Futility policies, like all institutional policies, attempt to bridge the gap between the cultures of medicine and the law—doctors trying to say legal things, lawyers trying to say medical things. In the United States, at the federal level, the Uniform Health-Care Decisions Act states: “A health-care provider or institution may decline to comply with an individual instruction or health-care decision that requires medically ineffective health care or health care contrary to generally accepted health-care standards applicable to the health-care provider or institution” (Uniform Health-Care Decisions Act 1994, section 7, subsection f). It further clarifies that “medically ineffective” health care means “treatment which would not offer the patient any significant benefit” (Uniform Health-Care Decisions Act 1994, comment on section 7, subsection f). This statute has already been adopted by more than a half dozen states. In addition, professional societies—including the American Medical Association, the Society for Critical Care Medicine, and the American Thoracic Society—have published guidelines on medical futility.
Working groups of professionals and laypersons throughout the country have started to develop consensus-based futility hospital policies (Halevy and Brod 1996; Murphy and Barbour 1994; BANEC Nonbeneficial Treatment Working Group 1999). I led one such consensus conference. In order to keep it—in that much-maligned phrase—“fair and balanced,” I asked a professor of law, Alexander Capron, who opposed the concept of medical futility, to be my co-chair (Schneiderman and Capron 2000). There were seventy-four participants, consisting of physicians, attorneys, judges, and nurses, members of the clergy, social workers, and community representatives, representing ethics committee members from thirty-nine hospitals. The participants came from northern and southern California, from religious and secular institutions, from academic, managed care, and community hospitals, and from within and without the health care profession.
Contrary to the claim of some critics that the concept of futility could not be meaningfully defined, most of the participating hospitals independently crafted similar definitions of the term. During the proceedings I observed that physicians tended to seek specific and descriptive definitions of futile, inappropriate, or burdensome treatments. By contrast, lawyers and judges were more concerned about putting in place detailed procedures that protect vulnerable patients. I concluded that policies on futility should provide both specific definitions and a well described dispute resolution process that will bear scrutiny by outside, impartial observers.
When cases come to court, and on appeal to higher courts, it will be judges who decide whether professional judgment is in line with society’s expectations. Judges will ask: Where does the medical profession stand? What standards does it profess? And, most tellingly, how does it behave?
Hospitals are likely to find the legal system willing (even eager) to defer to well defined and procedurally scrupulous processes for internal resolutions of futility disputes. Although courts are capable of providing due process protections, judges are largely unfamiliar with the complexity of medical treatment and are neither expected nor even able to follow up medical outcomes once they have entered judgment; it is the physicians seeking to cease futile treatment—and not the judges who are called upon to rule on the case—who have to live with the decision. For example, a judge who assigns a guardian and orders that a severely disabled child be kept alive rarely sees firsthand the long-term consequences of that decision, which remain a continuing vivid experience for the health professionals who must provide care for the child.
At the California conference neither the policies themselves nor the conference participants reached unanimous agreement on how to handle futility issues, and a follow-up survey 1 year after the conference revealed very few changes in the hospital futility policies. Does that mean that the questions, “Where does the medical profession stand? What standards does it profess?” cannot be answered? Is it necessary there be unanimous agreement in order to establish a professional standard of practice? Not at all, since the law does not demand unanimous agreement among professionals regarding issues that are matters of professional judgment. Differing standards are acceptable when some physicians hold one view and others another, provided each is held by at least a “respectable minority” and not just an individual practitioner.
Almost all of the futility policies agreed that physicians are not obligated to continue life-sustaining treatment of patients who have reliably been determined to be permanently unconscious. If this standard were recognized as the majority standard, one would still need to acknowledge that a “respectable minority” of hospitals have not adopted such an explicit policy statement.
In my view, however, these latter hospitals should consider the obligations and actions associated with their position. Is it a position or merely the absence of a position? Specifically, are these hospitals willing to accept the transfer of a permanently unconscious patient or others for whom another hospital has deemed further life-sustaining treatment futile? If so, disputes over end-of-life treatments could be resolved without requiring hospitals to go to court.
If the decision to forgo treatment has been reached by a process that is careful both in medical and procedural terms, including full discussion (where possible) with the patient or family, ethics committee review, and adequate aid to the patient and family in seeking care elsewhere, health care providers should not seek prior permission from the courts to carry out their professional duties. Indeed, there is substantial legal history in the United States to show that courts are more likely to support physicians who refrain from providing non-beneficial treatment and then defend their decisions as consistent with professional standards than when they seek advance permission to withhold such treatment. Judges do not want to make “medical decisions.” In fact, they will rightly point out that they are being asked to agree to end life-sustaining treatment some time in the future when the patient’s condition may have changed. If the rightness of that action is questioned after the fact, judges will want to know the answer to the third question, “How does the medical profession behave?” Thus, health care professionals need not only to develop policies but also to act in accordance with their policies. They also need to justify, through discussion and publication, their conduct in dealing with situations that have presented the issue of the limits of professional obligations when treatment does not yield results that would be regarded as beneficial by most patients and consistent with the goals of medicine (Schneiderman and Jecker 2011).
Back to the patient, the fifty-six-year-old woman admitted to the ICU. The health care team spent several days with the rest of the family in order to make a reasonable accommodation to their needs to grieve and come to terms with the patient’s dying. The hospital has a policy that defines medically futile treatment and outlines steps to take in the event of a dispute between parties involved in decision-making. The policy defines futile treatment as “any treatment that has no realistic chance of providing an effect that the patient would ever have the capacity to appreciate as a benefit, such as merely preserving the physiologic functions of a permanently unconscious patient, or has no realistic chance of achieving the medical goal of returning the patient to a level of health that permits survival outside the acute care setting of the medical center.” The policy also states: “It should be emphasized that although a particular treatment may be futile, palliative or comfort care is never futile.”
After mediation efforts failed to resolve the dispute, the family was given a date at which time anyone who wished could be present with the patient in a private setting when all life support and monitors would be withdrawn. This date gave them sufficient time to seek transfer of the patient or court intervention—which they chose not to do. Because the patient was ventilator- and vasopressor-dependent, the physicians could reasonably predict the patient would not linger. With the aid of benzodiazepines and morphine, she died peacefully in the presence of her family, who seemed relieved in the end that the physicians had assumed responsibility for this difficult decision.