Ethics of REFUSING an Organ Transplant

[Broomstick]

Taken from the BBC version of this story, this article describes the case of a young girl who declined a heart transplant and authorities nearly forced her to have it any way. The default thinking is usually that the patient will chose life, that life is in the best interest of the patient even if it involves unpleasant and continuing medical intervention. Further complications is that this girl is only 13. Is that really old enough to make such decisions?

A terminally ill girl has won the right to refuse treatment after a hospital ended its bid to force her to have a heart transplant.

Herefordshire Primary Care Trust (PCT) dropped a High Court case after a child protection officer said Hannah Jones was adamant she did not want surgery.

Hannah, 13, of Marden, near Hereford, said she wanted to die with dignity.

Her father Andrew said he and his wife supported her decision but they had been upset by the PCT's actions.

He said Hereford County Hospital's child protection team had contacted them in February threatening to remove Hannah from their care if they did not bring her to hospital for the operation.

The threat that somebody could come and forcibly remove your daughter from you... was quite upsetting really

Hannah, who has a hole in her heart, had been offered a transplant in July 2007 but said she did not want to go through with it after taking advice from doctors, Mr Jones said.

She said the operation might not work, and if it did work, it would be followed by constant medication.

Hannah was interviewed by the child protection officer after the trust applied for a court order in February to force the transplant.

She said she wanted to stop treatment and spend the rest of her life at home and the PCT subsequently withdrew its legal action.

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."

Hannah Jones decided she did not want a heart transplant

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."

Hannah previously suffered from leukaemia and her heart has been weakened by drugs she was required to take from the age of five.

Last week her father was forced to cancel plans to take her to Disneyland because he could not get insurance for her.

The family had been given the holiday to the US by the charity Caudwell Children.

Sally Stucke, a consultant paediatrician at Herefordshire Primary Care Trust, said it had been "an extremely complex case".

She added: "No one can be forced to have a heart transplant.

"We understand that the child and the family's views in relation to care and treatment might change over time as the child's condition changes.

"Any individual has the right to change their mind at any time.

"When considering whether a child is able to make a decision we would consider the age and the maturity of the child as well as the views of the family and others as appropriate.

"A child has the right to change their mind and all professionals providing support to the child and the family have to be sensitive to that."

'Perfectly capable'

Dr Tony Calland, chairman of the British Medical Association's ethics committee, said a child of Hannah's age was able to make an informed decision to refuse treatment.

He said the House of Lords had ruled in the 1980s that a child who understood the issues and consequences could be considered legally competent.

It followed the case of Victoria Gillick who took her health authority to court claiming she should be informed if her daughters were prescribed contraception.

It was reported that in Hannah's case, the trust intervened after a locum GP raised concerns over her with the child protection team.

Dr Calland said he understood why a doctor might have taken this action.

He said: "I think some doctors take the view that they must intervene and they are making that decision in what they see as the best interests of the patient.

"But of course best interests of patients is not just the best medical interests - it's the overall holistic interests of the person in general."

He added: "I think obviously a child of 13 with these circumstances should be perfectly capable of making the decision and particularly when supported by the parents."

Clive Lambert, headteacher at Hannah's school, St Mary's High School, in Lugwardine, said she was an intelligent girl, capable of making her own decisions.

"She has many friends at school and her presence is a source of inspiration to us all through the courage and dignity that she displays," he said.

[Zixinus]

Sounds to me that a kid got fed up with constant medication and just wanted to die on her own. That, and Child Services doing their job, if a bit over-eagerly. That, and the doctors surprised to find someone who actually doesn't want to live.

The bit about the leukaemia suggests that she was not very healthy to begin. I would dare guess that she felt that she was on burrowed time already.

I might have been sloppy reading, but I don't see much information about why the child didn't want the heart transplant.

The question I would make is whether a 13-year old can really tell whether life's worth living. But the parents are in with it and the kid came to this decision on her own account (as far as I can tell), so I don't really see an issue here. I wonder whether the thought that the heart would save someone's life would factor in the question.

[Gerald Tarrant]

The bit about the leukaemia suggests that she was not very healthy to begin. I would dare guess that she felt that she was on burrowed time already.

Many chemo drugs do damage to the heart. My brother was prescribed "Coreg" for his heart and a few other drugs (for other organs) to try and repair damage that chemo did. While he was on chemo he'd get regular echocardiograms and other tests, just to be sure. I'm pretty sure this kid's case is complications from Leukemia.

As to her current health, since she was on the transplant list, she's almost certainly still in remission. In the US patients with active cancers are bumped from recipient lists in favor of patients with better survival chances.

I might have been sloppy reading, but I don't see much information about why the child didn't want the heart transplant.

Speculation: She might have had very unpleasant experiences with her chemotherapy. That might bias her against more drugs and procedures

Someone also could have shown her the odds

#
# As of June 15, 2007, the one-year survival rate was 87.4 percent for males and 85.5 percent for females; the three-year survival rate was about 78.7 percent for males and 75.9 percent for females. The five-year survival rate was 72.3 percent for males and 67.6 percent for females.

American Heart Association

An additional factor; Cyclosporin (the anti-rejection drug of choice in the US) can build up in the kidneys and shut them down. That and other factors can make end of life scenario for transplant patients agonizing.

Balanced against that there are some pretty impressive stories about long-term survivors, I was reading somewhere about a recipient who, ~20 years after transplant completed an Iron-Man Triathalon . The girl in this story may not have had sufficient emphasis placed on the hopeful side of transplant. Hopefully to try and change her mind someone will bring in a survivor to talk about what they've managed to do with their lives post transplant.

[loomer]

Or maybe, just maybe, they could let her die. In a better world they could even help her go peacefully. This heart can now go to someone else, possibly someone who will contribute more to society on a short or long term basis.

[Broomstick]

There is a conflict between "heal the sick" and "heal the child" and "let this person go" that I was interested in exploring. Clearly, some individuals were concerned enough to call in outside authorities to try to force a transplant. Clearly, other individuals judged that this young girl was capable of making a reasoned decision.

How would it have been different if this transplant was refused for religious reasons?

How would it be different if she was older or younger?

When is this course of (non) action appropriate, and when is it not?

Yes, there are some long term transplant survivors who are doing very well. There are also people who die during the surgery. There are people who do not do well after the surgery. You can't make judgments based on the very best or the very worst case scenario, can you?

[B5B7]

Hannah, 13, of Marden, near Hereford, said she wanted to die with dignity.

Ironic, isn't it? Elderly people with a lifetime of experience aren't considered qualified to make a decision to end their own life via euthanasia, because governments are in the thrall of religious ideologies [generally the population has a significant majority in favour of euthanasia].

[Count Chocula]

Don't know about the UK, but in the US she's a ward of her parents. In the US, anyway, Hannah would not have been able to make that choice - her parents would have decided for her.

[Junghalli]

I find the idea of refusing a lifesaving operation with a high probability of success incomprehensible myself, but I guess as long as the person is mentally sound and competent to make the decision and understands all the factors involved we should let them have their wish. Especially since, crass as it may sound, IIRC there are more people who need transplants than there are transplants, so it may free one up for somebody who actually really wants it.

[The Romulan Republic]

How the fuck are people ok with this? 13 year olds aren't allowed to consent to sex. How the hell can they be allowed to consent to die?

[Broomstick]

That's a very good question - which of you yahoos want to try to answer Romulan?

[Darth RyanKCR]

I can try to answer. I am a possible candidate for a heart transplant. I am 37 and have been through quite a bit and it is very exhusting emotionally and physically. There were times where I was just done with it all. I still get like that. From what I read she's been through more in 13 years then I have in 37. She may just be done. No more. Even if she survives the transplant how much of her emotionally will be there. That has to be answered I'm not too sure I can condone it but I sure can understand it.

[The Romulan Republic]

I can try to answer. I am a possible candidate for a heart transplant. I am 37 and have been through quite a bit and it is very exhusting emotionally and physically. There were times where I was just done with it all. I still get like that. From what I read she's been through more in 13 years then I have in 37. She may just be done. No more. Even if she survives the transplant how much of her emotionally will be there. That has to be answered I'm not too sure I can condone it but I sure can understand it.

Which I'm afraid in no way answers why, legally, she should be able to give consent.

I admit I made a bad example by comparing it to consent to sex, as their are a whole other set of reasons their. I'll concede that before someone calls me on it. But still, she is very young, at an emotionally erratic and immature stage in many people's lives, and not nessissarily well-informed or capable of being well-informed. She can't live alone, work, vote, or drive, yet she's considered mature enough to choose to die?

I sympathize with what she's done, but even if I accepted that one should have the right to choose death, I cannot accept that a minor should be able to make such a complex, emotionally charged, and permanent choice.

[Singular Intellect]

How the fuck are people ok with this? 13 year olds aren't allowed to consent to sex. How the hell can they be allowed to consent to die?

Because if death is the lesser of two evils (ie: as opposed to living in constant pain), there should be no problem with it whatsoever. And there is only one person who is able to determine whether a life of pain is better than dying; the one who has to live that life of pain.

While the child's age is of concern, so long as the child is consulted thoroughly and understands the nature of the request, I would consider it inhumane to deny the right to die.

To me it's fucking pathetic and sick that we'll relieve the suffering of a non human, but argue humans should suffer rather than die even if they can express the choice to do so.

[Singular Intellect]

Which I'm afraid in no way answers why, legally, she should be able to give consent.

That's because you're starting with the faulty premise that 'legally' is equal to 'ethically' and 'morally'.

[Singular Intellect]

But still, she is very young, at an emotionally erratic and immature stage in many people's lives, and not nessissarily well-informed or capable of being well-informed.

An unfounded assumption; her life situation can easily have forced her to grow up much faster than her relatively worry free counterparts.

But as I stated earlier, any person (child or otherwise), should be thoroughly consulted, educated and talked to before being allowed to make this decision.

She can't live alone, work, vote, or drive, yet she's considered mature enough to choose to die?

Lives of suffering don't give a shit for age.

Your aguement boils down to "You have to suffer this X amount of years before we let you decide to end it".

I sympathize with what she's done, but even if I accepted that one should have the right to choose death, I cannot accept that a minor should be able to make such a complex, emotionally charged, and permanent choice.

See above.

[PainRack]

Many chemo drugs do damage to the heart. My brother was prescribed "Coreg" for his heart and a few other drugs (for other organs) to try and repair damage that chemo did. While he was on chemo he'd get regular echocardiograms and other tests, just to be sure. I'm pretty sure this kid's case is complications from Leukemia.

There's also the bit about the hole in the heart....... which sounds iffy as it is. Vincristine was probably just the straw that broke the camel back.

Which I'm afraid in no way answers why, legally, she should be able to give consent.

I admit I made a bad example by comparing it to consent to sex, as their are a whole other set of reasons their. I'll concede that before someone calls me on it. But still, she is very young, at an emotionally erratic and immature stage in many people's lives, and not nessissarily well-informed or capable of being well-informed. She can't live alone, work, vote, or drive, yet she's considered mature enough to choose to die?

I sympathize with what she's done, but even if I accepted that one should have the right to choose death, I cannot accept that a minor should be able to make such a complex, emotionally charged, and permanent choice.

IIRC, in Australia, pending the guardian/parent disapproval, it would be legal for the child to give or deny consent for a procedure, again with the usual caveats. Here in Singapore, its the case of if the parents isn't available to give consent and the child is above 12, and with the usual caveats of maturity/intelligence/etc, they are also able to give/deny consent.

Furthermore, I believe you're confusing the issue.　It would seem from Child services threat to remove the child from the parent care that what happened was the child decided she didn't want to go for the procedure, and the parents agreed with her decision and thus withheld consent.

[PainRack]

There is a conflict between "heal the sick" and "heal the child" and "let this person go" that I was interested in exploring. Clearly, some individuals were concerned enough to call in outside authorities to try to force a transplant. Clearly, other individuals judged that this young girl was capable of making a reasoned decision.

How would it have been different if this transplant was refused for religious reasons?

Interestingly, the trend has swung against Jehovah Witness children refusing to accept blood for religious reasons..... Hopefully, if a transplant was rejected for religious reasons, it would be overruled by the court as undue influence or some other legalese.

How would it be different if she was older or younger?

Current laws prevent any true child, as in those below the age of 12 from being able to participate in medical care.

When is this course of (non) action appropriate, and when is it not?

Its always appropriate? There could be a plethora of reasons why the child is rejecting the transplant and so long as its an informed decision, there's really nothing one can do. And yes, I'm rejecting religious reasons as a source of INFORMED knowledge.

[The Romulan Republic]

Which I'm afraid in no way answers why, legally, she should be able to give consent.

That's because you're starting with the faulty premise that 'legally' is equal to 'ethically' and 'morally'.

Perhaps I worded that badly. I don't believe that "legally" is equal to "ethically". Dear God no. But in this case there are very good reasons for those laws, upon which I elaborated.

Yes, she's been through terrible suffering. If anything I imagine that would cloud her judgement when it came to making the best decission. She is, I repeat, at an age where most people are considered immature, an age know, I beleive, for emotional confusion or volatillity. She does not have the experiences of an adault, and may not have the means to reserch the risks of a procedure or get second opinions that an adault would. We don't know everything about her circumstances, but in gerenal, these concerns are valid. There's a reason for age of consent laws.

So I repeat: how is she to young to live alone, work, vote, or drive, but has every right to make a decission as emotional, complicated, and permanent as choosing to die?

[Singular Intellect]

Which I'm afraid in no way answers why, legally, she should be able to give consent.

That's because you're starting with the faulty premise that 'legally' is equal to 'ethically' and 'morally'.

Perhaps I worded that badly. I don't believe that "legally" is equal to "ethically". Dear God no. But in this case there are very good reasons for those laws, upon which I elaborated.

Yes, she's been through terrible suffering. If anything I imagine that would cloud her judgement when it came to making the best decission.

Possibly. But ultimately it is up to her to judge whether living with that kind of pain is worth it, something neither you or I are factually or morally capable of deciding for her.

Let's put it this way; even if you were in an identical state at an identical age, you're still not qualified to dictate to her whether the pain and suffering is worth it. What's worth it for you isn't necessarily worth it to someone else.

She is, I repeat, at an age where most people are considered immature, an age know, I beleive, for emotional confusion or volatillity. She does not have the experiences of an adault, and may not have the means to reserch the risks of a procedure or get second opinions that an adault would.

Hence my arguement that before permitting such a decision, society/parents/friends are obligated to educate a person as much as possible on the decision and present all alternative options.

But ultimately the decision should still be hers, and hers alone. Even parental rights are forfeit as far as I'm concerned.

Any parent who would chose the uncontrollable and incurable suffering of their child over the humane act of letting them die in peace is a self absorbed monster.

We don't know everything about her circumstances, but in gerenal, these concerns are valid. There's a reason for age of consent laws.

So I repeat: how is she to young to live alone, work, vote, or drive, but has every right to make a decission as emotional, complicated, and permanent as choosing to die?

Because every example you've listed is an optional state of existence dictated by choice; her infliction of pain and suffering beyond our medical ability cure is not.

Again, to insist a human being must suffer an X amount of years before being given the choice to end said suffering is...inhumane to say the least. The right to die with dignity and end unnecessary suffering is something no human should ever have taken from them.

I'll be the first to line up and ask "Is this the only way?" along with whatever options are available. But outright deny that person the right to die, forcing them to live a life of pain to appease my own perspective on life and death?

I would consider that a crime against humanity of the highest order. There's is no moral, ethical, humane or logical reason to insist a fellow human being should suffer with pain for no good reason when the means to die with some dignity is available. And just because a person is young does not suddenly mean any decent human being has the right to dictate whether they suffer or not.

[Singular Intellect]

That, and the doctors surprised to find someone who actually doesn't want to live.

*sigh* Her choice to die with dignity rather than live a life of suffering doesn't mean she doesn't want to live.

Children aren't as stupid as some people like to think, and the girl in question sounds intelligent.

It doesn't take a genius to realize there's a difference between quantity of life and quality of life.

The problem is a lot of people seem to think quantity is the most important issue, with zero consideration for quality of life.

This is one of the reasons my mother, who works in the health care industry, is so often furious with people who keep their 'loved ones' on machines for the rest of their, frankly, non existent 'lives'.

Feeding tubes, respirators, inability to move, in extreme pain, and we sustain this 'life' for what purpose again? Oh yeah, I forgot...wouldn't want the family members to be upset; you know, those fuckers who visit once in awhile, so happy to see their 'loved' one in a living coma, and then going back to their lives of freedom to move, eat, talk, shit on their own accord, etc. Those people make me sick; concerned more about their own feelings than those of their loved ones who have years of staring at a ceiling to look forward to, assuming they can even open their eyes.

I take comfort knowing my family loves me enough that they'd never force that existence upon me, and I'd never do the same to them.