Hannah’s Choice

Reporter: Liz Hayes

Hannah Jones is 13-years-old and she's made her choice. She wants to die. And it seems no-one can stop her.

Her life has been one long struggle, most of it spent in hospital, operation after operation.

First it was leukaemia, now it's a deadly heart condition.

Her doctors say Hannah's only chance of survival is a transplant, but she says no.

She's suffered enough. It's a decision that's caused outrage around the world.

Here's a girl too young to vote, too young to have sex legally, yet she can decide whether she lives or dies.

And not only that. Hannah's mother and father fully support her decision.

For information on organ transplants and donation head to:
Transplant Australia at www.transplant.org.au

Full transcript:

INTRODUCTION - LIZ HAYES. Hannah Jones is 13-years-old and she's made her choice - she wants to die and it seems no-one can stop her. Her life has been one long struggle, most of it spent in hospital, operation after operation. First it was leukaemia, now it's a deadly heart condition. Her doctors say Hannah's only chance of survival is a transplant, but she says, no, she's suffered enough. It's a decision that's caused outrage around the world. Here's a girl too young to vote, too young to have sex legally, and yet she can decide whether she lives or dies. And not only that. Hannah's mother and father fully support her decision.

STORY - LIZ HAYES. In the English county of Herefordshire, Hannah Jones rests at home knowing she's made an extraordinary decision.

HANNAH JONES: This is the biggest decision I've made in in my entire life and probably the most that anybody has made in their life.

LIZ HAYES: You will get no bigger decision than this one, Hannah.

HANNAH JONES: I won't get any bigger decision than this one, no.

LIZ HAYES: Hannah has decided she'd rather die than have a heart transplant. And she made this decision at the tender age of 12. You don't lie in bed at night and think about this decision?

HANNAH JONES: No, I don't think about the decision. Most days, every day's just a normal day, I take it as it comes. I think about the here and now, not what comes later, what's happened in the past.

LIZ HAYES: So it's as simple as this - you've had enough?

HANNAH JONES: I've had enough - yeah, it's as simple as that.

LIZ HAYES: It's confronting enough to hear these words from someone so young but what caused international outcry and a legal furore is that Hannah's decision has the full blessing of her parents. I had always imagined a parent's instinct would be to naturally say, "Keep my child alive, do it." Not the case?

KIRSTY JONES: Not, not in this case. I've tried not to influence her positively or negatively. Who am I to say a transplant would be the end of all her fears, all her troubles and all her ails because I don't know that.

LIZ HAYES: Watching them play together, there's no doubt Kirsty and Andrew Jones love their eldest daughter dearly. But ever since she was a little girl, they've had to watch her struggle to stay alive. Has her life been defined by her illness?

KIRSTY JONES: I think it probably has. I think the illness has set her way of life, hasn't it really? From day one, really

LIZ HAYES: Hannah was diagnosed with leukaemia when she was four. She beat the cancer but the gruelling treatment left her tiny body shattered. Through more than 20 major operations, she's lived most of her life in hospital. close to death more than half a dozen times. How many times have you thought you could lose Hannah?

ANDREW JONES: I can remember once I was actually near a funeral directors and I thought, "Do I go up those steps and inquire about a funeral for my daughter?" And I felt that was a bit like giving up on my daughter and accepting that she was gonna die. And I felt we need to support her and be strong and if I'd just stepped over that door, I felt that was giving up on her.

KIRSTY JONES: Yes, there have been a couple of times, when I have thought, "What would I dress her in when she dies? "How would her funeral be?"

LIZ HAYES: But the constant fear of losing Hannah recently became a stark choice. Her body so wracked by cancer treatment, she developed cardiomyopathy - a disease that slowly weakens the heart and is always fatal. She now clings to life with a pacemaker and massive medication - 21 pills a day. But the harsh reality is without a transplant she'll die within months. How quickly do you run out of breath?

HANNAH JONES: Very quickly, if I'm not careful.

LIZ HAYES: And have you ever been so unwell, that you've become frightened about what might be next?

HANNAH JONES: There was one day when I was, when I was really ill, and I did think that I might not wake up the next morning, but I haven't thought about it since, so. (SINGS) How do you get from the top of the world to the bottom of the heap?

LIZ HAYES: To see Hannah singing karaoke with her sister, Lucy, it's hard to comprehend how sick she really is. But her decision to refuse a transplant means she can rarely leave the house. When the doctor says to you, "Hannah, you have to consider a heart transplant", what was your first reaction to that?

HANNAH JONES: I don't really remember. I think I did consider it but it was just a shock for me at the time. Mum went out of the room 'cause she couldn't take it but Dad stayed in the room and I was sort of looking at Dad for help, as if to say, "What should I do, what should I do? "What decision should I take?"

ANDREW JONES: She looked at me and it was one of the worst feelings I have ever had because as a Dad, I felt I couldn't give her any advice or any help. I just remember looking down the end of the bed trying to sort of give her support through being with her but without actually physically saying anything.

LIZ HAYES: You knew before the doctors had told Hannah that they were going to suggest a heart transplant. Your view was what?

KIRSTY JONES: My personal view was that I hoped she didn't want a transplant.

LIZ HAYES: So you've both felt, even before Hannah made that decision, that she should not have a heart transplant?

KIRSTY JONES: I did.

DR JANET HALL: Look, on one hand as a parent, I'm aghast at that. I would have done anything - laid down my whole, my own life to enable my children to live. And also as a psychologist, I'm aghast because they are treating her as if she is an adult who can make up her own mind and it's not so.

LIZ HAYES: Child psychologist Dr Janet Hall is shocked that Hannah's parents are leaving this life-and-death decision in the hands of their child. Isn't it possible that, strangely, her parents do have her best interests at heart here? That she has suffered enough?

DR JANET HALL: I don't think that rational-thinking parents would make a decision that their daughter has suffered enough, knowing that with medical treatment miracles happen. I mean, parents need to be the life coaches, the positive thinkers and to never give up instilling positive hope in their child.

LIZ HAYES: So if your mum and dad had said, "Hannah, we'd really like you to have this operation", might you have considered it?

HANNAH JONES: I might have considered it more for a while, for their sake and for mine and for my brothers and sisters but I'm glad I'm not influenced by them at all. Otherwise I think my decision would have been a lot harder.

LIZ HAYES: Why do you think a transplant is wrong for her?

KIRSTY JONES: That's the million-dollar question, isn't it. To start with because it's Hannah's choice, that's the main thing in all of this. Hannah doesn't have much choice or control over her life but she does have control over when she's going to die.

LIZ HAYES: What is it about the heart transplant you don't like?

HANNAH JONES: Not coming around from the anaesthetics if something goes wrong in the theatre and they can't do it.

LIZ HAYES: So it's the operation?

HANNAH JONES: The operation, yeah. If they had like 100% success rate every time then perhaps I'd go for it but it's not guaranteed, it's not a cure.

LIZ HAYES: In fact heart transplants have a 90% success rate. Elka Johansson is living proof of that. Elka also suffered cardiomyopathy and at 17, was given just six months to live.

ELKA JOHANSSON: I remember the day the doctor came and saw me and said, "Look the medications aren't working, things are looking really bad. "You're going to need a transplant." And I just turned to him and said, "OK", I accepted it.

LIZ HAYES: When you're told something like that, I mean, I'd be frightened how were you?

ELKA JOHANSSON: I was probably frightened for like a minute, seriously. I didn't have a choice - at this point in time my life was pretty much rubbish. I couldn't do anything that my friends were doing and I was sick of it.

LIZ HAYES: Just four hours of surgery and Elka's life was saved. It hasn't been a bed of roses, but she's never regretted her decision for a moment.

ELKA JOHANSSON: Everything is a trade off, and the benefits I've had since my transplant definitely outweigh any challenges that I've faced. It's, first of all, not just given me a quality of life - it's given me life full stop.

LIZ HAYES: Can you imagine saying no to a transplant at the age of 12 or 13?

ELKA JOHANSSON: No, no. I think probably from Hannah's point of view she's just had enough of hospitals and so forth. The thing is, transplantation provides that escape. It will get her out of hospitals, it will get her living a fairly normal life.

LIZ HAYES: Right now Hannah's life is about constant medication and making the most of what's left. What in your heart do you believe is Hannah's fate?

ANDREW JONES: I think she's there to be part of our lives for however long it's going to be and we have to make the most of it to enjoy Hannah while she's with us.

LIZ HAYES: Initially, medical authorities intervened and called on child protection to force Hannah back to hospital. It caused national outcry in Britain and the family looked set for a court battle. While this case has plenty of people talking, it seems that Hannah has one very strong point on her side - and that's the law. It requires that a minor be able to demonstrate that he or she has the intelligence to fully comprehend what the doctors are proposing. And had Hannah's case have gone to the High Court here in the UK, most believe she would have done that. So the case was dropped and the Jones family is left to live with Hannah's choice. She understood and understands what the transplant means, do you think she has the maturity to understand the consequences of her decision?

KIRSTY JONES: I don't know whether that's too big a decision for a 12- or 13-year-old or whether they can really understand the enormity of the decision that they've made. I don't think they see very far into the future. Sometimes she says, "Well, I might die tomorrow." But then, "Actually I want to be a teacher."

DR JANET HALL: I don't think she understands death. How totally, you know, it ends. Everything ends. Does she really understand what kind of suffering she may go through before the death. I hardly think so.

LIZ HAYES: A sick child at the age of 12 or 13 doesn't have the right to decide whether he or she lives or dies?

DR JANET HALL: I don't think that an underage child has the right to decide to live or die. I mean, they're not even allowed to have sex, so how can they decide that they should die.

LIZ HAYES: No-one will truly ever know if this little girl who loves pink and dreams of being a singer really understands the ramifications of her very grown-up decision. And soon there'll be no turning back. Even if Hannah changes her mind she'll be too ill to undergo transplant surgery. What would it take you to reconsider?

HANNAH JONES: Nothing really, unless it was serious.

LIZ HAYES: This is serious.

HANNAH JONES: Well I mean I don't, I think I'm well enough now as it is and I don't want the transplant.

KIRSTY JONES: I have absolutely no doubt, absolutely no doubt in my mind that what we did was right. Not a shadow of a doubt, ever.

LIZ HAYES: And no doubt what Hannah has decided is right?

KIRSTY JONES: No, no doubt at all.

LIZ HAYES: Ok, no regrets?

ANDREW JONES: No,

LIZ HAYES: That's the main thing.

KIRSTY JONES: Yes, that is the main thing.

HANNAH JONES: I know this is a courageous thing and not everybody gets to make a decision like this, but I am brave. I think this is my decision, what I want to do stands - nothing else will get in my way.

LIZ HAYES: Well, I respect your right to make that decision but I also remind you of your right to reconsider.

HANNAH JONES: Yes, I know that bit.

LIZ HAYES: So I should bugger off.

HANNAH JONES: Oh, well.