Alfie Evans continues to cling to life as of this writing. Charlie Camosy, the Fordham theologian and ethicist, writes about how the Evans case differs from the similar Charlie Gard case that infamously preceded it. Excerpt:
As with Charlie Gard before him, Alfie Evans’s death is being aimed by the very people whose vocation it is to help and protect him. The difference in Alfie’s case is that, because he has continued to breathe, the pretense of “removal of burdensome treatment” is patently absurd. In a situation that was no doubt distressing to those who hoped he would die, Alfie’s continuing to breathe has clarified the true object of the act of removing his ventilator.
Of course, as with Charlie before him, we had more than enough evidence to make such a judgment, even before Alfie was extubated. The primary judge who refused to allow Alfie to travel to Italy was concerned with Alfie’s brain damage, not with the burden of treatment. Alfie’s disability is likely to be profound, and thus, according to the judge, it is in Alfie’s best interests to die.
Given all that we still have to learn about the brain and its relationship to the functioning of a person, the judge may simply be wrong. In a separate case, a baby born with only 2 percent of normal brain tissue now, inexplicably, has a fully functioning brain. Case studies show that patients who lack a cerebral cortex may still know who they are, crack jokes, and recognize themselves in photographs. Some children born with hydranencephaly can laugh and cry, understand the difference between familiar people and strangers, and prefer certain kinds of music.
It may also be the case that the drugs in Alfie’s system have suppressed thalamic connections in the brain, thus giving the false impression that much of his brain is gone.
But even if we suppose the judge is correct, he and others are making the case that certain profoundly disabled children are unworthy of life. And when one combines Alfie’s case with that of Charlie Gard, the UK has now established the clear and frightening precedent that parents who have a different understanding of what kinds of lives are worth living may have their children taken from them and left to die—in the children’s own best interests.
As bad as this trend is, when it is combined with other trends in the developed secular West, one can see a clear logical path to its getting even worse.
Camosy points out that the Evans case is part of a clear and ominous trend in Europe towards forcibly euthanizing the disabled based on someone else’s decision that the disabled to not possess life worth living.
What logical impediment keeps a state from deciding that various kinds of disabled children are unworthy of life, taking them from their families by force, and aiming at their deaths—in the children’s own best interests?
The developed secular West now finds itself at one of the most serious crossroads we can imagine. Will we follow the logic of the moral and legal principles laid out in countries like the UK, Belgium, and the Netherlands? Or can we muster the moral will to challenge such principles directly and forcibly?
This is what I can’t get my mind around in this case: why does it matter so damn much to Alder Hey hospital and the British state that this little boy die? He has the opportunity to go to another country where his life can be prolonged. The Italian doctors have said they know of no cure for Alfie’s condition as it has been diagnosed, but they want to keep him alive long enough for a new set of doctors to examine him. If the Evanses reach the end of the road, and his mother and father decide to let Alfie die a natural death, that will be possible. But if there exists a chance, however small, that Alfie might live, and it won’t cost the British state anything, why deny it to this child, to his parents, and to the people in Italy who want to help them?
This has to be terrifying to British parents. What if the state decides that your child’s life is not worth living? You will have no choice but to allow the state to kill him. There will be no escape. The Pope and the military of another country can be standing by ready to help you escape and get to a foreign hospital, but it will do you no good, for the Crown will have ordered your death.
For what? For what?
I encourage everyone to read the judgment of the High Court judge in the matter. It strikes me as thorough and fair-minded, insofar as he has carefully weighed the medical evidence — but wrong. Here is a statement to the court (quoted in Justice Hayden’s judgment) from Prof. Dr. Nikolaus Haas, head of pediatric cardiology at Munich’s university hospital. Dr. Haas testified on behalf of Alfie’s father, and said he believes the UK should release Alfie to go overseas for further treatment. Dr. Haas:
“16. To summarize this young boy Alfie is at the best of my knowledge unfortunately suffering from a severe, very likely progressive neurological disorder that will ultimately lead to his death. In agreement with the statements of his medical team I have difficulties to believe of any cure for this child. It is however unclear how many time [sic] he will be able to share with his parents. Apparently he has so far lived longer than initially projected. Withdrawing of treatment will immediately lead to his death and this can certainly not be in his interest. It is clear that in his best interest there should be a possibility for Alfie to live the possibly short rest of his life in dignity together with his family if this is the wish of his parents at home, which I believe is the best for him, outside a hospital or in a hospice or other form of caring institution. A dedicated neurological rehabilitation institution may be of additional benefit because there may well be other treatment and stimulation therapies I am not aware of”.
Notice that Dr. Haas — who is on the Evans family’s side — acknowledges that the prospects for Alfie are very grim. He says, however, that it is better for Alfie to take advantage of some chance at treatment that might help him live, than to certainly die in Alder Hey hospital.
Justice Hayden blasted Dr. Haas for making a Nazi Germany reference in his testimony. Dr. Haas repeated it in a media interview:
Prof Dr Nikolaus Haas, the head of paediatric cardiology at Munich’s university hospital, who gave evidence on behalf of Alfie’s parents, argues that he should be allowed to travel to receive care.
Speaking on BBC Radio 4’s Today programme, Haas said: “It is not a question of whether this is medically right or wrong. The question is what is ethical. In Germany, we have learned from our history that there are clearly some things you don’t do to handicapped patients. You have to be supportive.”
Last month Haas was criticised by a judge for using similar “inflammatory” language over the case. The doctor challenged the decision to turn off Alfie’s life support and insisted the boy was well enough to be taken abroad.
He said: “I’ve seen the child and I have a lot of experience in paediatric intensive care as well as transferring children with air ambulance around the world. Clearly Alfie would not be disturbed by any form of transport. The next question is which teams would like to care for him. And there are teams worldwide so why can’t you send this child to these teams who would like to support him.”
To recap: it is the opinion of UK medical officials that the best interests of Alfie Evans are to be allowed to die. Justice Hayden agrees. Clearly Justice Hayden’s ruling is within British law, so this is not the actions of a rogue justice. What’s more, the Italians and the Germans do not propose to try to keep Alfie alive indefinitely. They don’t even think his prospects for recovery are good. They only want to explore every possibility before consigning the child to death.
Why is this not in Alfie Evans’s best interest? If he stays in the UK, he will certainly die this week. If he goes abroad, he will likely die later. But we don’t know that for certain. Shouldn’t the presumption be that a child’s best interest is to live, not to die — especially when there are resources being made available to pay for the child’s further treatment and care, at no cost to the British Crown?
Why must Alfie Evans die now, in Britain? Why do his parents not have the right to take him out of the country for treatment? It’s not as if they would be removing the child to a witch doctor’s hut in the jungle.
What if this were your child?
UPDATE: This. It’s really something how the usual crowd of Pope Francis’s loudest supporters are staying silent here while the pontiff steps up to speak out for the child’s life.
It’s a seamless garment but the smartest minds know that you never *really* have to be on the same side as the conservatives.https://t.co/cHVD7T4RvL
— Ross Douthat (@DouthatNYT) April 26, 2018
UPDATE.2: This just came in from a lawyer in England, who gave me permission to quote it as long as I don’t identity him:
You refer in your blog post to the decision made by Mr Justice Hayden in the matter. You may also wish to consider the reasons of the Supreme Court of the United Kingdom, responding to an application for permission to appeal there, not in relation to the travel ban but against the denial of a writ of habeas corpus to have Alfie released from his ‘detention’ in hospital. I attach a copy, obtained from the court’s website a few days ago, as I cannot now immediately locate the link.
Paragraph 13 of the decision is one of the most frightening I have ever read coming from a court, viz.:
“It has been conclusively determined that it is not in Alfie’s best interests, not only to stay in Alder Hey Hospital being treated as he currently is, but also to travel abroad for the same purpose. It is not lawful therefore, to continue to detain him, whether in Alder Hey or elsewhere, for that purpose. The release to which he is entitled, therefore, is release from the imposition of treatment which is not in his best interests.” [my emphasis]
It seems to me that the highest court in the United Kingdom is saying in this paragraph that it is unlawful for doctors to do anything but withdraw the hitherto current treatment. They are legally proscribed from maintaining the status quo even if they wanted to. This is as astounding as it is frightening. The court now stands as parent and decides what can and cannot be done, to the exclusion of the parents and even (having heard their evidence) the doctors themselves. To put Alfie back on life support and reinstate his previous treatment would, presumably, now require a further application from the doctors to obtain an order from the court authorising this course of action and declaring it lawful.
No doubt the Supreme Court is simply applying the law as enacted by Parliament and I do not criticise them for it, but this only makes the decision more astounding and frightening: it means our elected representatives think this is a reasonable way for a civilised society to act.
When my son was born nearly 16 months ago, I found to my amazement that I could not take him home until a paediatrician had signed a small slip of paper, to be handed in at the exit, authorising his release. I joked to my wife that we were only parenting under licence from the State. It seems less of a joke now.
Now the priest is excluded from Alfie's room https://t.co/cUnPaaBAHk
— raymond blake (@raylblake) April 26, 2018