What should the courts or the state do when a 13-year-old girl refuses to undergo a heart transplant, which may or may not extend her life? Intervene and compel the operation or adhere to the wishes of the child?
Before reading further bear in mind your initial answer to the question set out above, which may well change a few times as we unravel the circumstances behind this terrible story. Like many of you, I’m sure, my first reaction was – of course the state must intervene — are those parents insane? How can anyone even pay lip service to a 13-year-old child who is far too young to make an informed decision?
Hannah is from Marden, near Hereford, England where she lives with her parents. At age four she was diagnosed with leukemia and began undergoing chemotherapy. While the treatment did gain her remission it, along with drugs prescribed to treat her illness, caused cardiomyopathy. Her heart as a result is only functioning at around 10% of its capacity.
In order to avoid this proving fatal over the next six months or so, doctors have advised her to undergo a heart transplant, which may or may not extend her life. However, even if the operation does prove successful there is a fair chance that the immune-suppressants she will be required to take to avoid the new heart being rejected may well bring on the leukemia once again.
A slim chance is better than nothing?
Ever since she can remember Hannah has been in and out of hospitals undergoing treatments and nearly a dozen surgeries. The chances are that she might go in this time and never come home. Her choice is to die at home with her parents and enjoy whatever time she has left rather than spending it in hospital being treated and operated upon in an attempt to extend her life.
A horrific decision for anyone to make no matter their age.
Do you go into hospital and have the operation, which may extend your life, bring back leukemia or even kill you, or stay at home and spend around six months with your parents before you most probably die? There is no guarantee that she will die quickly just as there is nothing that says that the operation will be a success and extend her life.
Anyone who watched Hannah’s interview on Sky would be aware that this little girl is highly intelligent and fully aware of the consequences of her actions. That said she is still no more than a very bright 13-year-old who has undergone an ordeal you wouldn’t wish on your worst enemy. Her mom is a nurse who has worked in ICU and is acutely aware of the dilemma facing her daughter. She is of the belief that Hannah is able to make the decision and will support whatever route she chooses to go.
In light of the information you now have would you still compel the state to act or would you allow Hannah to make this decision?
In order to assist you bear in mind the following:
It is not a case of suicide because there is no desire on Hannah’s part to die. On the contrary she just wants to enjoy whatever time she has left. There is nothing to say that this will only be six months nor anything to suggest that it will even be as long as six months.
It is also not a case of assisted suicide or euthanasia as nobody is attempting to shorten her life in any way; nature is simply being allowed to take its course. The transplant and complications could be just as risky in terms of duration left to Hannah as doing nothing. Of course a successful operation might extend her life considerably but it might not.
Initially a hospital Trust acting on behalf of the hospital where Hannah has been receiving treatment made application to the High Court to compel Hannah to undergo the surgery in an attempt to make her change her mind. When this failed to achieve the desired result the application was withdrawn at the last minute.
The head of the British Medical Association told the media that doctors feel compelled to intervene because they believe that they are acting in the best interests of their patients. While that is undoubtedly true the doctors haven’t had to endure the aggregate of the suffering a particular patient has been through. Nowadays in cases like this we are dealing with specialists treating a particular problem; here it is Hannah’s heart. No doubt they would have her records going back eight or nine years, but that is paper and lists in a file rather than memories of surgery after surgery, hospitals, pain and the knowledge that you are missing out on all the wonderful things that young girls get up to.
Condoning Hannah’s course of conduct will not lead to increased rates of suicide or euthanasia as they are actions designed to prematurely end a life, which is totally removed from the mindset involved here. Moreover it will not per se encourage anyone else to dump their medication or life saving operation – Hannah’s circumstances are peculiar to her.
However, where there are others who believe that they would rather have whatever time they have left to do as they deem fit instead of, for example, undergoing a 50/50 operation, given the right circumstances, they should be allowed to refuse treatment. Of paramount importance is the fact that the person making the decision understands the situation they are in, all the choices available to them, the consequences of choosing each route and abandoning the others and, once armed with all the information, is capable of making an informed decision.
It goes without saying that where people are incapable of appreciating the nature or extent of their actions as a result of their youth or mental incapacity, the courts will come to the assistance of concerned parties.
In principle however I believe that the right to place your fate in the hands of nature or your creator should rest with the individual subject to the restrictions above.
Many of you I’m sure still believe that the decision should be removed from Hannah and her parents. Just pause for a second and amend the question slightly. If you, heaven forbid, had spent eight years undergoing the same horrendous circumstances and now had to choose between home with the loved ones for a few months or an operation, which may help or kill you, which could deprive you of even that short time, what would you do?
Mind-blowing!
I think that the decision that Hannah made is in deed unique to her and given a similar choice many of us may choose to have the time we have with our loved ones then the risk of going into an operation with a 50/50 chance. Not only that, what if we were to die on the operating table? I think 6months with loved ones overrule death on a table alone.
Also before the advent of technology nature and God were the forces we adhered to. So why should Hannah not adhere to it now?
Traps – this is why I love reading your blog. You go from sports, to politics to heart-wrenching tragedy and relative upliftment.
Your readers can see the interview on sky-news by clicking here and heading to the sky website.
At the risk of sounding blasé – I don’t even see why there is a question in this. Hannah’s life is Hannah’s life, and no one can do squat about that. It’s her choice.
Who gives anyone the right to even assume they have a say in what her choices regarding her health should be – seriously, why is it even an issue? Who has a God complex that says that a sound-of-mind young girl cannot make up her own mind? She sounds as if she knows what she wants. What are they going to do? Strap her down and operate? Keep her locked up until a donor heart arrives?
Its ridiculous, really, and if she wants to spend the last 6 months playing with puppies and watching the Boks thrash the Poms and the British Lions, instead of taking a painful and miserable 50-50 call, it’s purely her choice, and no one can make her choices on her behalf. If that is allowed to happen, boy, are we in trouble!
Having watched my daughter in a similar predicament, I’d be inclined to say Hannah’s parents are handling this the best way by giving her the choice. I’d like to see Hannah try the transplant, but if she’s had enough, she’s had enough. Children are remarkably tough and mature when they have to be. Good luck Hannah, and do what you feel is right.
Funny, my first instinct was exactly the opposite of yours. I believe most 13yr olds are definitely not “too young to make an informed decision” about themselves. No way. And ESPECIALLY not with supportive, informed parents helping them make up their own minds (as opposed to “steering them in the right direction”!).
I agree with your ultimate conclusion (let Hannah decide for Hannah), but I have far less dilemma about it.
Having an op is a MAJOR decision. I believe your first response to a surgeon suggesting you be “put under” and “cut open” should ALWAYS be “NO WAY” until you have been completely persuaded otherwise after much research.
I am in a para-medical field and it never ceases to amaze me how trusting people are of their surgeons. Hello! These people do surgery to pay for their Mercs. Hospitals pressurise them into keeping up their “batting averages”. You HAVE TO think carefully, get a second opinion, weigh up the pros and cons, and then still remember if all the evidence points to going ahead with the op that you could still die of infection in the hospital (a very real danger in all hospitals, public and private, throughout the world).
Two other things you wrote disturb me:
1. “That said she is still no more than a very bright 13-year-old” – !!!?
2. After “doctors feel compelled to intervene because they believe that they are acting in the best interests of their patients” you wrote “While that is undoubtedly true . .” – Why is that “undoubtedly true”???? I don’t believe that is necessarily so at all.
This says it all for me:
“a hospital Trust acting on behalf of the hospital where Hannah has been receiving treatment made application to the High Court to compel Hannah to undergo the surgery”
That’s Big Brother Bad in my book!
Follow the money: Hannah says no, the hospital makes Rx.
Hannah is forced to comply, the hospital makes 50 times Rx.
Anyone who thinks that’s wrong of me to say that does not know hospitals as businesses.
This is a delicate choice between ethics, morality and compassion and individual liberty.
I watched this young girl flanked by her mother and was struck more by her bravery and eloquence for somebody so young who has spent a better part of her young life in hospitals.
Her family and her mother in particular seems to have resigned herself to losing her daughter at home.
The pro and con of this case are very difficult judge, I am happy that I am not her local MP, Secretary of Health, Minister of Children and even Gordon Brown himself.
This is one case that neither Labour, Conservatives or Lib Dems will want to jump on.
It is too delicate, but very human.
Heartbreaking indeed Traps, but Hannah has the right, finally, to decide how she lives in the time remaining to her. Brave parents and brave girl, but ultimately, life is for living, and ‘maybe’cannot guarantee an end to her suffering. Life is necessarily short, and too often we, and the medical profession, attempt to prolong it against nature and the will of the patient, because they can, or believe they can. Should they? Right or wrong? As you said – an individual choice,an appallingly difficult one.
Stephen Hawkins was told that he would die before he was 30.
I find myself incensed by the manner in which the media and its exponents feel that they have the right to comment on this matter. What utter ghoulishness!
The only people who have any right to comment or deliberate on this issue are the girl and her parents.
The views of the rest of us are absolutely irrelevant
Her choice, straight off!
The rest of the story only served to consolidate that vote.
My only comment would be on a hypothetical ‘first reaction’
“How can anyone even pay lip service to a 13-year-old child who is far too young to make an informed decision?”
How parochial and utterly patronizing!
Compared to the infantile squabbling displayed by our allegedly ‘adult’ leaders on this continent, this young woman manifests the dignity and serenity of a seasoned matriarch.
@Pete
It probably being a NHS hospital…hospital makes R0.
Thanks Nic – Guys if you click on “Nic” you’ll get to visit another great site.
I also enjoyed going through yours ZK.
Whether or not a 13 year old is old enough to make a decision surely depends on whether that decision has been made, surely?
If she DOESN’T make a decision, then, yes, she is too young to make that decision. Most adolescents would probably leave such a decision in the hands of their parents, or of somebody that they trust.
But, having made the decision, then surely it’s wrong to act against that decision? Whatever her age.
Dave – For me it is important that she understands her position, her choices and what the one she has chosen means in relation to giving up on the others.
If she does and makes that choice then (unless it is total lunacy) provided she is of sound mind and it is within the law we must accept that. For example if she chooses to kill herself we must intervene.
@ Michael…..you say…..”if she chooses to kill herself we must intervene”.
Two questions:
1/ Why?
2/ By what right?
Anton in most countries it is illegal to aid, abet or incite suicide.
Failed suicides can even be classified as attempted manslaughter if part of a pact.
In terms of a succesful suicide while the party is beyond our reach if they are dead there are still legal ramifications.
@ Michael
I am well aware of the fact that it is illegal to aid, abet or incite suicide in many countries.
I feel very strongly that nobody has the right to interfer in the life decisions of others regardless of circumstances
Steve: Maybe so, but then why try and force her to change her mind? Possibly because intervention is what doctors do (like engineers build tollroads, whether the road is needed or not)??
My guess in this case would be that there was money there (hospital trust; threat of court case).
Believe me, the right thing to do is:
1. Say no
2. Research it
3. Think it over
4. Make up your own mind
5. The hard part – everyone else should RESPECT YOUR DECISION.
Even the kindest, best, most humane, sincerest doctors are deeply enmeshed in a system which is geared to production.
ONLY YOU WILL LOOK AFTER YOU.
Traps
I agree with Anton. The laws against suicide are a hang over from the past – when your estate was forfeit if you committed suicide and deprived the state of a citizen (wife and kids got nothing).
Nic
Thanks for that link – saved us all R400 plus travelling to hear Zapiro.
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 physiologic 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.