Tackling medical futility in Texas.

n engl j med 357;1 www.nejm.org july 5, 2007 was an 18-month-old boy who had Leigh’s disease, a progressive and fatal neurometabolic disorder. He had been on life support in the intensive care unit for 5 months. The hospital had invoked the Texas Advance Directives Act, which authorized it to withdraw life support if an ethics committee had determined that further life support was medically inappropriate and provided the hospital gave the family 10 days’ notice and attempted to transfer Emilio to an alternative provider (see box). With the support of lawyers and a coalition of advocacy groups, Ms. Gonzales had successfully obtained extensions of the deadline, but Emilio died before the judge issued a final ruling on the case. The Gonzales case is the most recent in a series of famous “futility” cases, including those of Helga Wanglie, Baby L, and Baby K. All are stories about families’ insisting on the continued use of life-sustaining treatments that physicians consider to be medically inappropriate. Many of these cases are the product of a severe breakdown of trust in the relationship between the clinicians and the patient’s family. Even in the best circumstances, physicians often communicate poorly, and this deficiency is exacerbated when the communication must occur across the gaps created by language, class, and culture. Improvement of physicians’ communication and conflict-resolution skills would no doubt go a long way toward preventing such cases from occurring. But even impeccable communication and relational skills may not resolve conflicts that arise from fundamental differences in values between families and clinicians. In such situations, clinicians often justify their efforts to override the requests of family members by claiming that the continued use of life support is causing the patient unwarranted suffering or is contributing to an undignified death. Though sometimes valid, these arguments are difficult to sustain in cases like that of Emilio. First, patients who require mechanical ventilation can always be made comfortable with sufficient doses of sedatives and analgesics, since the ventilator prevents the consequences of the respiratorydepressant effect of these medications. Second, paradoxically, as Emilio’s neurologic condition worsened, his capacity to feel pain and to suffer actually diminished, reducing the moral force of this concern. Finally, regardless of whatever objections the clinicians may have had about the dignity of his death, his mother and others who spent time at his bedside clearly felt that his life was still dignified. Although the clinicians in AusTackling Medical Futility in Texas