Something I don’t understand Archie Battersbee

Something I don’t understand about Archie Battersbee

What a terrible situation. It’s absolutely heartbreaking isn’t it.
And I was quite shocked to read that Archie’s family have even been denied the right to transfer him to a hospice.
I’m not a medical person and there’s something I don’t understand, that maybe someone knowledgeable would be able to explain?
If the poor child is in fact brain stem dead as the doctors say, then surely he wouldn’t suffer pain or discomfort to be moved to hospice?
I don’t understand how it would be detrimental to allow the parents to do this?
It seems very hard hearted to me. .

There is no gain to him to be moved. He is effectively dead. By the time they remove the artificial life support to move him, he is likely to have died already or to die en route.

The whole thing is so dreadful, as it has been played out in the spotlight of publicity which subjects the parents to influences that are not based on reason. Those poor parents.

I heard that his condition is so unstable that he might not survive the transport. How awful if he died in an ambulance. Terrible terrible tragedy. Wish I knew what the online dare was that led to his being in this state so we could be sure that others could be alerted to the dangerousness of it.

They’d have to move the ventilator, heart pumping machine plus all the other hydrating and other machinery attached - all large, heavy and needing trained staff - would the hospice have staff to use these? If they disconnect then his heart would immediately stop and he’d be gone before they got in the ambulance.

We have to assume that the very experienced ITU doctors, and the various judges involved, would move him to a hospice if at all possible.

If they move him as he is with all the equipment, how are they to find sufficient staff to cope with the equipment and to then facilitate the withdrawing of it in a hospice? There are some hospices that accommodate residents with ventilators, usually those on them long-term who come in for respite for their families for a period of time.

Life support is much more than a ventilator. When support is removed highly skilled staff have to be at hand to deal with the consequences - unfortunately when things are 'switched off' it doesn't always result in peaceful slumber then death, things can get distressing and action is needed to prevent/alleviate this.

I don't why people think it's all so easy.

Others have explained well. But your own answer says it all

'If the poor child is in fact brain stem dead as the doctors say, then surely he wouldn’t suffer pain or discomfort to be moved to hospice? '

so what is the point, if it is not for his benefit?

When my husband was transferred to a hospice, we were told by a nurse at the hospital that if things changed he`d be brought straight back to hospital. When he arrived at the hospice we were told that wasn`t true, he wouldn`t be treated there, it was purely care until death. So surely Archie wouldn`t be receiving medical care at the hospice?

I have great sympathy for his family but it really is just time to let the poor boy go I’m sure the hospital will allow the family to say their goodbyes in a secluded and peaceful way.

I have tried to explain on the other thread the amount of equipment that will be keeping his bodily functions going. How large it is -a roomful. How sensitive and easily damaged it is. How much of it is installed into the ICU systems and cannot be moved. I cannot envisage how it could be transported still connected to Archie. Simply in practical terms.

When it is disconnected all the bodily functions will cease. More or less immediately. There will be no interval of moving to a hospice. No gradual peaceful move towards death that some people seem to envisage. Only the machines keep his body functioning.

Some things are just not possible

The hospital need to be sure to do due diligence ie the experts need to deal with the equipment while attached to Archie. The parents are using any excuse to get lawyers and courts involved.

The kindest way would have been for the parents to accept the death situation at the start and to have given the boy a dignified and loving end

It has become a circus at the expense of dignity and very stressful for all the good caring staff at the hospital, as well as the tying up all that equipment which may have been needed for another patient. Not counting the massive expense of the legal routes the courts and solicitors

Hospices do not have any ICU facilities, there would be no-one able to operate all the equipment even if it was all transfered with him, and I doubt the hospital could afford to send it to a hospice when there are so many other sick children crying out for it.

They could certainly disconnect him and put him in an ambulance, but he might not make it.

I have every sympathy with the family wanting to spend as much time with him, and in the best environment, before he goes, but it is really up to the hospital to try and offer that. I would hope he could at least be moved to a room on his own, even though staffing that is an extra burden.

I don’t know the hospital he is in, but my relatives on life support were in individual rooms. The equipment needed takes up a whole room and there is always a member of nursing staff in the room giving one to one individual care, as well as other medical staff who are present at other times.

After the decision to end support was taken, we were shown into an individual family room where we sat with a nurse who exp,wined to us what would happen and what we could expect. While this was happening all the tubes and machines were removed and we were guided back into the room where we could stay with our loved one, touch them, talk to them and lay beside them holding them. A nurse stayed discreetly in the background.but offered support when it was needed to one of the younger members of the family.

We could stay as long as we wished, but afterwards we were taken back to the relatives room and given tea and a snack, which sounds bizarre but actually a sugary biscuit did help with the shock and emotion. A little later the attending doctor came in to answer any questions we might have.

It was all done incredibly sensitively and caringly.

Not long after, I had my second experience of ending life support in a different hospital and it was no less sensitively handled.

I appreciate that people might say, well that was your experience, but I see nothing in the official report to make me think that the hospital Archie is in would offer anything less.

I’m certain the medics treating Archie would have carefully explained the complex logistics of moving their son to a hospice and how it just wasn’t possible.

I think the mother though has got it into her head that the hospital isn’t acting in her son’s best interests, when clearly that’s not the case.
She therefore sees the medical team looking after him as ‘the enemy’ and so she doesn’t accept anything they tell her.

Naming the doctors and nurses on social media was so wrong, and I agree with those who say she will lose a lot of sympathy over that action.

Lathyrus I'll not go into detail but my experience of withdrawal of treatment for a family member was similar. The machines were silenced before the tubes were removed to avoid any crash alarms. They died within minutes. We could spend as long as we wished afterwards. There was always a nurse present who was available, but discrete, and so full of love and concern for us all.

I would support everything Lathyrus has written. This was our family's experience as well.

It is clear that this family are simply not listening or understanding what the doctors say. The boy's mother has been asking that palliative oxygen be available to her son after the Life support equipment is removed.

This means that she still thinks it is possible that her son might manage some independent breathing or breathes, after the equipment has been removed. For this to happen the child would have to be alive. I also suspect that if when oxygen is blown it to his mouth, if his mouth.throat move in the wind pressure, she will claim this movement is indepenent and a sign that he is till alive.

I understand her grief at her loss and her difficulty accepting that her son has died. But I find some of the things she has said over the last few days, make me feel very uneasy : talking about her son being 'execcuted', this request for free oxygen, the move to the hospice, as if his death might take time after the support systems are removed. Is she having a breakdown or is she being manipulated by the very dodgy organisation funding her appeals.

Unfortunately not everyone has the capacity to deal with a dreadful situation like this well. I feel very sorry for the medics who are having to deal with the family, it must be very distressing for them. I understand she wants her son to go to the hospice so that he can die with dignity, this is so insulting to the medical staff who have cared for her son since April but I think she is very angry and unable to come to terms with her son's death. Just so sad for everyone.

foxie48 Archie will die as soon as the life support equipment is removed. He is unlikely to love to reach the hospive. However the court turned down this request this morning.

Even (especially) a huge modern teaching hospital will be able to provide (if they aren’t doing so anyway) a quiet, private side ward/room where his family can be with him
The monitors will be set to silent and support gradually withdrawn to minimise any possible distress.
It’s not a big “switch off” in a busy ICU.
I know, I’ve been there.

M0nica

foxie48 Archie will die as soon as the life support equipment is removed. He is unlikely to love to reach the hospive. However the court turned down this request this morning.

Yes, I'm aware of that, I have not suggested that he should be moved to a hospice. I think you have misread my post. My daughter has on many occasions had to tell relatives that their loved one is dead or will not recover. It is profoundly distressing but it's something doctors are trained to do with compassion (not saying they all manage that though). Some relatives find it impossible to accept that there isn't something that the doctors can do to keep them alive. They can get very angry.

I think we can all be understanding from a distance that it is better to be in the hospital, etc, etc but I think it might be more difficult if it was your young child where maybe some of the medical staff may not have had the bedside manner they might have in the circumstances.
It always appears to me that NHS staff think that family are deaf and they often can be heard talking about freeing beds or telling the physio they must discharge. It sort of gives you an impression they are not making decisions in the patient's best interests. You are often given varying explanations about treatment required and when things are likely to be done so there is another area where mistrust sets in. Add in the shock the parents must be in that their beautiful boy is in that state and you have the perfect situation for 2 sides entrenched in their positions. I can see why they might not want the people they have been fighting with around them as Archie's heart stops. I think it is tragic all round and I don't know what I would do in the circumstances. I'd like to think I could put Archie's needs above all else but until I am in that situation, I can't be certain.

Condolences to all you Grans who have been in this sad situation. It's heartening to hear that families were treated so well by NHS staff in these tragic circumstances. for you all.

It would be a huge and complicated process to move Archie to a hospice, I fully understand that. However a move would be as much ( if not more) for the parents as it would for the child. Archie will sadly never recover , however if he could be moved his parents / family will receive enormous professional support and that is so necessary for them after all that has happened and is still to happen. When the parents loose Archie they will feel they have done everything they possibly could for their son. Coupled with that they will always have the memory of the support the hospice was able to give them - a very necessary and important fact. They will also have access to counselling from the hospice after Archie had died - should they feel the need for that. Hopefully they will feel some comfort and peace , a hospice can facilitate this .

We need to remember that cases like this arise everyday.

By that I mean, even as we talk about this child, tens of families through out the country are facing the shock of discovering that as a result of accident or design, a member of their family, who was alive and well yesterday, today is on life support and their families are being asked about organ donation and turning life support equipment off.

It is likely that in all these cases, despite their grief these families will listen, understand and accept what the doctors tell them and acquiesce with their requests.

Refusing to accept or believe the doctors happens very rarely, and when it does happen it does not mean that that family is anymore grief stricken than any other family in their situation, merely that for complex reasons, we really do not understand, they will not believe what the doctor's say.

Unfortunately this disbelief makes these families very vulnerable to groups that for their own, usually political, reasons are willing to encourage them in their disbelief and fund endless, fruitless appeals. The results are to further traumatise an already traumatised family and drive a wedge between family and hospital, that can only be to the damage of the family and make their ability to come to terms with events so much more difficult.

I think it is the mother who needs help and treatment, to get her to accept her son is dead, and has been for three months. No amount of appeals and legislation is going to bring him back to life. She has had communications from lawyers and medical establishments, both here and abroad, all taking what ever money she has or can borrow.
She undoubetdly feels guilt for letting him get involved with that internet challenge, but you can't keep a watch on a 12-y-old every minute.