Schools Ponder Role As Child Nears Death

[fierceawakening]

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

Comments

[nightengalesknd]

As usual, I see multiple sides of this one

[fierceawakening]

I don't so much think there aren't multiple sides as I find myself really troubled by the way this is presented. It's not so much that I think "save Katie at all costs!" as that I worry about what's being hidden and what's being ignored.

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

[nightengalesknd]

As far as the kiddies in the NICU, I'm OK

[fierceawakening]

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.

*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

[dashingdeviant]

It really bothers me that they buried the fact that Katie can communicate in really effective ways - the whole article seems to be written in a way that totally strips her of her personhood

[fierceawakening]

YES. THAT.

[nightengalesknd]

I'm not arguing with you. I really am not. I agree about the article stripping Katie of her personhood. And I agree about the horrible comments to the article. And I am a HUGE proponent of self-determination. Huge. You should see the rampages I go on at work in the name of informed consent

[fierceawakening]

Yeah. I'm not totally convinced there should be *no DNR* myself. I just... the whole way this is presented makes me profoundly uneasy. And I keep coming back to: why not wait until she's on the respirator and in that classic, famous bioethics situation: Do We Pull The Plug?

It may be very similar, such that I'm drawing a distinction without a difference. But there's something sinister to me about what I read as "we won't even try", rather than pulling a plug, which I read as "we did all we could, and the decision is whether more of this is a good life."

And I don't mean when I said I'm worried about the way doctors' duties are being said to need "changing" that I think saving life should be a doc's only or even highest priority. I'm quite aware that a doctor's decision making is much more complex than that. I just worry when it's presented as "we need to replace this old model" and not even stated what the new model might look like. Bioethics issues are just too important to leave it at that, IMO.

[wrin]

All I can say is having seen resuscitation first-hand, it's horrifying.

And when you consider it succeeds between 5-10% of the time, when begun IN THE HOSPITAL, things get clearer. Especially when you know the odds of successful resuscitation are even lower when begun in the community.

Then there's the after-recovery -- which, for this girl, would likely result in tracheostomy and months in hospital and a difficult wean from the ventilator, something her mother's probably had to watch already -- which is horrifying on its own.

I don't know I'd want it done to myself, as a reasonably healthy human being. For a little girl whose best pleasure is school... when a DNR guarantees months in a hospital, being poked with needles, away from school, IF she survives the initial, bloody, bone-breaking rescue efforts...

... I can see where DNRs like that come from.

[nightengalesknd]

Just peeked over at your journal.

I'm a pediatrics resident when I'm not being a person with a disability. Actually I try to do both at once with varying degrees of success!

Anyway if you wanna talk med school as a non-trad aged grad or medicine in general, let me know. I love finding other medical people in LJ-land!

[wrin]

I'd love this.

[nightengalesknd]

I've added you. Large hunks of my LJ are about med school. In theory large hunks should start being about residency but I've been a little busy and a little tired. . . the NICU swallowed me whole.

Am I reading correctly that you're an RT? I didn't know much about the field until I got to the NICU and had a couple of RTs get me and the babies through the night a few times.

[octogalore]

"it sounds likely her mother has watched this happen already, and is unwilling to accept that should her child not be a DNR, it's likely her daughter will die without her, in the hands of strangers"

Neither this, nor the difficulty of rescuscitation, explain why no mention has been made (in anything I've seen) of why Katie's opinion wasn't sought. The chance to undergo hardships in order to live, understanding the risk of dying during that attempt without parents nearby, seems squarely in Katie's domain to decide. Why was this decision taken away? No attempt to justify the decision clarifies this central issue.

[wrin]

I think the reason that the article didn't cover this was likely a result of limited space and preferred sensationalism on the part of the reporter. I think were you to sit down and have coffee with Katie's mom, the more complex issue would unfold.

choking on what, exactly?

[thegimpparade]

First, Trin, you are rocking this story and comments all over the place.

But I keep thinking -- what exactly is it that Katie is choking on? Saliva? Are there seizures that make her stop breathing or is it saliva in her windpipe? Because saliva dripping in the wrong pipe is an issue that can and is addressed for many people with many different issues, right? All of us get more gunk in our lungs when our sinuses drain. Some of us have bigger issues clearing it out and use a variety of techniques or assistive equipment.

If Katie is choking on saliva and the response is, "well, what happens, happens, don't resuscitate" that seems to me an incredibly, hugely ableist response to a problem that may not be minor, but is also not rare or unsolvable.

Re: choking on what, exactly?

[fierceawakening]

If Katie is choking on saliva and the response is, "well, what happens, happens, don't resuscitate" that seems to me an incredibly, hugely ableist response to a problem that may not be minor, but is also not rare or unsolvable.

Exactly.