Terminally ill teen wins the right to die
[ABC] A terminally ill British teenager has won the right to die after she was taken to court by a hospital that wanted to force her to have a heart transplant.
Thirteen-year-old Hannah Jones has been in and out of hospital for most of the past 10 years, but now she has refused any more operations to prolong her life.
Sitting in her pink bedroom wearing pink polka-dot ugg boots, Hannah Jones looks like a healthy teenager. But the 13-year-old is dying. She has cardio myopathy; in layman’s terms, a disease of the heart muscle. Hannah’s mother Kirsty Jones says it was caused by the high strength drugs she was given to treat a rare form of cancer. “She first got sick at the age of four with acute myeloid leukaemia, and it was the chemotherapy that caused the heart failure, so we had to stop the chemotherapy,” she said.
But while she eventually beat the leukaemia, her heart was left severely damaged, and can now only pump 10 per cent of its capacity.
Hannah has spent most of her life in hospital and she is fed up with operations.
Now she has refused a life-saving heart transplant and, in a show of maturity beyond her years, she told her doctors she would rather go home to die surrounded by her loving family.
“I just decided that there was too many risks and even if I took it there might be a bad outcome afterwards,” she said.
“I’ve been in hospital too much and I’ve associated hospital with some bad memories; so that’s why I didn’t want the transplant.”
Child protection
But a child protection officer was called in and Hannah was on the brink of being forcibly removed from her home and her family.
“I was shocked really to hear that they could do such a thing,” Hannah said.
The teenager was adamant that she did not want the transplant and she convinced the authorities that the operation was not in her best interests.
Now British officials have agreed to allow her to spend her remaining days at home.
Hannah says while some tasks can be tough for her, she is managing.
“I do struggle doing day-to-day things, but I manage as best as I can,” she said.
“At the moment I think I’ve made the right decision and I’m not going to change it.”
Hannah’s father Andrew Jones says while his daughter’s decision has broken his heart, he and his wife support her wishes.
“We didn’t get too involved in the decision, Hannah made that decision, consciously, on her own, a bit like a grown up really and she’s maintained that decision which as I said we fully support,” he said.
Hannah’s mother Kirsty agrees.
“She’s absolutely fabulous, she’s so grown up and she is so good, really brave and we’re so proud of her,” she said.
Dr Daniel Sokol is a lecturer in medical ethics at St George’s Hospital in London, he also backs the 13-year-old’s decision.
“She’s evaluated the risks of the procedure, the risk of dying on the operating table, or suffering a whole host of nasty complications and in contrast to that are the benefits which is living longer,” she said.
“She’s a professional patient, she’s been a patient for most of her life and if she is able to understand, she comprehends and has enough information then it doesn’t matter whether she’s 13 or 88, it should ultimately be her decision in my view.”
Doctor’s warn that without the transplant Hannah could die within months.
Based on a report by Stephanie Kennedy for AM
Decubitus position of the patients for long periods of time (currently used in clinical practice) without being performed daily a preventive and suitable physical therapy for the metabolic and physiological stimulation of body tissues 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 additionally appear 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 physiopathologic concept above mentioned on the correlation between the heart failure and leukemia it 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 (having in view her clinical and physiological state), 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 relationship to the physiopathologic status of the body. Also, this suitable and constant applied physical therapy should be preventively used and after her complete cured (at an adequate intensity), for the health maintenance of cardiovascular system and parenchymal organs. 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 at the level of cardiovascular system and parenchymal organs – and implicitly at the level of musculoskeletal tissues.
Finally, after the physiotherapeutic treatment, if an open heart operation will be imperious necessary for correction, or even a heart transplant, it will certainly be performed in superior conditions for survival.
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 the physiotherapeutic treatment is scientifically founded and valid for this pathologic case if the Hannah’s leukemia has occurred due to heart condition.
Pavel D.