The Charlie Gard case(terminally ill baby and parental rights)

[Broomstick]

@Budget_Player_Cadet

This thread more specifically deals with the question of the child’s suffering, and in this case, I am pretty firmly on the side of euthanasia.

The problem with euthanasia is the nasty, nasty history it has. I am against deliberate killing of patients because in the past it really has turned into a slippery slope and wound up extremely ugly.

In part, there is too wide a definition of “a life worth living” to make this workable. My late spouse lived in chronic pain all of his life but to the very end he still wanted to live longer if it had been possible. He did not find chronic pain incompatible with a life worth living. Other people have a very different view of the same problem. Even if you believe that someone with my spouse’s problem should be allowed to end his own life would you argue that someone should be put to death who wants to live longer despite problems?

We have an infant, not even self-aware, suffering from a terminal, degenerative disease.

My understanding that we don’t need to actively kill this child. Withdrawal of supportive measure would result in death very rapidly, within days more likely. I would argue for palliative care which focuses on relieving suffering but not delaying death.

There is little to no evidence that the cure proposed would have any effect.

Yes. Now, there might be an argument that new treatments at some point require someone to try it out, and in the case of a terminal illness greater risks are sometimes justified due to death being a consequence of doing nothing, but that doesn’t mean every terminal patient should be subjected to medical experimentation. Which is what this is. If the treatment could be brought to the patient in this case I’d be more comfortable with the idea but if you need to bundle up the kid and transport them 1/3 of the way around the world is the kid even going to survive the trip? There comes a point at which the most humane thing is to step back and do nothing (well, palliative care should remain an option, but I think you know what I mean).

Accepting death is very hard. Accepting the death of a child is even harder. But sooner or later reality needs to be faced.

This child is probably in great pain.

On what do you base that statement? My understanding is that the child isn’t even self-aware, is it possible to be in pain if you aren’t conscious?

Regardless, we should err on the side of caution and do everything to mitigate the possibility the child is suffering.

Is holding out for a miracle really worth prolonging his suffering?

And that’s the million dollar question - and where to draw the line is going to vary from person to person. Worse yet, there is no way to ask the person in question his opinion, as you could possibly do with an adult or even an older child who is still conscious.

I don’t think it’s fair to refer to his parents as rational actors here.

Of course they aren’t, their child is dying.

And I’m not sure why the state deciding on this case is so dangerous. Because it’s a slippery slope? I’m reminded of the people terrified that legal euthanasia would be a slippery slope to poor or disabled people being pressured into death - something which never happened.

Yes, it most certainly HAS happened, disabled people have been put to death without asking their opinion or that of their guardians. Please educated yourself about Aktion T4 which killed 70,000+ disabled individuals. That is probably the worst-case of the problem, but there have been other instances of maltreatment and killing of the vulnerable.

This is a situation where the slippery slope really did happen.

[Aspidistra]

Hypothetical time.

Suppose the parents’ plan for curing their child was “we talked to our homeopath, and he said that an all-over concentrated hydrochloric acid bath would completely cure all Charlie’s symptoms.” In that case, everyone on this board would be totally behind terminating the parents’ right to make decisions for Charlie, and handing over that decision-making power to the Ormond Street doctors. Because such a plan would be clearly delusional.

Now, to us (who mostly aren’t doctors, and particularly aren’t specialists in this disease), the parents actual plan - go to America to consult with a doctor who’s had success with similar cases - is not clearly delusional. But it may well be to the doctors. I bet lots of people on this board who are professionals have had experience of a client asking for something which is truly impossible, but they think is perfectly sensible and even easy - and you can’t explain to them why they’re wrong without giving them a crash course in your specialty.

What do the doctors get out of keeping Charlie in their hospital? What do the judges get out of deciding that they should? Nothing but vilification and abuse … but also probably the knowledge of having done their jobs as best they could, that is, look after Charlie’s actual best interests, which don’t include unnecessary suffering if his death is a near 100% certainty.

[CarnalK]

@madsircool

The key word here is needless. As long as there is a >0% chance of positive treatment and the parents are willing to fight for the life of their child the government should not intervene. Doctors might be intellectually smart but they occasionally lack in emotional intelligence.

The case has been taken to court and decided in favour of the hospital’s position. So we aren’t relying on the emotional intelligence of the doctors.

[John_Mace]

@Aspidistra

Hypothetical time.

Suppose the parents’ plan for curing their child was “we talked to our homeopath, and he said that an all-over concentrated hydrochloric acid bath would completely cure all Charlie’s symptoms.” In that case, everyone on this board would be totally behind terminating the parents’ right to make decisions for Charlie, and handing over that decision-making power to the Ormond Street doctors. Because such a plan would be clearly delusional.

Depends. In your hypothetical, is there a generally recognized conventional treatment for what ails the child? And is the child in great pain, and being taken off treatment for the pain in order to be given the non-conventional treatment? Homeopathy doesn’t involve acid baths, so I’m ignoring that part of your hypothetical. If you want your hypothetical to apply to this case, you need to eliminate the acid bath. That does not inform us of what should be done here.

[Broomstick]

@adaher

Problem is, that logic just leads to deciding for competent patients as well. That’s not even a slippery slope. And drawing the line at competence isn’t enough, since most patients will enter an incompetent phase at some point. Is the NHS bound to respect patient’s wishes when they demand aggressive care for their terminal illnesses? Or does the “choice” only extend in one direction? Choose death or we’ll choose it for you?

The problem isn’t “choosing” death for this child, the child WILL die in the near future. Even the doctor developing the new treatment feels it is very unlikely to help the child in any way at this point.

There comes a point at which we die, when it’s inevitable the question is not “how do we cure this?” but “how do we minimize the patient’s suffering?” Switching gears in that manner is very hard because you then have to accept that death is going to happen.

With an adult who is conscious and competent you can say “we can’t save you, and undergoing this treatment is going to be very painful and it’s not going to prolong your life. Alternatively, we can not use that treatment and do everything we can to mitigate your symptoms and keep you comfortable. You pick.”

We can’t do that with an infant, which is why this is so damnably hard. And, oh yeah, baby dying, that’s a nasty kick in the ass, too. It’s somewhere between hard and impossible to be rationale about that.

Adults choosing to do something painful, risky, and probably useless is one thing, but a baby can’t make that choice. Who chooses? And should you compel a doctor to do what the doctor perceives as useless torture because the parents demand it?

[madsircool]

@CarnalK

The case has been taken to court and decided in favour of the hospital’s position. So we aren’t relying on the emotional intelligence of the doctors.

Nor of the courts it seems.

[somepumpkin]

The issue is deepened by the fact that they’ve raised >$1 million. They almost HAVE to take the baby abroad now. What are they going to tell all those *investors *when they decide not to travel?

I agree that the whole premise is incredibly near-sighted and tragic. I also agree that the parents have a right to do it, using their *own *$.

Ultimately, I disagree that they should have that right -in this specific case. I would be OK with (a country’s) NHS dictating accordingly. Though it seems pretty clear in THIS case, other cases may not be so easy to discern. Where does one draw the line between responsibility to the family and responsibility to the patient? I think the responsibility to the patient is paramount.

[Broomstick]

@adaher

The question is whether it is appropriate for a court to order a patient’s death.

The death isn’t being “ordered”, it’s a cause of a disease that is no one’s fault.

I don’t even think it’s appropriate for DOCTORS to make that call. Doctors can certainly refuse to perform any procedure they don’t wish to perform, but they cannot imprison a person.

Transporting this child will inevitably require treatment along the way to keep the child alive - so what do you do, find medical personnel willing to go on the trip? What if none of them volunteer?

The fact that the government pays for it is everything in this case. If the Gards were paying for his care they’d have control over whether he stayed in the hospital or not.

Very, very few people in this world have the kind of money needed to pay for this sort of care. So if you didn’t have the money (99% of the world) you wouldn’t get the care, period. And that applies up and down the board for private funded care, meaning people who could be treated/cured/helped don’t get treated when they can’t raise the funds on their own.

[Novelty_Bobble]

@adaher

Perhaps the courts should be able to decide if you can keep a pregnancy if it’s not in your best interest.

the courts do get involved in exactly those decisions on rare occasions.

The point here isn’t whether the court is right or wrong on the question. The court is right.

The question is whether it is appropriate for a court to order a patient’s death.

that isn’t what they are doing.

I don’t even think it’s appropriate for DOCTORS to make that call.

what are you talking about, no-one is “ordering the death” of anyone. In certain, more backward countries, there may be situations where the court mandates the death of a person but that is certainly not the case in the UK or Europe.

Doctors can certainly refuse to perform any procedure they don’t wish to perform, but they cannot imprison a person.

Who are they imprisoning? how are they imprisoning them?

And please, don’t try to tell me that the NHS has nothing to do with this. The fact that the government pays for it is everything in this case. If the Gards were paying for his care they’d have control over whether he stayed in the hospital or not.

The money is not an issue here, it formed no part of the judgement.

[CarnalK]

@Broomstick

Yes, it most certainly HAS happened, disabled people have been put to death without asking their opinion or that of their guardians. Please educated yourself about Aktion T4 which killed 70,000+ disabled individuals. That is probably the worst-case of the problem, but there have been other instances of maltreatment and killing of the vulnerable.

This is a situation where the slippery slope really did happen.

Yes, many would say Nazi Germany was worst case scenario in a lot of ways. Not sure you can call it a slippery slope though since Hitler’s order to “euthanize” mental patients kind of started near the bottom of the slope already.

[clairobscur]

@John_Mace

If we were talking about saving the child’s life, I might agree. But we’re not. There are all sorts of decisions that parents make every day that may or may not be “in the best interest of the child”. There is never any guarantee that the parents will make the best choice, nor is there always a way to determine which choice is the best. The state should be required to show more than that if it wants to step in.

More than what? More than a baby kept pointlessly in pain, and being made to endure extra suffering by the parents? If we were talking about the color of the socks the kid is wearing, I would agree with you. But this is an issue of massive importance and the preferences of the parents should be an extremely distant second to the interests of the child. In fact, their preference is barely relevant. The only thing that matters in such a situation is the interest of the kid, and I certainly trust judges and doctors more than the parents.

Presumably competent doctors rightfully rang the alarm bell. Presumably dispasionate judges have deecided that indeed the parents weren’t acting for the best interest of the child. I certainly hope that if I were in such a situation, doctors and judges would overule my relatives who wants to keep me in pain. So, I wish the same for the child.

[madsircool]

@CarnalK

Yes, many would say Nazi Germany was kind of worst case scenario. Not sure you can call it a slippery slope though since Hitler’s order to “euthanize” mental patients kind of started near the bottom of the slope already.

He didn’t exactly order it. It arose from the medical philosophy of the day…eugenics…and from doctors themselves. It also required a 3 doctor panel to pass final judgment.

[Aspidistra]

@John_Mace

Depends. In your hypothetical, is there a generally recognized conventional treatment for what ails the child? And is the child in great pain, and being taken off treatment for the pain in order to be given the non-conventional treatment? Homeopathy doesn’t involve acid baths, so I’m ignoring that part of your hypothetical. If you want your hypothetical to apply to this case, you need to eliminate the acid bath. That does not inform us of what should be done here.

The acid bath is in, because it’s a “treatment” that would cause him suffering, and not help. Which is exactly what the doctors are saying about the experimental treatment in this case - it will cause him suffering and not help.

There is no generally recognised conventional treatment in my hypothetical, because there is no generally recognised conventional treatment for what ails Charlie in the actual case

[clairobscur]

@madsircool

The key word here is needless. As long as there is a >0% chance of positive treatment and the parents are willing to fight for the life of their child the government should not intervene.

Nope. Because it’s not about the parent, it’s about the child. The government should intervene and does intervene to protect children from harmful decisions by their parents. This is such a case. What the parents want is entirely irrelevant.

Doctors might be intellectually smart but they occasionally lack in emotional intelligence.

Why do you say that? Because they ignore the feelings of the parents? They should. Their responsibility is towards the child, not the parents. And they don’t seem to lack compassion towards this kid, on the other hand.

[madsircool]

@clairobscur

Nope. Because it’s not about the parent, it’s about the child. The government should intervene and does intervene to protect children from harmful decisions by their parents. This is such a case. What the parents want is entirely irrelevant.

Why do you say that? Because they ignore the feelings of the parents? They should. Their responsibility is towards the child, not the parents. And they don’t seem to lack compassion towards this kid, on the other hand.

I would agree if the child had a 0% chance of survival. But as long as there is even a small chance that the child might live and parents who are willing to fight for him…

[Broomstick]

@CarnalK

Yes, many would say Nazi Germany was worst case scenario in a lot of ways. Not sure you can call it a slippery slope though since Hitler’s order to “euthanize” mental patients kind of started near the bottom of the slope already.

The Aktion T4 situation should be seen in the context of the eugenics movement of the early 20th Century - although other nations didn’t adopt the same practices there certainly were advocates of it in both Europe and North America. In North America is manifested more with involuntary sterilization (which my spouse was a victim of) and individual actions (one of my spouse’s uncles offered to take the baby and drown him when it was revealed he had a birth defect, which obviously didn’t happen in that case but disabled children “disappearing” is a known phenomena).

Yes, Aktion T4 is an extreme example, but that’s sort of the point - the extreme example DID happen. It’s not a hypothetical, it’s history.

[somepumpkin]

@madsircool

I would agree if the child had a 0% chance of survival. But as long as there is even a small chance that the child might live and parents who are willing to fight for him…

For certain definitions of live or all definitions?

[madsircool]

@somepumpkin

For certain definitions of live or all definitions?

Its obvious but the taking of a life is a final action that can’t be reversed. It should only be chosen as a last resort. The kid might only have a one in a million chance but what if he is that one?

[clairobscur]

@madsircool

I would agree if the child had a 0% chance of survival. But as long as there is even a small chance that the child might live and parents who are willing to fight for him…

First, apparently, the chance of survival seem to be extraordinarily close to 0%. In fact, nobody at all seem to think the baby can recover, including the team proposing the treatment.

Second, would you want this to apply to yourself? Being left to suffer because there’s a 0.00005% of recovery and some other person doesn’t want you to die?
The parents might do the fighting, but it’s the child who does the suffering. Once again, his interests trump theirs.

[clairobscur]

@madsircool

Its obvious but the taking of a life is a final action that can’t be reversed. It should only be chosen as a last resort. The kid might only have a one in a million chance but what if he is that one?

How much suffering would you personnally take for one chance in a million to survive longer?