Hannah Jones: not euthenasia, just heartbreaking

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!