Alfie Evan's case in the UK

[Shadoewolf]

Our UK members can probably inform us better...

The jist of it...Alfie is 2, and after lots of seizures from an unknown cause, his brain has completely degenerated. They cannot make a definitive diagnosis as to why but an MRI shows 70% has been destroyed. He has been on full life support since 2016. The High Court ruled after more than a year of getting evidence to have his support removed and it was, on Monday. He continues to breath with supplemental oxygen via nasal cannula and is getting nutrients and fluids. The Pope offered to allow him to fly to Italy for continuing palliative care. He was made an Italian citizen for that purpose but the hospital and Court in the UK won't let him go, saying such action is futile and the trip could kill him. "Alfie's Army" has tried storming the hospital and are creating an extremely hostile environment for other patients and staff. UK'ers feel free to help/correct me here...

Almost dead on in similarities to the Charlie Gard case in the timeline and the rulings. And of course the Republicans are using it to rally against universal health care. 

Thoughts? If there's already a topic on this feel free to merge, but I searched and got no results so.. 

[WhatWouldJohnCrichtonDo?]

I saw a story about this on BBC World News and immediately thought about Charlie Gard, too. My heart hurts for Alfie, his family, and the health care workers at the hospital, who (I'm betting) just want to do what is best for all the patients they care for. I wish political groups would leave it all alone, but I know they won't. 

[Ozlsn]

I honestly have no idea what the best solution is. If the Vatican are willing to pick up the tab for the air ambulance and palliative care... then I guess it comes down to whether it will do more harm than good. He is going to die, whether in the UK, in Italy or in transit. I would be interested to see what the medical evidence presented to the court was, and what the reasoning behind refusing him permission to be transported was. Unlike Charlie Gard there isn't even the possibility of treatment being held out for (that I'm aware of at least), it's basically keeping him alive in the hope of a miracle.

[Glasgowghirl]

I sympathise with his family but I believe the doctors made the correct decision and they are getting abuse for it by supporters of Alfie's family. People seem to be misinformed and think that in Italy he will get miracle treatment, he won't. Alfie has severe brain damage and won't get better, even if they are able to diagnose him. My Facebook feed is full of people calling the hospital murderers, I haven't posted my opinions on the case because I have people who have lost children as friends and don't want to come across as heartless but I believe it's best to let him go now and end his suffering.

[victoriasponge]

This case and the Charlie Gard case have pissed me off in and of itself. But the fact that their 'Christian' supporters protested a children's hospital is sick. Surgeries were postponed, parents couldn't get in to their critically sick children, and the children coming in for treatment were left scared, unsure and worried that the doctors were monsters. All they are doing is prioritising one sick little boy over every other patient in that hospital and that is just immoral. I was really angry when I heard about that. The UK has 'parental responsibility' rather than 'rights' per se, see here, and parents don't have the right to overrule medical decisions made by doctors. They do have the responsibility to agree to medical treatment, but when there is no agreement it goes to court. It's not just the British courts that have thrown out their case that their rights have been infringed, the European Court of Human Rights did too.

As tragic and horrific as it is to lose a young child, I honestly don't understand what they expect to happen. The Italians have offered palliative care, though over a longer period so they can hunt for a diagnosis. I don't believe his father will let him go even if they do have a diagnosis, because then he's going to push for treatment or 'cure' for a little boy who has essentially lost his brain. And I honestly don't understand the point, I don't think it's in the best interests of Alfie (who is actually the patient) to just get transferred and have more tests when the chance of treatment seems so close to impossible.

They've also turned it into a debate on euthanasia and abortion (thanks Christian lobby groups - thought we didn't have you in the UK) by spreading misinformation that part of Alfie's treatment plan was an injection of death drugs. They were sedatives and painkillers. My gran was given the same thing when her life support was turned off. Right now Alfie is off machinery (I believe) with just oxygen. Alfie's father says his continued existence proves the doctors are wrong and he's fine, the doctors have stated they never suggested it would be quick as long as Alfie still had oxygen because his lungs and heart are fine - it's his brain function that isn't.

The whole thing is a clusterfuck. I apologise for the long post - it's a topic that I've really struggled with.

[Palimpsest]

I wish politicians, uninformed protesters, and religious freaks (and that includes the damn pope) would stop exploiting very tragic circumstances and grieving families to further their own agendas.

Alfie is seriously brain damaged and is going to die.  There is no miracle cure.  Let him go in peace, in the UK, with palliative care only.

[laPapessaGiovanna]

I don't know what possesses our politicians. Apparently giving Alfie, a dying child who is going to die despite all the costly medical care they are willing to throw at him, Italian citizenship, so we can pay for all the costly medical care in the Vatican owned hospital, is a no brainer. But if you are a foreign national kid in good health, born in Italy from legally immigrated tax-paying parents, grown up in Italian schools, then you have to "earn" your citizenship, you undeserving leech. Nevermind if you are an unaccompanied minor who risked his/her life crossing the sea only to be "lost" once you land at the hands of criminal organizations, in that case you don't even exist as far as they are concerned.

Why didn't the pope give him Vatican citizenship, since he cares so much?

And why can't people let him go in peace?

I swear, for believing in the vanquisher of death Christians are a tad bit too fearful of death. They are the ones who believe in afterlife, isn't it? Then why the fuck they can't let people just go when their time is up?

ETA I know, not all Christians, many still retain good sense, unfortunately they aren't the most vocal ones.

[Gemini]

My heart bleeds for the parents, but this just confirm for me that parent’s wishes should not overrule the best interests of a child.

From what I understand, Italy are offering only palliative care, yet it’s being hailed as ‘treatment’ by this ridiculous lynch mob that have gathered both in person and in social media, against the hospital.

The medical professionals, patients and parents of the other children deserve so much more than this, it’s disgusting.

 

[louisa05]

This is a good analysis of the issue from the Jesuit magazine America that explains that the court/hospital decision is not against Catholic teaching and addresses how the American pro-life politics has hijacked the issue. 

https://www.americamagazine.org/politics-society/2018/04/26/case-alfie-evans-what-does-catholic-tradition-say

I'm seeing people on my social media making the exact same false arguments based on abortion politics that are talked about in this article. It is so disheartening. 

[Ozlsn]

Same here - my most WTF reaction so far has been to "I can't believe they would let him die without a diagnosis!"

I was just looking at the comments wondering if they knew how many people do in fact die without a diagnosis, and wondering what they think a diagnosis will do in this case exactly.

[Briefly]

3 hours ago, Ozlsn said:

Same here - my most WTF reaction so far has been to "I can't believe they would let him die without a diagnosis!"

I was just looking at the comments wondering if they knew how many people do in fact die without a diagnosis, and wondering what they think a diagnosis will do in this case exactly.

Exactly, a diagnosis just means that they would know what he has/caught/etc. It might suggest a treatment, but not necessarily.

[unsafetydancer]

This whole case is so sad because, yet again, the fundamentalist crowd have jumped onto it and made it a "pro-life" issue. The way social media has been used to stir up hatred towards the medical teams who are caring for Alfie has disgusted me. I have at least one friend on facebook who has been sharing the Alfie's Army posts that claim the doctors are "killing" him to save the NHS funds. 
This is not how the NHS operates at all. Alfie has been given the best possible care at all times. The doctors and nurses who have treated him have worked really hard to find out why his brain is degenerating but they have been unable to reverse it or even stop the progress of his illness. Many of them will probably have become attached to him and will be haunted by this case for the rest of their lives because they are human beings and will always wonder if they could have done more.
Keeping anyone alive after their higher brain functions are gone just feels futile to me. All of what made that person who they were is gone, they will never think or talk or remember anything and will just exist as a warm body on life support; I would never choose such an existence for myself or anyone I care about. I have watched my grandmother deteriorate because of Alzheimer's diseases, lose her memories and her personality long before her body finally ceased to function and it was far harder than if she had just died before she ceased to be the person I had known and loved all my life. 
I understand why his parents don't want to accept the horrible reality of the situation but this has to stop. Alfie will never walk out of the hospital and he will never be alright again. What his parents need is kindness and understanding and space to grieve, not an angry social media mob who are out for their own agendas and who threaten the people who have worked so hard to give Alfie even a slim chance at survival. The fact that other, very sick, children have been terrorised because of this situation makes me feel very angry; these adults should know better and should go and reevaluate how they respond to such a sensitive issue.
I wish that, instead of storming a hospital full of very unwell children, these people would consider donating to charities that research rare diseases. I have worked in the charity sector for over three years and the organisations that need help the most are the ones that cover the rarest and most serious conditions. It's sadly too late to help Alfie but other children might be saved in the future by research. 
I hope that his family can eventually come to terms with his tragic situation and celebrate the life that he did have, as well as finding comfort in each other. 

[laPapessaGiovanna]

12 hours ago, louisa05 said:

This is a good analysis of the issue from the Jesuit magazine America that explains that the court/hospital decision is not against Catholic teaching and addresses how the American pro-life politics has hijacked the issue. 

https://www.americamagazine.org/politics-society/2018/04/26/case-alfie-evans-what-does-catholic-tradition-say

I'm seeing people on my social media making the exact same false arguments based on abortion politics that are talked about in this article. It is so disheartening. 

Unfortunately the pope missed the memo and the actual position of the Vatican is that post-Christian British society and science worshipping doctors love to kill babies and destroy families. They don't say it with such words (well, Radio Maria and Radio Vaticana do use said words almost verbatim), but their actions speak louder than the pope's double meaning words. Granting to Alfie's father an audience with the pope for the following day in 20 minutes is not normal. Nor is normal to tell the father to bring the kid to a Vatican owned hospital, nor lobbying to give him Italian citizenship.

Vatican position is very clear and it's not the one outlined in the article you linked.

[nvmbr02]

Alfie Evans has passed away

http://www.bbc.com/news/uk-43933056

[victoriasponge]

RIP sweet boy. The world is cruel. All we can do is keep fighting to find cures and treatments for these rare conditions. 

I hope his parents get the love and support they need. And as much as I hate the Christian Legal Centre, I hope they stick by them now the battle has been lost, and offer them true Christian support instead of moving on to the next vulnerable target. 

[nastyhobbitses]

I'm so pissed off at so many people involved in this case:

The pro-lifers who hijacked this family's ordeal for their own agenda, perverting what should have been a very difficult private family matter into a political circus.

The Italian government for joining in the circus and giving him citizenship (over refugee children on their very shores being trafficked into gangs or worse), letting this sick charade continue.

The protesters who are so selfish and single-minded that they hurt other families and doctors/healthcare staff at the hospital. 

People who are giving Alfie's parents false hope and encouraging them to continue pushing for painful, risky, and ultimately futile interventions. 

Alfie's parents for tacitly and not so tacitly encouraging all this. I understand that they're going through something no parents should ever have to go through, but like with Charlie Gard's parents, I start to wonder how much more quality time they'd have with their little boy if they'd just tell the protesters and media and pundits to fuck off and let them figure out where to go from here. 

I guess I'm even more sensitized to all of this because my grandmother died last week from heart failure. She was 96 years old. The doctor suggested a major surgery to fix the problem...ignoring that she was almost 100 years old and, was already incredibly tiny and frail (she looked like E.T. when they dressed him up in people clothes). The doctors, and then quite a few family members, gave her and my grandpa false hope that she'd go right back to normal and be back up and walking and enjoying an active lifestyle.

Nope. She died in pain and disappointed that the surgery only made her weaker and took away what independence she had left. She attempted suicide in the hospital once she realized that the whole thing was a big lie...or at least the doctors gave her and my family false hope that just made her more miserable. Had she gotten palliative care from the beginning, had people just been honest with her and with my grandpa about her prospects and that she had reached the end of her life, we all would have had an easier time letting go. 

We're too afraid of accepting death. 

[Ozlsn]

I hadn't realised Alfie parents were so young (21 and 20). Alfie's father was quoted as saying that after his son survived pneumonia when they were told that he would not they basically felt he could survive anything and so refused to give up on him. I kind of get that, but I truly hope they were able to accept the end, and that they have a lot of support now. 

[EmainMacha]

@nastyhobbitses I can't imagine what possessed the doctors to put a frail 96yr old through major surgery. I'm very sorry for your loss and for the extra suffering your grandmother had.

 

[nastyhobbitses]

2 hours ago, EmainMacha said:

@nastyhobbitses I can't imagine what possessed the doctors to put a frail 96yr old through major surgery. I'm very sorry for your loss and for the extra suffering your grandmother had.

 

According to my mom, it was a pretty young "top gun" type surgeon who really thought he could work miracles. And in fairness, my grandma, as tiny as she was, was a tough old broad and was pretty active and healthy up until the final month of her life, when her heart really started to give out. I think he (and a lot of my family, except for me and my mom) thought that she could handle it and they didn't want to just "give up". He framed hospice/palliative care like an ultimatum or a threat (get this major surgery or you go to hospice), which was totally wrongheaded. I wouldn't be surprised if that's how someone framed it to Alfie's parents: hospice/palliative care/DNR is "giving up", when it really, really isn't. 

[Terrie]

These cases seem to boil down to quantity vs quality. One side says "The move might kill them, but they are going to die anyway, so it's worth the risk to potentially give them extra time." The other side says "They will die either way and it's not worth the discomfort and pain the move will put them through, when there will be no change in outcome."

I know which side I fall on. 

[Briefly]

My boss just lost his 100 year old mother. She was a special lady and we all loved her.  She was pretty good up until the last few months, when she basically wore out physically.  She was ready to go, she wanted to be with her daughter that died about 2 years ago and with her husband of 77 years that died 3 years ago.  She was in a retirement community and it was very nice. She was mentally sharp until just a few weeks before she died.  My boss talked to the medical staff and they gently suggested that she be moved into hospice care and allowed to go naturally.  Her medications were discontinued except for any pain medication if needed, but she showed no signs of pain.  She was basically asleep for a few days, one night she woke up and said her son's name. Her nurse got him on the phone, he told his mom he loved her and she said she loved him and then she went back to sleep.  About 3 days later, she passed peacefully.  We all consider it a blessing, actually.

[Bethella]

We're going through something similar with my 101-year-old "honorary" grandmother (she was my first babysitter). She fell and broke her hip on Easter Sunday (the head/ball broke off the femur). They initially weren't going to do surgery but she was in so much pain that they changed their minds. She has completely surprised everyone and is still alive. I'm not sure if she's actually healing but she's in less pain now. 

[unsafetydancer]

Does anyone else wonder if we will continue to have a lot of these cases now? That's two in the past year here in the UK that have ended up turning into a nationwide debate on social media with "supporters" of the parents taking matters far too far. With the ongoing case surrounding Jahi McMath in the US as well, I wonder why this seems to have become a regular occurrence. I sometimes wonder whether it's partly down to the "everyone's sick of experts" culture over here in the UK where people have become irrationally suspicious of doctors and are convinced they have some hidden agenda. Whatever it is I hope it will stop because it's horrible and certainly doesn't help the people involved.

[Terrie]

I think one factor is the 24-hour news cycle. We get a lot of "miracle" breakthrough stories (most of which never pan out in further studies), and even just the slow, steady day-to-day advancement of medical science. So there's a lot of "If that, why not this?" Plus, the coverage of these stories means lots of people deciding to follow suit, same as any other phenomena that gets heavy coverage and produces copy cats.

[Glasgowghirl]

I believe Alfie's parents were manipulated and given false hope by an American expat living in Italy who hijacked this case after Charlie Gard died to further her profile agenda she was the one who got the Catholic Church involved, she was persistent in asking them. If the Italian hospital could have given him life saving treatment beyond what Alder Hay offered then the courts would have allowed him to go. Hard working doctors and nurses are being called murderers, they are all deeply affected by his death too.