13-Year-Old Girl Wins The Right to Die

Hannah Jones is just 13 years old, but for 9 of those 13 years she has been in and out of hospital. She has acute myeloid lukemia and cardiomyopathy (a hole in her heart). She is terminally ill and needs a heart transplant to survive. She has made it clear that she does not want the operation and, with a maturity that belies her 13 years, she told her doctors that she wanted to go home and die surrounded by her loving family. The hospital went to court seeking to gain custody of the girl from her parents and force her to undergo the operation.

Hannah's parents Kristy and Andrew Jones, though heart-broken at her decision, both supported their daughter's wishes. They were shocked when they learned of the hospital's attempt to take away their daughter from them.

Hear the interview with Andrew Jones here.

Mr Jones said: "The threat that somebody could come and forcibly remove your daughter from you against her wishes, against our wishes, was quite upsetting really." He added: "We didn't get too involved in (Hannah's) decision.

"Hannah made that decision consciously on her own, a bit like a grown up, even though she was only 12 at the time and she has maintained that decision. How she coped with it, what her mind was thinking at the time, I've got great admiration for her in that and, as I said, we have to support her and her decision."

In making her decision, Hannah said that she was tired of hospitals and didn't want to go through any more operations.

"I just decided that there were too many risks and even if I took it there might be a bad outcome afterwards. I have been in hospital too much," Jones said. She added: "I have had too much trauma. I didn't want this [a heart transplant] and it's not my choice to have it."

Although her decision means that she may have only months to live, Jones said: "I have made the right decision at the moment and I'm not going to change it." adding: "There's a chance I may be well and there's a chance I may not be as well as I could be. That's a chance I'm willing to take."

Even the hospital had to admit that the operation was risky at best and may cause complications.

However, doctors have warned her that a heart transplant is risky and that, even if it succeeded, the drugs used to prevent her body rejecting the new heart could prompt a recurrence of the leukemia.

The family first learned that the hospital wished to force the operation on their daughter when they received a phone call telling them the hospital was applying for an order removing Hannah from the family home on the grounds that her parents were “preventing her treatment”. Mrs Jones, 43, said that the locum doctor had wanted to give Hannah a drug to facilitate her transfer to Great Ormond Street for the operation.

“The doctor wanted to give her a drug she had already said she didn’t want again . . . The family was in tears thinking she was going to be taken from us against her wishes.”

However, Great Ormond Street told the family that they would not admit the teenager without her consent.

After the incident the Jones' wrote to Herefordshire Primary Care Trust complaining about its intervention. In his reply, Chris Bull, the PCT’s chief executive, described Hannah as a “brave and courageous young woman” but defended the doctor’s decision.

However a nurse from the child protection team was called in to interview Hannah in private. 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. It was then decided not to apply for a court order. In the letter to the family, Mr Bull concluded:

“Hannah appears to understand the serious nature of her condition . . . Treatment options were discussed and Hannah was able to express her clear views that she did not wish to go back on a pump or to go into hospital for cardiac treatment.”

Hannah’s father said he was not sure exactly what his daughter had told the child protection officer at their private meeting, “but it must have been powerful enough to convince some very high-up people that she was right. Hannah has been through enough already. To have the added stress of a possible court hearing or being forcibly taken into hospital is disgraceful.”

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," he 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.

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Comments

[James Ngwiri]

As much as she may be viewed as a minor, she has successfully articulated her feelings about the transplant. Moreover, she is very much aware of the of the consequencies and has opted to die in dignity. Her choice is right & informed.

[Pam]

I am a nurse and all I can say is as I appreciate this young childs right of choice but also I am not being made aware of the type of transplant she is refusing and can she have a normal life after the ? transplant,,,,,,I just feel she is not aware of the finality of death no matter who says she is aware of the consequences,,,,,what can I do to help? This has left me feeling sad today for a little girl I do not know,,,,please think it through again little one,,,,,just seeing the sun come up another day is worth your life I promise

[Pavel Dumitru]

Decubitus position of the patients for long periods of time (currently used in clinical practice) without being performed daily a preventive and suitable physiotherapy for the metabolic and physiological 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 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 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.