Where There is Life, There is Not Always Hope. Ethics, Futility and the Alfie Evans Case

by Dominic Wilkinson

@Neonatalethics

[Updated 22/02/18]

This afternoon, in another case of disputed medical treatment for a seriously ill child, Justice Hayden in the High Court concluded that treatment should be withdrawn from toddler Alfie Evans against the wishes of his parents.

See below for a press release on the Alfie Evans decision. I will add further reports and links to the court transcript when it is available.

See here for ethics commentary and resources on the Charlie Gard case.

See also my recent blog on the Evans and Haastrup cases: Medical treatment disputes and the international second opinion

Details from the court ruling (Liverpool Echo)

Court judgement

Press Release:

Where there is life, there is not always hope.

This afternoon, Justice Hayden, in the High Court in London concluded that continued medical treatment for 21-month old Alfie Evans would not be in his best interests.

The exact cause of Alfie’s condition is not known – there is no diagnosis, which can make it hard to know what the future holds. However, in Alfie’s case, the future, sadly, appears clear. Multiple medical specialists gave evidence in the case. Brain scans have shown severe deterioration over time. The judge described scans showing that large areas of the brain have been “wiped out”. Alfie is totally dependent on life support. He has profound neurological damage. There appears to be no prospect of recovery, and no specialists in this country, or overseas have identified any tests or treatment that have a real chance of making him better.

It is devastating news for any parent to hear that their child is gravely ill.  It is especially difficult in situations when doctors cannot be sure of the exact cause of the child’s illness. However, sadly, despite all of our advances in genetics, it is still sometimes impossible to make an exact diagnosis in a seriously ill child.

It is very understandable for parents to want to hold on to hope, to exhaust every possibility that might make their child better. However, sometimes the sad fact is that medicine cannot cure, or improve a child’s condition. Sometimes the only hope that remains is that a child’s suffering is not prolonged.

The judge’s decision today will be terribly disappointing for Alfie’s family, and for all those who have supported them. However, these decisions are not reached lightly. Doctors do not always agree with parents about what would be best for the child. Yet, doctors only resort to the courts for help in the most extreme of situations, when all other avenues of treatment and of reaching agreement have been lost. Judges in this country have sometimes decided that life support can be stopped for a child, against the wishes of their parents. However, they reach that decision only when there is overwhelming evidence that treatment cannot help a child, and would, in fact do more harm than good.

Justice Hayden recommended that it would now be best for Alfie to receive palliative care. The UK has a reputation for having some of the best palliative care services in the world. There would be no benefit to him travelling overseas, and only risks to Alfie in doing so.

The family might be encouraged by some of their supporters to appeal this court decision as did the family of Charlie Gard. However, based on the experience of other similar legal cases in the UK, there is no prospect of such an appeal being successful. It would merely prolong the agony of Alfie and of his family. It is time to stop fighting, time to let him go.

 

 

 

 

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18 Responses to Where There is Life, There is Not Always Hope. Ethics, Futility and the Alfie Evans Case

  • JUDY MARSHALL says:

    It is difficult for all involved, I’m sure. The only words that remain for me is acknowledged before the Great One that created little Alfie. Parents and loved ones must take comfort in the fact that God sees and knows all. Whether we have a strong conviction or not, the facts are that we all belong to The One who made us and and as we live however long on this earth, we shall surely return to Him and sometimes sooner than later. My hope is that Alfie’s parents and loved ones will know and be comforted that their son is safe and well where he is. Live a life now that will be worthy of seeing Alfie again and be able to spend time with their son that will never cease. I, too, lost a young son and that is the only hope we have is to know they are in God’s Hands and we will see them again!!! God bless the Evans family.

  • GHP Raju says:

    It’s a testing time for Alfie’s parents. The faith in God they nurtured all these years sure will strengthen them to allow Alfie leave for the heavenly abode. True to their faith, I am also sure, that Alfie’s parents will be happy to know and contended that the money saved from de-medication of Alfie will surely be used to save some other lives on whom the doctors have been attending to.
    Trust the objective judgement of the doctors. Their professional skills tried to save Alfie. But their grieving hearts sure will bless Alfie rest in eternal peace.

  • Marcin says:

    Oh dear poor Aristotle. I hope he is feeling better soon. Sending him some cuddles and some to Alfie, I hope he is recovering well. Actually sending cuddles to all of you. Hope your dad gets to Switzerland okay. xxxxx

  • Let alfie evans go to Italy and don’t turn off his life support machine let him go alder hey let him go

  • conserned says:

    Like Alfie our son at age 3 month’s had a brain condition although different, was you could say a BABY P Survivor with none accidental brain injury and retinal haemorrhages. was intubated for 2 weeks , WE do not know his outcomes or the level of permanent damage, No professionals have answers but he has outed them all and prognosis’s , though we have too fight for everything live in hope, research all we can and be positive like Alfie’s mum and dad , children’s brains can surprise us all is a unknown area. Our son now age 3 continues too surprise us all, hope all works out and Alfie allowed too follow the natural course

  • steve says:

    Stop this god stuff please. This year, 2.5 million children will live with HIV,40,000 will contract HIV, 30 children will die from AIDS every hour, 175,000 will contract cancer, 9,000 children will die every hour from malnutrition, 96,000 will die from cancer, 1.5 million will die from diarrhoea, 175,000 will drown, 260,000 will die in car accidents, 45,000 will die from poisoning, and many thousands more will die even more gruesomely. It is wrong to give people false hope.

    • Judy Marshall says:

      Hello Steve. As long as life is in a person’s body, there is hope. It is not the doctor’s place to play God, nor you, nor I. It is the parent’s God given right and them only to decide about their child. They get to decide if the plug is pulled. No one wants to hear cold statistics in the face of hardship such as this. It is not for you to dole that out to anyone except in your own responsibilities, then you can tell that to yourself and your family in this situation. It is your right to stop your own god-stuff if you choose. This child is one of the statistics, and is still just as individual and separate to his parents. They don’t look at him as a number in your statistics. You wouldn’t either if it was your loved one. The only false hope here would be to listen to you which is no hope at all. Please keep it to yourself unless you have something kind to say to these already weary people!
      Respectfully, thank you!!!

      • Steve says:

        I have compassion for Alfie and his parents. What I can’t bear, is people taking the opportunity to evangelize. Let us stop building churches, temples and shrines and build schools and hospitals. Let us stop praying and start donating to research into these dreadful illnesses.

        • Judy Marshall says:

          Thanks Steve. The fact is these people don’t fit your ideology. Right now they are far removed from and couldn’t care less about what you or I can’t bear. These people love God and apparently spoke of their faith and that is evangelizing. They have the right to evangelize any way they choose and their supporters agree. They have found themselves in a horrible fix! They don’t need people worried about evangelizing, not building churches, temples, shrines and schools and hospitals. You go right ahead and donate all you please but leave these poor people alone, they can evangelize to their heart’s desire and that is none of your or my business! Thanks!!!

  • A. ALAM says:

    Compared to the earth volume, you Steve, and me are but a mere speck. Compared to the Sun, our Earth is a speck. Compared to Aldebaran, our Son is a speck. Compared to the Galaxy, Aldebaran is a speck. Compared to the known Universe, our Galaxy is a speck.
    What are we then, You Steve, and me, in comparison to Universe? Much less than the invisible atom I suppose.
    And yet, by our “mind” we are able to encompass the Universe.
    Doesn’t this suggest that our mind is “immaterial”?
    All we can say when we are confronted with the suffering of innocent children is “it’s a mystery like so many other mysteries in the Universe”. Far from justifying despair, mysteries are for Man a permanent incentive for further research.
    In all conscience and honesty, your statistics are not convincing. Hope for life after life is reasonable and comforting. Let’s respect it.

  • A. ALAM says:

    Corrected post:
    Compared to the Earth volume, you Steve, and me are but a mere speck. Compared to the Sun, our Earth is a speck. Compared to Aldebaran, our Sun is a speck. Compared to the Galaxy, Aldebaran is a speck. Compared to the known Universe, our Galaxy is a speck.
    What are we then, You Steve, and me, in comparison to Universe? Much less than the invisible atom I suppose.
    And yet, by our “mind” we are able to encompass the Universe.
    Doesn’t this suggest that our mind is “immaterial”?
    All we can say when we are confronted with the suffering of innocent children is “it’s a mystery like so many other mysteries in the Universe”. Far from justifying despair, mysteries are for Mankind a permanent incentive for further research.
    In all conscience and honesty, your statistics are not convincing. Hope for life after life is reasonable and comforting. Let’s respect it.

  • Steve says:

    A. Alam

    To draw conclusions about the nature of the Universe or cosmos on the basis of inner feelings or experience is to resort to primitive reasoning; I do not know or understand, therefore a god or whatever.

    Re the mind: consider the schizophrenic, the autistic, the brain damaged. Are you saying someone or something has removed their soul or mind?

    Re statistics: you can check them with WHO. What I am saying is that we should stop building churches, temples and shrines and build hospitals to treat people and schools so people can enjoy the wonders of the cosmos.
    And just for info, the atom has been photographed so it is not invisible. Oh and stop reading Chopra, he is a scam artist.

  • A. ALAM says:

    Hi Steven,
    1. Mind is not a feeling. Did Newton discover the law of gravitation by his feelings?

    2. A toothpick needs an intelligent designer. And you want me to believe that this awesome Cosmos came into being out of the blue! You must be kidding –

    3. We do not know what causes schizophrenia, autism or Alfie’s disease. But we do know that concluding from them that there is no Creator, is jumping to conclusions.
    How about the billions of people who are perfectly healthy, physically and mentally?
    That’s simply taken for granted, isn’t it?

    4. I have never said your statistics “are wrong”. I have said – and still maintain – they “are not convincing”. Among 100 people, 99 are healthy and 1 is sick.
    What can we logically conclude? Simply that we don’t (yet) know the cause of his/her sickness. Period. Concluding there is no Creator is jumping to conclusion.

    5. I am aware the atom has been photographed (as far as I remember by a smart student).
    It’s clear that I am here using “invisible” in its primary meaning as reported by all dictionaries including Oxford’s: not visible to the (naked) eye.

    6. I have honestly not read anything from Chopra, but I will and must thank you for the cue:
    He must have some interesting arguments in favor of the Intelligent Designer☺!

    Have a good day, Friend!

  • Judy Marshall says:

    Why do some people feel it is their plight in life to correct other people’s decisions. Hope is as individual to each person as fingerprints. Some people believe and their faith in God sustains them through every single thing in their life. It is ok if you don’t believe in the hope of God’s promises, God gives all people that freewill choice. Alfie’s parents do and the public has no right to spill judgmental insights on these poor suffering, weary parents. They need support and encouragement , not judgment. If they didn’t believe in the “God-stuff” as Steve said in a previous post, we still need to be respectful. Common decency would go a long way in helping those in difficult times like this. I highly recommend the “God-stuff.” Don’t knock what you don’t know. Don’t knock down other people until you’ve walked a mile in their shoes. Best wishes to all!!!

  • Steve says:

    Judy Marshall
    I am not you are not reading posts in their entirety. Maybe I was not clear enough, apologies for this. Religious fundamentalists were all over Alfie’s parents. Christine Broesamle, an American “pro-life” activist based in Italy, got in touch with Evans. Her friends were advising Charlie Gards parents about flying him to Italy for treatment, she said, and the same could be done for Alfie. Unsurprisingly, Evans took up her offer of help.
    After a month of working on the case from Rome, Broesamle answered what she described as a call from God and moved to Liverpool. Since last September she has lived in Merseyside and played a key role behind the scenes, advising Alfie’s parents.
    This week in an interview with a Christian fundamentalist radio station in the US, she said there should be riots in Britain over Alfie’s treatment by doctors at Alder Hey hospital, whom she accused of being “hellbent” on killing him “to cover something up”. This woman should not have exploited their dire situation.

    • Colin Lynes says:

      Steve,

      You’re a gem. A light in the darkness. I receive Facebook postings of conspiracy theories that a vaccine caused the disease. Then Big Pharma paid Alder Hey to kill Alfie with a lethal injection to cover it up and all the Doctors and Judges were paid as part of the conspiracy.

      These posts are educated people, some of them health professionals spreading this and telling us vaccines are wrong; the majority of them are radical Christians.

      It represents an intellectual emergency.

      Thanx,

      Col

  • Judy Marshall says:

    Respectfully, if I understood correctly. Facebook is as reliable as my cat for real information. Every radical and wild eyed commentator in the world hovers around Facebook. I would be hard pressed to put much validity in that. This is how lies and half truths gets people stirred up for no good reason. I’m not saying this is untrue, but you can not pass this out as fact either. The concern I have is the radical statements made attaching Christians and innocent people to negative unfounded comments like this. If they were radical non-Christian, would you say, “the majority of them are radical non-Christian?” People are so itching to use “Christian” in the negative. I’ve never heard it said, ” the non-Christian community came together to aid in any disaster.” I hear more about Christian based groups and churches doing a heck of a job responding to the needs of others. The second thing is Alfie’s parents. Can you imagine how you would feel if you read this about your child? They are Christians and this sort of comment is unfounded and hurtful to them and the statement, “kill Alfie with a lethal injection” is the last thing you would want see in print. That is totally conjecture! Did I misunderstand your post? Thanks!!!

    • Steve says:

      The difference between secular and religious charities is that the secular do so without a desire for reward in the afterlife and without strings attached. We have seen the gross abuse of Christian missionaries for decades. The victims of disaster don’t have to convert or pray or accept bibles with secular organisations such as Doctors without borders. Mother Theresa in particular has been found out, as have a number of other Christian charities. Check out Thaumaturgical.com for list of humanist charities. Col is quite right to highlight the Christian Taliban, they are doing so much harm around the world.

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