13-year-old girl wins right to die

Hannah Jones, who is 13 and terminally ill, has persuaded her hospital to withdraw a High Court action that would have forced her to have a heart transplant against her will. The story is in all the papers today - here is The Times' coverage..

I don't know what I think about this at all - part of me really admires Hannah, whose short life has been punctuated by major surgery and illness, for saying "enough is enough". Another part thinks, 'yes, but heart transplants often have excellent results'. Yet another part thinks, 'what if the transplant re-triggered her leukemia', and so on. I go round and round in circles. The only thing I see clearly is that it is obviously far better to die at home, rather than in theatre or on a ward. Other than that, I don't know. What do you think?

Edit: interview with Hannah here.

Comments

[Pauline, Surrey]

I agree with Eunice that it is important that this decision is not misrepresented as sanctioning a "right to die". If it is truly one of those situations where the treatment is unduly burdensome relative to the expected benefit then it must be right that the decision to refuse is respected.

However, I do have two concerns about this case. The first is that Hannah does seem very young to be making such a heavy decision. The second is that her apparent wish to "die in dignity" raises real alarm bells. This "death with dignity" concept has been hijacked from the hospice movement by advocates of euthanasia and insidiously invites a limited, materialistic view of human dignity. Has poor Hannah fallen prey to this notion? And have her parents challenged this – or have they fallen prey to it as well?

I wish Hannah and her family well at this difficult time.

[Eunice]

My son is 23 years old and has Duchenne Muscular Dystrophy. Doctors told us he would not live to see age 18.

At the age of 13 he went through a major 9 hour operation called a spinal fusion. This operation meant that he was opened up from the nape of his neck to the top of his buttocks and two metal rods fused into his spine along with donated bone.

He could have died during this surgery but the choice to have it was made by him - not us as his parents. Obviously we looked into it. but our son made the final decision.

Hannah isn't choosing a "right to die" - that's going to happen anyway - she is choosing not to have unwanted medical treatment - that is her right it is her body and her life noone elses.

Thats my opinion anyway for what its worth.

Regards

Eun

[Maria]

My daughter may need a heart and lung transplant some day. If she should refuse to consent at the age of, say, only 13, I would try everything in my power to persuade her otherwise - including overriding her consent as her parent (assuming that's possible in law). I hope and assume that I would have her best interests foremost in doing so and I would not be doing it for selfish reasons. The decision is a balancing act of the benefits versus the costs but I think an adult, with life experience and, one hopes more commonsense and understanding, is better equipped to make that choice on behalf of their child. The offer of transplant (if it does result in a donated organ which sadly it doesn't too often in this country) is a privilege when one considers how it is denied to the vast majority of people around the world. I admire this girl Hannah for her bravery but I am not sure if I could support such a decision if I was her mother or father.

[missbehaving]

All the different possibilities you state roll around and around my head too and I am never sure where I land. I find, as a parent it is impossible to look at this and not ask yourself what you would do, were it your child. I seriously doubt I could be as unselfish as Hannah's parents and allow my child to choose. I don't think I would have the strength to walk away from even the smallest of possibilities.

[Jane]

On a purely practical level, Hannah's heart transplant probably wouldn't have gone ahead anyway. I don't think the family had got to the stage of being assessed for transplant by a transplant centre (Hereford don't do them). Nowadays, amazingly you may think, if the children don't give consent or if they are judged to be against the operation, it won't go ahead. I read a while ago about a family who were shocked when their 9 year old daughter was asked at assessment to give her consent for the operation.

I was staggered at the time as my child will probably need a transplant at some point and I thought it was unfair pressure to put on a child. The Unit's rationale was that donor organs are scarce and must only be given to people (young or old) who will undertake the long term maintenance required.