The term “medical futility” is widely used in end-of-life care, but it may be time for an update in vocabulary. In some cases, “medical futility” has exacerbated conflict between medical professionals and patients’ families, led to ugly litigation, and undermined trust in the medical profession. Better language is available, so it is time for the phrase “medical futility” to be restricted to the few cases to which it truly applies.
Every day in hospitals across the nation, physicians cite “medical futility” as a reason to withdraw or withhold life-sustaining treatment when patients—or, more often, their families—insist on continuing it. A procedure is properly called “futile” when the patient’s medical condition renders it ineffective, so that it cannot achieve the benefit it was designed to bring about. The term is typically applied to mechanical ventilation, assisted nutrition and hydration, and cardio-pulmonary resuscitation, but it is applied to many other treatments as well. The fatal error arises when medical professionals invoke “futility” to discontinue a procedure that may retain some benefit for the patient, but which nonetheless may not be worth continuing.
There is widespread confusion about “medical futility” that leads to problematic misuses of the term. Thankfully, invoking futility does not always intensify conflict because the goodwill of medical professionals and families typically enables them to work together to resolve their differences. The confusion about futility does not help, however, and can provoke unnecessary conflict, waste time and resources, and drain emotional energy.
The Problem with “Medical Futility”
Although the word “futility” connotes uselessness and meaninglessness, sometimes it is applied to procedures that are still somewhat effective. In these cases, patients’ families are left wondering why the procedure is called useless when there is still some small benefit. Such procedures may still have value for these kinds of situations, and the patients’ and families’ reasons for pursuing the treatment should enter the conversation.
Invoking “futility,” however, cuts that conversation short. Medical professionals are usually not being deceptive; in many cases, they are saying that a procedure does not seem worth it because it will not significantly improve the patient’s condition. The problem is that this term does not sufficiently convey their meaning about a potentially volatile issue.
The case of Baby Joseph Maraachli provides a clear, real-life example. The question was whether or not to perform a tracheotomy, which would have allowed the family to care for Baby Joseph at home until his death. Regardless of whether the family or the physicians had better judgment, a tracheotomy was not futile in Baby Joseph’s case, even though the physicians claimed that it was.
Baby Joseph was born with a rare, degenerative neurological disorder eventually diagnosed as Leigh’s Disease. The parents asked for a tracheotomy, and the doctors refused, claiming that a tracheotomy is an invasive procedure indicated for patients who require a long-term breathing machine and not for patients simply receiving palliative care. They called a tracheotomy “futile” in Joseph’s case because it would cause much discomfort, increase the risk of infection and pneumonia, and impose arduous burdens of care on the family. But the doctors never said—and could not say—that a tracheotomy would not ease Baby Joseph’s breathing and realize the family’s goal of caring for him at home.
The parents easily saw the inconsistency between the doctors’ language and the reality of their child’s condition, because they had had a daughter with the same disease just a few years before. In her case, they had requested a tracheotomy, which was performed, and had cared for her at home until she died. They understood and were willing to accept the burdens of care.
The controversy generated a flood of heated rhetoric in the media. The family and their supporters said that the doctors were trying to kill Baby Joseph, while the review board claimed that the parents were blinded by their love for their baby and unable to view the situation objectively or from their child’s perspective. In this case, invoking “futility” turned a tragic situation into an intractable conflict.
Clinical Judgments and Value Judgments
The idea behind “medical futility” is that medical training and clinical experience enable physicians to evaluate a patient’s medical condition and identify treatments rendered useless by that condition. A recent history of the futility movement recalls the origin of this principle:
The movement [in the 1980s] to establish a policy on futile treatment was an attempt to convince society that physicians could use their clinical judgment or epidemiologic skills to determine whether a particular treatment would be futile in a particular clinical situation. The idea was that once such a determination had been made, the physician should be allowed to withhold or withdraw the treatment, even over the objections of a competent patient.
When physicians recognize that a treatment is ineffective, they have a duty to say that it cannot benefit the patient. Most patients and their surrogate decision-makers are not trained in medicine and, quite appropriately, cannot contribute to this kind of judgment.
The ethical discussion changes if there truly remains some medical benefit to performing the treatment. In that case, the treatment may help the patient to achieve goals of care, even if it does not cure the underlying condition. The decision to use the treatment is based not only on how well it works but also on what its benefit would mean to the patient and family. The patient and family are in the best position to judge what the benefits of treatment—even marginally beneficial treatments—would mean to them.
Members of the medical team might explain what they would do under the circumstances, without necessarily imposing their values on patients. They could offer thoughtful perspectives based on their values, not only on clinical judgments. Offering these values-based perspectives can be of great benefit to patients, surrogates, and families—but presenting such perspectives as if they were based on clinical judgment alone does not accurately represent the kind of judgment being offered.
Addressing the Problem within the Profession
This gap between clinical and value judgment was recognized early on, as the futility movement gained ground in the 1980s and 1990s. In “Medical Futility: A Conceptual and Ethical Analysis,” Mark Wicclair observed that the appeal to clinical expertise can mask underlying value judgments. He writes,
The statement that a medical intervention is futile communicates a sense of scientific objectivity and finality and tends to suggest that clinical data alone can decisively demonstrate that it is justified to deny patients or surrogates an opportunity to accept or refuse the treatment.
Leading bioethics literature today has incorporated this lesson. A 2015 policy statement by the American Thoracic Society (ATS) observes that
There is now widespread agreement that many of these disagreements, previously called futility disputes, do not hinge solely on technical medical determinations and instead also involve contested value judgments about what is appropriate treatment in patients with far advanced illness.
The ATS therefore recommends that “The term ‘futile’ should only be used in the rare circumstance that an intervention simply cannot accomplish the intended physiologic goal.”
This bioethical definition of futility, “physiological futility,” means the intervention will not work at all and is utterly without benefit. Cardiopulmonary resuscitation is futile if it will not restore cardiopulmonary function, and tube feeding is futile if the patient’s body cannot assimilate nutrition. Perhaps few procedures would fit this definition, but the grounds for withholding them are obviously strong. Continuing such procedures offers false hope to patients.
There is a second, more common, way in which a procedure could be futile, but the term “futility” need not even be used to describe it. In a looser sense of the word, a procedure is futile if it would be immediately effective but lose its beneficial effect before the goals of treatment are achieved. The grounds are weaker for a physician to withhold procedures that are futile in this way. The procedure itself provides a current benefit, and the patient (or surrogate) might reevaluate treatment goals and replace impossible goals (such as a total cure) with possible ones (such as a short-term prolongation of life). Invoking futility here cuts off this possibility.
Better Language for End-of-Life Care
Better concepts and language are available, and adopting them will promote a cultural shift toward greater clarity surrounding reasons for withholding and withdrawing treatment.
The concepts “proportionate” and “disproportionate” more accurately describe the kind of reasoning involved in evaluating treatment of declining benefit and increasing burden. A medical treatment is “proportionate” when its benefits outweigh its burdens. In such cases, the treatment is typically provided, and there may even be an expectation that the patient will accept the treatment if it is important for maintaining his or her health.
“Disproportionate” means that the burdens of treatment outweigh the benefits, but benefits still remain. Achieving the benefit requires an excessively strenuous effort, because the burdens are too heavy. Such burdens could include pain and suffering for the patient; psychological burdens on family and caregivers; and significant cost to the patient, the insurance plan, and the medical institution. Yet disproportionate treatment is not futile. Cases like that of Baby Joseph demonstrate that invoking “futility” for procedures that are actually disproportionate can easily lead to conflict.
Disproportionate treatment should not necessarily be considered inappropriate. One might think of “disproportionate” in the sense of “off balance” or “out of equilibrium,” describing a position that could be maintained with strenuous effort as long as it does not continue for too long. Patients are not expected to accept treatments with disproportionate burdens but might request them in pursuit of specific, usually short-term, goals. Medical teams are not required to provide them, but often do for various reasons, especially to show compassion for patients and their families and to support their goals. A common example is the use of life support to allow family to pay their respects to a dying loved one.
Benefits and Burdens
It is not always necessary to label a procedure as futile or otherwise. End-of-life conversation can focus on weighing the benefits and burdens of different treatment pathways. The terms “proportionate,” “disproportionate,” and “futile” accurately convey the relationship between benefits and burdens, but can come across as overly technical for use with patients and families. Many people have never heard of them, and courts have had difficulty understanding and applying them, so these terms will probably not become more widely used.
The most useful terms are probably “beneficial,” “burdensome,” and “ineffective.” “Ineffective” communicates the reason why a treatment is futile while avoiding the complications surrounding the term “futility” in today’s healthcare culture. “Beneficial” means that overall the benefits outweigh the burdens of treatment. “Burdensome” or perhaps “disproportionately burdensome” means that, on balance, the burdens outweigh benefits of treatment. As different parties to an end-of-life conflict express their views of a treatment, using these terms naturally leads to a discussion about why each thinks the balance tends one way or another.
There is no guarantee that such a discussion will prevent intractable conflict over end-of-life care. There is no language that automatically reconciles opposing views. Sometimes we can hope only that views are expressed and decisions are made with enough respect and transparency to avoid intractable conflict.