This has been in the news headlines for the past few days.

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

A 12 year old wins the right to refuse a heart transplant. The terminally ill girl who was born with a hole in her heart, was stricken with leukemia and has been taking drugs for it since she was 5 years old. Those drugs have weaken her heart and she was advised to have a heart transplant. There is a risk that the heart transplant would not work, but if it did, it sounds like she would be able to live, albeit on constant medication. Her parents support her decision but the doctors were in doubt. So they called in the child protection team. The case went to court and the court ruled in her favour, reinforcing her right as a patient to make decisions about her treatment.

I suppose the first question that comes to mind after reading about this is whether a 13 year old is able to make such a major decision. One reader commented on the bbc website and raised the point that a child not of age to vote, drive or drink alcohol should not be allowed to make a decision to die. The General Medical council on the other hand, states that on principle patients should have a say over their care and children are no different.

I believe that if the child has the capacity to make such a decision one should respect that decision. After all it is her body and what ever is done to it, she would have to live with it. I believe that a child has the capacity to make such a decision, provided she has had counselling from doctors, psychologists, and explored all the possibilities of living and dying and has thought through what she things life is about and what its means to live.

Even so, I still feel pained by her decision. I might be speaking from my privileged perspective. I am enjoying good health and have the freedom to do the things I like (most of the time), but I feel that no matter how hard life is, it can't be worse than death. For a person like me who does not believe in a higher order, death would be nothing. Nothing at all. and there is no point in giving up something (no matter how slight) for nothing, is there? To be conscious, to be aware, is to me the most amazing thing in this world. Would you bear to let it be taken away from you? Even if it is the most horrible feeling, being conscious, can emptiness be better than that? If there is a zimmer of hope that one can have a sustainable life... fight?

She is brave, brave to face that great unknown that most of us fear. But would she be braver if fought with all means possible (including those given by advanced medicine) till she could no longer physically fight or if there was really no hope of improvement? The point is, she has a shot at having a better life after the heart transplant (right?). There is a risk that that would not happen, but there is a chance that it would be better. I understand that she must be emotionally exhausted from having to deal with chronic pain and being unable to have the life that all her same-aged peers are having. but no matter how tired she is, this is a crucial point in time where she can't let this fatigue bring her down.

Other people might not have had the same chance like her to have a second shot at life. I remember a girl from my school who had leukemia and had only 6 months to live. She stopped treatment then because it was apparent that the treatment was not going to do her anymore good. The school was raising funds for her treatment so I think she and her parents decided to use that money to provide financial aid for students who need it.