Separated after birth The limits of autonomy
Lustig, Andrew
ETHICS WATCH ANDREW LUSTIG SEPARATED AFTER BIRTH The troubling case of the Bijani twins The field of bioethics cut its teeth on a number of high-profile cases (beginning with Karen Ann Quinlan...
...Doctors, after all, are not mere technicians of patients' desires, but professionals with specialized knowledge in their own right...
...In this tragic case, the balance between important but charlot competing values was not appropriately maintained...
...Nor do I care to imagine the chaos that must have developed in the operating theater as the Singapore team worked against much stiffer odds than it had anticipated (or admitted) before the procedure...
...Clearly, patients and, when necessary, their surrogates, have the right to make decisions about treatment...
...ETHICS WATCH ANDREW LUSTIG SEPARATED AFTER BIRTH The troubling case of the Bijani twins The field of bioethics cut its teeth on a number of high-profile cases (beginning with Karen Ann Quinlan in 1976) that established the right of patients and their designated surrogates to withhold or withdraw life-sustaining treatment...
...In hindsight, even that calculation seems unreasonably optimistic...
...Before the surgery, some members of the Singapore team set the odds of one or both of the twins surviving at "no better than fifty-fifty...
...They found the risk of death excessive...
...the twins' desire to go for broke took precedence...
...The surrogate refused...
...If the Singapore estimates are evidence of irrational exuberance rather than sober medical judgment, they call into question the "informed" nature of the twins' consent...
...With the advantage of hindsight, two aspects of the case seem especially telling...
...While the risks of the surgery were admittedly high and the physical risks of continuing their lives conjoined fairly low, the twins apparently judged the benefits of separation to be worth the gamble...
...Autonomy does not imply that patients have the right to demand treatments physicians judge to be unwarranted, harmful, or medically futile...
...Afterward, the specialist described the tension between his judgment and that of the twins' spokesperson: while everyone on the team agreed that "it might have been better to proceed in stages...
...I cannot imagine what their lives must have been like, or what led them to find their gamble, though misstated, so appealing...
...Nonetheless, doctors, by virtue of their specialized knowledge and experience, rightly contribute a separate calculus for ascertaining the likely medical benefits and burdens of such procedures...
...Those who judged the twins' surgery to be ethical whatever the odds of survival argued that the twins' lives were so abnormal, so restricted, that the twins were willing to risk all for the chance, however remote, of independence...
...Times have changed, and largely for the better...
...Wishful thinking, or the expectation of a miracle, is hardly the basis for such professional assessment...
...Still, that right is largely negative in character: to refuse treatment they find unduly burdensome...
...Still, for all my interest in and respect for patient autonomy, I wish to underscore the values that define medicine as a scientifically based profession...
...I question whether the information at the twins' disposal was accurate...
...Second, more than thirty hours into the actual operation, significant complications arose, prompting one prominent member of the Singapore team to stop the procedure and to attempt to convince the twins' designated surrogate to return them to the intensive care unit, stabilize them, and reschedule the separation for a later time...
...Still, a larger issue remains: what are the role and the importance of objective medical standards in such cases...
...Prior to the operation, proponents emphasized that the twins, as competent adults, were able to weigh the dangers of the surgery against their strong desire after twenty-nine years of being joined at the brain to live independent lives...
...Andrew Lustig is director of the Rice-Baylor College of Medicine Program on Biotechnology, Religion, and Ethics, and a research professor in Rice's department of religious studies.ligious studies...
...The case of the Bijani twins remains a troubling one...
...First, while the twins had tried for years to enlist doctors at other centers for the surgery, after reviewing the case physicians in at least six centers in Germany, England, and the United States refused to perform the surgery...
...In the wake of the twins' deaths, many questions have been raised about the risks associated with their surgery...
...What the sisters' attitudes might have been had the odds been more realistically presented to them will remain forever unknown...
...Should it have...
...Other surgeons, including some who refused the twins' earlier requests, set the odds much lower, at between 2 and 10 percent...
...In broader brush, bioethics developed against a backdrop of increased concern for human and civil rights, including the rights of patients to decide about their own treatment...
...If the value of autonomy always trumps in such decisions, the twins' deaths, while unfortunate, would require no further moral justification...
...I wonder whether what occurred was less an expression of therapeutic intention than an instance of unacknowledged human experimentation...
...Yet a number of commentators before and after the surgery have questioned its appropriateness not on the basis of what the twins wanted for themselves, but in light of what constitutes "reasonable" medical judgment regarding the risks they faced...
...Furthermore, while the Bijani sisters faced significant medical problems, including high intracranial pressure, surgical alternatives that are less radical would have been available to address those aspects of their condition...
...These cases, in turn, led to the introduction of living wills and to the passage of so-called natural-death acts...
...Yet despite the new emphasis on patient autonomy, a second, sometimes countervailing, value must be maintained in the clinical partnership between patients and physicians...
...For unlike extremely risky surgeries offered as a last resort to patients who are otherwise terminal, the Bijani twins, though desiring independence, faced no immediate danger...
...There are documented cases of conjoined twins surviving into their sixth decade...
...Indeed, in recent years, standards for avoiding medical futility have provided an important corrective to the idea that patients (or their surrogates) can demand any treatment they want, independent of medical assessment of its potential harms and benefits...
...The recent case of Laleh and Ladan Bijani, the twenty-nine-year-old Iranian conjoined twins who died in a Singapore hospital on July 8, after more than fifty hours of surgery aimed at separating them, highlights the tensions between respect for patient autonomy and professional medical judgment...
...With this newfound emphasis on patient involvement, an older version of doctor-knows-best paternalism could no longer survive unquestioned...
...Respect for autonomy means that patients are free to assess the burdens and benefits of their treatment and a proper reading of the Catholic notion of ordinary and extraordinary means of treatment supports this patient-centered focus...
Vol. 130 • September 2003 • No. 16
