By any measure, Hannah Jones is a remarkable 13 year old. Smart and articulate, she seems to have matured faster than the vast majority of teenagers. She had to. She has battled leukemia and heart disease. She now wants to die and her parents are supporting her decision over the outcry of many in London.
Jones has decided not to go forward with a heart transplant and instead she has decided to go home to die on her own terms. To those who object to her making this decision she says simply: “I’m not a normal 13-year-old, 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.”
Her mother is a former intensive care nurse and her father an auditor. They support her.
Hannah beat the leukemia with treatment that began in 1999 when she was four. However, the chemotherapy caused heart damage, including a hole in her heart. When she came home at 5 in 2000, she weighed only 30 pounds.
Waiting for the transplant, she was fitted with a heart pacemaker. She might die in the transplant surgery and will require a battery of medicine — with the risk that the leukemia may return. She would probably need a new heart in ten years. After the doctors explained all of this, Hannah immediately said “No, I don’t want a new heart. I want to go home.”
That triggered the current debate over her right as a child to make such a decision. Legally, this remains the parents decisions presumably — just as it would in the United States. However, the parents can ratify the decision of the child. The problem is the refusal of medical treatment that could save the life of the child. Parents have been prosecuted in the United States for denying basic medical care for their child. This is obviously a bit different, given the severity of the medical conditions even if the surgery is successful. However, it comes close to the line if one assumes that the child is likely to survive both heart transplants.
When such cases are brought to court, a guardian can be appointed to guarantee the rights and interests of the girl. Such a proceeding can be triggered by the hospital. Society clearly has an interest in such cases despite our great deference to the family’s decisions. The concern is that most children would not want to go through the horrific process that Hannah has had to endure. However, it is not clear what advances will come in time and what complications will occur in this case.
Hannah’s choice is a brave (even inspiring) one, but there remains the question of whether it is Hannah’s choice.
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