Schools Ponder Role As Child Nears Death
from BFP, Bint, MissCripChick, and others:
Schools Ponder Role As Child Nears Death
As the school bus rolled to a stop outside her Lake County home, Beth Jones adjusted the bright yellow document protruding from the pouch of her daughter's wheelchair, making sure it was clearly visible.
In bold letters it warned, "Do Not Resuscitate."
The DNR ( Read more... )
Schools Ponder Role As Child Nears Death
As the school bus rolled to a stop outside her Lake County home, Beth Jones adjusted the bright yellow document protruding from the pouch of her daughter's wheelchair, making sure it was clearly visible.
In bold letters it warned, "Do Not Resuscitate."
The DNR ( Read more... )
Is it worth noting as I read just your excerpts I assumed she had begun life as a typically developing child and had developed some new terminal illness. No, it's just another card-carrying member of the CP club, although again CP is never mentioned in the article.
The thing about doctors and saving lives, well sometimes our job is to save lives. Sometimes it is to deal with the fact that a life is unsavable. And sometimes it is the stickier middle ground, where a life could be saved for the short term, meaning continued existance in the hospital on the vent.
Interestingly, the doctors I have been working with recently are much less about the saving lives at all costs than their historical brethern. In fact more then once the quesiton has come up, "why are we doing this to this child?" in terms of trying to help keep a sick little baby going, and I am the one answering, "well, because that's what the parents want right now?"
And yet if the parents wanted something different, I wouldn't necessariliy disagree. I'll post more about this when I have the time and spoons, but in the past month in our NICU we lost a 24 weeker on my watch, after doing everything we could. We sent two other babies home with hospice, one of whom is doing well and the other died shortly after arrival home. We have a fourth on the vent in the hospital who may never be able to come off a vent - and upon my querey, I learned have no home ventalator capability in my area.
Another factor is that this child is seven. CP aside, ablity or inability to comprehend aside, most seven year olds have a sketchy understanding of death at best. This isn't to say that the subject shouldn't be broached, of course, just that in the case of any seven year old, the parents are going to have to be the ones making the decisions.
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I'll post more about this when I have the time and spoons, but in the past month in our NICU we lost a 24 weeker on my watch, after doing everything we could. We sent two other babies home with hospice, one of whom is doing well and the other died shortly after arrival home. We have a fourth on the vent in the hospital who may never be able to come off a vent - and upon my querey, I learned have no home ventalator capability in my area.
Ooof. I'm sorry. *hugs if you would like them*
Another factor is that this child is seven. CP aside, ablity or inability to comprehend aside, most seven year olds have a sketchy understanding of death at best. This isn't to say that the subject shouldn't be broached, of course, just that in the case of any seven year old, the parents are going to have to be the ones making the decisions.
Yes, of course. I'm just wondering: is she dying now? Is she unlikely to live to ten, twelve, fourteen, when she could be asked? I can't tell what her choking fits are from or why they are worsening, or if that means she is in fact going to die. It sounds like it, but the article hid so many of the facts that I'm... concerned, let's say.
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The 24 weeker had about a 10% chance at the outset. He came out and tried to breathe and seemed to want to make a go at life, so we helped him out as much as we could for as long as we could. And then there just wasn't anything we could do, so we called the mom over from L+D and she held him and we took pictures of the two of them together. And we called her parents (she was very young) and they came and were with her.
And I was OK with all of that. OK with the fact that we - he and the medical people - tried and OK that we failed. Sad but OK.
The babies who were sent home with hospice - that was what the parents wanted and in each case I believe it was an informed decision. And I'm OK with that also.
I'm not OK with the fact that we can't do home ventalation here. We live in the mountains and patients can be 2-3 hours from care. And we can't provide 24 hour nursing. There are no resources. I don't know the parents of this child but I gather from conversations on rounds they would like to take her home. I don't think I will ever be OK with the idea that there is something that is medically possible, desired by the patient or family, and logistically infeasible. And I don't want to ever be OK with that, honestly.
I tend not to think of CP as a terminal condition, for obvious reasons. But the truth is, there are some people with severe CP who have accompaning difficulty with swallowing and severe reflux. Anecdotally, this difficulty can be progressive. And people who have these problems can be at risk for choking and aspiration and then aspiration pneumonia. I've cared for kids hospitalized with aspiration pneumonia. Sometimes a G-tube and reflux surgery can lesson these risks. I have a darling little patient who just had reflux surgery and a G-tube in the hopes of preventing some of his recurrant respiratory infections that get him hospitalized over and over.
Is being at high risk for severe respiratory infections that may require mechanical ventalation in the hospital, "dying"? Not sure. Is it more "dying" than the rest of us who are at minimal risk for this? Not sure about that one either. Could someone in such a situation be resucistated, spend 3 weeks in hosptial, go home and back to school and have another event in a month, and end up back in the hosptial for another 3 weeks? Sure. And repeat for 2, 5, 10 years. And each time, the chance of successful intubation and extubation becomes more and more iffy, as each time respiratory function has been compromised just a little bit.
I can see how a family would believe continuing this process indefinitely would not be in their child's best interest.
Another thought, and I'm not playing devils advocate here, really, just thinking things through. But I wonder if Katie, to the extent she is able to communicate, is the one who doesn't like beeping machines.
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*nods*
I tend not to think of CP as a terminal condition, for obvious reasons. But the truth is, there are some people with severe CP who have accompaning difficulty with swallowing and severe reflux. Anecdotally, this difficulty can be progressive. And people who have these problems can be at risk for choking and aspiration and then aspiration pneumonia
Thanks for telling me this. I had heard that some people have difficulty swallowing, and I figured this would cause higher risk of choking. But I had never heard that the problem would be progressive, so I was not sure what exactly they were saying about Katie here.
Could someone in such a situation be resucistated, spend 3 weeks in hosptial, go home and back to school and have another event in a month, and end up back in the hosptial for another 3 weeks? Sure. And repeat for 2, 5, 10 years. And each time, the chance of successful intubation and extubation becomes more and more iffy, as each time respiratory function has been compromised just a little bit.
That I also didn't know. It certainly sounded like that's what the article meant, but it didn't say this, so I really wasn't sure what was being said.
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1) there is a lot I don't know
2) there is a lot that other people don't know, even experts
3) there is a lot of disagrement out there
4) the questions that I feel are important aren't always or even often the ones research is trying to answer
5) some of the people who are the most knowledgeable scienticially have attitudes I find it hard to get past
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