PERSPECTIVE

The Stories We Tell Ourselves

By Nancy M.P. King

The world was captivated by the story of the Bijani twins even before the surgery that fatally separated them. Ladan and Laleh were the first adult craniopagus twins on whom surgical separation was attempted. An international neurosurgical team convened at Raffles Hospital in Singapore in July, with the Iranian government footing some of the bill. The risk of death for one or both sisters was reported as fifty-fifty: pretty good odds.
This dramatic story was easily reducible to dichotomies: autonomy versus beneficence, patients' choices versus doctors' responsibilities, elective versus indicated procedures, caution versus hope, freedom versus death. Yet for me, the story of the Bijani twins exemplifies a key bioethics issue: the complexity of uncertainty and optimism in medicine.

The sisters were decisionally capable adults. They weighed the increasing burdens of their condition against an unproven intervention with a low likelihood of success and a high risk of death or greatly impaired survival. They reportedly wanted to be separated regardless of the consequences, even preferring death to remaining conjoined. I do not think the surgery should have been refused or prohibited. But I hope they were privately told that the likelihood of either's survival was much lower than was publicly discussed.

I doubt they were. I cannot impute lack of candor to anyone who told the story of the surgery to the media, but I was surprised to read that the neurosurgical team had not anticipated the thickness of the twins' skulls or the difficulty of separating their brains' blood supplies. It is hard to believe that everyone failed to foresee the complications they encountered. Instead, I suspect, they probably disguised some things from themselves. Overestimation of benefit is common in medical innovation, perhaps especially in surgery. The intent to benefit patients, the need to believe in the possibility of success, and the rewards (both spiritual and material) of altruism can foster unwarranted optimism, influencing how providers think about potential harms and benefits, how they inform patients, and thus how everyone discusses the decision.

I wish a different conversation had taken place, one including some knowledgeable but disinterested people, so that all information and choices could have been challenged and fully explored. An IRB-like model seems necessary; yet with the right sort of conversation, such a model doesn't need the IRB's "teeth." A conversation that really wrestled with this difficult decision would make it easier to have confidence in any outcome. (The hospital reportedly has an ethics committee, but no information about it was available on its web site at this writing.)
Who should take part in that conversation? Such captivating cases complicate the problem of how to address both the rights and interests of individual moral actors and the priorities and needs of populations and communities in health care. Difficult decisions always involve more than doctor and patient. Many people and institutions had stakes in the Bijani sisters' story, for many reasons; all depended on the story as it was told. I would like to know that the sisters' family and friends, the Iranian government, the individuals and institutions supporting the generosity of the team and hospital, and perhaps even the media and the public could have some access to the different conversation I envision.

In asking for a different conversation, I am not asking for a different outcome-not even for less uncertainty. Uncertainty and tragedy are inescapable, but sharing stories in a different conversation can make them better, richer, more ethically thorough. A different conversation might have led to the same result, yet with a different understanding of motivations, or changes in reasoning: the same outcome with a different meaning.

Nonetheless, a habit of different conversation about what matters to us in health care will ultimately lead to changes in individual and public choices. Instead of helping us pretend to escape uncertainty and tragedy, our conversations could help us face them. This would be an achievement far surpassing what the surgeons learned from Ladan and Laleh.

Nancy M.P. King teaches social medicine at the University of North Carolina School of Medicine.

This essay appears in the September-October 2003 issue of the Hastings Center Report.