The Right To Die.
Or perhaps it would be better said "The Right to Live." Below is the story of a 13yo girl who is refusing a heart transplant in favor of living her life as fully as she currently can and dying when it is time. If you follow the link you will find a radio interview below the picture of Hannah and her dad in which her dad says Hannah is actually doing better than she was 7 months ago.
http://news.bbc.co.uk/2/hi/uk_news/england/hereford/worcs/7721231.stm
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.
The threat that somebody could come and forcibly remove your daughter from you… was quite upsetting really
Andrew Jones
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."
Hannah Jones decided she did not want a heart transplant.
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 Caudwell 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."
Hannah said she wanted to stop treatment and come home
"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.
About a year ago we asked Jillian "What if you got cancer again? Would you want to do chemo again?" We received an adamant no. So we asked "But if you don’t do chemo you will die." and my baby Jillian who was only 4yo stood still and looked pensive. Then a smile spread across her face and she said "But then I’d be with Jesus and that would be ok." As she ran off to play tears welled up in my eyes. How come we can’t all be that smart?
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And this is a “right to die” that I totally agree with. My auntie who I lost to breast cancer when I was 16 felt the same way that Jillian does. They’d almost killed her with chemo the first time around…and then the radiation. She’d gotten better, had reconstructive surgery and then about 3 years later relapsed. She didn’t talk about it much. I know she was on pain meds, but I don’t think much else…she played with us when she could…she napped A LOT.
The weekend before she died she called and said that she and I needed to go shopping the next weekend…she died Tuesday night.
And yet, I have FAR more peace about her death at age 41 than I do about my grandmother’s death at 91. With my grandmother, although she was not showing any signs of pain really they decided that she must be in pain and gave her a morphine based drug that shut down all of her functions until she died. She was nearly coherent when my mom made them stop giving her the drug for a couple of days, but the hospice nurses said she HAD to be on it…she was DEAD in two days…different kind of “right to die” there.
Hey katiie…wouldja change my blog address in your blogroll?? The new one has a better feed. Thanks.
Smart girl and smart Jillian. So sweet!
Kyle and I have always said if it comes down to chemo, let me die. Chemo is no way to go.
Your little girl is smart. My grandmother is 92, cannot walk very well, and is having blackouts. She was admitted to the hospital, where they told us she had fluid in her lungs. The next update I got from my aunt was that they were going to put a pacemaker in her. Apparently her heart rate goes down into the 20s and 30s when she is sleeping. So they’re putting a pacemaker into her to stop that. Risking major surgery on a nonagenarian with bad lungs…that sounds smart, doesn’t it?
When I told my husband, he said, “That almost sounds like God is paving the way for her to go gently in her sleep. And they’re stopping it.” I know it’s her choice, but I have to scratch my head and wonder why we’re so afraid to die. Especially at the end of our years.
Now, my mother in law has breast cancer. One small tumor, the surgeon is confident he’ll be able to get it all. She’s on a first round of chemo before the surgery. She’s in her early 70s, and I know why she’s doing the chemo. My father in law, bless his heart, would be devastated if he lost her. And her prognosis is extremely good.
However, if I have a disease with which my prognosis, even WITH treatment, is bad, I’m not fighting it. Especially if my kids are grown up at that point. And Lord, if I’m 92 and start to go slowly, let me accept it with grace and dignity.
Wow
A dear friend of mine died of breast cancer in 2003. She fought for a long time because, even with all of the necessary naps, one more day alive was one more day that she could parent her three children (all under age 8).
I loved her attitude when they told her that there was nothing more that they could do. She said that this either cleared the way for God to do a really big miracle or was going to end the suffering of the whole thing. She was looking forward to seeing what God would do.
When I think of the faith legacy she left her kids, I am humbled.
Why is it that others think they know what is best for the sick person? My grandmother is in stage 3 multiple myloma and is 82. Her children and grand children are grown. Now her children are putting her through radiation and surgery so she can “be better” even though we all know she will be with the Lord. It angers me but there is really nothing I can do as no one will listen to me.
Remember to pray for all in these types of situations.
Good for her. I’m actually surprised they prevailed though. I bet if it had happened here in the US she would have been forced to have a heart transplant and been put in a foster home by CPS, to boot.