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A teenage girl refuses a "life-saving" heart transplant (UK)

"A teenage girl, who's had cancer since she was 4, has successfully managed to stop doctors forcing her to have a life-saving heart transplant. In an exclusive TV interview Hannah Jones, along with her mother Kirsty, explained why she refused treatment."
==> Video.

==> "Doctors fear Hannah Jones case may blight heart swaps" (Nov 15, 2008) :
http://www.timesonline.co.uk

==> "My most perfect day: Brave Hannah at home for what could be her last Christmas": http://www.dailymail.co.uk (Dec. 27, 2008)

4 commentaires:

Catherine a dit…

Cette info est passée au JT de 20h00 ce 11/11/08 sur France 2.

Catherine a dit…

"PCT drops court case to force heart surgery on teenager"
[PCT = primary care trust (UK National Health Service), ndlr.]

"A PCT has relinquished its fight to compel a 13 year old girl to have a heart transplant against her wishes, it was revealed today.

According to a report in 'The Mirror', published today, Herefordshire PCT wanted Hannah Jones to have a heart transplant to correct a hole in her heart and had referred the case to the High Court in the face of her refusal to undergo the surgery.

According to the report, 13 year old Hannah Jones, from Marden near Hereford, had refused the operation on the grounds that she had had enough of hospital treatment and wanted to spend what remained of her life at home with her family.

Hannah was diagnosed with a rare form of leukaemia when she was 5 years old, and it was the treatment for this illness, which damaged her heart.

Her decision, which was backed by her parents, was referred to the child protection team, prompting the application to the High Court to overturn it.

Poised to remove Hannah from her home, lawyers acting for the trust spoke to Hannah at her father’s request and concluded that she was fully aware of the consequences of her choice, so decided not to proceed further.

But the exact sequence of events surrounding the case are unclear as Herefordshire PCT has not yet commented on these.

But it has issued a statement in the name of consultant paediatrician Sally Stucke.

'This is an extremely complex case but the PCT has to respect Hannah’s confidentiality,' it says.

'Clearly the welfare of the child is paramount,' it continued. 'We work to support families and individuals make informed choices about the best possible care for them and that they understand the full impact of any decision, from the simple to the very complex. No one can be forced to have a heart transplant.'

'When considering whether a child is able to make a decision we would consider the age and the maturity of the child as well as the views of the family and others as appropriate. A child has the right to change their mind and all professionals providing support to the child and the family have to be sensitive to that.'

Dr Martin Ward-Platt, consultant paediatrician at the Royal Victoria Infirmary, Newcastle, told OnMedica that referring the matter to Child Protection was not unreasonable.

'Every child has a right to life, and child protection aims to preserve that right. So rather than taking [the decision ] at face value, it is sensible to carry out a comprehensive assessment, to be sure that the child is not doing something which s/he may later regret.'

The PCT may not have been aware of the case until the 'child protection switch was pulled,' he suggested. 'And it’s perfectly reasonable [action to take] if they have not been privy to all the ins and outs,' he said.

'I don’t think there is any question that the trust was not acting in good faith,' he said, adding that there had been cases in which parents had clearly not been acting in a child’s best interests, prompting intervention.

A heart transplant was not a panacea, he said, requiring immunosuppressive treatment for life, with its attendant risk of cancer, and further invasive checks, such as cardiac catheterisation and biopsies.

'Once the trust realised that someone was making a perfectly reasonable judgment, they wouldn’t have a prayer of this [case] succeeding.'

But he said that there were lessons to be learned for the way in which PCTs and specialist centres communicate.

But he added: 'This could have been a casualty of the fragmentation of primary care. It can be very difficult for us in hospitals to know who we are communicating with. In the old days, primary care used to be a unified team. Now, we don’t know who might be visiting a person in their home out of hours.'"

Source :
http://www.onmedica.com/NewsArticle.aspx?ID=258a0e12-6a2c-4766-a587-7f79cafdd566
Article by Caroline White
Tuesday, 11 November 2008

Catherine a dit…

http://www.timesonline.co.uk/tol/life_and_style/health/article5127204.ece :

"Children have, since the 1980s, been able to give consent to treatment if they have 'sufficient understanding', a deliberately fluid concept that allows clinicians to respond to individual cases.

But there is concern where children refuse treatment that seems to be in their best interests, particularly if it is life-saving.

Such concerns have resulted in a distinction being drawn at law between 'consent to' and 'refusal of', after a series of cases in which a child’s refusal was overridden. It is that legal distinction that allows Hannah’s choices to be challenged by her local healthcare trust.

The problem is how the law approaches the autonomy of minors. If it afforded the same respect to Hannah’s refusal to undergo a transplant as it would had she had consented, to surgery, there would be consistent and meaningful respect for the principle of informed self-determination."
Article by Dr Bowman.
Dr Bowman is a senior lecturer in medical ethics and law at St George’s Hospital, University of London

Comments :
- Dr. Bowman's conclusion is flawed.

Refusal and consent are not equal here. Consent is merely an agreement to allow the doctor to perform a procedure he/she recommends. Refusal in this case involves a minor overriding the judgement of an experienced doctor acting in the child's best interests.

L Barker, Singapore, Singapore

- Respect for the patient could have started right there in the hospital: The problem is not the law, it is the arrogance of the hospital people who tried to make their own decision without regard for the patient's wishes.

Terry Stancliffe, london.

Catherine a dit…

"Une petite Britannique de 13 ans refuse une transplantation cardiaque"

LONDRES — "Une petite Britannique de 13 ans, qui a déjà subi une dizaine d'interventions chirurgicales dans sa courte vie, a refusé une transplantation cardiaque, décision qui a été acceptée par les autorités médicales, et qui pourrait déboucher sur sa mort.

C'est après avoir longuement interrogé la petite Hannah J. que les responsables médicaux ont cédé. L'adolescente est malade depuis ses quatre ans : leucémique, elle est en rémission après des chimiothérapies, et elle est souffre d'une cardiomyopathie, une affection cardiaque grave dans laquelle le muscle cardiaque s'hypertrophie, avec le risque que le coeur lâche. Elle a expliqué à ses parents et médecins qu'elle préférait désormais passer à la maison le temps qu'il lui restait à vivre plutôt qu'à l'hôpital.

'J'ai trop été à l'hôpital. J'ai trop été traumatisée. Je ne veux pas de cela, et c'est mon choix de ne pas le subir', a-t-elle raconté mardi sur la chaîne Sky News.

L'affaire est devenue publique, a expliqué sa mère, Kirsty, lorsque la famille a appris qu'elle devait être auditionnée par un membre des services sociaux, faute de quoi l'hôpital prendrait des mesures judiciaires si la famille n'amenait pas Hannah: 'Ils nous ont téléphoné un vendredi soir pour dire que si nous ne l'amenions pas, ils viendraient la chercher. Nous avons quand même refusé', a-t-elle raconté.

Les responsables du Herefordshire Primary Care Trust, où Hannah est soignée, ont expliqué qu'il s'agissait d'une procédure standard pour s'assurer que les petits patients et leurs parents comprenaient les conséquences d'une décision médicale.

'Il est clair que c'est le bien-être de l'enfant qui est prioritaire', a déclaré la pédiatre Sally Stucke, que ce soit son bien-être 'médical, émotionnel ou psychologique'. 'Personne ne peut être obligé à subir une transplantation cardiaque', a-t-elle ajouté.

Pour le Docteur Tony Calland, président du comité d'éthique de l'Association médicale britannique, une enfant de 13 ans comme Hannah, soutenue par ses parents, est 'parfaitement capable' de prendre une décision de ce type.

'Toute décision de refuser un traitement pour prolonger la vie est toujours très difficile et pleine d'émotion', a-t-il estimé sur les ondes de la BBC. Pour le docteur John Jenkins, pédiatre et président de la Commission sur les règles et l'éthique du General Medical Council, les enfants atteints de maladies graves deviennent 'experts de leur propre maladie très tôt dans leur existence'.

Une transplantation cardiaque est une opération risquée sur n'importe quel patient, et les risques sont accrus dans le cas d'une personne leucémique, comme pour Hannah. Et les médicaments anti-rejet ont des effets secondaires qui fragilisent l'organisme.

'J'ai décidé qu'il y avait trop de risques, et que même si je les prenais, il pourrait y avoir une issue négative', a expliqué Hannah. 'Il y a une possibilité que je sois OK, et une possibilité que je ne sois pas aussi bien que je le pourrais, mais je suis prête à le tenter'."

Source :
http://canadianpress.google.com/article/ALeqM5iRdPzkSHzq-M2OojZbfeyS29lOlg