When a kid is terminally ill how much say should a parent have in prolonging the life of the kid?

(and don’t judge. I usually don’t read Yahoo! News, as I think it’s got really shoddy journalism, but this case caught my eye)
Quite frankly I am HORRIFIED at this case. HORRIFIED that parents would keep a kid in a PVS alive. I mean the kid is in a persistant vegetative state! It really does seem like the parents are in denial about how profoundly the kid is affected. The doctors in Canada say that there’s no hope.
How much say should a parent in a case like this have for child life interventions? It’s a tough case…but I mean the kid is in a persistant vegetative state with a degenerative disease.
To me this would be like putting a trach, in a bedridden paitent with Alizheimer’s, so they don’t get pnumonia.

Depends on the age of the kid. In this case, I can’t really fault the parents – they already lost a child to a similiar illness. I can’t imagine what they’re dealing with, and they’re probably not very objective about it.

I wouldn’t make the same choice, but in the end, they should be the ones to make the final decision.

Provided they’re the ones paying for it, I agree.

Bolding mine, and quoted for emphasis.

This is a really hard question to answer. I’m actually on my way to a lecture on Ethics in Healthcare later today, so I may come back to the thread later to add more.

One thing I can say already is that the answer is so “it depends” that it’s impossible to form an *informed *opinion off a newspaper article. The healthcare providers have to take into account more than the immediate patient’s medical condition - in nursing, in this kind of case, especially with children, the whole family is “the patient”.

Is the family showing signs of Dysfunctional Grieving? Anticipatory Grieving? Interrupted Family Process? Role Strain? All of these are possible and even likely, and each one would suggest a different way of handling the situation.

From what little we have to go on so far, I’d have to say I’d suggest that the docs simply do the tracheostomy and let the kid die at home, if he makes it that far. It’s a fairly cheap and simple procedure, and can be done for less money and time than all this mucking about in court. The trach will help his family more than him, of course. But if he truly is in a PVS, it’s not exactly going to harm him, and it may help them. (You can’t argue it both ways - if we should take him off breathing support because “nobody’s home”, then you can’t argue he’s going to suffer more - remember, “nobody’s home”.) It appears that the parents are aware that the kid is terminal, and don’t expect the trach to save his life, just to give him the kind of death they want.


It doesn’t sound like the parents are in denial at all. They’re trying to extend the boy’s life by a few months. I think we can agree this is pointless from a certain perspective (he’s dying tragically young regardless) but evidently they want more time to say goodbye to him.

When you’re dealing with a 13-month-old child, they should have just about all the say.

They can’t really do that here in Texas. We have a somewhat controversial law that prevents the continuation of the situation in the OP.


Take a look at this series of articles. It’s long, but well worth reading, as it deals exactly with the subject under discussion here.

There’s probably no fixed answer as every circumstance is virtually unique. I would say the parents should have all of the say, so long as they are acting rationally. That doesn’t narrow it down much, but if a child is only seemingly alive because of machines, and it can be demonstrated their condition cannot improve, and a parent insists the child is recovering, it’s time for others to step in. The problems come from cases where it cannot be definitely established what the condition is, and future prospects are.

Right, that’s a much harder issue. And it also gets more complicated when a parent is doing something like asking for a treatment that is not medically recommended. I don’t think that’s the case here, but I don’t know what reason the hospital has given for turning down the request to do the tracheotomy.

That’s not quite what anyone’s saying though, is it?

My admittedly layman’s understanding is that PVS patients can sometimes feel pain, since that’s a minimal function of the basic brain stem that keeps them minimally alive. My understanding was that patients in a PVS are often taken off life support because there’s no hope of recovery or even improvement.

So it’s possible for him to suffer the pain of suffocation even though he’ll never recover from his degenerating neuro problem, whatever that is, exactly. (Tay-sach’s, maybe? It’s common(ish) in French-Canadian poplulations.)

That said, I don’t blame the hospital for wanting to withdraw treatment or going to court to preserve their right to withdraw treatment if they think that’s the medically correct thing to do. Nor do I blame the parents or the Church for using their money to keep the boy a live a few more months, provided he’s not suffering pain or seizures or some such.

Very good point. I mean it is a tough case. But the thing is. the Canadian docs said that he was in a PVS and conditions were deteriotating (sp?) Meaning death is coming VERY soon. I would think that a baby with a nereodegenerative disease would be VERY medically fragile. Not to mention one on the cusp of death. I doubt we have an expert on nereodegenderative infant/childhood disorders on the board, but…from what I’ve read and can remember, it seems like virtually ALL the nereodegenerative infant disorders (ie Tay Sachs, Batten’s, Hurler etc) cause things like seizures (and severe ones like Lenneux Gassault style ones)
Granted I do understand that the parents want time to say goodbye to the kid. That is understandable. But why the intervention right now? They knew that the baby had a nereodegenerative condition. Why didn’t they have the trach performed when he was more stable?

Here is a commentary on the case: http://www.newshounds.us/2011/03/16/martha_maccallum_fox_friends_promote_more_baby_joseph_lies.php

Not that I disagree, but that commentary is mostly about how Fox News sucks. :wink: This Vancouver Sun article gives a short explanation of why the hospital won’t do the tracheotomy:

I guess this isn’t unexpected but I didn’t want to assume: the doctors say they don’t want to do the procedure because it creates some risks in a patient who is this sick, and that the tracheotomy is not really in Joseph’s best interests. It’s in the best interest of his parents, who want him to die at home instead of in the hospital. It’s hard to disagree with them about that; the question is ‘who gets to make that decision?’ If they found someone else willing to do the traecheotomy - and it sounds like one other hospital in the U.S. said it would do it and then backed out after reviewing his records - I don’t really have a problem with it.

I am not an expert in the field by any stretch of the imagination, but my review of medical literature seems to reveal that, at this point, most doctors, including neurologists, are of the opinion that the vast majority of people in PVS do not feel pain. There is a small minority that think that a very very small minority of people in PVS may feel pain, to be sure. But when you look at treatment, most people in a PVS do not receive pain medication even when undergoing painful procedures or illnesses, so most clinicians, by their actions, agree that there’s no meaningful pain present. However, some palliative care nurses and doctors, will provide analgesic to the patient if the family *perceives *the patient to be in pain - for example, mistaking reflex grimacing for purposeful movement. Again, it’s not really treating the patient, it’s treating the family.
Here’s some more information, if you want to wade through it.

I’m not sure the pain would prevent me from suggesting the trach, honestly. Or the chances of pneumonia or infection. Frankly, the chances of pneumonia and infection are far greater on a ventilator than with a trach, so the argument from the doctor’s seems disingenuous to me - they *already *decided to risk pneumonia and infection. If they think he can feel pain, of course they should use the same pain medication for the trach insertion that anyone else gets. Of course his parents should be taught how to suction the trach, clean the trach and, if needed, perform chest physiotherapy. This teaching alone often helps parents feel more in control of and participants in their child’s medical care, which is an emotional release. But a tracheotomy is not a horrifically painful procedure, and I’d argue that it’s probably less painful (assuming the child can feel pain) than the sensations of smothering to death by the removal of a vent.

Unfortunately, while I was able to bring up the story in lecture yesterday, we didn’t have time to discuss it with the ethicist, so I can’t say what he would have said.
As for the idea that this is an example of the Canadian Death Panels - that’s ridiculous. These are doctors, nurses and ethicists from the hospital who meet to make these kind of recommendations based on medical need. Sometimes, they will go to court for a medical guardian if they believe the family isn’t making decisions in the best interest of the patient. We have the same exact model in the US. No one is trying to kill Aunt Mildred, but there is a need sometimes to discuss if maybe Aunt Mildred has suffered enough and will not benefit from any more needles stuck in her. I don’t always agree with their decisions, mind you, but that’s because these are sticky ethical wickets, not because the system is flawed.

You need to keep in mind, these very same doctors were willing with the previous child, but found that, for this child, it was not recommended. In the parents search for another hospital, willing to follow their wishes, most every hospital they approached, agreed with the decision of the London doctors. That says something, I think.

They were willing to transport him to his home on the ventilator, disconnecting him once home so they could have there wish to have him die there instead of hospital. No go, they were demanding a trache.

Of course, eventually they found a hospital willing, but it took several tries.

As this is unfolding here in my city, there has been much discussion, as you can imagine.

The side discussion strays into why they wouldn’t do the genetic testing in vitro to see if the child would be affected, having previously been through this experience? How many children should we be willing to hospitalize till they die? As many as they can have? And, as this is an immigrant family, that comes up to. Personally, I think this is all just static to the real issue.

It would seem that most of the hospitals approached agreed with the decision. That they found a priest to come and fetch him, and cover all the costs, doesn’t really sway me much.

Still I wish them nothing but peace, it’s a horrible situation all the way around.

I did wonder about that, although it sounds like their other child is healthy. I also think they’re being overoptimistic if they think he’s going to live another six months. If their daughter lived to age 9 and Joseph is this ill at age 1, it sounds like Joseph has a more aggressive case of whatever it is. She lived for six months after getting a trache and being disconnected from a respirator, but it doesn’t sound likely he would last that long.

Thanks much for this link! I’m not a medical professional but I enjoy reading medical articles. It’s a fascinating distinction that the nerves can transmit the pain signals but the part of the brain which receives those signals is shut down.

I was going to say that if I was a doctor, I’d probably give the child a healthy slug of morphine or some such to allay the family’s concerns about pain in removing the ventilator. It doesn’t sound like it would satisfy the family in this instance or really be necessary for the child, so that’s probably a waste of time.

I think the most important thing in the case is that the patient not suffer, even if the family isn’t ready to let him go.

I’d be interested to hear what your ethicist says, if he ever weighs in on the subject.

[QUOTEThese very same doctors were willing with the previous child, but found that, for this child, it was not recommended. In the parents search for another hospital, willing to follow their wishes, most every hospital they approached, agreed with the decision of the London doctors. That says something, I think.

They were willing to transport him to his home on the ventilator, disconnecting him once home so they could have there wish to have him die there instead of hospital. No go, they were demanding a trache.[/QUOTE]
Excellent excellent points. As I said, I think this is the story of extremely desperate parents, trying to grab onto any sliver of hope, no matter how tiny. I can understand wanting more time with Joseph, but at the same time, I also think that the parents don’t quite understand that Joseph is more affected then his sister was. That can happen in severe genetic degenerative conditons…It’s a tough tough case. But the Vancouver Sun article basicly reinforced my theory that the parents are VERY desperate.

Shinna, I wouldn’t quite say that. This is more …baby with an EXTREME PROFOUND disabilty vs. a kid who has a severe chronic disease like cancer or cystic fibrosis.
Even a kid with a profound disabilty can interact with their parents etc.