Editor’s Note: This is the first article in a new Register series called Difficult Moral Questions. Readers are invited to send questions to firstname.lastname@example.org, putting ‘Difficult Moral Questions’ in the subject line. Please identify your first name (or, if you prefer, a suitable pseudonym) and the state you live in (and country if not the United States).
QUESTION: Concerning the Alfie Evans case, I have heard three terms used somewhat loosely: (1) People on both sides have spoken about Alfie’s “best interests.” (2) Opponents of care have said that continued treatment would imply “therapeutic obstinacy.” (3) Others have claimed that further care would constitute “overzealous treatment.” How do these terms apply to Alfie’s case?
E. CHRISTIAN BRUGGER REPLIES: The term “best interests” in end-of-life care ordinarily applies to patients who are not competent to make their own medical decisions. In the case of minors, and especially of small children, the parents are ordinarily considered “proxy decision-makers.” This means they are legally authorized to make care decisions on their children’s behalf.
Proxies have a moral duty and in most countries a legal duty to make those decisions consistent with the “best interests” of the patient. Given the current conflicting views on the value of human life and the meaning of death, the rise of the odious notion of a “life not worth living,” growing disdain for weakness and disability, and the increasingly influential voice of “right-to-die” advocates, we may expect there to be competing conceptions of what constitutes the “best interests” of patients.
I have argued elsewhere that these attitudes have infected Western health care by creating an environment that places tacit pressure on sick patients and their families to opt for refusal of life-support over its continuation (what I have called a “culture of removal”).
So how should we assess Alfie’s best interests?
In considering any end-of-life case, we must keep in mind the master principle of morality as articulated by the Church through the words of St. John Paul II: the dignity of the human person.
Human life is intrinsically valuable, always good, even when badly disabled, even when one’s breath is fading. Its value is independent of one’s ability to do or experience certain things, and no amount of infirmity compromises it one iota. And certainly no one has the right to deny the value of a human life at any stage of development or in any condition.
Therefore, the statement “some lives are not worth living” is literally never true. Continuing to live is always a good thing; and sustaining life is never pointless.
At the same time, the Church teaches that we are not always required to do everything possible to preserve life.
Two conditions for the licit removal of life-support
She teaches that life-sustaining procedures may be refused for two independent reasons: if they are either futile (i.e., they do not promise to the patient a reasonable hope of benefit) or are in the patient’s judgment excessively burdensome (Catechism of the Catholic Church, 2278; Ethical and Religious Directives, 57).
It is important to note that when Catholic teaching specifies the “excessive burden” designation, it includes only forms of medical treatment; treatments may be removed so a patient may be free of the burden they impose, even if one of the side-effects is the hastening of death. “Such a refusal is not the equivalent of suicide; on the contrary, it should be considered as an acceptance of the human condition” (Declaration on Euthanasia, IV).
But “excessive burden” must never be construed to mean the patient’s life: “I don’t want to live this way!” If life is the burden to be avoided, then one’s aim in refusing life-sustaining treatment would be to end that life, which is just another way of referring to an act of suicide or assisted suicide.
Whether some procedure is excessively burdensome is a judgment reserved to the patient. If the will of the patient cannot be ascertained, then proxies are called upon to make the decision in light of the patient’s “best interests”. In Alfie’s case, this would mean judging, among other things, whether he was experiencing severe discomfort from the ventilator and other forms of care, which clearly did not seem to be the case.
One final point on this. John Paul II taught in 2004 that the administration of food and water to patients whose bodies need them to survive is morally obligatory. (For more on this teaching click here.) He was able to say this because their administration, if required for life, is obviously not futile; and because they can be administered with relatively little burden. Thus, it would be gravely immoral for Alder Hey Hospital, or anyone else, to deprive little Alfie of the food and water he needs to survive.
Although refusal can be and often is morally legitimate, the Church nowhere teaches that patients have a duty to refuse life-support, even if measures are judged futile or excessively burdensome, although it seems to me reasonable to conclude that some patients in certain circumstances have such a duty. I do not think this is the case with Alfie Evans.
Let’s apply all this to the case at hand.
Alfie is suffering from a degenerative neurological disorder that has caused him, we are told, to be in a “semi-vegetative state.” Most doctors seem to agree that Alfie’s condition is incurable.
Alfie was in the hospital for more than a year. He was on mechanical ventilation for much of this time. His doctors believed till recently that ventilator support was necessary to his survival.
We might ask the following questions.
1. Was it reasonable for Alder Hey Hospital originally to propose to discontinue Alfie’s mechanical ventilation?
From what I can tell, the hospital reasonably judged that no further treatment would promise the boy hope of healing, and so concluded, again it seems reasonably, that continuing ventilation was what the Catechism calls “overzealous” treatment, i.e., disproportionate to any hoped-for therapeutic benefit.
Since health care in the UK is funded by state taxation, and hospitals have an obligation to be good stewards of citizens’ resources, it seems reasonable for a hospital to propose at times that certain “futile” treatments be discontinued.
2. Would this have been in Alfie’s “best interests”?
I think referring to the category of best interests to justify the hospital’s decision is misplaced. Since it is never better for a person to die than to remain alive — since bodily life, as we said, is always good, and death is the absence of that good — it is never in someone’s interests to cease to exist in this world. Therefore, use of that term indicates the decision-makers are operating from an ideologically influenced “quality-of-life” scale for determining the value of Alfie’s life.
They should have argued that further ventilator treatment is medically futile and so given the relative scarcity of medical resources it is no longer justified in the present case.
3. Was the hospital justified in refusing Alfie’s transport to the Bambino Gesù Hospital in Rome, which offered to provide full care?
No. Given that Alfie’s parents guaranteed (I presume) that all expenses incurred for moving Alfie to Rome would be covered by private funds, neither the hospital, nor the UK government could justify their decision on the basis of the duty to exercise good stewardship over scarce medical resources. The hospital’s obstinacy, therefore, and the repeated denials of redress by the courts have been, in my opinion, immoral.
Further, we now know with certainty that Alfie is not brain-dead, since he is breathing on his own. So even if one believes that brain death is coextensive with human death, which I do not, no one can argue that this child is brain-dead. Some doctors even believe the child has been wrongly diagnosed.
4. Should Alfie’s parents originally have consented to remove life support?
As stated above, if some procedure offers no reasonable hope of benefit, it may be judged futile and so removed, even if this will hasten a patient’s death. After living in a coma for a year, and being offered (I presume) all reasonable options for healing, Alfie’s parents themselves could havejudged on the basis of medical futility to remove Alfie’s mechanical ventilation.
5. Were they morally required to do so?
Although we may have a duty to comply with a hospital’s judgment that that hospitalno longer has the duty to supply what it judges to be futile treatment, this does not mean we have a duty to cease treatment. If a hospital refuses to continue treating some patient, caregivers should be given the opportunity to seek another institution willing to continue treatment, and then, if such an institution is found, to move the patient there.
6. What justification was there for not removing Alfie’s ventilator?
There are several reasonsfor sustaining Alfie’s life. First, Alfie’s life is good and continuing to live is a good thing. Second, his loved ones experience some degree of human communion with him and this too is good. Third, if Alfie is able to have any sensory experience, and it seems from the facts we cannot rule this out, his experience of loving care and solidarity from loved ones is also good.
7. Is caring for Alfie an example of “therapeutic obstinacy”?
This term is an odious invention of secular bioethicists. It bitterly stigmatizes something very natural, something that should be (and usually is) treated with respect and delicacy by the medical community, and that is some family members’ tendency to opt for “overzealous treatment” out of non-medically justified hope that their irreversibly ill loved-one might improve if doctors just gave them “a little longer.” Perhaps some of these people become obstinate. But most are just struggling to adapt to that darkest of realities, bodily death.
Since literally nobody seems to know what’s afflicting little Alfie; and since he has repeatedly defied dire predictions (fought off two infections thought to be fatal; breathing independently after ventilation was removed), the insistence that his condition is incurable may itself be overzealous and obstinate. I don’t know, I am not a doctor. But anyone who has dealt with them, and I have dealt with hundreds, has found their rate of diagnostic fallibility on non-routine “out of the box” medical conditions to be extraordinarily high.
Therefore, the UK medical community should express some humility, concede they don’t know with certainty how Alfie’s life will unfold if given full care (such as what doctors at Rome’s Bambino hospital have suggested), and then free the child’s parents to get him the help he needs to stay alive.
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Timeline of the Alfie Evans Case
For those unfamiliar with the facts of the case, here is an explanatory timeline of events:
- May 9, 2016: Alfie born in Liverpool to Tom and Kate Evans
- Dec. 14: Admitted to Alder Hey Children’s hospital after seizures; remains 12 months
- Dec. 11, 2017: Hospital petitions British High Court to withdraw ventilation
- Dec. 19: Hospital says further treatment not in Alfie’s “best interests”
- Feb. 1: Hospital lawyers tellHigh Court further treatment is “unkind and inhumane
- Feb. 2: Doctors say Alfie is in a “semi-vegetative state” because of an unknown neurological condition
- Feb. 20: London High Court judge authorizes hospital to remove life support
- March 1: Parents appeal High Court ruling
- March 6: Appeals court judge upholds prior judge’s ruling
- March 8: Parents appeal to Supreme Court
- March 20: Supreme Court refuses to consider appeal
- March 28: European Court of Human Rights refuses to hear case
- April 4: Pope Francis appeals on Twitter on behalf of Alfie’s life
- April 16: Parents mount a “wrongful detention” appeal against the hospital
- April 16: Court of Appeals rules against parents
- April 17: Parents appeal to the Supreme Court a second time
- April 18: Tom Evans flies to Rome to meet pope
- April 20: Supreme Court rules against parents for a second time
- April 23: Alfie granted Italian citizenship to facilitate transfer to Italy
- April 24: Alfie’s life support is withdrawn
- April 24: Further appeal dismissed by High Court
- April 24: High Court judge rules boy may be taken home, but not to Rome April 25: Parents appeal to Court of Appeals against High Court ruling
- April 25: All grounds of appeal refused by Appeals Court