Alfie Evans 6

[CamomileTeaShotofVodka]

Following on from the last thread. If there's one already please do delete this one.

Remember not to speculate or make negative comments about the family or discussions will be stopped.

Thoughts are with Alfie tonight

Such an important and sensitive topic.

Lulu brilliantly said.

Shatners did you see the abuse the police got in response to that tweet?

Sometimes I feel like we live in a world where those in authority are scared of the general public.

"This case has, as I have said on every thread I think, very serious legal implications for the future and discussions need to be had going forward on what happens for the next similar case, now that we have had two of them."
I think the legal and ethical principles have been very clear in both cases (the ethical principles on which the law is based, I mean). Some people seemed surprised or disagreed, but the law itself seems sound and I agree with it. What is perhaps open for discussion (unless people really want to argue for a wholesale change), is procedural change can we improve systems so we don't have these long drawn out legal cases, can we improve public order issues (like perhaps being able to ban protests outside childrens hospitals as well as outside abortion clinics although seems madness to have to argue that noisy protests outside wards full of sick babies is a bad thing and we should perhaps try harder to prevent it! ).

I'm proud of our legal system and the principles on which it is based, and I'm proud of our judges and health professionals (and other hospital staff) who do their best to make sure those principles are adhered to.

It has certainly made me think about what I would want for myself should the worst happen.

I have thoughts on euthanasia that I won’t go into here but I believe as science advances more the question can we keep someone alive rather should we - will come up more often.

mighty great posts up thread.

@SomeDyke, I said anything practicable. If the medical staff feel that an MRI is practicable - not detrimental to Alfie, eg not requiring intubation/ventilation - then performing it might help the parents finally come to terms with Alfie's condition, which can only help Alfie.

I fail to see how what I said could in any way be interpreted as experimenting on him!

sunwhere I’m not sure what you mean when you say if you get dementia you want to decide when you are going to die. What are you suggesting? That people with dementia get bumped off by the medical profession?

Even in countries where euthanasia is permitted, being of sound mind and undertaking it voluntarily is an essential part of the process.

Why on earth would you do an MRI on a dying child?

The results won't change the outcome of his condition, or his care at all.

They cannot take the risk of an acute deterioration and or death occurring within the scanning machine or room. It would grossly interfere with Alfie right to have a peaceful passing, ideally surrounded and embraced by the people who love him.

The only way to mitigate this risk would be to electively reintubate him. This would firstly be an appalling and confusing mixed message to send to his parents and the public, as well as a step backwards in his care plan, as well as illegal as it currently stands without a further court order. Secondly, and more importantly, although we have good reason to think Alfie's experiences if he has them are very limited, elective intubation is highly invasive and uncomfortable. Even tiny babies that are barely conscious will be given morphine for this process. Alfie would probably have to be paralysed, it is the only way to relax the jaw enough to safe to the procedure. Even so, there would be a risk of delay in case a tube cannot be inserted and he also cannot be bagged through a mask. The head has to be tipped back and the jaw protruded whilst often, someone applies pressure to an area in the neck. Then a plastic tube, the largest that will fit to prevent leaking, is pushed between the vocal cords. Most people who have undertaken a general anaesthetic can attest to the fact that they are left with a sore throat and jaw afterward. If the process is unusually difficult and becomes and emergency in order to prevent immediate death from paralysis and not breathing, then is not unheard of for facial bruising, broken teeth or bleeding from the traumatised airway to occur. Afterwards, a machine artificially pushes air into the chest. Complications of artificial ventilation include pulmonary haemorrhage, pneumothorax, accidental sudden extubation, lung damage.

It is not as simple as send him to the MRI scanner he'll be fine, even if it is that simple most of the time. He's a very unwell child! He is not a normal low risk child who in the worst case scenario of failed intubation is very likely to be bagged until the paralysis wears off, and if they have a sore throat can be given an ice cream and watch a dvd.

Sometimes I feel like we live in a world where those in authority are scared of the general public.

In situations like this they are and with good reason. The authorities have very little control over serious civil unrest. I recently watched LA92 on Netflix, which was both fascinating and terrifying. It documents the riots in LA that were a result of the shooting of a young black girl and the beating of Rodney King.

And yet, Shatner, the pro-life campaigner Caroline Farrow has tweeted:

But expressing one’s anger at a public institution (even if misplaced) is not a malicious communication. This is very dangerous territory.

The opposing ways scenarios and information are being interpreted by different parties is fascinating (for want of a far better word).

This document:

www.judiciary.gov.uk/wp-content/uploads/2018/02/alder-hey-v-evans.pdf
Page 10, point 28. At that time, neither Dr R nor F wanted further scans, but the judge said:
"As emerges I took a different view. Crucial to the decision I am being asked to make is the need to ascertain, as accurately as it can be, the present level of Alfie’s awareness. Accordingly, I considered that an up-to-date MRI scan was a significant component in the broad sweep of evidence that was likely to inform this assessment."
But now the judge has made his decision. Hopefully explains where the information about who wanted scans and when comes from.

A scan 1 week ago was a completely different question because he was stable and already intubated at that time. Even then, an investigation or intervention has to be justified in the best interests of the person it is being done to.

On Radio 2 Jeremy Vine now

Shrimpi. Thanks for explaining. I have experience with adult Intensive Care but not paediatric. Clearly, from what you say, an MRI would not be practicable for Alfie.

In which case, TE will return to the courts

Thespringsthething: the independent review of the Ashya King case had access to all the relevant evidence. Do you think that possibly their opinion was better informed than yours?

No, I know a lot about how 'independent reports' are written and presented, they are not a decree from above, but written by 'experts' some of whom have quite a strong agenda to highlight certain facts and downplay others. I even do it myself and have to continually check my own biases.

Proton beam therapy is extremely likely to become the gold standard treatment for brain tumours in young patients, and England is years behind in providing this and has been sending patients (not Ashya King as he was deemed not eligible/needed it) abroad on a very limited basis. Would I pay for or fight for a more targeted treatment for my child? Yes I would. Would I debate the merits of chemo given the lack of really good evidence and appalling side effects? Yes, although I would probably still go ahead.

I am able to read the clinical evidence which is not nearly as certain and certainly wouldn't allow you to predict an individual child's prognosis as has been claimed here. I would get opinions from not one but two or more clinicians from different countries with better treatment options than the UK, and then only would make my decision. I think it was ludicrous to then issue an arrest warrant for the parents, and no 'independent report' will make me think otherwise, whatever its intentions.

I love the NHS and the consultants are often amazing, but they are heavily invested in keeping the status quo and innovation is difficult in a centralized system.

SunwheretheFareyou

I have set up a medical power of attorney, I know my mother would be exactly like TE, since she died I considered changing it but I have kept it as I don't want my dad having to make decisions and trying to second guess what I would want.

@BoreofWhabylon

You make a fair point that interventions that help Alfie's parents do have an indirect benefit to him, if they allow his parents to be more present for him, to accept what is happening. And also, Alfie's parents have their own rights and everything should be done to help them. In paediatrics you treat the "whole family".

But also, downsides to Alfie have to be considered and weighed against these indirect benefits.

It is also worth considering truly, whether an MRI scan is a key to their acceptance (when he has already had several MRI scans the results of which they have struggled to accept) or just another desperate request for something to be done, or potentially an angle for Alfie to be re-intubated (and I say that with the utmost sympathy for his parents).

Thirdly, that messages arising from actions (such as now undertaking a further MRI scan) that are confusing about the direction of his care, also have the potential to harm his parents understanding and clarity - which also carries an indirect harm to him.

Thank you @ Lulu

thespring the advantage of proton therapy is that it's more targeted than X-ray, so you don't irradiate tissue you don't want to. Irradiation if the brain in children can lead to a reduction in IQ so obviously it's best to avoid it if we can, hence why proton therapy is often used for paediatric brain tumours. The type of cancer Ashya King had was in the cerebrospinal fluid, so regardless of whether X-rays or protons were used the entire brain and cord needed to be treated. Therefore there's no advantage to using protons for this type of cancer, because you're not going to spare any brain tissue anyway.

@BoreofWhabylon

(love your name)

Well it isn't necessarily clear! It's possible there is some benefit to Alfie that we, the public are unaware of. The situation could change. I don't know, I am just trying to create some context because often things appear straightforward or simple or risk free when they are really not. I would expect with the amount of attention and the court room involvement, AH are being extremely careful to make considered decisions about Alfie's care and how to respond to the requests from his parents.