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.
For the story, click here.
One wonders if the child is merely repeating the mantra of the parents, but it seems that Hannah is a very mature 13. She has been through so much in her short time on earth. I would have to allow her to make the decision, with ratification by the parents, but it is such a tough decision. A 13 year old should never have to make that kind of decision. Good luck and God bless her and her family.
I wonder why in a country like Great Britain where catastrophic medical conditions are paid for by the government, why anyone would suggest the parents are influencing the child’s decision. I see maturity here I would want to see in my own kids–though under radically different circumstances of course. The good– they die young.
This a heartbreaking but life affirming story. Hannah is a brave girl with such a strong spirit. She and her family deserve great admiration for having shown a remarkable ability to cope.
In pediatrics the ideal care model is family-centered (versus patient-centered). Her mother’s experience as an ICU nurse has given their family unique insights to support Hannah’s decision making. I don’t doubt this is Hannah’s choice; having been ill for so long she is the expert on her body. If she were forced into such a complex procedure against her will the chances for a successful outcome maybe diminished; and the guilt would be unbearable.
In March doctors predicted that without a heart transplant she would only live six months; she has already outlived that estimate. I hope she will live much longer! I want to believe and will pray that given her youth and continued survival there is always the possibility that her body will begin to recover, that she may heal and maybe yet thrive.
If she were my child I would support her decision to refuse the transplant; but I would seek a second opinion from the best pediatric cardiovascular surgeon in England. Perhaps there is another alternative that may offer some benefit with less risk of increased pain and suffering; such as repair of the hole in her heart, or placement of atrial/ventricular assist device which could decrease the workload of her heart, and allow some opportunity for healing. If my child were against any invasive procedures I would still want a second opinion; as medications can often be changed with benefit. (I know this may be wishful thinking.)
Fortunately it seems money did not enter into the equation; the added burden of no health insurance and lack of an ability to pay is a cruel reality for many families here.
I will continue to wish/pray for only the best for Hannah and her family.
The only thing that might dissuade her from her decision is to know that all that happens when you die is people kick dirt in your face
- as hard as that sounds.
As long as you’re here you’re ‘alive’. And by living you have opportunities to enjoy life and contribute.
And that’s what it’s all about…
At some point this young lady–not her parents–is feeling the pain. People around her can feel sad and they might cry, but she is the one who has been physically dealing with the pain and discomfort from her diseases and their treatments. She probably doesn’t remember a time when she wasn’t constantly being poked and prodded.
Hannah you are a beautiful gift from God and a miracle child. God bless you and keep you. You are so brave and we will see you again.