The fate of Alfie Evans, a 23-month old child suffering from a neurodegenerative condition and currently held at Alder Hey hospital in Liverpool, has ignited a fierce debate in the United Kingdom and gained global attention. It has also aroused the passionate interest of Catholics around the world, since Alfie’s case raises profound questions about the dignity of human life and proper care for the dying.
Alfie first started showing unusual symptoms in July 2016 and was admitted to the hospital that December. By January 2018, Alfie’s brain activity had significantly diminished and he was diagnosed with an unknown neurodegenerative disorder that was likely terminal in nature. Around that time, Alfie was placed on a ventilator because of his difficulty breathing on his own. One physician who observed Alfie judged that, “[E]ven if Alfie is able to sustain respiration in the short term, on discontinuing ventilation, his respiratory effort will not sustain life.” Another physician whose opinion was solicited by Alfie’s parents, however, stated that if Aflie continued to receive intensive care at Alder Hey, including the use of the ventilator, it could “sustain him for a long time.”
Nevertheless, the team of physicians at the hospital recommended that Alfie be removed from life support and allowed to die. This decision was rejected by Alfie’s parents, who wished to transport Alfie to the Bambino Gesú hospital in the Vatican where he could continue to receive care, but in February a judge ruled in favor of the physicians’ decision and prohibited Alfie’s parents from removing him from the hospital. After a final failed appeal by his parents, Alfie was removed from his ventilator this past Monday, although contrary to the expectations of the doctors, he has been breathing on his own and, at the time of writing, is hanging on to life.
My CMT colleague Charlie Camosy has written an excellent overview of many of the ethical issues involved in this case at First Things. In his essay, Camosy claims that “Alfie Evans’s death is being aimed by the very people whose vocation it is to help and protect him,” and that, “according to the judge, it is in Alfie’s best interests to die.” I believe that Camosy’s judgment is essentially correct, but it is not unanimously shared by other Catholic ethicists.
For example, Kevin Wildes, S.J., a bioethicist and the president of Loyola University New Orleans, points to the Catholic Church’s teaching that life-sustaining treatments such as ventilators can be foregone if the treatment becomes disproportionately burdensome to the patient and his or her family, expressed, for example, in a 1957 address by Pope Pius XII and the Congregation for the Doctrine of the Faith’s 1980 Declaration on Euthanasia. Wildes, cited in an America article by Kevin Clarke, adds “Unfortunately, the abortion politics in the United States have led many Catholics to [an] absolutist position on protecting all life at all times.” Likewise, John Paris, S.J., another bioethicist cited in the same article, asserts that “ideologues” are “not interested in the tradition but their ideology, and that often drives them into positions that are contrary to the tradition.”
But simply noting that life-sustaining treatments can be foregone under certain conditions is no proof that they should be foregone in Alfie’s case. As Wildes himself states, a proper judgment depends on the particulars of the case: “What is extraordinary [i.e., disproportionate] for one patient may only be ordinary [i.e., proportionate] for another.” Likewise, as Wildes explains, it is the patient’s prerogative to assess the burdens and benefits of treatment, or if the patient is incapacitated, that of proxies such as parents. Yet one of the remarkable aspects of Alfie’s case is that the physicians and the judges involved in the case have overruled the wishes of the parents.
In his article, Clarke explains that the judges in this case have this authority as a result of the “strong custodial role for the state in protecting the best interests of children, even when that circumvents or contradicts parents’ desires,” recognized in UK law. This custodial role of the state is clearest in cases where the parents request a treatment that is obviously harmful to the child or when they refuse a treatment necessary to prevent serious harm to a child. For example, in the United States the law permits physicians to override the wishes of parents who are Jehovah’s Witnesses if their child needs a blood transfusion, which is prohibited by their religion. Yet it is unclear what this custodial role means in cases such as the removal of life support where the proportionate response depends on the prudential judgment of the patient or his or her proxies. Can a physician simply override the wishes of a patient or proxies if he or she disagrees over what is in the best interests of the patient? Such a conclusion would undermine the crucial principle of patient consent, yet Wildes and Paris both gloss over this problem.
Wildes, for example, seems to dismiss the wishes of Alfie’s parents by claiming that “People see what they want to see,” suggesting that parents’ emotional investment in their children makes it difficult for them to make reasonable judgments about end-of-life decisions for their children. That certainly can be true, but parents’ emotional investment in their children does not preclude the ability to make a prudential judgment and may even enable parents to correctly weigh the burdens suffered by their child against the benefits of continued treatment. Wildes also ignores how physicians’ own judgments may be clouded by emotions when a patient contradicts their judgments, or how doctors can succumb to paternalism and dismiss patients who disagree with them as “emotional.” Indeed, Wildes ignores studies that show that doctors disproportionately act without the consent of people of color and women, for example, precisely because they dismiss their judgments as “too emotional.”
Both Wildes and Paris, according to Clarke, believe that the physicians and judges have made a decision in Alfie’s best interests:
Both Father Wildes and Father Paris say they do not perceive evidence of euthanasia in the prescription for Alfie Evans’ treatment. In fact, they insist that the medical staff in Liverpool has acted professionally and in the best interest of their patient and are now being unjustly pilloried for it. They argue as well that the courts have acted properly in stepping in to halt further treatment, especially under U.K. law.
In my view, however, there are serious flaws in the judgment of the physicians and the courts, particularly in their weighing of the benefits and burdens of continued treatment for Alfie.
The late Christian ethicist Allen Verhey has defined the medical profession in this way:
The goal of medicine, the good which is intrinsic to the practice, is identified by the [Hippocratic] oath as “the benefit of the sick.” To benefit the sick is not simply the motive for taking up certain ethically neutral skills nor merely an extrinsic end to be accomplished by ethically neutral technical means. . . . This intrinsic good entailed standards of professional excellence which could not be reduced to technological excellence.
This understanding of the medical profession—as a practice oriented toward the intrinsic good of health—is shared by many physicians and ethicists, both Christian and secular alike, although it is not uncontested. The decisions of a physician must prioritize the health and well-being of patients, and, in the words of the Hippocratic Oath, the physician should strive to “do no harm,” avoiding intentional harm to the patient’s health and minimizing unintentional harm.
In everyday medical practice, however, what “the benefit of the sick” entails is very much dependent on the condition in which a particular patient finds himself or herself. In their Clinical Ethics (8th ed.), Albert R. Jonsen, Mark Siegler, and William J. Winslade identify eight distinct “goals of treatment” that may “benefit the sick”:
- Cure of disease
- Maintenance or improvement of quality of life through relief of symptoms, pain, and suffering
- Promotion of health and prevention of disease
- Prevention of untimely death
- Improvement of functional status or maintenance of compromised status
- Education and counseling of patients regarding their condition and prognosis
- Avoidance of harm to the patient in the course of care
- Providing relief and support near time of death
When treating a patient, a physician’s pursuit of the intrinsic good of health may involve any one of these eight goals of treatment, although in many cases multiple goals are pursued simultaneously. For example, a patient being treated for bacterial pneumonia could be provided with an antibiotic to cure the disease (1), advised to rest to relieve the symptoms (2), and offered information on how to avoid communicable diseases in the future (3).
In the case of Alfie, the most relevant of these goals of treatment are (1) the cure of disease, (5) maintenance of compromised status, and (8) providing relief and support near time of death. As I noted earlier, as Alfie’s condition worsened, his physicians provided him a ventilator to maintain his breathing, which had been compromised. Once they had concluded that there was no way to cure his underlying condition, however, they decided that it was in his best interests to remove the ventilator while continuing to administer palliative care as a form of relief until death approached.
But describing Alfie’s treatment in this way helps to reveal what I believe is the fatal flaw in the judgment of both Alfie’s physicians and the judges. The physician’s report cited by Anthony Hayden, the initial judge in the case, states:
I believe that given Alfie’s very poor prognosis with no possible curative treatment and no prospect of recovery the continuation of active intensive care treatment is futile and may well be causing him distress and suffering. It is therefore my opinion that it is not in Alfie’s best interests to further prolong the current invasive treatment. It would, in my opinion, be appropriate to withdraw intensive care support and provide palliative care for Alfie for the remainder of his life. (emphasis added)
Likewise, Hayden cites a directive from “Making Decisions to Limit Treatment in Life-limiting and Life-threatening Conditions in Children: A Framework for Practice,” a document published by the Royal College of Paediatrics and Child Health in 2015, which seems to have had a significant influence on his final decision:
The RCPCH believes that there are three sets of circumstances when treatment limitation can be considered because it is no longer in the child’s best interests to continue, because treatments cannot provide overall benefit:
II When life is limited in quality[.] This includes situations where treatment may be able to prolong life significantly but will not alleviate the burdens associated with illness or treatment itself. These comprise:
3. Lack of ability to benefit; the severity of the child’s condition is such that it is difficult or impossible for them to derive benefit from continued life. . . . In other children the nature and severity of the child’s underlying condition may make it difficult or impossible for them to enjoy the benefits that continued life brings. Examples include children in Persistent Vegetative State (PVS), Minimally Conscious State, or those with such severe cognitive impairment that they lack demonstrable or recorded awareness of themselves or their surroundings and have no meaningful interaction with them, as determined by rigorous and prolonged observations. Even in the absence of demonstrable pain or suffering, continuation of LST [i.e., life-sustaining treatment] may not be in their best interests because it cannot provide overall benefit to them. . . . (emphasis added)
Both the physician’s report and the RCPCH directive suggest that when life-sustaining treatment becomes futile, or as the directive puts it, when it “cannot provide overall benefit,” then the proper course of action is to withhold treatment. Jonsen, Siegler, and Winslade define medical futility as “an effort to provide a benefit to a patient which reason and experience suggest is highly likely to fail and whose rare exceptions cannot be systematically produced.” Yet to judge a treatment as medically futile, one has to have a clear sense of what benefit, what “goal of treatment,” one is talking about. For example, it would be foolish to consider insulin shots futile because they don’t cure type 1 diabetes.
As I indicated in the citation above, the physician’s report judges the life-sustaining treatment provided to Alfie to be futile because there is “no possible curative treatment and no prospect of recovery” from his degenerative condition. The RCPCH directive confirms this judgment by suggesting that a treatment is of no overall benefit if it “will not alleviate the burdens associated with illness or treatment itself.” But is that sufficient to judge life-sustaining treatment futile?
Although Alfie was first provided with the ventilator in the hope that his condition could be reversed, a hope that was quickly dashed, it is certainly also true that the ventilator provided the real benefit of significantly extending Alfie’s life by maintaining the functioning of his otherwise compromised respiratory system. The physician’s report ignores the fact that Alfie’s life-sustaining treatment was not futile in regard to this aim. The RCPCH directive even explicitly excludes the fact that a treatment “may be able to prolong life significantly” from consideration of whether it is of “overall benefit” to the patient!
Why is this important? The RCPCH directive, the physician’s report on Alfie’s condition, and the judge’s decision all stack the decks by excluding from their evaluation of what is in Alfie’s best interests the primary benefit afforded by the life-sustaining treatment offered to him: life itself. The RCPCH directive puts in place a moral framework in which life has no intrinsic value, but rather has value only to the extent that one can “derive benefit” from it. This framework then shaped the judgment of both the physicians and judges. Because profoundly disabled children cannot “derive benefit” from life, in this view, then there is no reason to offer them life-sustaining treatment. Camosy is correct, therefore, that proponents of this framework “are making the case that certain profoundly disabled children are unworthy of life,” since their condition cannot be alleviated, and that such judgments of unworthiness could easily be extended to other forms of disability.
Hayden seems to be aware of this problem in his decision, writing:
I have on the parents’ behalf taken very great care to evaluate the quality of Alfie’s present circumstances, even though I accept entirely the conclusion of the medical evidence that treatment for Alfie is futile. It does not follow axiomatically that the futility of Alfie’s situation leads to the immediate withdrawal of ventilation. Life itself has intrinsic value, however tenuous or vestigial it’s hold.
Yet there is no sign that the supposed intrinsic value of life factored into his judgment, which relies completely on the framework laid out in the RCPCH directive and which did indeed lead to the immediate withdrawal of Alfie’s ventilation, at least after all appeals had been exhausted.
My point here is not that the efficacy of a treatment in alleviating “the burdens associated with illness” should play no role in evaluating the burdens and benefits of life-sustaining treatment, or that there are no conditions under which it might be appropriate to withhold such treatment in a case like Alfie’s. Contrary to Wildes, I am not advocating for an “absolutist position on protecting all life at all times.” Rather, the issue at stake in Alfie’s case is whether the life of all human beings, even the most vulnerable, has any value for its own sake. Because the judgment to allow Alfie to die admits no such value, it cannot help but be fatally flawed.