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.

Incidentally, someone said on another thread that it is illegal in some countries to remove/turn off a ventilator. I just thought I'd make comment on that. I recently wrote an assignment and had to do a lot of comparative research on withdrawal of care and ethics for it. In some cultures, it is deemed unethical to withdraw treatment that has already been started, but not to withhold treatment that has not begun. Legally, there is a difference between withdrawing and withholding, and you can do one, the other, or both.

People often talk about having a "DNR" form (Do Not Resuscitate), which moved on to "DNACPR" (Do Not Attempt Resuscitation) to emphasise that many Resuscitation attempts are just that, and an attempt is no guarantee of success. Now, thanks to David Cameron's "No decision about me without me" movement, we have "ReSPECT" forms (Recommended Summary Plan for Emergency and Critical Care) which all seriously ill patients should have completed. The doctor discusses the range of treatments that very sick patients can have, discusses the patient's feelings on the balance between life preserving treatment and comfort persevering measures (accepting that death would occur) and then makes a recommendation on the treatments that should be offered in the event of critical illness.

Treatment plans could say "DNACPR; for ventilation, not for filter, for vasopressors." Or "Full active treatment" or "DNACPR, not for ICU, not for antibiotics, not for NIV" (typical for a stroke patient who feels that they are really ill, and are likely to die of a chest infection, but don't want treatment).

Back to withdrawing care. In countries where it is illegal/against culture to "turn off" a ventilator once started, there are ventilators with timers on them, that can be set to run for a period of time, then have to be reset to continue. If the doctor chooses not to reset the ventilator to run, it will stop. Because the doctor isn't manually stopping the ventilator, he/she will not have withdrawn treatment, so will not have violated any rules.

That post sadly reveals a heavy degree of denial. There was, for instance, clear evidence that Alfie had regressed seriously before he was taken to hospital.

Although that description of his life is massively inaccurate. By 8 months his mum had been raising major concerns about his development and he had the development of a two month old. There’s a lot of wishful thinking there.

He just wants his son back, and can't accept the truth.

The thing is, user, you haven't seen all the reports, including those from doctors instructed by the parents. Do you think that maybe the court, which has, is possibly better fitted than people reading internet reports to decide whether the hospital is acting in Alfie's best interests or not?

Calledyou Please can you tell all of us what you mean by this:

Here we have an option for treatment for this little boy being denied

What is this miraculous treatment of which you speak?

Yes, and the fact he's got worse in hospital is despite everything they've done, not because of it.

Except the courts have agreed multiple times that the doctors have indeed acted in Alfie’s interests.

I would hope that those advocating keeping someone alive at any cost would be prepared to have the same done to them; to be in a body that you can't control, to not be able to see or hear but the only thing you might experience would be pain and discomfort, to have no means of communication, totally reliant on tubes and machines day after day; yea if you're happy with that then go ahead; but if it was an animal I daresay you'd be prosecuted for cruelty.
We all want life, but it can't be at any cost, compassion means letting someone go when it is the right thing for them albeit the most difficult and painful thing for yourself.

Lougle Thank you for explaining that. I couldn't understand how a country could make it illegal to turn off ventilators.

I was in tears listening to TE this morning. I've found it hard to condone some of the things he's said and done, but it's very apparent now that he is in complete denial. He sounds utterly convinced that Alfie is going to be fine. He wants to take him home to "sustain his life". Surely someone has to intervene somehow here? He can't keep trying to resuscitate the poor boy. I feel desperately sorry for the man but I'm now feeling the same for Alfie, he's not being allowed to go in peace. I would normally totally advocate for parents to have their dying children at home, but I think it could do more harm than good in this case...

The poster who said I am wrong about the treatment of AK hindsight is a marvellous thing. The parents would never have fled and had a European arrest warrant out for them if proton beam therapy had been a treatment option or had even been offered. Carry on in denial

I can’t see how anything but passing away peacefully in a familiar environment is in Alfie’s best interest. It must be too late to move him now as it’s too much of risk of him dying in transit which can’t be best for him. I know the family want him home but isn’t that PICU home for Alfie? That’s the environment he knows.

fenneltea, I totally agree with you. I don't understand the "life at any cost". My worst nightmare is to be trapped in a hospital bed unable to speak, move etc. I wouldn't want that for myself or for anyone I loved.

I feel desperately sad for his parents, to watch your child die must cause heart ache beyond belief. I cannot judge them for their actions because I know that I would kick up merry hell to get all possible help for my kids. They are not doctors and they are doing what they think is the best for their child. I have nursed patients on end of life pathways and sometimes it does go on for quite a while, some times it's extremely peaceful and a good death and sometimes it isn't.

I do struggle with the withdrawal of fluids, not food as much because when the body is breaking down they will use far too much energy attempting to digest it, plus often organs are failing/have failed so they can't absorb any nutrition from it. I have never liked the withdrawal of fluids because the thought of someone dying of thirst is too much for me.

Asha Kings parents proved that the medics involved in his care were not right about his prognosis and managed to get him out of the country for treatment. I am not suggesting that there is any cutting edge treatment for this poor child's condition, but, Asha Kings parents actions and positive outcome have given hope that there is another answer, that Doctors are not always right.

TE is in denial I can't believe him and his AA honestly believe Alfie can recover, I really hope they don’t get to Italy and that Alfie passes soon so that Alfie's suffering can end soon

Ashya King’s parents have reduced his long term survival by 30%.
In the end he pretty much had the same treatment he had in the UK. Including the chemotherapy they were resisting.
The NHS wasnt wrong at all. They didn’t say he was going to die. They offered treatment A. They wanted treatment B. In the end the Hospital gave them most of treatment A (in europe) and a bit of Treatment B. AND the end result is reduced life expectancy.
Tell me how is that the NHS getting it wrong?!

Alfie has been breathing independently for 3 days now. This is extremely rare for someone who has been intubated for 17 months.