Alfie Evans

[IcySlippy]

www.liverpoolecho.co.uk/news/liverpool-news/alfie-evans-parents-plead-sons-14231597

Anyone following this?

@Shrimpi

Again, another one of your comments has seriously stopped me in my tracks and forced me to look at thing from another perspective. Thank you for this. I hadn't taken into account the fact that, in effect, nursing staff are almost being forced to "harm" (I'm not using that word in an inflammatory sense, just because I can't think of a better alternative) this child, through invasive procedures, whilst this court/protestor drama has played out over months and months beyond the hospital walls.

Your comment has only increased my admiration for the nursing staff involved in his care, who are doing their absolute best in what must be the most trying and frustrating of circumstances.

Its very difficult. I think Alfie's parents are making the wrong decision for him. But they are also suffering.

Their entrenched mindset, the involvement of the media and the "army" have helped to bring them to a point where its very difficult or impossible to turn back. How will they regain trust in the team looking after Alfie now that they believe that team is abusing him? When he dies they are going to conclude he was "murdered". For some reason to them this is easier to accept than his disease. But its an awful thing for them to live with for the rest of their lives. In a different time he would have died without the parents feeling there was a decision for them to make.

Most hospital trusts don't allow photos / videos to be taken on Trust premises by patients or staff.

Really? There are loads of pictures of adults and children in hospitals all over social media in all sorts of situations.

I nurse people for whom a natural death is what their bodies are striving for, but they’re forced to remain alive in extremely poor states and with obvious pain and discomfort. I do feel like a state sanctioned torturer most days. I try to shut off my feelings and force myself to accept that this is what society demands now, but it is horrible and I hate that I’m part of it. It wasn’t like this when I trained - I’ve nursed for 29 years now. I will retire early and I will feel guilty for the rest of my life for the things I’ve had to do to people.

Death is not the worst thing that can happen to people.

Someone has posted people who have had problems with the hospital should all get together and start a lawsuit.. They haven't themselves ever used the hospital mind

Where I work,the parents are allowed to take photos/videos of their children. The staff, obviously are not allowed phones while on duty.

That sounds awful efrig. Which patient group is this?

Elderly for many years and currently younger people with conditions such as ms and neurodegeneration. There are ways of forcing people to remain alive for years, but it causes considerable pain and suffering.

@Efrig

Please don't feel guilty. This really isn't your fault.

Efrig I completely understand where you are coming from and it’s the main reason why I left intensive care. I felt like you that I was torturing patients who we all knew would never leave ICU alive. Trying to keep a suffering, dying patient pain free and sedated is one of the most stressful things I have ever had to do. This army don’t understand that side of things, they don’t know how uncomfortable it is to change an ng tube or how changing an ET tube could actually cause a patient to arrest.

Efrig

I've not seen the photos (and I don't really want to) but surely they are evidence of why it is not in Alfie's best interest to be kept alive. Pressure sores, bruising, bodily fluids are are pretty much inevitable. My healthy, happy (very loud) child could be in a wet/dirty nappy for an unknown period of time - I checked him regularly but also knew he would let me know if he was miserable. Sometimes he'd complain the second his nappy was damp other times he'd happy sit in pee and poo without a sound. Alfie can't alert anyone if his nappy is wet, he can't turn if his ear is sore and he can't wince if a tube is at the wrong angle.

They must still be picturing their healthy baby and desperately wanting him back.

I am speculating (I know no more of the specific details about Alfie's case than any other member of the public) but imagine the following (made up by me) play through of events:

First he has some skills regression/delay, maybe not even that noticeable to first time parents. Maybe they were reassured he will "catch up" (like many would). Then this gets worse, the doctors are concerned but the parents can't clearly see what's wrong, they continue to treat him like a newborn.

He starts to have seizures but they can be treated. Nobody is sure yet what is going on or what the prognosis and Alfie starts lots of treatments. His parents aren't able to understand this uncertainty and maybe even come up with their own ideas about what is going on from the Internet. They are attracted to possibilities with a good prognosis.

The problems that appear on his EEG, blood tests and MRI brain scans are meaningless and abstract to Alfie's parents. At some point the doctors diagnosed a metabolic disease but they can't find the gene or give it a name. Perhaps Alfie's parents come to believe the doctors can't understand or predict his illness. They believe it is just as likely that their diagnosis is correct, after all the doctors have never seemed to know what is going on.

Then at some point he cannot feed, he gets a tube, the parents adjust, they hope he will get better. Then he gets a cold, gets sick and needs non invasive ventilation, but that time he makes an improvement and comes off of it. They're used to the tube now, it doesn't seem so bad because he's a baby. It becomes normal to spend a lot of time in hospital with every minor illness, recurrent admissions for seizure control. They get used to CPAP on and off. They get used to blood tests.

Maybe there is a conversation about prognosis and ceiling of care but Alfie's parents don't really want to have it. They have already lost trust in the competence of the doctors who have never understood Alfie's disease the way they would have expected them to. They investigate their suspicions about the medical team by reading about other people's stories and opinions on the Internet. They start to believe that Alfie is an inconvenience to the hospital. They interpret the end of life discussions as giving up on Alfie.

They are nowhere near ready for him to die. He is living in the hospital at this point, but they are used to it.

One day he deteriorates and needs to be tubed for the first time. The doctors can't know with certainty he won't be able to come off the vent. It's uncertain whether this is a natural progression of his disease or an acute deterioration caused by a virus that might get better. Alfie's parents have already begun to interpret uncertainty as incompetence and they suspect the doctors have an agenda to dispose of Alfie for convenience. They are not ready to let Alfie go because he had a "really good day" just the day before.

Etc

If the deterioration and the step up interventions were less insidious it would be much easier for parents to see the obvious. The influence of the media and uninformed opinions online - it starts off giving parents hope before their baby is really ill, and becomes ingrained. It's a very powerful feeling.

I hear you Owl

@Shrimpi

Your description as to a possible narrative is very good, and very compelling. The "drip drip" of it all, and the gradual adjustments we all make when faced with a person we love who is deteriorating is, of course, absolutely correct and accurate.

I know that it isn't the same thing, and on a much more "everyday" level, but like most adult children, I am noting this with my parents as they are moving into old-age. I keep making mental adjustments, even though I know that very, very slowly indeed the picture is changing and they are not as able, not as active etc. I'm sure they have many years ahead, but I think most of us can relate to these goal-posts which move imperceptibly, but when we look back to a couple of years ago, we could easily see a deterioration.

Thanks again for an excellent post.

I got very involved in the Charlie Gard case and studied it in terms of the legal perspective for a paper on my degree. This involved talking to parents of terminally ill children, etc, and by the end of the paper I felt very emotionally exhausted and involved. For this reason I haven’t spent as much time following the Evans case, but my original opinion still stands, also behind some of the psychology of the so called ‘barmy army.’

Medically the cases are different. But at the centre we have parents disillusioned by their grief, a mass social media following of arm chair doctors and a media circus. All of this contributes to a frenzy, at which the original person in all of this- Alfie- is forgotten.

This is an emotionally charged case. People get so involved by their anger at the battle between parental rights vs. responsibilities that medical facts are ignored. It’s trending on social media, people get involved as they have children or grandchildren, only are exposed to the information parents present and there you have it, they don’t do further research or question it due to the fact they are emotionally involved, and hence we have the social media cult we also see in the Gard case.

People like to feel ‘involved.’ They literally call themselves an army. They feel they are fighting and think they are doing something good. A lot of this is ALL due to social media, the fact a lot of people only follow the Facebook group and are never exposed to material that makes them question it.

The mass following, strength in numbers, etc... fuels their determination and that they must be right if there’s so much support and this results in the the protests, abuse on Alder Hay’s Facebook page and seemingly a lack of common sense.

A lot of these people are not stupid. They will be professionals in their field, teachers, parents... they are just involved on the side we see as ‘insane’ and emotionally charged by a tragic case which has gained a lot of momentum.

I won’t comment on my opinion of the case much as like I said I haven’t paid much attention to the very facts. But I do think that again this is a case where parents who are obviously very traumatised and about to lose a child are not able to make the right decision. Not because they are bad parents or bad people, but because they are so broken and want to cling onto hope. Hence in some cases court intervention IS needed as at the end of the day parents do not have rights, they have responsibilities and if these responsibilities are not met due to grief then the child must always be put first.

Please don’t think I am blaming the parents, however. They love their son, but what they want may not be best for Alfie as they are so clouded with grief and sadness, perhaps in denial, so it’s expected that the decisions they make may not be reasonable. Whatever their behaviour, I think we can all agree that they are in hell right now and probably need a lot of support to get through this battle.

Whether we have lost a child ourselves, or have children, I think we can all appreciate that in this situation a parents behaviour may not be rational.

I spoke to a lot of people on here about the Gard case who told me stories of their terminally ill children and although I’ve changed my username, if any of you are following this case then my thoughts are with you.

Someone close to me developed a neurodegenerative disease as an adult. They died at home in their sleep of undiagnosed pneumonia just before the point at which they would have had to move into a hideous half-life of full-time intrusive nursing care. Thank God.

I think because we look at the medical profession as a caring profession it's easy to forget that medical procedures can be brutal.

My niece had to have another op on her cleft palette. After the op she had a massive bruise on her shoulder. My sister was really upset as she thought they had had to hold her down, but when we asked about it it turned out they had clamped an artery or a vein or something to reduce blood flow to the mouth. It probably would have been better if they had explained at the time, but they were very busy.

We could have taken a photo of that and posted it but it wouldn't have told the whole story. I am very wary of photos used to promote a cause since the picture of the asian lady on Westminster Bridge was proven to have been misrepresented.

Alfie can't alert anyone if his nappy is wet, he can't turn if his ear is sore and he can't wince if a tube is at the wrong angle.

If I just sit and think about that for a second it becomes unimaginable. Imagine being in any sort of discomfort and a) not even being able to change position slightly to relieve it and b) not being able to communicate that you are in discomfort.

That’s picture of the burn looks like a reaction to a plaster to me -possibly one put on to secure a tube?

I think perhaps people are raging against death. People aren’t exposed to it like they were in years gone by. Pre antibiotic and vaccination era, two world wars etc. I think people are much less emotionally resilient now as well. Grief is a sharp and ongoing pain, but it’s the price we pay for having loved ones. It’s the risk we take when embarking on a pregnancy as well.