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Case example
Dr. Tyson is a general pediatrician in private practice. He is caring for Gail, a 5-week-old infant who presented to his office three weeks ago when her parents became concerned about her decreased feeding and apparent weakness. The parents reported that they were told that Gail was normal and healthy when they took her home from the hospital. Gail is a pretty baby girl, but Dr. Tyson’s initial physical examination three weeks ago revealed that she was seriously ill. She had an elevated respiratory rate and very poor muscle tone.
Dr. Tyson was concerned about a life-threatening infection and so began a course of antibiotics immediately and admitted Gail to the hospital. While in the hospital, her respiratory condition worsened, and she was intubated and placed on a ventilator. No infection was discovered, but a muscle biopsy revealed tragic news: Gail has a rare and incurable genetic disease called fatal infantile myopathy. This condition is caused by a genetic mutation in the mitochondria of the muscles that leads to progressive weakness and death, usually within six months. Dr. Tyson shared this diagnosis with Gail’s parents and grandparents and grieved with them.
At a subsequent family meeting, Gail’s parents and grandfather (who is a pastor at a local church) told Dr. Tyson that they were praying for Gail’s recovery and believed that God would not allow her to die. Dr. Tyson replied that he wished that Gail could be cured, but that he believed that Gail’s illness was incurable and that she would die soon, with or without the current treatment measures. He voiced his concern about the pain and suffering associated with artificial ventilation, needle sticks, feeding tubes, and other interventions required to keep Gail alive. Dr. Tyson recommended removing the ventilator, but the family rejected this recommendation. The family did seek the advice of a theologian from a nearby Bible college. The theologian listened to Dr. Tyson’s and the family’s views, and acknowledged the difficulty of the situation, but offered no solution. How should Dr. Tyson proceed?
The rise of the futility debate
As described in Chapters 15 and 16, a series of US court decisions in the 1970s and 1980s established patient rights to refuse life-prolonging medical treatment. During this period, states also enacted statutes that enabled patients to express their desire to forgo life-prolonging treatment by means of advance directives and encouraged or required physicians to honor those directives.
A new controversy regarding treatment near the end of life emerged in the late 1980s. Reports began to appear in the medical literature that some patients and families were demanding access to aggressive treatments, even though their physicians recommended against those treatments on the grounds that they would not be successful.1 In response to these demands, commentators asserted a right of physicians to withhold or withdraw treatment because it would be futile, regardless of patient or surrogate wishes. In an early article entitled “Must We Always Use CPR?” for example, physician Leslie Blackhall makes the following assertion: “The issue of patient autonomy is irrelevant, however, when CPR has no potential benefit. Here the physician’s duty to provide responsible medical care precludes CPR, either as a routine process in the absence of a decision by the patient, or a response to a patient’s misguided request for such treatment.”2
Other commentators quickly challenged these appeals to futility as a justification for denying requests for life-prolonging treatment.3 Physicians Robert Truog, Allan Brett, and Joel Frader conclude their 1992 article “The Problem with Futility” with the claim that “the rapid advance of the language of futility into the jargon of bioethics should be followed by an equally rapid retreat.”4 The ensuing intense debate has been the subject of more than 2000 medical journal articles over the past two decades, including contributions from most of the leading scholars in the field of bioethics.
What is futility?
Many of the early contributions to the literature on medical futility proposed definitions of the term and then applied those definitions to various medical treatments. The etymology of the term offers an instructive example: ‘futile’ is derived from the Latin term futilis, meaning “leaky.” According to Greek mythology, the daughters of King Danaus were condemned by the gods to carry water forever in jars that were riddled with holes.5 Because the jars were leaky, their task was futile. As this example illustrates, we judge a task to be futile when we are highly confident that it cannot achieve its goal. Arthur Caplan points out that futility judgments are about “odds and ends” – that is, a futile effort must have very low odds of achieving its desired ends.6 Each futility judgment, then, has both a quantitative and a qualitative aspect. Quantitatively, we must determine how unlikely it is that an effort will achieve its end, and qualitatively, we must identify what is the intended end or goal of the effort.
How does this general concept of futility apply to medical treatments? If the primary goal of medicine is to benefit patients, then a medical treatment is presumably futile when it cannot benefit a particular patient. The concept of patient benefit is very broad and at least somewhat vague, however. Various authors have, therefore, proposed more specific quantitative and qualitative criteria for futile medical treatment. Baruch Brody and Amir Halevy offer a helpful description of the following four types of medical futility:7
1. Physiological futility. A treatment is physiologically futile when it cannot have the intended physiological effect. CPR example: If the immediate goal of CPR is to keep blood flowing to the brain and other vital organs, CPR is physiologically futile when rupture of the aorta prevents blood from reaching those organs despite chest compressions.
2. Imminent demise futility. A treatment is futile in this way when it cannot prevent the patient’s death in the very near future. CPR example: Even if it can perfuse vital organs and restore spontaneous heartbeat and respiration, CPR is futile in this sense when evidence demonstrates that the patient will arrest again very soon and will not survive for more than a few hours or days.
3. Lethal condition futility. A treatment is futile in this way when it cannot affect an underlying lethal condition that will cause death in the not-too-far future. CPR example: Although it can restore spontaneous heartbeat and respiration, CPR is futile in this sense when a patient has late stage terminal cancer that will result in death within weeks to several months.
4. Qualitative futility. A treatment is qualitatively futile if it cannot result in an acceptable quality of life. CPR example: Although it can enable prolongation of physical life for a long period, CPR on a patient in a permanent vegetative state may be judged to be qualitatively futile because it cannot change the patient’s unacceptable quality of life.
These four types of medical futility are listed in order from less to more inclusive and from less to more controversial. That is, few scholars would deny that a treatment that clearly cannot achieve its physiological end is futile, but only a few treatments in specific situations are likely to satisfy that description. Many more treatments may be judged to be futile because they prolong a life that has an unacceptable quality, but views about what constitutes an acceptable quality of life are highly variable and debatable. It is worth emphasizing, however, that not all futility judgments are controversial. In every medical specialty, there are examples of treatments that have been clearly demonstrated to be ineffective. One prominent example is the use of laetrile, a chemical extracted from apricot and peach pits, as an alternative cancer therapy, despite multiple scientific studies concluding that it provides no benefit and can be harmful.8 Should patients nevertheless request such an ineffective treatment, there is general consensus that physicians may justifiably refuse to honor that request. The moral debate over futility has centered on more controversial appeals to the broader types of futility described above to justify unilateral physician decisions to withhold or withdraw life-prolonging treatments like CPR, mechanical ventilation, and artificial nutrition and hydration. These morally controversial appeals to futility involve medical interventions that are effective in some situations, but are said to be futile for a particular patient or class of patients.
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