13yr old has won right to die

Linda7NJ · Nov 17, 2008

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

Why children have a say over care
http://news.bbc.co.uk/2/hi/uk_news/7722125.stm

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.

more at link
http://news.bbc.co.uk/2/hi/uk_news/england/hereford/worcs/7721231.stm

gooniequeen · Nov 17, 2008

Honestly, if the heart transplant would save her life, I find it hard to understand why the government does not intercede since she is a minor or at the very least the parents should not listen to this child and she should have the surgery.

Now if she has the surgery and will still die, than perhaps i can understand. But if all she has is a hole in her heart than a transplant should be a no brainer.

SeriouslySearching · Nov 17, 2008

I heard this story Friday on my way home from work and thought to myself how intelligent, brave, and insightful this girl is. If she were my child, I would respect her wishes and support that she wants quality of life in the end to be around family at home. To force her into an operation which she has studied and knows the stats on would be inhumane treatment, imo. Everyone who has questioned her feels she is aware of the risks and has come to this conclusion with full understanding.

GlitchWizard · Nov 17, 2008

If they didn't want the heart - hopefully, the one they found made it to another person who could appreciate it.

southcitymom · Nov 17, 2008

SeriouslySearching said:
I heard this story Friday on my way home from work and thought to myself how intelligent, brave, and insightful this girl is. If she were my child, I would respect her wishes and support that she wants quality of life in the end to be around family at home. To force her into an operation which she has studied and knows the stats on would be inhumane treatment, imo. Everyone who has questioned her feels she is aware of the risks and has come to this conclusion with full understanding.

I agree, SS.

gooniequeen · Nov 17, 2008

I'm still confused though, the link states she has a "hole in her heart" so why wouldn't a new heart be a solution?

palmerk · Nov 17, 2008

from the link
"Hannah previously suffered from leukaemia and her heart has been weakened by drugs she was required to take from the age of five."

It's not just her heart. She's terminally ill and has spent tons of time in the hospital her entire life. She's ready to just be in peace. This has to be a difficult decision for her parents, but they, and she, know what's best.

Linda7NJ · Nov 17, 2008

palmerk said:
from the link
"Hannah previously suffered from leukaemia and her heart has been weakened by drugs she was required to take from the age of five."

It's not just her heart. She's terminally ill and has spent tons of time in the hospital her entire life. She's ready to just be in peace. This has to be a difficult decision for her parents, but they, and she, know what's best.

she's terminally ill becuase her heart is failing

gooniequeen · Nov 17, 2008

she is in remission from the cancer to the best of my knowledge.

The reason she gave was that there was no guarantee the surgery would work and that she would be on medication for the rest of her life.

for me personally, I too respect this child's wishes, as I am beyond sure she is DONE being poked and prodded. But I will continue to hope that she will at somepoint change her mind and decide to take the risk of surgery and live a long happy life.

SeriouslySearching · Nov 17, 2008

gooniequeen said:
I'm still confused though, the link states she has a "hole in her heart" so why wouldn't a new heart be a solution?

Her research showed that there was no guarantee the same condition wouldn't arise with the new one and felt the stats were not in to make a clear determination.

Blackwatch · Nov 17, 2008

I think it's time people, and the government, stopped telling other people what they HAVE to do with their own health and bodies. The girl made an informed decision; I believe we should respect that.

Cubby · Nov 17, 2008

Is she still required to take the medications which damaged her heart intially? If so, I understand her decision not to risk the surgery and have the same thing happen again. If not, I'm not sure she understands the differences in medications - between the meds for her leukemia, or anti rejection medication which all transplant recipients must take for the remainder of their life.

I had a 2nd cousin whose son had to have a heart transplant as did his sister for a rare genetic heart defect. He has since passed away and had two heart transplants. She, as far as I know is doing well. Before his surgeries, I was unaware a transplanted heart has only so many years of use before a second transplant is often necessary. I wonder if she too, at 13, would need more than one heart transplant in the future.

TaylorJ4 · Nov 17, 2008

She may be only 13 years old, but she has experienced a lot more in those 13 years than most of us ever will...she should certainly be allowed to make her own decision about this

MCDRAW · Nov 17, 2008

One of my children had a hole in their heart. Thanfully it closed up on it's own. I would have had a very hard time as a parent to not force them to have surgery. But I also know from dealing with a terminally ill parent that there comes a time when enough is enough and you have to let go. My prayers go out to this family.

SieSie · Nov 17, 2008

Blackwatch said:
I think it's time people, and the government, stopped telling other people what they HAVE to do with their own health and bodies. The girl made an informed decision; I believe we should respect that.

:clap: ITA! :clap:
(for whatever that's worth, LOL)

winston · Nov 18, 2008

palmerk said:
from the link
"Hannah previously suffered from leukaemia and her heart has been weakened by drugs she was required to take from the age of five."

It's not just her heart. She's terminally ill and has spent tons of time in the hospital her entire life. She's ready to just be in peace. This has to be a difficult decision for her parents, but they, and she, know what's best.

Enough said....she made a mature, informed decision. She is 13, and while not a fully formed adult, has spent most of her life fighting leukemia and the side effects of treatment. She should have some kind of voice in her own quality of life.

Sometimes the fight for "preservation of life" collides with "quality of life".

Blackwatch · Nov 18, 2008

winston said:
Enough said....she made a mature, informed decision. She is 13, and while not a fully formed adult, has spent most of her life fighting leukemia and the side effects of treatment. She should have some kind of voice in her own quality of life.
Sometimes the fight for "preservation of life" collides with "quality of life".

Bolding mine. While ITA with your sentiments, I take issue with the bolded wording. This girl should have TOTAL voice where her own life is concerned, not just "some kind of voice". When will people understand that forcing others to do what WE feel they should is WRONG?

OneLostGrl · Nov 18, 2008

Blackwatch said:
Bolding mine. While ITA with your sentiments, I take issue with the bolded wording. This girl should have TOTAL voice where her own life is concerned, not just "some kind of voice". When will people understand that forcing others to do what WE feel they should is WRONG?

:clap::clap:
I agree

Soulmagent · Nov 18, 2008

gooniequeen said:
Honestly, if the heart transplant would save her life, I find it hard to understand why the government does not intercede since she is a minor or at the very least the parents should not listen to this child and she should have the surgery.

Now if she has the surgery and will still die, than perhaps i can understand. But if all she has is a hole in her heart than a transplant should be a no brainer.

My stepdaughter had leukemia . She was diagnosed at 2 and went totally off meds at 6. She had ALL and it has a high reacurrance rate but the best survivablity.We were told that ANY stress on her body such as broken bones,puberty or serious injuries stands a chance of bringging the cancer out of remission.

With the heart transplant having all the risk assocaited with it and then on top of it putting the added risk to pulling Hannah out of remission I can understand the parents letting her make the decission . Her odds could not of been very good.
This is a heartbreaking story.

lizzybeth · Nov 18, 2008

Soulmagnet,
I was diagnosed with ALL in 1973. I'm forty-six years old now and have two children (after being told that I probably would never be able to because of the drugs). So, it's possible to have it once and never have a recurrence. I hope that reassures your step-daughter. Believe me my life has been extremely stressful too.

I have mixed emotions about this. When I was diagnosed with ALL I was only 11 years old. While treatment was painful at times (for five years) I didn't want to die. Yeah, I would get depressed and say that I wished I would go ahead and die but I didn't mean it. I'm not sure thirteen is that much more mature than eleven.

I don't know everything the doctor told her; what her life would be like after the heart transplant. I just know that right now I'm glad my parents forced me to have treatment. No matter how horrible or painful it was.

God bless her and I hope she's able to retain the dignity that she seeks right up til the end.

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