Recently, a friend texted me, “What’s your take on the Alfie Evans case?” In a phrase, “It’s a mess” and “I don’t know.” A lot of commentators remarked in one way or another that the young British toddler is quite similar to another British toddler who died over the summer named Charlie Gard. Though a lot of similarities exist, there’s a vital difference: Alfie did not have a formal diagnosis for his degenerative brain condition, so without knowing the full complexity of the case, I have difficult giving a definitive answer.
There’s so much I do not know, like if he was still growing while on ventilation, if he was still assimilating food and what kind of nutrition/hydration he was receiving, what the setting of his ventilator was (which is vital information since some settings can completely mimic our body’s natural respiratory system and others are merely supportive), and much more. Without a greater clinical understanding of Alfie’s case, it’s hard to say if the British courts “killed” him (in some form of euthanasia) or merely let nature takes its course.
However, either way, it seemed semi-clear that: 1. Alfie had significant brain damage, 2. medical technology could do little more, but 3. the intent behind removing the ventilator was was morally unjust if the goal of removing the ventilator was euthanasia yet 4. removing the ventilator could be a morally just action if the goal of removing it was reducing pain and harm at the end of life because further medical care would be futile.
The difficult thing is this case is honestly the conception of death and dying. While I was thinking and praying about Alfie, I received my quarterly Ethics and Medics from the National Catholic Bioethics Center that had a timely feature called The Limits of “Actively Dying” as a Moral Concept by Rev. Kyle Ratuiste. Dying is not well defined, despite all of our technological advances, physiologic knowledge, and modern day medical options. Why else would books like On Death and Dying, Proof of Heaven, When Breath Becomes Air, Being Mortal, and many other medical memoirs and thoughts on death be so popular?
Truth is, death is a mystery. It has been for millennia and still is, even medically. As Hui et al. (2014) addressed in their systematic review of the concepts of “actively dying,” “end of life,” “terminally ill,” “terminal care,” and “transition of care,” actively dying implies hours to days of survival while end of life/terminally ill/terminal care implies “life-limiting disease with irreversible decline and expected survival in terms of months or less.” In the United States, for insurance purposes for hospice care, the end of life is considered a person who is likely to die in the next 6 months.
To be honest, I had not heard of the boy until recently. I follow the Pope on Instagram, and on April 18th, he posted this:
This picture was my first introduction to Alfie Evans, a 23-month-old baby in the United Kingdom who was dying of an unknown degenerative neurological disease that captured the world’s attention before he passed away on April 28th, 2018. Per usual, I rely mostly on the BBC for my news, and they offer a good re-cap of the situation both here and here. (Can we please note that the second article is written by “Reality Check team?” How British.)
Vincent Lambert is a 39-year old French quadriplegic who has been in a vegetative state for years after a motorcycle accident. His case is called a “right to die” case, and the two sides (his parents and his spouse) are fighting over the right to remove a feeding tube. His story reminds me heavily of Terri Schiavo, a woman who was in a persistent vegetative state for years after suffering a cardiac arrest and subsequent anoxic brain injury (where the brain is deprived of oxygen and cells die). The bioethics over persons in persistent vegetative states is quite clear. A thorough Frequently Asked Questions can be found on the National Catholic Bioethics Center page here.
Since John Paul II and his Evangelium Vitae, in 1995, no Pope has issued an encyclical about specifically addressing bioethical questions. As Catholics, we rely on that encyclical and others like it, Papal addresses such as Pope John Paul II’s 2004 address on the persistent vegetative state, documents from Papal committees like the Sacred Congregation for the Doctrine of the Faith’s Declaration on Euthanasia and in the United States, the Ethical and Religious Directives for Catholic Health Care Services, which is published by the U.S. Conference of Catholic Bishops to guide Catholic health care. We are also guided by bioethicists, typically the National Catholic Bioethics Center in the United States, who have published a guide to end of life decision making and a FAQ.
In essence, at the end of life, we have obligatory and optional means of care. Obligatory (also known as ordinary) means of care are those things that every human being deserves because they are a human with dignity given from God. This includes being bathing, feed, and given hydration. Optional (also known as extraordinary) means of care are those things that can be unduly burdensome or needlessly prolonging suffering.
I discussed this when talking about Charlie Gard, a toddler in the UK who suffered from mitochondrial depletion syndrome and died after his ventilator was removed. It caused a bit of controversy in my Catholic circle on the Facebook, to the point of a friend saying, “What would you do if your child had this?” Well, Charlie Gard died in July 2017. Meanwhile, starting in May of that year, my friend’s child Colby* started having uncontrollable seizures and was diagnosed with another typical of mitochondrial depletion syndrome in September. As much as I am devastated and grieving knowing this sweet boy was given only 3 years to live, my answer to the question of Charlie Gard, mitochondrial depletion syndrome, and ventilators has not changed. Charlie Gard died 12 minutes after his ventilator was turned off, in my mind affirming that his ventilator was an extraordinary means of care.
Now comes the tragic and obscure care of Alfie Evans. If you want more information on optional and obligatory means after reading this post, also read about Charlie Gard. Ventilators are typically thought of as optional means because they are invasive and painful. Ventilators like being forced to breathe out of a straw, and sedation with ventilators is a given after they are placed. When patients do not give off any overt signs that they find the tube and machine find painful, it usually signifies significant brain damage. Whenever we have patients like this in the Emergency Department, everyone involved in the case knows this is an bad sign. In some cases, the damage from a head bleed or whatever else can be reversed. In many tragic cases, it cannot.
Alfie’s ventilator was turned off on Monday, April 23rd, and lived until 2:30am on April 28th. It is difficult reading any article to discern what the boy received and was denied aside from the ventilator. However, this article from The Daily Mail wrote that Alfie was receiving oxygen (just not through a ventilator) and water. His father, Tom Evans, stated in that article that Alfie was denied oxygen, food, and water for 6 hours. As Tom Evans stated for The Daily Mail on April 25th:
“He is still working, he’s doing as good as he can.
But we do need him to be supported … in the next hour it’s going to be hard but we will need him to be supported in the next hour or two.
Because he’s been doing it for nine hours totally unexpected, the doctors are gobsmacked and I do believe he will need some form of life support in the next couple of hours and I think he ought to be respected and given that.”
– Tom Evans
Charlie Gard and Alfie Evans need to be differentiated as two unique cases here: Charlie died 12 minutes after his ventilator was turned off. Alfie Evans survived without a ventilator for about 5 days. Charlie Gard had a diagnosis that was backed by genetic information that he had a terminal disease called mitochondrial depletion syndrome. Alfie Evans was never able to be given a definitive diagnosis. This lack of diagnosis makes Alfie’s case all the more difficult and tragic.
If we knew what he had, could it have been reversed? Are there any similar cases with that could offer a probability of recovery? Is there any way to know if a ventilator is even a helpful means of care? Has anything that has been given slowed or accelerated the brain degeneration? Is there anything left that hasn’t been tried? If so, do the risks of treatment outweigh the benefits, or is there reasonable hope of benefit?
Too many unknowns exist for me to say anything meaningful or make a definitive statement on what should or should not have been done for Alfie Evans. But I can say this: death is still a mystery, and tragically, children and adults die of illnesses we do not know enough about to cure them who never make it on such an international stage.
Take my classmate’s cousin. My classmate is a sweet pediatric oncology nurse in my same nurse practitioner program, and she told us recently that her cousin has a type of leukemia that has failed all treatments. No other treatment options remain, and she still has cancer in her body. She is dying of an illness we cannot cure.
Take my own cousin. He died of leukemia when I was seven. My earliest and only memories of him (aside from the funeral) are of him writhing on the ground in pain. He was given all available treatments until nothing remained. He died of an illness we cannot cure.
Take an infant who dies of sudden infant death syndrome (SIDS). We literally have the name for a syndrome that we cannot define and cannot cure for an infant who dies suddenly. We have associated factors but no known cause. Infants die of an illness we cannot cure.
Maybe that tangent is purely in response to comments I have seen that say “No more cases like Alfie Evans.” Sadly, children die. It is tragic, and there’s no other way to put it. It sounds like Alfie was one of those children who tragically die from an illness we do not know enough about. From what I can gather (which is limited because of the lack of medical information in the news articles), Alfie had some sort of degenerative brain disease previously unseen and unknown that caused him to have significant brain damage. It sounds like the damage would have eventually spread to his brain stem (if it had not already), shutting down his drive to breathe, which would led to his death from respiratory failure.
Alfie Evans sounds like one of the children we cannot cure. But did we treat him with the dignity and respect owed to each person while he lived?
The friend who texted me this question also sent me this article from The Spectator, America Magazine, and this excellent article from Notre Dame. The last one is very worthwhile reading because it touches on something vital that I think most articles miss: as Catholics, we can never directly will the death of someone. We can recognize that technology is limited, and we can recognize our curative means are hurting someone more than they are helping them. However, we cannot and can never intend to remove a technology from someone so the direct effect that that they will die. Our intent in our actions matter, even if the outcome is the same. This comes from the principle of double effect.
The principle of double effect states that a foreseen bad outcome can have a justifiable good action if: 1 – the act itself is good or morally neutral, 2 – only the good or morally neutral act is intended, 3 – the good act is not a direct result of the bad effect, and 4 – the good effect is proportionate to the bad effect. The principle of double effect is why pain medications that could hasten someone’s death can actually be justified. It’s the same reason why terminating a pregnancy for the health of the mother is never justified.
In Charlie Gard’s case, I agree that the ventilator ought to have been removed. However, just as it is problematic in the case of Alfie Evans, the courts’ methodology in getting to ventilator removal was dangerous. Their argument was all about quality of life, not futility of care. The difference seems small, but the intent is very different. The courts are willing the death of child instead of recognizing that nature is taking its course and not interfering and causing pain.
As members of the body of Christ, we need to protect the weak and vulnerable. This includes the dying, no matter the age. As our society continues to emphasize the young and able, we Christians need to be especially protective of the weak and vulnerable. As St. Paul wrote to the Corinthians:
“But as it is, there are many parts, yet one body. The eye cannot say to the hand, “I do not need you,” nor again the head to the feet, “I do not need you.” Indeed, the parts of the body that seem to be weaker are all the more necessary, and those parts of the body that we consider less honorable we surround with greater honor, and our less presentable parts are treated with greater propriety, whereas our more presentable parts do not need this. But God has so constructed the body as to give greater honor to a part that is without it, so that there may be no division in the body, but that the parts may have the same concern for one another. If [one] part suffers, all the parts suffer with it; if one part is honored, all the parts share its joy.”
– 1 Corinthians 12:20-26, emphasis added
I understand why so many of my good Christian friends are worked up about Alfie. It comes off in much of the news cycle he has been abandoned by society, deemed his little life too unworthy to live because of his profound disability and needs. The courts and the way they made their decision certainly reaffirms that sentiment. My fear is that good Christians will want keep all patients on ventilators and invasive means of care at the end of life when removing curative means is not morally wrong when done with a just intent, as defined in the Principle of Double Effect.
The Catholic Bishops’ Conference of England and Wales released a statement on April 18th, 2018, before Tom Evans went to Rome and Pope Francis began to talk about the child. Just like in Charlie’s case, I’m not reading much from the Pope that is all that different from the local Bishop Conference statement, as outlined in this Washington Post article.
However, Pope Francis did tweet these two statements:
So, what exactly does the Pope mean by “everything necessary” and “new forms of treatment?” Really, Papa Frank, I would love clarification because I’m at a loss. If you’re gearing up for an encyclical on bioethics, I am all ears!
Still, when a child has been in the hospital for over a year, I have a hard time believing nothing else was tried. However, in the case of Charlie Gard, a lot of controversy (and argument on my Facebook page) stemmed from not trying an experimental treatment called nucleoside bypass therapy that an American physician Dr. Hirano said could have had an “11% to 56% chance of clinically meaningful improvement” for Charlie. Too, the therapy for Charlie is so experimental that it requires a compassion waiver to use it because it has never been used in a clinical trial. Experimental treatments are not necessarily cures or even miracles. And, if it’s worth noting, my friend has never used it on Colby.
I have not heard of such a miracle option for Alfie and his brain condition aside from a Polish doctor named Dr. Izabela Pałgan who said he was not dying. I could not find an unbiased website in English that explained her thought process. However, I agree with her that Alfie was not brain dead. His eyes opened to voice. People without brain function do not do that. However, that does not completely rule out that he is dying, and without more clinical knowledge from firsthand taking care of the him, I cannot know how sick he was.
Alfie was granted Italian citizenship and could have been treated in Rome, which was blocked by the British government. Would the Italian doctors have a second opinion or a definitive diagnosis on his disease? Did they have ideas for another course of treatment? If not, would they give him more humane end of life care? Would they have been willing to give him better hospice care? In this case, Alfie should be allowed to leave.
I understand the hesitancy of British government to allow Alfie to move. There’s inherent risks with any transfer. Too, at some point, parents in their heartbreak can be in denial and their desire for extraordinary means of care are no longer good for the child. Sometimes, people (providers, government, however it works) need to step in. I get that.
I had a trauma patient not that long ago who was incredibly sick. The trauma surgeon (the attending) told everyone as we resuscitated him that he was a do nor resuscitate for medical futility reasons meaning if his heart stopped, we would not work to reverse it. He was a trauma, meaning something unknown was going on that was causing his body to shut down. While we worked to reverse it, we did not know what it was and were aware it could overcome our abilities, technologies, and interventions. The attending was saying she did not want us to put him through the pain and suffering of cardiopulmonary resuscitation (CPR) when it had not likely benefit.
I was relieved. I also have a lot more respect for this attending. With that trauma, I worked just as hard as I have with any other trauma. In fact, I worked even harder because he had a variety of vasopressors to titrate to maintain his heart function, a ventilator breathing for him completely, and blood products to administer to replace his lost volume. He was incredibly sick. Just as all of us worked and labored for that trauma patient, I hope and pray those involved with Alfie Evans did the same thing.
At some point, we just have to admit that our technology and knowledge is limited. We cannot cure everyone and everything. Sadly, children do die.
However, we do have a choice in our intentions on how it happens, and that intention matters. As Dr. Edward Sri taught in a video on ethics on Formed.org (which unfortunately I cannot post because it is a paid subscription), we tend to think of ethics as this large, looming questions such as what is right and wrong in the case of Alfie Evans. However, in classical ethics, ethics is more about if we are becoming the person we want to become.
In the case of Alfie, the question should not be “do we stop invasive care on a terminally ill toddler?” Rather, it ought to be, “do we want to be a society that stops invasive care on a terminally ill toddler because we think his life is not worth living or do we want to be a society that stops invasive care on a terminally ill toddler because his life is worth living but we recognize that our technologies cannot save him and because we respect his dignity and worth, we are going to stop invasive care because we want him to be comfortable as his body shuts down?”
I pray we all want to be in a society that thinks the second.
I want to live in a society that stops invasive care because it recognizes that the worth of each dying person. I want to live in a society that stops invasive care because death ought to be at home surrounded by loved ones instead of at a hospital surrounded by strangers and tubes. I want to live in a society that stops invasive care because it is in the best interest of the patient.
To summarize my thoughts on Alfie and difficult cases such as his: When done with the right intent, I have no problem with a ventilator being removed.When done with the right intent, I have no problem with stopping optional means of care. I have an issue with starving people to death and denying them basic, ordinary, and morally obligatory means of care.
Optional/extraordinary means of care is so difficult to discern because it varies by each case. As Grisez and Boyle write in Life and Death With Liberty and Justice (prepare yourself for a very long quote):
“But while a dying person might desire various forms of care, such a person also might well choose to refuse therapy of a more active sort, even if aggressive treatment could prolong life considerably. Several considerations might be regarded as adequate grounds to refuse treatment.
First, sometimes treatment is experimental or otherwise risky. A person who is dying, just as one who is not, might prefer to avoid treatment which carries with it some danger of bringing about an excepted result, such as immediate death, increased discomfort, or an alteration of one’s disposition.
Second, some treatment is itself painful or brings about other experienced conditions which are undesirable. One who is dying might well choose not to undergo pain, to prefer a somewhat shorter but more pleasant life.
Third, in many cases the requirements for the application of medical care would interfere with the activities and experiences which one desires during the time remaining. For example, one might well refuse care which would take one away from one’s family or one’s work. One might prefer to spend one’s last days in a pleasant retreat rather than to spend one’s last months in an intensive care unit.
Fourth, many people object to certain forms of care on the basis of some principle. A Jehovah’s Witness might refuse life-prolonging or even life-saving blood transfusions. Anyone might refuse a heart transplant if the heart had to be taken from another not already dead.
Fifth, there are a variety of reasons why persons find medical care psychologically repugnant. Those who are not dying generally overcome the repugnance; those who are dying might well consider such feelings adequate ground for refusing life-prolonging medical treatment. Among the factors which make medical treatment repugnant are shame or embarrassment at being seen and touched by others, humiliation at being dependent upon other people and even on machinery to carry one’s vital functions, impatience with treatment which does not yield felt benefits, resentment against physicians and other persons administering care who seem too detached and insensitive or too professionally cheerful and optimistic, and irritation at being aroused, fussed over, and disturbed. Such psychological repugnance to treatment provides much of the content of the concept of indignity which lends plausibility to the slogan “death with dignity.”
Sixth, in many cases medical care for one individual makes very severe demands upon others – for example, the depletion of a family’s financial resources or the tying up of medical facilities which could actually be put to use for the benefit of others. Persons who are dying might well prefer not to impose such burdens on others. Here we are considering, not costs and resource allocation as an excuse for neglecting the care of individuals, but the probable legitimate desires of the individuals themselves which only indirectly reflect these factors.”
– Grisez and Boyle, Life and Death With Liberty and Justice
If new treatment is inherently risky, or if the pain is too great, if more treatment would keep Alfie away from his family before his death, if the treatment were from embryonic stem cells (or something else morally repulsive to the patient), if the treatment were adequately psychologically repugnant, or if the treatment was too burdensome for his family, Alfie might elect to forgo it. But Alfie was 23-months old with what articles called a brain similar to severe late dementia. He clearly cannot make decisions for himself. When an individual can no longer or cannot make this judgement call, parents are called upon to do so, and if needed, the state acting as guardian.
However, dying (as mentioned before) is a difficult term. As Grisez and Boyle write,
“The concept of dying has an inherent vagueness, and the criteria for recognizing a person as dying are not always easily applied. The vagueness of the concept arises because it depends upon the probability that some existing condition will be the cause of death, and this probability is not precisely specified. The criteria for recognition can be difficult to apply because misdiagnosis is not uncommon; treatments considered ineffective sometimes succeed. Dying patients sometimes recover and live for years”
– Grisez and Boyle, Life and Death With Liberty and Justice
Is Alfie Evans dying? Yes. Actively? Well, it did happen in days, so I guess so? Is it clear why? No. Is it humane to discontinue a ventilator? Yes, it appears to be disproportionately invasive based on care goals. Is it humane to discontinue oxygen? No, because it can be delivered in a harmless manner and even at home easily. Is it humane to discontinue food and hydration? Only if his body cannot assimilate it anymore or if it causes serious complications, as the National Catholic Bioethics Center outlines here. People stop eating and drinking at the end of life as their body shuts down, within days to hours of death. No one needs to be force fed as they die, but no one ought to die of starvation either.
Sadly, as the National Review pointed out, as much as we think this is a uniquely British problem, cases similar to Charlie Gard are happening in the United States. The New Yorker recently had an article in February about what it means to die, examining the Jahi McMath case who was declared brain dead.
As a pediatric intensive care unit nurse responded to the article,
I face morally distressing situations on an unfortunately frequent basis. Brain death is one of the most difficult concepts that families and health-care providers deal with in medicine, suspending everyone involved in an agonizing purgatory. However, as medical management and technology improve, we must continue to consider the ethics of certain decisions, including those made by parents and by physicians. Many of my colleagues regularly discuss whether the fact that we can do something necessarily means that we always should do it, and the complexity of this issue contributes to the high burnout and turnover rates of PICU nurses. On a daily basis, I ask myself these questions: What is life? What does it mean to truly be alive? What does it mean to live as a child? I am not talking about arterial flow or atrophy of a brain stem, but about the experience of being a child. I don’t know the answers, but I have seen that, in situations like Jahi’s, the child can sometimes get lost amid disagreeing adults.
Rayna Eisenhut Coccari, The New Yorker
Where is Alfie in this argument? What is truly for his good? If his parents are too distraught to make a good decision, what is the best choice for him? What is to care for him in this difficult time?
More that that, what is death in the 21st century when we have all kinds of machines and interventions that extend life? That is a question that continues to become more and more complicated. However, the simple answer is what Pope Francis said at the end of his Wednesday audience on April 18th:
I would like to call attention once again to Vincent Lambert and to little Alfie Evans, and I would like to emphasize and clearly confirm that the one Master of life, from the beginning to the natural end, is God! And our obligation, our duty is to do everything to protect life. Let us silently think and pray that the life of all people, and especially that of these two brothers of ours, be respected. Let us pray in silence.
– Pope Francis, Wednesday audience, April 18th, 2018, emphasis added
We protect life in always offering care when we cannot cure. We protect life when we do not measure someone’s dignity by their function and utility. We protect life when we do as we can to heal and bring others to health but ultimately acknowledge that we are all mortal. As Pope Francis stated, God is the “Master of life,” and when thinking of how to care for others, we need to think of how God Himself would take care of His Beloved.
So, as Pope Francis tweeted at Alfie’s passing:
I too am moved by Alfie’s death. I too want to pray for him, his parents, my friends, Colby, my classmate, her cousin, my family, and anyone else who has needed to deal with the death of a child. Death is a mystery, and a painful one at that.
As the Ethical and Religious Directives for Catholic Health Care Services states, “the task of medicine is to care even when it cannot cure.” We cannot cure every illness, as was the tragic case of Alfie Evans. However, we can and must always care.
* Name altered to protect privacy. Please respect this toddler’s privacy if you know him in real life and pray for him, his parents, his brother, and all who love them.