The patient, a 6-year-old girl, suffered a stroke with severe brain damage shortly after major abdominal surgery. Her doctor asked the girl's mother to agree that should the girl's heart stop, no attempt would be made at resuscitation.
The mother refused. Over the next few months, with the patient incurably ill and in great pain, the mother repeatedly refused the requests of doctors to let her daughter die, forcing repeated operations and use of cardiopulmonary resuscitation (CPR) to revive the child. Finally, the mother relented. Ten months after surgery, the girl died.
This case history, taken from the current issue of the Journal of the American Medical Association (JAMA), is testimony to one of the most controversial issues in contemporary medicine: who should have the final say about whether to keep the incurably ill alive.
Since the early 1980s, many hospitals have required doctors to obtain consent of families or the patient before issuing so-called do-not-resuscitate (DNR) orders, which stipulate that if an incurably ill patient suffers a heart attack, no attempt should be made to administer CPR.
The hospitals put those rules in place in an attempt to counter the perception that doctors had too much control over the destiny of patients. But now, a decade later, many in the medical community believe the policies have resulted in unnecessary suffering and futile medical procedures, keeping patients such as the 6-year-old alive long after humane medicine dictates allowing them to die.
Doctors, they say, should be permitted to let the dying die without obtaining consent of families or patient.
"I think we're beginning to see problems with a wholesale commitment to the concept of the rights of familes to make decisions on behalf of incompetent patients," said J. Chris Hackler, an ethicist at the University of Arkansas and co-author of one of three articles in the current issue of JAMA addressing the issue.
"Certainly that is important, but that is only if the family members are trying to make the decision the patient would be making or making a decision in the patient's best interest. If they are not doing that, then the patient's interests are not being served," Hackler said.
The debate turns on how and under what circumstances doctors may issue the DNR order, stating that the use of CPR is no longer appropriate. In some cases, such a judgment is clear-cut. Medical data on CPR, for example, show that it is only rarely successful in prolonging life for any length of time, particularly for the elderly.
But the decision about when resuscitation is futile is so clearly laden with value judgments that hopsitals generally require that either the patients or their families give their consent.
For instance, "futile" could be defined not just as when further intervention cannot prolong life but when it might only have a limited chance of prolonging life, or when risks of further treatment outweigh benefits, or when the patient no longer can expect a reasonable quality of life. Doctors and families of patients might reasonably differ on any of those points.
But while many doctors agree that consulting with the family under such circumstances is important, they say that giving the family ultimate authority about whether to issue a DNR order is a mistake.
"There are times when a patient has no chance of survival, but the family, for its own psychological reasons, insists that treatment continue," said Michigan State University ethicist Tom Tomlinson, co-author of another of the JAMA articles. "They may seek CPR as a way of sustaining their own denial or avoiding confrontation with the realities of the situation. If that was a course of action that had no harm to the patient, that might be a reasonable way of meeting the family's needs. But that is often not the case."
Tomlinson argues that when a doctor offers the choice of CPR in cases where it is futile, a misleading impression of the benefits of medical treatment is given and doctors evade their responsibilities to be honest about the prospects for a patient's survival.
"Frank discussions about impending death are difficult for everyone," he said. "Offering futile CPR can provide a way for the physician to avoid the real problem."