Take it or leave it

Listening to: 'Crack The Shutters' by Snow Patrol [A Hundred Million Suns]

So the story: A 13 yr old girl has won the right to refuse a heart transplant. She has been taking medication for leukaemia since she was 5, and as a result of this medication, she has developed a hole in her heart. She was offered a heart transplant in July 2007 but she refused it on the grounds that it might not work, and even if it did, she'd have to take medicine for the rest of her life. Her Primary Care Trust (i.e. the NHS Trust that manages the hospitals in her area) tried to take her family to court, saying they would remove the girl from their register if she wasn't brought in for surgery (the reason presumably being that she is below the age of consent, and therefore her opinion cannot be taken into consideration). They have now dropped their case, after a child protection officer said that the girl was adamant that she didn't want surgery, and she wanted to die at home with dignity.

I see three (maybe four) potential points for discussion.

1. She is 13 - can she make an informed decision?
   Well according to UK laws, if she understands the issues and the consequences, she can be considered legally competent. So presumably the answer would be yes. There are plenty of over-18s whose competence is questionable, so I think it's fair to treat these situations on a case-by-case basis.


2. Should the PCT have gone to court?
   This is where I add my 2c. I would say 'no', and the title of this post should tell you what my view is on the matter. There are millions of people in this country who are not receiving the medical care they require because of the financial and physical strain on the NHS. There are millions of people who want to be treated, who want to be given the slightest chance to improve their quality of life. There are millions of people who are willing to take the risk of surgery because the prospect of being cured is so attractive and they've got nothing to lose. So why should the NHS waste money and resources on someone who doesn't want to be treated? A heart transplant is a huge financial undertaking for the NHS. If the patient in question doesn't want to make use of the services available, so be it! Someone else who actually wants to live can make use of that opportunity. I know it's the doctor's responsibility to have the patient's best interests at heart, but if the patient doesn't care, I don't see why the doctor should.


3. Her reasons for refusing surgery
   • 'Cos it might not work - Well using that logic, cancer patients (herself included) shouldn't be treated, because none of the medical methods have a 100% success rate. I shouldn't fly home next month, 'cos the plane might crash, or Colombo might get bombed, or someone might ask me about my love life etc. etc. I shouldn't have had my spine surgery 'cos there was a chance of me ending up paralysed. I shouldn't wake up in the morning 'cos I might have a bad day. What bollocks.
   • If it does work, she'll have to take medicine for the rest of her life - OMG this is where I completely lose it! How many people on this planet take medicine every day? I know insulin-dependent diabetics who have been taking daily insulin injections since they were 13. There are soldiers who have been wounded in battle, who wear their prosthetic arms and legs every morning. There are people in developing countries who walk miles every day just to fill up a jug of water...and she's complaining about some tablets? What makes her so special? What a spoilt brat.


4. Die with 'dignity'?
   Eh? I watched my grandmother pass away due to old age and nothing else (I don't mean figuratively - I was chanting pirith at her bedside when she died) and she couldn't have asked for a more peaceful way to go (unless she was asleep). Let me tell you - there is nothing dignified about death. This dignity business is a fabrication of the media for the purpose of the euthanasia debate, which is irrelevant here. I can understand the girl not wanting to die with a million and one tubes inside her, but the chances of that happening are in no way decreased by her refusing surgery. The use of such a buzzword in this context only weakens her argument in my eyes.

I understand that she has a medical condition that makes her life very difficult, but her reasons for preferring to wither and die make me sad. At the end of the day though, it is her decision and no one can force her, so I respect that. Let me put it this way: I respect her right to choose, but I don't respect her choice. I can do that, can't I?