Tackling Medical Futility in Texas

For several weeks this spring, national attention was focused on a mother's struggle to prevent the Children's Hospital of Austin from withdrawing life support from her infant son. Emilio Gonzales 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. 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 respiratory-depressant 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 Austin consistently denied that they were motivated by financial considerations, concern about excessive expense may be an ethically legitimate reason to refuse continued treatment to patients like Emilio. Health care is not an unlimited resource, and physicians have an ethical obligation to ensure that it is distributed fairly. Unfortunately, the United States has been reluctant to adopt a systematic approach to allocating resources across the health care spectrum. Although futility cases may seem like an obvious target for cost cutting, the evidence suggests otherwise. Even if life support were consistently denied to patients whose situations met common definitions of futility, the monetary savings would be trivial.^3,4 This counterintuitive finding results from the facts that such cases are relatively rare (despite attracting considerable attention) and that the patients usually die within a short period, even when the requested life support is continued.

Aside from considerations of suffering, dignity, and money, clinicians may justify their refusal to treat on the basis of their right to refuse to participate in medical interventions that they believe violate their moral integrity. The moral distress associated with providing futile care has been cited as an important source of burnout among critical care nurses.⁵ But though these concerns can sometimes be ethically legitimate, they are questionable in cases like that of Emilio. The claim that continued life support for Emilio was morally objectionable was nothing more than an assertion that the values of the clinicians were correct while those of Ms. Gonzales were wrong.

So what is the answer? In cases of intractable conflict, the American Medical Association and others have recommended an approach based on due process as a fair method for reaching resolution. The gold standard of the due-process approach is an honest judicial system. The Texas Advance Directives Act seeks to incorporate a due-process standard by insisting that all allegations of futility go forward only after they have been reviewed and approved by the hospital ethics committee. In such situations, the ethics committee is acting, under Texas law, as a surrogate judge and jury, with the statutory power to authorize clinicians to take actions against the wishes of a patient and family, with protection against civil and criminal liability. But whereas the judicial system assures Americans of having a “jury of peers,” hospital ethics committees are not held to this standard. Although it is true that most committees include one or two members of the community (often grateful patients of the hospital), most members are physicians, nurses, and other clinicians from the hospital staff. Without in any way calling into question their motivations or intentions, we must recognize that they are unavoidably “insiders,” completely acculturated to the clinical world and its attendant values. This is hardly a “jury of peers” for a low-income woman of color and her infant son.

Of course, we could do better. Some have suggested setting up ad hoc ethics committees with a membership that truly represents the diversity of the local population, without any financial or social ties to the hospitals they serve, specifically to offer a more legitimate sounding board for difficult cases in which the hospital ethics committee could be seen as having a conflict of interest or a biased perspective.

But even this solution is not sufficient. As a liberal society, we take pride in protecting the rights of minorities against the tyranny of the majority. Of all the unpopular values and preferences that we might respect, should not we favor those that have life-or-death consequences for the persons involved? Families live with the memories of the death of a loved one for years; certainly their religious, cultural, and personal preferences during that process should be honored, or at least tolerated, whenever possible.

The principal advantage of the Texas Advance Directives Act is that it provides a path for resolving intractable dilemmas in situations in which clinicians may feel compelled to do whatever patients and families demand. The law may therefore serve a useful purpose when patients are subjected to unwarranted pain and suffering or when clinicians have defensible claims that these demands compromise their moral integrity.

On the other hand, the Texas law's effectiveness as a mechanism for reaching closure in difficult cases is also what makes it most problematic. It relies on a due-process approach that is more illusory than real and that risks becoming a rubber-stamp mechanism for systematically overriding families' requests that seem unreasonable to the clinicians involved. During a 2-year period at Baylor Health Care System, for example, the ethics committee agreed with the clinical team's futility assessment in 43 of 47 cases.¹ Although there may be cases in which the law should be used to trump the demands of patients and families, it is doubtful that the Gonzales case was one of them. Rather than jeopardize the respect we hold for diversity and minority viewpoints, I believe that in cases like that of Emilio Gonzales, we should seek to enhance our capacity to tolerate the choices of others, even when we believe they are wrong.