Wednesday, 12 November 2008


Occasionally you hear about something that is just so stupid that it takes your breath away. 13-year-old Hannah Jones has spent much of her life in and out of hospital as she’s had leukaemia. Her heart is now failing and she has been offered a heart transplant. Hannah, however, has had enough.

She knows that the heart transplant may or may not be successful. Even if it is successful, she knows she’ll probably need another one before the end of her teenage years. She knows that the anti-rejection drugs that she’ll have to take after the operation carry a significant risk bringing her leukaemia back and she knows full well the pain and suffering that lies down that particular road. On balance, Hannah, with the support of her parents said, “No, thank-you. Let me be. If I am to die, I’m going to enjoy the rest of my days rather than spend them in a hospital bed.”

So far, this is another of those sad stories that you come across from time to time if you work in a hospital. However, somebody in the Primary Care Trust didn’t like Hannah’s decision. Somebody thought that she shouldn’t have the right to decide what was going to happen to her own body. As a result, Hannah was threatened with being taken away from her parents into care and forced to have the operation against her will.

It’s really unbelievable. The courts have seen good sense and have respected Hannah’s decision, but all the hassle and anguish that comes with a court case could have been avoided if people had just listened to Hannah in the first place. After all, isn’t that what the NHS is supposed to be about? Listening to our patients and making their care our first concern?

The mind boggles.


Chris said...


What happened to Gillick competence, and what happened to the fact that it's her parent's decision if she isn't Gillick competent?

Michael said...

Gillick competence relates to agreeing to a procedure - not refusing it. Similarly parents can agree on behalf of a child, but legally a parental refusal of treatment can be challenged if it's felt their decision is not in the childs best interests.

In this case though it seems a very reasoned decision by a competent child, with the agreement of the parents was challenged, and I'm also pleased the court has backed them.

steph said...

This is officialdom at it's worst,
in a world gone mad!

Well done! Hannah

Let's hope that lessons have been learnt from Hannah's case so that this sort of arrogance is nipped in the bud in future.

I shudder to think of the anguish caused to Hannah and her family by this whole sorry affair. I hope she gets her holiday soon.

Oliver Smith said...

I think when Chris referred to the Gillick competence he was actually meaning the test set down by Lord Scarman regarding when a person who is not yet an adult can make such decisions for themselves (I think the case was Sidaway v Board of Governors of the Bethlehem Royal Hospital and Maudsley Hospital and Others [1984] l All ER 1018).

I think part of the problem is that often adults feel that children cannot and should not make such decisions and some cannot cope with that fact that there are many mature young people out there who can make such a big decision in a mature and reasoned way. I think this may be compounded by the selfishness of the medical profession. Before you start attacking me, let me explain what I mean by "the selfishness of the medical profession." Those who become doctors and nurses, for the most part, do so because there is a massive part of them that wants to help people who are in need. When a patient refuses treatment that may save, extend or improve the quality of their life it goes against the very natural instincts that those in the medical profession have and I'm sure that many find this very difficult. So, essentially what I'm trying to say is that the selfishness I speak of is the personal feelings of the doctor regarding what they want to do and what they are trained for that get in the road and some find it hard to accept.

I am, of course, not saying that this is the case with all doctors. However, I am sure that's how some doctors must feel. I know it would be how I'd feel if I was the doctor in this case. How I'd physically react I'm not sure...I'd hope it wouldn't be in a way that leads to increased suffering for my patient.

Anonymous said...

So were they planning to force-feed her the anti-rejection meds? A transplant isn't the type of thing that works without patient cooperation. Besides, there are probably hundreds of people out there dying for a heart (literally) and they were planning to forcibly stuff it into someone who doesn't really want it. Isn't that kind of illogical?

Michael said...

Oliver - that was the same Gillick test I was referring to. It has not been interpreted as being able to make free decisions (i.e. agree to or refuse treatment), it just permits a child under 16 to consent to treatment on their own behalf. A parent can still consent for them even if they refuse.

Tazocin said...

I wonder how the courts would have decided had the thirteen year old girl been against the surgery but both the trust AND her parents had wanted to proceed? As far as I'm aware Gillick competence has never been used to allow a minor REFUSE treatment offered by doctors/that their parents wish to consent to. The above scenario involving a 13 year old would be ethically challenging but in Hannah's case where both she and both her parents were oppose to surgery it's shocking that it had to go as far as a court case to be resolved.