By Calvin Palmer
Hannah Jones is only 13 but she has a mind of her own. Faced by a life-threatening illness, she has decided to refuse a heart transplant that hospital authorities insisted upon. After all, it is her life and it is only right that she has a say in what happens to it.
Hannah, from Marden, Herefordshire, suffers from a rare form of leukemia. She has been in and out of hospital since the age of four and told doctors that she didn’t want to go through any more operations.
She judged that the treatment was too risky and wanted to spend her remaining days in the company of her family and friends.
There was a strong chance that she wouldn’t survive the operation and, even if she did, the leukemia could return. The new heart would only last 10 years at most and she would need constant drug treatment.
Hannah chose to return home to be with her brother Oliver, 11, and sisters Lucy, 10 and Phoebe, 4, and under the care of her mother, Kirsty, who is an intensive care nurse.
Her decision did not sit too well with Hereford Hospital. Child protection officers were called in and threatened to remove Hannah from the custody of her parents and force her to have the operation.
Hannah remained adamant that she did not want the treatment even when the hospital started High Court proceedings.
The next day, a child protection officer arrived at the family home and interviewed Hannah in her bedroom. After the meeting, her views were conveyed to barristers in the High Court and the case was abandoned.
Her father, Andrew, said: “I don’t know exactly what Hannah said but it must have been powerful enough to convince some very high-up people that she was right.
“It is an incredible thing for a young person who has been through such a lot to have the bravery to stand up for her rights. We are so very proud of our little girl.”
The family has now received a letter from the hospital insisting that it always puts a patient’s “best interests” first, but which stops short of an apology.
Mr. Jones, a 43-year-old auditor, said: “It is outrageous that the people from the hospital could presume that we didn’t have the best interests of our daughter at heart.
“Hannah had been through enough already and to have the added stress of a possible court hearing or being forcibly taken into hospital is disgraceful.
“It was hurtful to be accused of preventing her from doing anything, when everything we do is geared to her happiness.”
Hannah now wants to have a holiday with her family in Disney World in Orlando, Florida.
“It has always been on my list to go away on holiday and forget about things at home,” she said.
Her mother said that family sought publicity about her daughter’s condition because they had been unable to get travel insurance that would allow Hannah to make the trip to Florida.
Hannah was diagnosed with a rare form of leukemia at the age of five and the subsequent high-strength drug treatment caused a hole in her heart.
She stopped the cancer treatment because of the damage it was doing but it left her heart so weak it could give up at any time. Her family hopes she will be alive to see Christmas.
In a letter to the family, the chief executive of Herefordshire Primary Care Trust, Chris Bull, rejected complaints about the hospital’s actions and said the doctor’s attempt to seek a court order was “appropriate.”
Now it is to be hoped that some travel insurer will give Hannah the necessary insurance coverage so that she can fulfill her wish of visiting Disney World. And when the Disney Corporation gets to hear of Hannah’s case, you can be assured it will do the best it can to make it Hannah’s best ever trip.
I realize the doctors at the hospital were doing what was best in terms of their medical judgment but they often forget an important element of the human condition – dignity. Hannah, with her brave decision, has managed to keep her dignity intact.
[Based on reports by The Independent, The Guardian and The Daily Telegraph.]
3 Comments
November 11, 2008 at 4:53 pm
I can see both sides of the situation. I think the hospital and Social Services had a duty of care that went beyond simply accepting the wishes of a 13 year old girl. They had to be sure the youngster was in a proper state of mind to make that judgement.
“The next day, a child protection officer arrived at the family home and interviewed Hannah in her bedroom. After the meeting, her views were conveyed to barristers in the High Court and the case was abandoned.”
In my opinion, they acted correctly throughout.
Having said that, I feel desperately sorry for the young lass. She must have gone through hell and back to have come to that decision. I hope everything goes as the family wishes now.
M.
November 11, 2008 at 6:00 pm
I think common sense prevailed. If the heart transplant would have given her a completely normal life and life span, the hospital would have been right to pursue the action it did. In this case, that wasn’t the case and I feel they were a little heavy handed. There was a good chance she wouldn’t even have survived the operation.
I hope she gets her wish to see Disney World and gets the red carpet treatment from the Disney organization.
November 12, 2008 at 3:35 am
Amen to your last paragraph, Calvin.
M.