Giving Doctors a Say

The tragic cases of British infants Charlie Gard and Alfie Evans received significant international media attention. They drew comments from a wide range of influential figures, including President Donald Trump and Pope Francis. Not since Terri Schiavo has an end-of-life case received as much media attention as these two did, or as much passionate debate among Catholic commentators. Unfortunately, much of this debate was characterized by overwrought rhetoric that obscured the real issues at stake.

At the core of the controversy in both cases was a question about the proper role of the state in mediating disputes between physicians and the parents of seriously ill children when they cannot agree on a plan of treatment. Specifically, these cases highlighted a tension between developments in secular bioethics and Catholic teaching. In the aftermath of the Schiavo case, the Congregation for the Doctrine of the Faith clarified the church’s teaching on the moral status of artificial hydration and nutrition, and the U.S. Conference of Catholic Bishops formalized this clarification in its Ethical and Religious Directives for Catholic Healthcare Services. With the Gard and Evans cases still fresh in our memory, this is an excellent opportunity to take stock of where they fit within the broader context of Catholic end-of-life ethics and to consider what lessons they may teach us.

It is axiomatic that good medical ethics begins with good medical facts. It would be helpful, then, to review the basic medical facts surrounding each case. Briefly, Charlie Gard suffered from a very rare mitochondrial depletion syndrome. Beginning in the first few months of life, this caused progressive neurological and muscular decay. At the end of his short life, he was unresponsive—though perhaps not entirely unaware—and required mechanical ventilation. His physicians in the United Kingdom believed that the state to which he had been reduced and the devices required to sustain his life might both be causing him discomfort without any hope for future improvement. His parents believed that he might be experiencing the love and care they were providing, and held out hope that a potential experimental treatment would improve his neurological functioning. After the physician who had offered the experimental treatment withdrew his claim that it could be effective in Gard’s case, the British courts, acting in what they believed to be the child’s best interest, ultimately sided with the child’s physicians, allowing them to remove Gard from the ventilator against his parents’ wishes (though, in the end, they acquiesced).

Like Charlie Gard, Alfie Evans suffered from progressive neurological and muscular decline. While physicians never identified the underlying cause of his condition, his treatment team concluded that it must be mitochondrial in nature. When it reached a point of severe and irreversible brain decay and dysfunction, which sometimes caused the child to have seizures at even the slightest touch, his physicians and hospital also petitioned the British courts to allow them to withdraw artificial ventilation over parental objection, which, citing the Gard case, the courts granted.

Nearly every Catholic commentator who assessed these cases did so by applying the traditional Catholic principles governing when certain medical treatments are morally obligatory and when they are optional. Since life is a gift of God and intrinsically valuable, there is a general moral obligation to pursue medical treatments for which the benefits exceed the burdens. However, when the burdens of a treatment begin to exceed its benefit, a patient may choose to forego it.

These principles—which go all the way back to Aquinas and were explicitly formulated in the CDF’s 1980 “Declaration on Euthanasia” and John Paul II’s 1995 encyclical Evangelium vitae—provide some important guidelines for cases like those of Gard and Evans. First, despite the unavoidability of death, respect for the sanctity of life and the dignity of the human person requires that the actions of physicians never aim to cause death. The principle of double effect may allow the provision of treatments primarily intended to relieve suffering even if they may also hasten a patient’s death. Still, in such cases, the patient’s death is not intended. Next, concerns about a patient’s general quality of life—as opposed to the burdens or side effects a specific treatment may entail—are not a sufficient reason to deny or discontinue medical treatment. A patient continues to have the right to beneficial treatments and a fortiori the right not to be intentionally killed even if her physician believes that her life is no longer worth living because of pain or extreme disability. Relatedly, patients maintain their intrinsic dignity regardless of their need for medical treatment. Here, John Paul II strongly condemns a “culture of death” that “sees the growing number of elderly and disabled people as intolerable and too burdensome” to society. Finally, only the concrete circumstances of an individual patient indicate when the burdens of treatment have become disproportionate to the expected benefits. The Ethical and Religious Directives are fairly broad in their description of the types of burden that patients and their surrogates may consider; they include pain, cost, travel, and distress.

Because the relevant Catholic doctrinal statements seem to place the decision-making authority squarely in the hands of patients themselves, or of their appropriate surrogates when patients are unable to express their preferences, many commentators concluded that the physicians’ turn to the courts was unjustifiable. These commentators often supplemented this argument about competence with further theological reflection on the proper relationship between the family and the state. The Catechism of the Catholic Church is abundantly clear that the family is an institution that is “prior to any recognition by public authority, which has an obligation to recognize it.” The family “constitutes a specific revelation and realization of ecclesial communion…a domestic church. It assumes singular importance in the Church…a sign and image of the communion of the Father and Son in the Holy Spirit” (2202). The Catechism describes the right of parents to rear their children as primordial and inalienable. Catholic commentators have therefore claimed that the parents of Gard and Evans were in a better position than the doctors to determine what was in their children’s best interest—a position generally accepted by secular ethicists as well. What about these cases would prompt the physicians to go to court to overrule parental decisions about life-sustaining treatments?

Here we encounter the major point of tension between commentaries grounded in the church’s most recent guidance on end-of-life care and more than thirty years of secular bioethical discourse on the concept of “futility” with regard to medical treatment. During that period, a rough consensus about that concept has emerged among medical ethicists, though there is still plenty of debate about its proper application. Furthermore, while Catholic documents have not used the term “futility,” they have alluded to the concept, albeit somewhat obliquely.

The significance of “futility” in bioethics can be understood only in light of the way this field has developed since its inception. About sixty years ago, an increasing focus on individual human rights began to challenge the old paternalistic model of medical decision-making; until then, a physician had usually made treatment decisions on behalf of his patients according to his own conception of a patient’s best interest. Sometimes, but not always, he would also consider the patient’s preferences. New focus on patient autonomy was solidified by prominent cases that clearly enshrined the patient’s right to forego increasingly advanced medical treatments. Respect for patient autonomy and informed consent became a basic ethical principle, if not the primary one. At the same time, clinicians were becoming more attuned to the potential harms of new medical technologies, particularly those that caused pain and discomfort with little benefit. Eventually, however, the pendulum appeared to have swung too far in favor of patient autonomy, making it all but impossible for physicians to resist the demands of patients (or their families) for medically unrealistic and inappropriate treatments. Hippocrates admonished physicians not to treat those “overmastered by their disease.” But physicians now felt they had little choice in the matter. As a result, they turned to medical ethicists for help in dealing with situations in which treatment seemed to be futile.

Various definitions of “futile”—or, more commonly, “non-beneficial”—treatment have been proposed. Some of these are now generally accepted; others remain quite controversial. In any case, it is now hard to argue that futility isn’t an important consideration in some clinical situations, or to deny that the failure of doctors to reject requests for futile treatment can cause real harm.

The least controversial definition of clinical futility pertains to treatments that have no physiological rationale. A good example of this kind of futility is the widespread over-prescription of antibiotics for common viral infections. These cases can be tricky for physicians since patients often come to them with an unrealistic expectation for a curative treatment that does not exist (antibiotics work only on bacterial infections). Rather than risk a negative patient evaluation, physicians are more apt to prescribe the demanded antibiotic, despite knowing that it probably won’t help the patient, that a small number of patients risk a severe allergic reaction, and that the overuse of antibiotics has made them generally less effective, placing other patients at risk for formerly treatable bacterial infections. Another example is the opioid epidemic, which was the result of physicians prescribing narcotic pain medications despite their addictiveness, and even after research had demonstrated that they are ineffective for chronic, non-cancer pain.

The Gard and Evans cases presented a more challenging situation. Here mechanical ventilation, which can be uncomfortable or even painful, served several valid medical purposes beyond sustaining life. These included: buying time in order to try to clarify a diagnosis, exploring the possibility of conventional or experimental treatment, and maximizing the time that the children could interact with their families. The ethical dilemma for physicians arose once the diagnosis (for Gard), and prognosis (for both Gard and Evans) became clear, experimental therapy was off the table, and the illnesses had caused a degree of neurological impairment that made interaction between the patients and their families impossible but may not have prevented the two boys from feeling discomfort from ongoing treatment. Simply sustaining life, absent all other goods, is not and never has been a proper goal of medicine. While Pope John Paul II correctly challenged a “culture of death,” physicians and clinical ethicists are now far more likely to encounter denial of death and an uncritical embrace of medical technology. In response, professional medical societies, including the American Medical Association, have officially discouraged futile treatment, with the caveat that the concept of futility must be applied judiciously and with due-process protections for the patient.

In fact, the church’s teaching acknowledges that, at the end of their lives, patients are sometimes “overmastered by their disease,” both physically and psychologically. While the Vatican’s Declaration on Euthanasia (1980) clearly places decisions about when to end treatment in the hands of patients, it also states clearly that

for such a decision to be made, account will have to be taken of the reasonable wishes of the patient and the patient’s family, as also of the advice of the doctors who are specially competent in the matter. The latter may in particular judge that the investment in instruments and personnel is disproportionate to the results foreseen; they may also judge that the techniques applied impose on the patient strain or suffering out of proportion with the benefits which he or she may gain from such techniques [emphasis added].

Acknowledging the possibility of disagreement between patients and their physicians about the futility of treatment, the USCCB’s “Ethical and Religious Directives for Catholic Health Care Services” states:

The use of life-sustaining technology is judged in light of the Christian meaning of life, suffering, and death. In this way, two extremes are avoided: on the one hand, an insistence on useless or burdensome technology even when a patient may legitimately wish to forgo it and, on the other hand, the withdrawal of technology with the intention of causing death.

In situations when treatments really are useless or excessively burdensome, respect for physicians as moral agents would grant them the same consideration that patients receive.

Many physicians use this framework routinely and without public outcry. Surgeons, for example, must often assess patients for the suitability of invasive surgery. If they decide that a patient is not a “surgical candidate” because he or she is unlikely to survive or recover from the operation, their decision is usually accepted by their professional colleagues, their patients, and society at large. Yet, critical-care physicians who wish to make the same determination about the violence of rib-crushing CPR are denied that kind of discretion. Studies have clearly demonstrated that patients are more likely than doctors and nurses to have unrealistic expectations about the effectiveness of modern medicine and to minimize its harms. Studies also show that those who have experience inflicting the burdens of critical-care medicine on patients are themselves far more likely than the general public to decline aggressive treatment for certain conditions.

In the Gard and Evans court rulings, it became clear that the prudential weighing of benefits against burdens was at least one of the issues the courts had to address. In the Evans ruling, specifically, the court noted that the physicians’ interpretation of the benefits and burdens of ongoing medical treatments appeared to comport with Catholic teaching on end-of-life care, even though this wasn’t the criterion by which the courts were expected to determine what was in the child’s best interest. Yes, the courts also mentioned the children’s quality of life, but only within the context of how ongoing medical interventions were likely to affect it. The possibility that the infants might still be aware enough to experience pain and discomfort appeared to increase the court’s concern about the burdens of continued treatment. Had the infants’ brain damage been even more severe, such that one could be certain that they were unaware of the ways the treatment teams were manipulating their bodies, it might have been harder to justify withholding treatment on futility grounds. Finally, the Evans court explicitly argued against a quality-of-life futility framework. Rather, it was the excessive burdens of treatment that determined the court’s ruling.

Catholic end-of-life ethics needs to begin integrating the concept of futility insofar as it comports with the traditional moral framework. This will help dispel the misconception that the Catholic position favors unfettered decision-making authority for patients or their surrogates and rejects the moral agency of physicians. So, for example, a new directive in the USCCB’s “Ethical and Religious Directions” might read as follows:

Physicians do not have an obligation to provide medical treatments that are physiologically futile or so excessively burdensome when compared to the reasonably expected benefits that doing so would violate their professional duty to avoid doing harm. In the event of disagreement between physicians and patients or their surrogates about the futility of a treatment, transfer of the patient to another provider may be considered and time provided to ensure that the patient’s due-process rights are not infringed.

New legislative proposals often follow controversial bioethical cases. During the height of the controversy over the Gard and Evans cases, a few commentators found parallels with another, much-less heralded case of a dying infant—that of the American Simon Crosier. All three of these cases involved disagreements between physicians and parents about whether to continue treatment; all three had to do with the question of futility. Such cases have been the impetus for new legislative efforts by the American Right to Life movement to give parents exclusive authority about end-of-life treatments for their children. These efforts, collectively referred to as “Simon’s Law” legislation, are well-intentioned but misguided.

Simon Crosier was born in 2010 with Trisomy 18, a life-limiting genetic condition. He had a number of medical complications during the three months of his life, including a severe heart defect. According to his mother, as Simon’s blood-oxygen levels began to drop, the medical team refused to intervene and told her that nothing could be done. After Simon’s death, his mother reviewed his medical record and discovered that the child’s physician had placed a “Do Not Resuscitate” order in the chart and ordered only comfort feeds without parental consent or even knowledge. Her anger led her to write a book about Simon’s life and to advocate for legislation that would prevent such situations in the future.

Advocates point to the Simon Crosier case as an example of the slippery slope that would result from physicians ever having the unilateral authority to withhold or withdraw a life-sustaining medical intervention. Yet the behavior of the physician at the center of that case is reprehensible by both secular and Catholic bioethical standards. The difference between this case and those of Gard and Evans has to do with the former’s clear violation of honesty, transparency, and due process. The standard protocol for addressing conflicts over futile care at many, if not most, major hospitals in the United States requires extensive due-process protections for patients and their families. Multiple opinions from other physicians are required, and external consultations are strongly recommended. If there is internal disagreement among the medical staff, the conflict is often resolved by transferring the patient to another physician. Ethics consultation and committee involvement is the norm, and these ought to include members of the community who can speak to local norms and values. If a conflict reaches the point where a hospital’s medical staff collectively says they can no longer countenance practicing medicine that violates their fundamental oath to “do no harm,” the possibility of transfer to another hospital is explored. Because these policies are invoked only when the situation with the patient is extraordinarily grim, and only after extensive conversations with the family, it is uncommon to find a hospital willing to accept the patient in order to provide a treatment withheld elsewhere or to continue an ongoing treatment indefinitely. But standard due-process requirements do give families an appropriate window of opportunity to find another provider, transfer to another hospital, or obtain a legal injunction.

When I am counseling physicians about such policies at the hospitals where I serve, I ask them to consider three questions. First, is the treatment in question so excessively burdensome that they wouldn’t provide this treatment to anyone in the same condition? Second, is this treatment something you would object to any physician providing in this circumstance? Third, would you be willing to attest to a judge in court that doing what is requested of you is so egregiously harmful that it would require a court order to make you do it? Framing the situation in this way prevents claims of futility influenced by disability or quality-of-life bias, ensures that such claims are about avoiding bad medicine, and encourages physicians to err on the side of deferring to the patients and their families.

Nevertheless, there are situations in which patients or their surrogates refuse to accept the physicians’ knowledge about the disease process, prognosis, and the benefits and harms of potential treatments. Sometimes this is because patients overestimate a procedure’s likelihood of success, having seen it portrayed on television as far more effective and far less gruesome than it is in real life. This misunderstanding may persist even after patients or their families have been presented with the medical evidence. At other times, families are overwhelmed by their grief, or are in outright denial. In the hospitals where I work, the examples are abundant: the woman with irreversible end-stage metastatic breast cancer whose husband refused to answer the phone to discuss her code status; the elderly gentleman with a blood-clotting disorder and severe osteoporosis for whom CPR would have resulted only in numerous fractures and massive hemorrhaging.

Right-to-life activists have successfully lobbied Kansas, Missouri, Arizona, and South Dakota for passage of new legislation, using the Crosier case as a rallying cry. Efforts to ensure honesty, transparency, and due process are good. At the same time, care must be taken to ensure these efforts do not constrain the consciences of physicians and require them to do harm to patients at the end of their life. In Kansas, “Simon’s Law,” or House Bill 2307, bans hospitals from withholding or withdrawing life-sustaining technologies or from issuing a Do Not Resuscitate order for minors without parental consent in all cases. Efforts to pass similar laws are still underway in many other states. Notably, Texas efforts created a rift between some of the Texas Right to Life groups and the Texas Catholic bishops’ conference, which recognized that a balance must be struck between patient autonomy and physician conscience.

Given the coordinated efforts of Right to Life groups across the country and their ties to the Catholic Church, it is necessary to begin a broader conversation about the incompatibility of such laws with church teaching. Such a conversation would help guide individual Catholics at the end of life, and support Catholic bishops in their oversight of Catholic hospitals. Even better, it would relieve the medical staff at Catholic hospitals from the immense moral distress that comes from violating our oath to do no harm.