By Kevin Sullivan
Washington Post Foreign Service
Friday, November 14, 2008
LONDON, Nov. 13 -- Hannah Jones needs a heart transplant. But after nine years of battling leukemia and heart disease, she has had enough of hospitals, operations, drugs and constant pain. So she has opted to skip the surgery and die at home in the company of her family.
Hannah is 13 years old, and her case has prompted a wrenching public debate in Britain.
Her story has dominated headlines this week, and people have found themselves staring sadly at her serious young face, unsmiling and freckled, looking back at them from newspaper pages.
"I'm not a normal 13-year-old," she told reporters this week, short of breath and speaking in clipped sentences. "I'm a deep thinker. I've had to be, with my illness. It's hard, at 13, to know I'm going to die. But I also know what's best for me."
The case has raised complex questions about children's legal rights to decide their own medical care, and whether such cases are private tragedies or matters to be decided by governments and courts.
Hannah's mother, Kristy, a former intensive care nurse, and her father, Andrew, an auditor, have backed their daughter.
"Until you have walked 24 hours a day, seven days a week in my shoes, you don't understand," Kristy Jones told the Daily Mail. "Doing my job, as a nurse in intensive care, I have seen so many children suffering like Hannah. Of course, I want them to survive as long as possible, but I also understand that death can sometimes be a merciful relief."
Hannah was diagnosed with leukemia in 1999, when she was 4. Chemotherapy sent the cancer into remission but caused her to lose hair and skin. Amid all the strain on her young body, she developed a hole in her heart.
In March 2000, she came home from the hospital weighing less than 30 pounds. She had to be fed by tube and needed an oxygen cylinder to help her breathe.
Her leukemia remained in remission, and at age 9 she started school for the first time. But last year, when she was nearly 12, she fell ill in class and doctors determined that her heart had become so weak that her only option was a transplant.
She was fitted with a pacemaker, and doctors showed her films of a transplant operation. They told her that the surgery itself might kill her and that her weakened immune system would make her susceptible to a recurrence of leukemia. They told her she would need a constant regimen of drugs and that she would probably need a second transplant in about 10 years.
When the doctors finished explaining it all, Hannah looked at them and said, simply, "No, I don't want a new heart. I want to go home."
Facing reporters this week, Hannah said she had no regrets.
"My parents have always encouraged me to make my own decisions. When it comes to my heart, I'd much rather do things my way than have other people decide for me.
"It wasn't an easy choice, but being in hospital reminds me of bad times," she said. "I've spent long enough in hospital. I just want to be at home, even if that means my life might be shorter."
At first, doctors at Hereford Hospital, about 120 miles northwest of London, accepted Hannah's decision. But in March, the hospital called her parents and threatened to send police to forcibly remove Hannah from their care, saying they were not acting in her best interest. Hospital officials threatened to seek a court order forcing her to have the transplant.
Andrew Jones said he explained the family's position to the officials.
"It was very emotional trying to reach the sort of decision you would never wish on your worst enemy," he said. "My wife and I agreed that whatever Hannah wanted, we would support her."
After talking to the Joneses, the hospital decided not to send the police and instead send a child protection officer to meet with the family. The officer spent an hour with Hannah, who convinced her that she knew what she wanted, and that she was acting of her own free will. Hospital officials relented and apologized to Hannah's parents.
British law does not state the age at which children can take responsibility for their own medical care. Experts have offered different views, with many suggesting that children's experience is a much better indicator than age of their ability to make an informed decision about their best interests.
"It appears that she has deeply thought about the cost of life and the cost of dying with dignity," Priscilla Alderson, a professor of childhood studies at the University of London's Institute of Education, told the Guardian newspaper. "She sounds like she is remarkably wise."
Others have argued that it is pointless to force anyone to have a heart transplant when there is such a long list of people desperate for one.
"I try not to think about death, but I do know my time is limited," Hannah said. "I live each day as it comes. I enjoy life. It's hard not to feel that life's unfair, but I am determined to make the best of it."