Should the Government or the Patient Decide What is Medically Necessary

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And it is unfair to compare the child of a former senator to some kid from the rust belt whose parents have to work multiple part time jobs just to pay the bills.
 
Hmm…well she isn’t the oldest person with T18. But it doesn’t seem a coincidence that ALL of the older people with T18 are from the U.S.
 
You don’t need to be rich or a Senator here to have an older child with T18. Thats simply not true.
 
To be fair most UK babies with that diagnosis are aborted and I imagine that it is similar in other European countries. The NHS does still treat those born with the condition, obviously every case presents differently and some will live longer than others.
 
Yes it does prevent “death”.

This is where the brain death discussion becomes a problem.

And we are terrible at managing pain. It’s occasionally impossible - hence the opioid crisis.
 
Monica83 said:
Even on hospice, we do not take away the interventions like oxygen if that is what helps them breathe comfortably and the ventilator was what helped Alfie breathe comfortably. He died because he could no longer breathe comfortably and he was probably snowed with medication on top of that which slowed his respiration even more.
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No, the vent did not make him comfortable. Good grief.

The vent kept him oxygenated because he could not do that adequately on his own. It didn’t help him “breathe comfortably”. :woman_facepalming:t3:

There is a massive difference in supportive oxygen via nasal cannula or even mask and full mechanical ventilation. The two are not interchangeable.
 
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Death(including loss of heartbeat) can still occur despite artificial respiration. But its quite clear he was still alive 5 days after they removed the vent and he could still breathe and had a heart beat…although struggling.
 
Yes, the vent made him comfortable. He did not have to struggle. I’m not interested in hastening people’s death by taking away their bodily comfort. If their underlying condition kills them so be it, but its just cruel to make a 2 year old struggle for breath against his parent’s wishes.
 
Yes, that is true.

The “struggling” is evidence that the vent was doing most of the work. From hospice, you ought to know that if the heart is strong, death can be slow.

The last part isn’t for us to decide. Continued care was futile. A care decision was made.

It could be said it’s equally cruel to keep a dying person on a vent, while pumping him full of meds used just to keep him in some semblance of comfort that we can’t even really measure - or ascertain that we’re actually maintaining.
 
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Monica83 said:
the ventilator was what helped Alfie breathe comfortably.
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What??? Ventilators don’t help you breathe, they do the breathing for you and they aren’t comfortable. Maybe you mean supportive oxygen through a nasal cannula/BiPap mask?
 
Ok. I get that they do the breathing for them. I worded it poorly. The point is it DID allow him comfort from the side effects of his underlying illness and pain can be assessed and managed in unresponsive patients. I trust anestheisiologists know how to assess and treat those patients.
 
No, the vent did NOT make him comfortable. That’s not even plausible.

How many post-vent patients have you talked with or cared for? There’s a reason “bucking the vent” is a problem. How many tracheal vented patients (think Christopher Reeve, though not all are quadraplegics) have you cared for and spoken with? They’re not comfy in the least.

The vent breathed for him. It kept him oxygenated.

It is not a peaceful or comfortable apparatus.
 
Monica83 said:
Ok. I get that they do the breathing for them. I worded it poorly. The point is it DID allow him comfort from the side effects of his underlying illness and pain can be assessed and managed in unresponsive patients. I trust anestheisiologists know how to assess and treat those patients.
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Anesthesiologists don’t manage chronic pain.

The vent is not a source of comfort.

His problems weren’t “side effects”. They were signs and symptoms of what was wrong with him.
 
I know they are not comfortable for the people with trach tubes(which Alfie did not have) that are alert and oriented on them(especially when they try to talk, which Alfie did not do), but I kinda doubt the alert and oriented ones are on the same dose/weight of pain medication as Alfie was too. Any discomfort from his ventilation would easily be taken care of.
 
So having a tube rammed down your throat and having a machine force your lungs to expand and contract is comfortable.

Right.

As I said, based on what I’ve been told by people who have lived through periods of venting, it is anything but.
 
Monica83 said:
I know they are not comfortable for the people with trach tubes(which Alfie did not have) that are alert and oriented on them(especially when they try to talk, which Alfie did not do), but I kinda doubt the alert and oriented ones are on the same dose/weight of pain medication as Alfie was too. Any discomfort from his ventilation would easily be taken care of.
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With all due respect, you have absolutely no idea of what you’re talking about here.

You’re way off on this.

We cannot certify the comfort of those unable to respond. We don’t know enough to know. Brain stem activity does not mean you have reflexes. It also doesn’t mean you’ll actively respond to pain - but there has been evidence that it might still be experienced.

We have no idea.

We also don’t know if his pain was controlled, if it could be controlled, or how it was being managed. There are as many ways to do this as there are patients, and as I commented up thread, we’re terrible managers of pain. Modern pain meds aren’t that fantastic. With him being so young, the options are limited even further.
 
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Mmmkay Pup7. I think we’ve reached the end of the line here because its not like he wouldn’t be getting the same kind of pain management while suffocating to death as he would while being ventilated. This is just pointless…
 
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It’s only pointless because you’re not understanding how this all works. You literally just don’t know. You’ve never managed dying patients as the primary RN, you’ve never worked with pain meds, you’ve never been in ICU or progressive care as the managing nurse in charge of the patient.

So the attempt at condescension fails.
 
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