Hannah Jones, 13, has turned down a lifesaving heart transplant to die at home with her family
The story of a 13-year-old British girl who is refusing a heart transplant because she's already been through enough pain reminds me that when you're looking for the right answer, humility may be as essential as wisdom.
Hannah Jones' leukemia was diagnosed when she was 4. She later developed heart disease and has endured chemotherapy and nearly a dozen operations. This past summer, when doctors told her that without a heart transplant she'd be dead in six months, she refused to go through with it. "I've been in hospital too much — I've had too much trauma," she told the Guardian. She was not asserting a right to die; she was suggesting that she had a right to live on her own terms and to decide whether the benefit was worth the cost.
No one was promising a cure. Without a transplant, her heart was sure to give out, but the operation could kill her, as could the complications that might follow. Antirejection drugs could reignite the leukemia; another transplant might be necessary in just a few years. (See TIME's A-Z Health Guide.)
Hannah's mother Kirsty was once an intensive-care nurse and had seen the ordeal up close. So she and her husband Andrew decided that they needed to respect their daughter's wishes. "It was very emotional trying to reach the sort of decision you would never wish on your worst enemy," Andrew told reporters. "We were as low as it's possible to get, but I just didn't feel able to influence her. My wife and I agreed that whatever Hannah wanted, we would support her." She wanted to be at home, to play with her three younger siblings while she could. "It's hard, at 13, to know I'm going to die," Hannah said, "but I also know what's best for me."
She made her case to her doctors; they too knew the odds and were persuaded that she was making a rational and considered decision. But one doctor, concerned that Hannah might be driven by fear or confusion, notified children's protective services of the case — which is how the Joneses found themselves fighting to retain custody of their child. "They phoned us on a Friday evening and said that if we didn't take her in, they'd come and take her," recalled Kirsty. Authorities threatened to proceed with the operation over Hannah's protests, in the name of protecting her interests.
This was the moment that abstract principles and necessary safeguards collided with the sad, strong will of a dying girl. Under British law, a child Hannah's age is allowed to refuse lifesaving treatment, provided that all the options have been fully explained and the child has the support of his or her parents. A social worker arrived at the Joneses' house, and Hannah laid out her reasons. "I just decided there were too many risks, and even if I took it, there might be a bad outcome," Hannah said. "There is a chance that I may be O.K., and there's a chance that I may not be as well as I could be, but I'm willing to take that chance." It wasn't as if she hadn't thought it through; she knows there's a waiting list for hearts and is glad to think she may be saving someone else's life by refusing one.
The social worker was convinced, and this week the lawyers were as well. The court lifted the order, and Hannah may continue to refuse the treatment.
Are there lessons in any of this? It is excruciating to imagine the pain not only of this child but of her parents, trying to do the right thing. They are told one night that an ambulance would come and take her away because they were not doing their job to protect her. And yet you understand why doctors will err on the side of treatment. And why the doctor who called in the authorities was concerned about the ability of anyone, especially a 13-year-old, to walk away from something that represented hope, however feeble. But you have to be grateful that the ultimate judges kept an open mind, let Hannah make her case and found it reasonable for her circumstances. This is ultimately what respect for life looks like; it means respecting an individual's right to decide how she wants to live, even if that involves knowing she will die. Mercy, detached from justice, grows unmerciful, C.S. Lewis said. But surely justice detached from mercy grows unjust.