Girl wins right to refuse heart

[GrandOldTeam]

BBC NEWS | England | Hereford/Worcs | Girl wins right to refuse heart

A terminally ill girl has won the right to refuse treatment after a hospital ended its bid to force her to have a heart transplant.
Herefordshire Primary Care Trust (PCT) dropped a High Court case after a child protection officer said Hannah Jones was adamant she did not want surgery.
Hannah, 13, of Marden, near Hereford, said she wanted to die with dignity.
Her father Andrew said he and his wife supported her decision but they had been upset by the PCT's actions.
He said Hereford County Hospital's child protection team had contacted them in February threatening to remove Hannah from their care if they did not bring her to hospital for the operation.

Hannah, who has a hole in her heart, had been offered a transplant in July 2007 but said she did not want to go through with it after taking advice from doctors, Mr Jones said.
She said the operation might not work, and if it did work, it would be followed by constant medication.
Hannah was interviewed by the child protection officer after the trust applied for a court order in February to force the transplant.
She said she wanted to stop treatment and spend the rest of her life at home and the PCT subsequently withdrew its legal action.
Mr Jones said: "The threat that somebody could come and forcibly remove your daughter from you against her wishes, against our wishes, was quite upsetting really."

He added: "We didn't get too involved in (Hannah's) decision.
"Hannah made that decision consciously on her own, a bit like a grown up, even though she was only 12 at the time and she has maintained that decision.
"How she coped with it, what her mind was thinking at the time, I've got great admiration for her in that and, as I said, we have to support her and her decision."
Hannah previously suffered from leukaemia and her heart has been weakened by drugs she was required to take from the age of five.
Last week her father was forced to cancel plans to take her to Disneyland because he could not get insurance for her.

The family had been given the holiday to the US by the charity Cauldwell Children.
Sally Stucke, a consultant paediatrician at Herefordshire Primary Care Trust, said it had been "an extremely complex case".
She added: "No one can be forced to have a heart transplant.
"We understand that the child and the family's views in relation to care and treatment might change over time as the child's condition changes.
"Any individual has the right to change their mind at any time.
"When considering whether a child is able to make a decision we would consider the age and the maturity of the child as well as the views of the family and others as appropriate.
"A child has the right to change their mind and all professionals providing support to the child and the family have to be sensitive to that."
'Perfectly capable'
Dr Tony Calland, chairman of the British Medical Association's ethics committee, said a child of Hannah's age was able to make an informed decision to refuse treatment.
He said the House of Lords had ruled in the 1980s that a child who understood the issues and consequences could be considered legally competent.

It followed the case of Victoria Gillick who took her health authority to court claiming she should be informed if her daughters were prescribed contraception.
It was reported that in Hannah's case, the trust intervened after a locum GP raised concerns over her with the child protection team.
Dr Calland said he understood why a doctor might have taken this action.
He said: "I think some doctors take the view that they must intervene and they are making that decision in what they see as the best interests of the patient.
"But of course best interests of patients is not just the best medical interests - it's the overall holistic interests of the person in general."
He added: "I think obviously a child of 13 with these circumstances should be perfectly capable of making the decision and particularly when supported by the parents."
Clive Lambert, headteacher at Hannah's school, St Mary's High School, in Lugwardine, said she was an intelligent girl, capable of making her own decisions.
"She has many friends at school and her presence is a source of inspiration to us all through the courage and dignity that she displays," he said.

Opinions?

 

[Sharpys top lip]

Wow, very upsetting to read. She's very young to make such a big decision. But as long as mum an dad agree to, it must be the right one.

What a brave little girl, my heart go out to her an the family.

 

[Whitebootman]

Brave Girl.

Personally I'd hang on to any chance to keep on going as long as possible. Credit to her parents for standing by her. I hope that if she ever changes her mind the local authority will not hold this decision against her.

Good luck Hannah.

 

[GrandOldTeam]

I am very suspicious to be honest. There are people really set against human medical intervention, I really hope her parents aren't such people.

We didn't get too involved in (Hannah's) decision.
"Hannah made that decision consciously on her own, a bit like a grown up, even though she was only 12 at the time and she has maintained that decision.

hmm...

 

[Nebbiolo]

Difficult one really. On the one hand, you might be of the opinion that she owns her own body and it is hers to do with as she sees fit. On the other hand, you might say that nobody really owns their own body and the state has every right to intervene in cases like this and give treatment regardless of the patients desires. After all, there is a knock-on effect of her refusing the treatment. For one thing, her family and friends might be incredibly upset at her decision. As well, what about the doctors that have taken an oath to save lives whenever possible?

To return to the first point. Let's assume that everyone does have a prima facie right to their own body. What exceptions would we make to this rule? I would suggest that they are these: the mentally deranged, children and people in shock or depression. These three groups are the most vulnerable and deserve special care. The girl is certainly a part of this trio. But is there reason to make an exception in her case and allow her to refuse treatment?

I don't know enough about the case. All I would say is that ordinarily she should indeed be forced into an operation. But perhaps her circumstances are good enough to make her an exception to the rule.

One thing, there is not an easy answer to the question.

 

[teppic]

she seems tired with life. time for her to sleep if the pain is too much.

 

[zero]

she seems tired with life. time for her to sleep if the pain is too much.

That's what I thought too.

 

[Bluelass]

A friend of mine has a son who was born with a heart defect and it was unlikely that he would live beyond the age of 8 or 9. His only hope was a heart transplant but his parents always said that they would never put him through the trauma.
As it happens he's 19 years old and at University now but his life is always hanging by a thread.

My friend says that TV programmes like Holby City sometimes make surgery like a heart transplant look almost mundane with the patient sitting up eating a roast dinner the next day. That is far from the truth and depending on the age of the patient, the type of intervention (heart and lung, heart only), the recovery can be several months of pain. The prognosis in this case, I believe is not that good anyone, even after a heart transplant.

Of course, there are many that do have successful transplants but for every one of those there are a couple of others that are not and this is the part that people don't see.

This girl, if she's anything like my friend's son, will be mature beyond her years simply because of the type of life she will have led up to now. Pain, suffering and life threatening conditions will certainly take their toll and she may well just be, as someone else said, tired of fighting.
God Bless her.

 

[Nebbiolo]

she seems tired with life. time for her to sleep if the pain is too much.

But perhaps after the operation she won't be tired? Is her decision based on the actual facts or what she perceives are the facts? is her decision as competent as we are told? How many twelve year olds would really understand what is at stake? Why does the law treat children as not legally responsible? Is it because, for the most part, they are sufficiently incapable of fully rationalising their behaviour and are less skilled as decision makers?

There are a lot of questions, Tep. Perhaps they have been answered satisfactorily behind the scenes. But the report I just read answers none. It just makes a vague declaration that children of her age can make informed decisions. I'd don't think that that is wholly true under severe circumstances, even if it happens to be true in this case.

 

[GrandOldTeam]

Personally dont think she should have the right to make such a decision.

If grown adults aren't allowed to make such a decision, a 12 year old girl (she was 12 when she made the initial decision) certainly shouldn't be allowed.

 

[TX Bill]

Yeah, that's my issue as well.

I think everyone should have the right to choose whether they themselves are treated medically in this manner but I don't know that someone of 12 years of age is able to make that decision.

Tough one this.

 

[Seamus Colemole]

Yeah, that's my issue as well.

I think everyone should have the right to choose whether they themselves are treated medically in this manner but I don't know that someone of 12 years of age is able to make that decision.

Tough one this.

Surely then it becomes the parents decision. And if they then decide to make that decision going by what their daughter has decided then so be it.

but said she did not want to go through with it after taking advice from doctors

I think its pretty likely she made as informed decision as its possible for a 12 year old to make.

Personally i would be disgusted if she was forced to have the operation. I can understand doctors wanting her to have it but no one in her position should ever be forced by law to have an operation against their will in this country.

 

[Bluelass]

There was an interesting interview with the doctor who heads some sort of ethics board, I think for the BMA or similar, anyway, he said that it was never a case of her being forced to have the operation and that the local health authority had just sought legal advice because of the age of the patient.

He also went on to say that the girl had been assessed by the appropriate bodies (can't remember who) and that she had been declared able and competent to make a decision of this nature.

The girl has had a life with nothing but pain and treatment and even after the surgery she would still require constant medication and potentially painful treatment to prolong her life by no more than a few years.

Life at all costs? No, not for me.
Constant pain, treatment, medication?
I think we should all have to walk a mile in her shoes before making any decision on whether she has the right to chose or not.

 

[Nebbiolo]

There was an interesting interview with the doctor who heads some sort of ethics board, I think for the BMA or similar, anyway, he said that it was never a case of her being forced to have the operation and that the local health authority had just sought legal advice because of the age of the patient.

He also went on to say that the girl had been assessed by the appropriate bodies (can't remember who) and that she had been declared able and competent to make a decision of this nature.

The girl has had a life with nothing but pain and treatment and even after the surgery she would still require constant medication and potentially painful treatment to prolong her life by no more than a few years.

Life at all costs? No, not for me.
Constant pain, treatment, medication?
I think we should all have to walk a mile in her shoes before making any decision on whether she has the right to chose or not.

The thing is BL, the majority of children do not understand concepts of life and death in a way your average adult does. I would be sad if we started to give children the same sort of rights regarding their lives as adults have.

In saying that, if it is the case that this girl has only a tiny chance of rehabilitation, then I'm all for her not having the transplant. But that decision surely ought to be made by an informed and educated adult, not a 12 year old kid.

 

[DENNIS STEVENS]

it brings to mind the somewhat contradictory state of affairs whereby human life often seems to be considered sacrosanct, to be maintained at all cost & regardless of the suffering involved, even in circumstances which would be considered unacceptably cruel if applied to an animal. it seems it's considered appropriate to treat animals humanely, but not nesessarily humans.