Written by Jennifer Quinn for Associated Press
Hannah Jones and Family
A 13-year-old British girl who has undergone almost a dozen operations in her young life has refused a heart transplant in a decision that may ultimately lead to her death.
Hannah Jones, who was diagnosed with leukemia and later a heart condition, told her parents and medical authorities that she would rather spend her remaining time at home than in the hospital.
Health authorities have ceded to the decision after interviewing the girl.
“I’ve been in hospital too much – I’ve had too much trauma,” Hannah Jones told Sky News today. “I don’t want this, and it’s my choice not to have it.”
Hannah was diagnosed with leukemia when she was four-years-old. Chemotherapy put her into remission but doctors then discovered she had cardiomyopathy, a serious disease where the heart muscle becomes swollen and sometimes fails.
The girl’s story surfaced when parents complained about hospital officials who sent a social worker to interview the girl about her choice.
The family received a telephone call saying the hospital would take legal action if they didn’t bring Hannah to hospital, said her mother, Kirsty Jones.
“They phoned us on a Friday evening and said that if we didn’t take her in they’d come and take her. We still refused to take her,” she said.
Hospital officials said it is standard procedure to make sure both the child and their parents understand the consequences of any medical decision.
“Clearly, the welfare of the child is paramount,” said Sally Stucke, a pediatrician with the Herefordshire Primary Care Trust where Hannah was receiving treatment. “Pediatricians will always consider the child’s best interests at all times and this
would include the child’s medical, emotional and psychological well-being.”
“No one can be forced to have a heart transplant,” she added.
Dr Tony Calland, who chairs the British Medical Association’s medical ethics committee, told BBC radio that a 13-year-old like
Hannah, supported by her parents, should be “perfectly capable” of making such a decision.
“Decisions to refuse life-prolonging treatment are always extremely difficult and emotive,” he said. “What is paramount is that decisions are made in the best interests of the patient. Where consensus cannot be reached between doctors, patients and family, then it is only appropriate that the courts intervene to act in the best interests of the patient.”
Dr John Jenkins, a pediatrician and chairman of Britain’s General Medical Council standards and ethics committee, said children who have lengthy illnesses become “experts in their own condition quite early in life.”
Heart transplants are risky operations on any patient – and those risks increase with young people who have additional conditions like Hannah’s leukemia.
The transplants often require patients to be on lifelong anti-rejection medication to prevent their body from attacking their new heart. The medicines often have side-effects, which make the body more susceptible to dangerous infections.
“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 OK, and there’s a chance that I may not be as well as I could be, but I’m willing to take that chance.”
You can find here an interview with young Hannah Jones.
I hope for all the best in your life, you are an inspiration to us, your spirit will live forever. We to often complain to much about to little and than someone like you comes along and shows us how fortunate we are. By the grace of God you will live to be a beautiful old lady. I will keep you in my prayers. William
Decubitus position of the patients for long periods of time (that is currently in use) without being performed daily a preventive and suitable physiotherapy for the metabolic and physiologic stimulation of the body represents a serious error in modern medicine, for the most common pathologies. To treat a body in the circumstances of a metabolism that oscillates long periods of time around the basal rate value, is evidently that in these metabolic conditions may appear additionally and other pathologies, or latent pathological affections can be released, leading to major pathological complications and sometimes to the complete body collapse.
Particularly speaking is regrettable that the Hannah’s cardiomyopathy was discovered so late, since it may be even the essential cause of the leukemia, according to my concepts on the human physiopathology (published in the Journal of Experimental Therapeutics and Oncology – Volume 6, Number 2, 2007, “Somatic tissues degeneration”).
Obviously, there are certain palliating circumstances, because the Hannah’s cardiomyopathy if it initially existed (if it was the cause of leukemia), its initial stage was relatively imperceptible the cardiomyopathy has evolved progressively. Besides, the initial status of the cardiovascular system was probably not examined as a potential and essential cause of the leukemia.
The intention of this comment is absolutely not to accuse the pediatricians from the Herefordshire Primary Care Trust where Hannah Jones was receiving treatment, because the physiopathological concept above mentioned on the correlation between the heart condition and leukemia is a new concept, it has not yet been implemented in the medical practice and education.
However, the heart transplant is not the best solution in this pathologic case, especially owing to the fact that the physiological degeneracy has inclusively been occurred at the level of specialized nervous areas of the heart from the CNS, in direct proportional relationship with the heart condition.
If Hannah’s leukemia has not been nervously determined by functional nervous disturbances of specialized nervous areas of the bone marrow tissues from the central nervous system (that’s less probable at the age of 4-5 years), and it has only been determined by the heart condition, the physiotherapy can be a valid possibility of treatment. A suitable physiotherapy systematized applied for the physiological stimulation of the cardiovascular system and respectively its specialized nervous areas from the CNS, is able to solve the girl’s cardiomyopathy and implicitly the remission of the leukemia. It is not difficult of applied and the physiotherapy can be performed at home, not in the hospital, it may be accepted by Hannah and her parents having regard to the girl’s emotional state.
Certainly, the duration of physiotherapeutic process will be relatively long time, a few years, about 1-2 hours every day it will be progressively applied in relation to the physiopathological status of the body. Also, these suitable and constant applied physical exercises should be preventively used and after her complete cured (at an adequate intensity), for the general health maintenance. Additionally, I would like to mention within this context that the last aspect (exercise and physical fitness) should have a general character, the physiological and metabolic preventive stimulation of human body tissues is absolutely necessary in the social environmental conditions for avoiding degenerative and pathological processes.
I would be very glad if this short scientific comment (opinion) will favorably influence the decision of this amazing brave girl for a good outcome – and the British medical authorities agree that the solution of physiotherapeutic treatment is scientifically founded and valid for this pathologic case if the Hannah’s leukemia has occurred due to heart condition.
Pavel D.
Sweet Hannah, you are so wise beyond your years. I don’t have to remind you, you already know…God is in charge.