed the consent form without reading it. What had changed? Over the weekend, she'd spoken to her rabbi. Without any disrespect for the doctors, he said, "If God wants you to have children, you'll have children. Not to believe that would be worse than death. It would be idolatry."

Her fiancé did not forsake her. In fact, as we were later to learn, he spent two hours each day praying for her, reciting the entire Book of Psalms every morning. Six months later, her cancer in remission, they were married. They planned to adopt children.

From the series "Eight Embraces" by Michael David.

A happy ending! So what's the problem? As Abraham Lincoln noted in describing the start of the Civil War, everybody struggled to do what was right as they saw the right. The rabbi interpreted Torah and Talmud to come to a truth that differed somewhat from the truth of the doctors. Could the doctors have offered hope in the same way the rabbi did? Perhaps. But they felt morally bound to convey the truths of science, not religion. The parents stood with a foot in each truth community, clearly trusting the doctors with their daughter's life but not trusting the doctor's moral vision. The young woman chose life over death and obedience to her parents and teachers over an individualistic tragedy that her doctors and lawyers would have allowed.

What about her fiancé? He, it seems to me, went beyond what was required or expected. How many teenage boys would remain steadfastly loyal to a girl they had only met once, and marry someone whom they new would never be able to have a baby, might even have trouble having sex, and might die? Caught up in a situation beyond his experience or imagination, he made a choice that embodied the highest moral ideals and that determined the ultimate outcome of the story. The happy ending was not a triumph for individualism, autonomy, patient's rights, or truth telling. It was a triumph for steadfastness, loyalty, interdependence, and faith. It was less about people following the rules and more about people living in a world in which situations constantly force them to go beyond the rules. The ethics committee, it seemed to me, was doing something that had far less to do with ethics than what that young man was doing. And what he did, rather than what they did, was what really mattered.

Copyright (c) 1997. From Do We Still Need Doctors? by John Lantos, M.D. Reproduced by permission of Routledge, Inc.