Archie Battersbee

Jaffacake2

I wasn't criticising the ITU staff communication, I was saying there was a breakdown of communication and trust from the mother to the medics. I am sure that the staff would have been completely open when discussing Archies prognosis with the mum but she was not in a mental state to deal with the realty of the situation.
What I was trying to suggest was that there is a degree of mistrust from the public when dealing with health concerns with doctors. People who write on Gransnet all appear to be knowledgeable, articulate and insightful. But this isn't true of everyone in the country. People often become angry when they don't understand a situation and fearful if they don't feel they are having the right medical treatments.
During the pandemic I was saying to be friend that I would not want to be ventilated in one of the Nightingale hospitals as I didn't think there would be enough trained nurses to safely care for me. My friend said that I would be able to read the paper still and look on the kindle. She had no idea that you would need to be sedated to be ventilated. I was shocked as she is a very intelligent person but it was completely out of her remit.
So fuelled by anxiety and mistrust with no knowledge of life support,brain death, what does the general population understand of Archies case ? Put in conspiracy theories from the internet and sensationalism from the press and it is a more of confusion for people.

this is a very good and thoughtful message.

The comments regarding this sad case have been thoughtfully put and I think none of us know how we would cope in a similar situation. My only comment for Holly Dance is "be careful for what you wish for"

Lathyrus

I did ask earlier nightowl what changes you would like to see in the law.

Obviously you would not involve the medical staff or the courts so do you think parents wishes for their child should be the deciding factor?

Who would be able to challenge the parents decision or would there be no avenues for challenge?

Would we support all parents even if the parents belief would lead to the death of a child when medics are confident that the child could be saved?

I would really like to hear what changes are being proposed and your thoughts on them. How you see them as being better than those safeguards that are in place.

Nowhere have I said I would not involve medical staff or the courts in decisions. I have spent my career working closely with both.

This is what ‘Charlie’s Law’ proposes. It has cross party support and it is hoped it will be implemented by next year

www.itv.com/news/2022-07-20/charlie-gards-parents-wouldnt-wish-court-battle-to-save-child-on-worst-enemy

“I’m sure medical staff would appreciate a better system where they were not the ones making decisions and pereferably one that did not have to involve the courts”

Sorry if I misinterpreted that, but I thought that was what you were saying.
But thanks for the link, I’ll read it tomorrow.

Apologies * Lathyrus* I can see why you thought that from what I wrote. I simply meant I thought medical staff might appreciate not being the ones to have the final say in these tragic situations, whilst anything involving the courts is not only heavy handed but also inevitably involves delay, when time is of the essence.

Thanks for the link nightowl, I hadn’t read about this previously.

Mediation needs skilled practitioners. The Judgement I read indicated it was suggested but rejected by Archie’s parents. Perhaps if it could have been available before the Court became involved, that may have helped.

nightowl

Apologies * Lathyrus* I can see why you thought that from what I wrote. I simply meant I thought medical staff might appreciate not being the ones to have the final say in these tragic situations, whilst anything involving the courts is not only heavy handed but also inevitably involves delay, when time is of the essence.

One of the misconceptions of Charlie’s Law is that’s its allowing parents to do what they want, but that is not the case. It’s finding a middle ground that suits both the doctors and the families so that some resolution can be sorted before it gets to court.

Hard to argue against that.

As Iam64 says, mediation needs skilled practitioners. It also requires both sides to have faith in that skill. I am not sure Archie's mother would have accepted any resolution that didn't accord with her wishes - wishes that were being reinforced by the campaign group supporting her.

BUT - my question is this: we understand from what's been reported so far, it was explained to Hollie Dance that moving Archie was not "in his best interests", and was "dangerous". If the individuals talking to her kept using these phrases, however kindly and gently, but without explaining exactly what was involved - what did it actually mean to her? Because unless they were 'graphic' in explaining what would probably happen to Archie's body during transit, then how could she be expected to understand what "in his best interests" really meant? Did the medical profession, in order to protect her sensibilities, keep resorting to these somewhat vague mantras - I don't know. But if they did, it's hardly surprising (IMO) that she didn't accept their judgment.

The reason I'm 'fixated' on this is because a few years ago I was in a surgical ward in the bed next to an elderly woman when she was given the news that her colon cancer was terminal (those hospital curtains may screen out the 'view' but they don't prevent overhearing conversations - especially if someone speaks in a loud voice). When she queried why they wouldn't operate, her surgeon/consultant told her "we don't think it's in your best interests". But they didn't explain why. He left, saying they would make her as comfortable as possible.

I doubt it was her age (as she later suggested to me) - I was 2 years older than her and had just had a 7-hour, complex, operation, as had other elderly ladies on that ward. I felt distressed for her, which is why I haven't forgotten that phrase... "best interests". In order to accept it as true, one has got to understand the exact reasoning behind it. And that's the dilemma. I sat with her, held her hand and fed her strawberry jelly and ice cream which she both liked and tolerated, until she was transferred to a hospice. But it was sad - age notwithstanding - and the memory has stayed with me. I wonder if she ever knew why she couldn't have surgery, or understood what her 'best-interests' were?

That phrase ‘best interests’ has meaning in law. That means people working in the courts understand it.
We were recently involved in a discussion about palliative not curative care. The consultants explained their decision clearly compassionately and decisively. We could acceit this, painful though it was. Trust is so important and not everyone can accept medical professionals have skills and knowledge that we don’t

In this case so many extra medical opinions were obtained from different experts and they were all of the same opinion. It’s easy to disagree with the medical opinion of one expert but when they all say the same and you still disagree there are going to be difficulties. I read the court notes provided in a previous posting and the medics and judges bent over backwards before reaching decisions. The judge visited Archie in hospital. The transcript said Hollie accepted her son was brain stemmed dead but still wanted to keep him on mechanical ventilation. The family had turned to the church so possibly they were just hoping for a miracle.

nightowl I looked at your link and did a bit of Googling too but, if you don’t mind me saying, I found it a bit vague as to how the process would actually work.

Do you have a link to what’s been presented to Parliament. The hard core language as it were rather than phrase that sound reassuring but don’t actually give the process.

I hope you understand what I mean. It is interest, not criticism ?

I’ve been in the position where one relative truly believed that the miracle could happen. It’s very difficult and causes a lot of anger and bad feeling, even amongst family who know and love each other.

That’s an extremely interesting and I think relevant comment Dickens. The description of the old lady who wasn’t told what her ‘best interests’ were must have felt confused. It’s a shame that she put it down to her age when from what you’ve said, it clearly wasn’t. I would have wanted to know exactly what was meant by that comment. Also it could be that cases such as this cause some people to feel that older people won’t get treatment, when the opposite is actually true. Obviously this is not the case with Archie as he was very young, but I now wonder, did the parents understand the term ‘best interests.’ It’s really a rather vague term and sometimes people need the details to understand.

My 94 year old mother refused point blank to agree to Do Not Resuscitate being put on her notes when she was admitted to hospital about two years ago. I think she thought that meant she wouldn’t get treatment as needed, which is absolutely not true, and she has received a lot of treatment since, especially since she fell several times since then and has had a lot of treatment. My daughter, a doctor, said to me that her Nana didn’t understand that resuscitation at Nana’s age would have meant broken ribs, probable brain damage and other internal injuries which Nana would not be able to recover from. My daughter also told me that the medics caring for her Nana can decide independently that DNR would have been in Nana’s best interests and include it in her notes without consent, they just prefer to get consent. Clearly Archie’s parents would never have agreed to this, and in any case, he was already being resuscitated, but had failed to respond.

Lathyrus I also found it a bit vague tbh but I’m following it. The most recent link I found (July 22) said
They will contribute to a Commons review of health rules, which could see new rules that will allow parents to have more say in how their children are treated and where this takes place.
It would also allow parents to ask for mediation and independent experts if they disagree with what hospital doctors decide.

From this link
www.dailymail.co.uk/news/article-11021205/amp/Hope-Charlies-Law-Parents-11-month-old-Charlie-Gard-face-MPs-proposed-new-rules.html
(I know it’s the Daily Mail )

Iam64

That phrase ‘best interests’ has meaning in law. That means people working in the courts understand it.

But did Hollie Dance understand its meaning?

25Avalon

The transcript said Hollie accepted her son was brain stemmed dead but still wanted to keep him on mechanical ventilation. The family had turned to the church so possibly they were just hoping for a miracle.

That can be the only explanation. Brain-stem death is irreversible and at the time that she wanted to transfer him abroad because a medical professional, or institution, had offered to 'treat' him, she obviously did not accept the diagnosis. What kind of medical institution in full possession of the nature of Archie's condition would make such an offer, I do wonder?

I think her acceptance came when she decided she wanted him transferred to a hospice setting. But, even then, she did not appear to be aware of what his "best interests" meant in reality in relation to moving him. She (understandably) wanted the machine to be switched off in a peaceful environment. But with the ventilator still running, and all the necessary drugs still having to be administered whilst it was, and with the appropriate staff in attendance... would that environment be much different from the one he was already in at Barts?

I feel that right to the end, she didn't fully grasp what was involved - and still doesn't, which is why she's demanding an inquiry and investigation. If it brings some clarity - maybe it's a good idea.

Dickens I hope an investigation could give Holly clarity but I don’t think it will. Things have been very well explained already. There are none so blind as those who will not see.

It’s difficult. Medicine, especially surgery, is often brutal and gory and the details of what will happen can be very frightening and hard to take in.

I was the one who listened to the surgeons details of what would happen in her heart operation and afterwards. She “didn’t want to know”.

When I first posted on this thread I couched my language too for fear of offending or upsetting with the physical reality. But I found it hard that other posters didn’t look for accurate medical information to understand rather than just posting opinion.

I’d always want to know the facts but lots of people don’t.

Sorry talking about my sister there.

Archie was legally represented through his Guardian. She will have addressed the welfare checklist in her reports. She will have met with the parents, her focus will have been Archie’s best interests and she will have endeavoured to
Help them understand it’s meaning

The problem is that some people do not want facts that interfere with what they want to happen or what they have already decided has happened.

My DH has a phrase when faced with some people 'they have made up their mind, do not confuse them with facts,' and with every understanding for the tragedy at the source of this case. This what you had here. The boys mother was not interested in anything that did not accord with her interpretation of what was happening. She was not interested in what the doctors or anyone else had to say . She had made up her mind............

A lot has been said about the unsuitability of the legal system in cases like this. perhaps mediation would be better. But mediation only works if both parties agree to take part in mediation and both are prepared to have an open mind and be prepared to try to compromise and reacch an agreement.

I very much doubt if Archie's mother would have been prepared to take part in mediation, still less agree to any result that wasn't a complete capitulation to her demands.

In the past I have dealt with people who seem to think the way Archie's mother does andI have tried to help them make decisions, in both cases related to taking redundancy while there was a generous redundancy scheme they could avail themselves of, rather than making no decision, and then when the redundancy scheme ended being sacked with one months pay. The discussions I had were as fruitless as it is clear the doctor's were with Holly Dance.

In the two cases I dealt with, the cause of the problem was that the decisions to be made required a level of thought and balancing of different outcomes that quite simply was too complicated for them to deal with, and from their morass of confusion, they would circle round to one fact they were clear on, in one case 'I was told never to hand my notice in at a job unless I hd a job to go to' Fine in many circumstances, but not when you are going to lose your job anyway.

To put it bluntly, neither of them were very bright. Now I know nothing about Archie's mother, she was also in intense emotional distress. But I wonder whether the problem was simply that the complexity around the decision she had to make and its absolute nature meant that she was unable to reach a decision, so the best thing to do was refuse to agree to anything, until finally the decsion was taken out of her hands. Probably the more people tried to discuss the situation, the more she was overwhelmed by the nature of the decision, the less she was able think straight, so just said no.

I have no idea how you get round situations like this.

Good post Monica

Yes. Good post.

Lathyrus

When I first posted on this thread I couched my language too for fear of offending or upsetting with the physical reality. But I found it hard that other posters didn’t look for accurate medical information to understand rather than just posting opinion.

Hear, hear.

The medical information - the reality of brain-stem death - makes uncomfortable reading, especially for those of a sensitive nature or who, like your sister, "don't want to know" 'medical details'. And that's understandable and I'd be the last person to condemn anyone who felt they couldn't mentally cope with such information.

But when that ignorance (ignorance in relation to matters medical, I'm not calling Hollie Dance 'ignorant' in general terms) compels her to use words like "execution" to describe the act of switching of Archie's ventilator, then that is a step too far IMO, and she needs to be challenged. There are quite a few individuals on social media who are in agreement with her, and anyone who questions what she's said is told that "she's only doing what any mother would do, fighting for her child" . And that's the polite commenters - others are aggressive and rude... I was told to "shut up" and keep my opinions to myself because I suggested that Archie's mother didn't fully understand the medical reality of her son's condition! Not that I care what some random poster thinks about me, but it's worrying when such people start clamouring for some kind of retribution against those that were caring for (and caring about) the young boy. I see it as 'rabble-rousing', and that's dangerous IMO.

Excellent and insightful post MOnica. As always.

I have no idea how you get round situations like this.

No, me neither.

Inquest starts on friday. on news today.

opened and adjourned till 7 Feb 2023