How far to go to save a child?

[Nova Andromeda]

-This topic is inspired by this news item. Last June 29th a 6 year old girl had part of her intestines sucked down a pull drain. She underwent transplant surgery for a new small bowel, liver and pancreas. Recently, she died from complications.

-For the purposes of discussion left us assume that the child in question is the one from the above news item and it is decision time for the transplant surgery. There is no doubt the recovery will be entirely miserable for the child and take a long time. Death despite the treatment is common. Full recovery is rare, but there is a significant likelihood that the child can have a meaningful life if the treatment is successful.
-What parties should be allowed to make and/or veto the decision on whether to go ahead with the treatment? Keep in mind the parents aren't exactly unbiased and may wish try everything under the sun despite the child's suffering or nothing at all because science is evil. The child is not old enough to make long term rational decisions of this sort, but maybe they should have some input anyhow. Can doctors be relied up to properly consider quality of life? Can one ever really trust the state to make such a decision? Which of the above could reasonably be given a veto? I'm sure there are many other parties one could involve, so feel free to discuss them.
-At what estimated percentage recovery would you opt to forgo the treatment (e.g., 5%, 20%, 50%)? Can you derive this % or at least relate it to a set of reasonable morals?
-Should treatment options be related to the ability of the guardians to pay for it?




(If major considerations have been overlooked I may update the OP below)

[Junghalli]

So what's the dilemma supposed to be? Go with a somewhat risky treatment that can restore semi-normal quality of life vs. leaving her on a feeding tube indefinitely?

I'd say whether or not to take the risk is then something that should probably be left up to the parents.

[Gullible Jones]

This doesn't seem all that ambiguous to me, seeing as the alternative to the surgery is to let her die; which seems pretty damn stupid given the possibility of successful recovery and living a normal life. Granted, the recovery is going to be miserable, but I don't see how it could possibly be as miserable as bleeding to death with half of your intestinal tract torn out, courtesy of moronic parents who didn't even let the doctors try.

-At what estimated percentage recovery would you opt to forgo the treatment (e.g., 5%, 20%, 50%)? Can you derive this % or at least relate it to a set of reasonable morals?

Less than 5%. If there's a high probability that she can live a normal life, given that she survives, allowing her to die is idiotic.

Also, if she doesn't survive - it won't be for lack of trying. And she doesn't have to die in agony either, it's not as if painkillers don't exist.

-Should treatment options be related to the ability of the guardians to pay for it?

Who the hell are you kidding? Life is more precious than cash. Limitation of the treatment options would be a disgusting violation of basic medical ethics.

[Nova Andromeda]

So what's the dilemma supposed to be? Go with a somewhat risky treatment that can restore semi-normal quality of life vs. leaving her on a feeding tube indefinitely?

-Presumably, she would die quickly without the medical treatment. In addition, a coma could be induced and pain killers could be used during that time.

I'd say whether or not to take the risk is then something that should probably be left up to the parents.

-Do you have a reason for this? I would be strongly against giving the parents the sole decision making ability. The reason is very simple. The parents cannot be relied upon to make an informed rational decision with regard to their child. I would aim for greater a than 50% chance that the child's life will be more happiness than suffering. However, postponing a final decision can be justified if there is a real chance of learning more about the odds and the suffering incurred during this time isn't too onerous. Fortunately, one probably can induce a coma and/or use pain killers.

This doesn't seem all that ambiguous to me, seeing as the alternative to the surgery is to let her die; which seems pretty damn stupid given the possibility of successful recovery and living a normal life. Granted, the recovery is going to be miserable, but I don't see how it could possibly be as miserable as bleeding to death with half of your intestinal tract torn out, courtesy of moronic parents who didn't even let the doctors try.

-A coma can probably be induced or pain killers can be used. Dying may be far preferrable to suffering for a very slight chance at life.

Less than 5%. If there's a high probability that she can live a normal life, given that she survives, allowing her to die is idiotic.

Also, if she doesn't survive - it won't be for lack of trying. And she doesn't have to die in agony either, it's not as if painkillers don't exist.

-At the 5% mark you would be condeming up to 19 kids to prolonged agony on average to save just one kid that may or may not live a meaningful life (in this scenario it's not known).

Who the hell are you kidding? Life is more precious than cash. Limitation of the treatment options would be a disgusting violation of basic medical ethics.

-I don't know where you live, but here in America treatment depends on whether you have cash / insurance.
-Aside from the above, there are the economics to consider. Society cannot afford to try everything for everyone (yet). However, I would grant you that kids should be given far more priority than the elderly.

[Junghalli]

-Presumably, she would die quickly without the medical treatment. In addition, a coma could be induced and pain killers could be used during that time.

So the choice is a surgery with some associated risk of death that will give her a semi-normal quality of life vs. certain death? How the hell is this any kind of moral dilemma? Of course you do the surgery.

Do you have a reason for this?

Who would you rather have making the choice?

I would be strongly against giving the parents the sole decision making ability. The reason is very simple. The parents cannot be relied upon to make an informed rational decision with regard to their child. I would aim for greater a than 50% chance that the child's life will be more happiness than suffering. However, postponing a final decision can be justified if there is a real chance of learning more about the odds and the suffering incurred during this time isn't too onerous. Fortunately, one probably can induce a coma and/or use pain killers.

You seem to be arguing that the child is arguably better off dead. In cases like that if you're not going with what the parents want it's better to opt on the side of caution. When you get right down to it death is irreversable, life is not.

[BountyHunterSAx]

While I agree with what has been said beforehand for the most part, it does make me want to ask another question:

How much money is it worth to use modern medicine to save the life of an infant (1yr or less)?

For those who say 'priceless' please realize that - at least the way I understand it - money represents the scarce resources of the earth and how they ought to be distributed. 'Priceless' means you would have every person on earth starve to death, all industry halted etc, in order to save that one child's life.

-AHMAD

[Gullible Jones]

No it doesn't. Don't play stupid games with definitions, please.

[Solauren]

First, allow me to kick BountyHunterSax in the nuts a few times to make sure he can't have children, since he can't even understand the question and premise.


Anyway; death vs a chance to live.
That's what it gets down to.

It's not 'Death vs Chance to live diminshed vs Chance of dying on failure or great if live.

Death vs Life.

Life wins, every time.

Period.

[BountyHunterSAx]

@Solauren:

What question and what premise am I not understanding? The one I posed, or the topic-creators, which my question was not addressing?

@Gullible Jones

I'm not definition-picking or semantic whoring. If someone says a thing (like 'life') is 'priceless' there are two ways to interpret the word 'priceless', as I see it: monetarily and non-monetarily.

If we're interpreting it monetarily there are two ways to take it:
a) "The price is absent - priceless" That's a literal take on the word, and if you try to translate it to a cash amount (to answer the question "how much money?") it doesn't actually give us any number, but rather allows for every number on the spectrum, no?
I concede I had not thought of this particular interpretation of priceless at the time of posting my question, and if this is what you meant by saying I was playing a definition game, i'm sorry.

b) "The price is so high that it cannot be quantified!" That's a metaphoric take on priceless (ie: a priceless diamond), and the normal colloquial meaning. If something were *truly* priceless, then all the money in the world would not satisfy the cost. That is to say, if every person on earth gave up all material things they had - their clothes, houses, time, capital, etc - they would be unable to meet the ransom for that object. THIS is what people *usually* mean when they refer to priceless in a financial context, though it's understood as hyperbole. I was asking for a price - how much money would you say it's worth. And so I felt it a necessary caveat to show just how high priceless was.


Now, if we're interpreting it metaphorically entirely, then priceless means just that - "This sort of object cannot have a price attached to it, it is priceless." This answer is the answer most of us probably believe, but it is entirely useless in answering the question I posed.

Because when push comes to shove, medical treatment costs SOMEONE money. And if that treatment is the last line between life and death, and the amount of money to be paid is arbitrarily high (as in the scenario I posed) then you are *FORCED* to attach a monetary amount to the value of that life. Would you pay everything you own for that life - of a 1 year old you don't even know? Would you make ME pay it? Would you make everyone in the world pay it?

-AHMAD

[Gullible Jones]

If the scenario involved, for instance, a child with advanced cancer, who would have to go through years of grueling chemo and radiation treatments, with a high chance of the treatments not working and the potential for the chemo and radiation to cause secondary cancers - that would be ambiguous. This isn't.

Try putting yourself in the patient's shoes. If they just let you die... that's the end, period, even if it's painless. If you get the surgery and don't make it - then at least you got time to say goodbye, and they can still do things to mitigate your pain and suffering. If you get the surgery and you do recover, you'll probably lead a normal, healthy life - one long enough to make the surgery very much worth it.

I think you know pretty damn well which option you'd take. I'm not saying there aren't situations where person would be justified in choosing to die, but this hardly qualifies.

-I don't know where you live, but here in America treatment depends on whether you have cash / insurance.

Which is why everyone here who isn't ignorant, stupid, or insane would like a national healthcare system. Sure there are downsides to socialized medicine, but they don't hold a candle to the crap you get with a privatized system.

-Aside from the above, there are the economics to consider. Society cannot afford to try everything for everyone (yet). However, I would grant you that kids should be given far more priority than the elderly.

Oh come on, do you seriously mean to tell me that saving a few dozen kids a year who get their intestines ripped out by pool drainage systems is more than our society can handle? We've been sinking two billion dollars per week in taxpayer money to keep Iraq occupied. Replacing vacuumed-out guts is small change.

[Boyish-Tigerlilly]

A cost limitation could be the point at which you begin to sacrifice something of equal or greater moral value. Obviously, when someone says priceless, they don't really mean that they would spend unlimited amounts of resources on something. It's a bit of a hyperbole.

When you spend resources, there are things you aren't doing with those resources otherwise. It depends whether or not you can bring more utility by spending it elsewhere.

I've heard of cases of people giving up many years of their life, their saving,s their job, etc, to save the life of someone they loved, even if that person had no real quality of life (comatose, etc). That's their decision. I don't agree with it, but they actually thought it was "priceless" to them.

We can pretty much afford these cases such as the pool, I think, without sacrificing too much (ie, more lives lost or something).

[RogueIce]

If it's just a choice between implant or not, then it's not too hard a choice: go for it, and hope for the best.

I'd think the real ambiguity is how much precedence the child would have over, say, a hypothetical 65 year old person who also needs the transplant, but has a much better (say, 85% or so) chance of living, and there's only the one organ to transplant. Then who do you save?

Actually, re-reading the OP, this is multiple transplants, so you could have two versions: only two people, and each needs all three, or the child and three others who need only one, but are generally the same (older, better chance of living). Would there be a "Well, they're too old and will die soon anyway" cutoff?

The scenario in the OP can easily be replaced with "highly risky, small chance of success" medical procedure. If you're talking about transplants though, there seems to be almost always a shortage of what's needed compared to who needs them, so priorities have to be set. I think that'd be the better way to approach a "How far to go to save a child?" question.

[Broomstick]

-For the purposes of discussion left us assume that the child in question is the one from the above news item and it is decision time for the transplant surgery. There is no doubt the recovery will be entirely miserable for the child and take a long time.

Where do you get the notion that "recovery will be entirely miserable"? I've known several people who have received organ transplants and, yes, it does take time to heal and recover but every single one has told me that, upon awakening from that surgery, they in many ways felt better than before. Why? Because they have properly working organs, it makes a huge difference. Provided the pain is properly managed I don't see where you get the idea of "entirely miserable". A bad burn or an amputation would arguably be worse in some ways physically, almost certainly psychologically, and could require a longer recovery.

In this case complications killed the girl - but infections and complications are a risk with ANY surgery. Getting cancer as a side effect is a little more unusual, but it, too, is a known risk of transplant surgery (as well as a few other medical treatments).

Death despite the treatment is common.

Death is inevitable to all of us. If you don't have intestines death is inevitable in 5-10 years due to organ damage caused by a very unnatural method of feeding that the body doesn't tolerate long term. If you get an organ transplant you might only live 5-10 and take enormous numbers of pills, but you will have a life closer to normal and without so much organ damage, which will at least give you the option of another transplant and maybe another 5-10 years of life more. Assuming a good outcome, most of those years will be pain-free and pretty normal outside of daily medication and regular check ups.

-What parties should be allowed to make and/or veto the decision on whether to go ahead with the treatment?

This requires a consensus between doctors/medical professionals and the parents, with possibly some contribution by the child in question (a 15 year old, for example, having more input than a 5 year old). It wouldn't be a bad idea to drag in a medical ethicist and maybe some people with experience in rehab, too, for a realistic idea of what will be required and how much the child can be restored to normal.

Can doctors be relied up to properly consider quality of life?

No. I no longer have access to the studies at my former place of employment, but doctors tend to wildly UNDERestimate quality of life, or OVERestimate it. The only reliable source for that information are patients, and you have to recognize that human beings are enormously varied in what they will tolerate. A condition one person finds an annoyance another may commit suicide over, finding it intolerable. This is why you need input from people who do rehab work and not just surgeons.

Can one ever really trust the state to make such a decision?

No.

At what estimated percentage recovery would you opt to forgo the treatment (e.g., 5%, 20%, 50%)? Can you derive this % or at least relate it to a set of reasonable morals?

Here's the problem with the case mentioned in the OP: multi-organ visceral transplants (what you're talking about) are still rare and considered by many experimental. By virtue of that fact alone there will be a high mortality and complication rate because the techniques are not perfected. But someone has to go first. Some people will react with horror that their child is being experimented upon. Some will find comfort that, even if their child does not survive, the doctors may still learn something that will help others.

There is also the matter of how imminent is death. If a medical condition can be managed for a number of years without transplant surgery then that is typically what is done. If death will occur soon and it is certain then it is hard to argue against taking a chance at life if it is available. On the other hand, it may make for a longer, perhaps more painful death (although really the pain involved should be something that is managed). I don't think it's something you can assign a fixed value to as each situation will be quite different, as will the people involved.

Should treatment options be related to the ability of the guardians to pay for it?

In an ideal world, no. In the real world economics is a huge factor, particularly in the US. There are also charities and programs to help alleviate such costs, but it's spotty at best.

[Broomstick]

I'd think the real ambiguity is how much precedence the child would have over, say, a hypothetical 65 year old person who also needs the transplant, but has a much better (say, 85% or so) chance of living, and there's only the one organ to transplant. Then who do you save?

In reality, this would be an extraordinarily rare thing. I've never heard of it actually occurring - and I used to work down the hall from the people running the Blue Cross arm of the transplant network, we were in the same department. The best tissue match gets the organ. It is a vanishingly small possibility that TWO people who have identical immune profiles, outside of identical twins (and identical twins are less likely to wind up on organ waiting lists because one of the two is usually healthy so there are options for, say, kidney donation or even liver the rest of us simply don't have). Who's the best match is sufficient to solve that problem, and the best match has the best chance of survival.

Where you might have an issue is one person needing several organs at once vs. 2 or 3 needing organs, and all are an acceptable match (cause only identical twins/triplets/clones have perfect matches). THAT's pretty effing rare, too, but as best I recall the single-organ people get first dibs. That's because the survival rates for a single-organ transplant are better than for ANY multi-organ. You don't want to kill 2 or 3 people to save just 1.

When someone needs multiple organs the best rate of success is when all the donated organs are from the same donor. This is not only for immunological reasons but also because the "plumbing" between the multiple donated organs can be kept intact, greatly reducing the length of surgery and the possibility of complications.

Another complication is that for a single organ transplant only that single organ needs to be intact - for multiple-organ donations they ALL must be in acceptable condition. So... if the donor is in a Horrific Car Accident not only their brain but other organs may be smashed or ruined, but hey! The kidney is intact, and one of the corneas! But - uh-oh - their heart and lungs are damaged, can't use those, the liver was ruptured, can't use that....

Actually, re-reading the OP, this is multiple transplants, so you could have two versions: only two people, and each needs all three, or the child and three others who need only one, but are generally the same (older, better chance of living). Would there be a "Well, they're too old and will die soon anyway" cutoff?

Since the problems of matching organs usually takes care of that issue the question almost never comes up - it would be rare (although it does happen) that there are two on the list who could use a particular organ and are equally matched... three would be unheard of. Single-organ transplants take precedence over multi, because the survival rates are so much higher, and you can help more people.

IF - and it's a huge if - you had TWO multi-organ needing people who turned up a more or less equal match that would probably have to be settled by a consensus of decision makers. A deciding factor may not be absolute age so much as physical condition. Someone who needs organs due to a very long, protracted illness/disease may have extensive damage throughout the body, but someone needing them due to accident (such as this young girl) may have the rest of their body relatively undamaged and thus would have a much better chance of recovery and survival. That's the sort of factor that would be taken into account.

If you're talking about transplants though, there seems to be almost always a shortage of what's needed compared to who needs them, so priorities have to be set.

But with organ donation the problem of matching donor and recipient on a biological level eliminates many of these scenarios. Only if we get much superior immune-modification techniques that would make the need for an exact match, or even a close match, unnecessary would these dilemmas start to occur.