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Why can't the child die at home?


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http://www.vancouversun.com/health/Couple+appeal+bring+dying+baby+home+dismissed/4304482/story.html

 

 

"Although the couple has accepted their baby boy's inevitable death, they insisted that it occur peacefully at home and not by removing his breathing tube, which will cause him to choke since he can't swallow or breathe on his own. The parents asked for a tracheotomy, which would open up a direct airway through an incision in Joseph's trachea and make it possible to bring the baby home.

 

 

But doctors refused to perform the procedure, citing serious risks of infection, pneumonia and other possible complications."

 

 

 

I'm sorry, but that reasoning makes no sense whatsoever to me: He is going to die as soon as we remove the breathing tube, but we don't want to give him a tracheotomy because he might get an infection. Why not err on the side of mercy toward the grieving parents? Why is there no value in a peaceful death or dying at home?

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That is just awful. I'm guessing that at the heart of this, the issue is money. The child has a feeding tube, and the doctors may be concerned that the he may linger for a long time and incur more medical expenses.

 

My first thought was money, too, but then I thought that a trach. couldn't cost more than being on a ventilator. But I was thinking from what I read that he would not live very long once the trach. was done.

 

But your thoughts--that he might actually be able to live--would make the money aspect kick in.

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I just read the article more closely. It sounds like the judge agreed with the ethics board about "best interests" for the child. I totally do NOT agree that ethics panels should be able to decide best interests in all situations, but I do not believe that they are in the business of going out and killing children. Children dying is an ugly, hard business all the way around, and to work in pallitive care is a hard, hard thing.

 

The brainstem issue is close to my heart, as that is where my daughter's brain tumor was located. If the brainstem function is no longer intact, he most likely cannot initiate a breath on his own (which is why he is on a respirator). The article also said that he was in a persistent vegetative state, meaning that they were able to verify the lack of brainwave action. The child is also being tube fed, most likely in a manner bypassing his stomach. The only thing still going at this point on his own is his heart.

 

If his body is still reflexively reacting to pain, I can see why they would want to avoid a trach. They are very uncomfortable to live with in the healing process. If they remove the breathing tube, they will most likely administer morphine to stop the sensation of feeling like he's suffocating (something they alluded to in the article). They believe that they are choosing a more compassionate death for the child.

 

I'm grateful that we were able to make end of life decisions for our child, and that hospice went to bat for us a couple of times (her neuro-onc in DC and her local onc disagreed with each other about providing some end of life services, but the local onc was acting as her doc in hospice). I have seen parents, though, who were so blinded in their grief that they put their kids through a lot of trauma at end-of-life. I think once you see both sides of the coin, you realize that there is no easy way through the decisions you have to make.

 

I don't think this is about money at all.

 

Ok, I don't know about a trach and it sounds like you do. I thought it was a fairly common procedure, so can see that there might be two sides of the issue. Honestly, both sides agree that the child is going to die; both sides want to avert physical suffering for the child. The parents have a more holistic end in mind and what to them seems like a more peaceful, natural way to die. It doesn't sound like it will affect the child much either way, if there is morphine administered to deal with the pain. So if it's a judgment call, why couldn't the parents make it? This isn't like parents denying a child a necessary medical treatment or the parents insisting on state-paid life support for years. It seems like a fairly minor issue in the big picture. Why should the state assert power here?

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Why should the state assert power here?

It's a major surgical procedure and the doctors don't feel comfortable doing it. Shouldn't they be the ones who get to decide?

 

It would really be a problem if the courts started to order doctors to do a procedure they don't want to do.

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But it's not really about letting the Dr.s refuse a procedure if they're not even letting them move him for a second opinion. If they don't think it's best and don't want to do it, fine. But why does that mean they have complete power to keep the child there?

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I asked dd. She's only a paramedic extern, but she's done trachs in the field and assisted with them in the ER. So, I thought she might know something.

 

This is what she said, "Trachs are very painful. We've transported end of life patients with trachs and it's always a guessing game with the pain meds...if they can't say how much pain they feel, we don't want to under medicate for their pain, but we are held responsible if we over medicate for their condition and it causes a problem. Hospice nurses actually have more leeway - ie. legal protection - for this than medical we do or even Er personnel. We have to be very, very careful and yet give the very best patient care we can, so it's an bad situation."

 

"If we trach a person in the field, they get a big dose of pain meds in the ER before they come too or if they show any response to pain in the rig, they get pain meds. It's a painful procedure and even after the pain subsides, there is a high level of residual discomfort. If removing his tube and sedating him will cause less discomfort than the trach, then I can understand the doctor's point of view and his conscience on the matter. End of Life matters stink, period and all palatable options are just an attempt to choose the lesser of two evils. That said, I'm a paramedic extern studying for my final exams, not a doctor or an RN. So, my opinion is limited to my experience. So don't quote me on anything."

 

:001_smile: She doesn't know that I just quoted her.

 

I guess after talking to her, I just feel awful for everybody involved in that situation, but could never form an opinion as to who is the most "right" under the circumstances. I don't like parents losing their rights to make decisions for their children. I also don't think that a medical professional should be forced to do something that violates their own conscience and so, yeah.....end of life cr*p is just that. CR*PPY!

 

Faith

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Maybe the doctors want to minimize his pain? Putting in a trach is going to be painful. Infection and pneumonia are painful. Even though parents have the right to make medical decisions, doctors have the right to refuse on ethical grounds. If I were the child's doctor, I would refuse.

 

:iagree:, probably.

 

One of the worst part about being an intern and resident was having to do things to patients I was opposed to. I cannot tell you how awful it feels to hurt someone when you don't see the point. But, if you trawl far enough, you can find a doc willing to do just about anything.

 

I also am acutely aware of how complex and individual patient care is, and would not judge this situation unless right there. It is too easy to "spin" things one way or another, in an emotional fashion.

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Also, I just noted on the update that there is the possibility the child may be moved to Children's in Detroit. So, was the child in a pediatric facility prior to this? There is a huge difference in care that can be provided and level of expertise between a big hospital with a pediatric ward or a pediatric ICU, vs. a true Children's Hospital. Medical facilities totally dedicated to the medical intracacies of pediatrics can sometimes bring a level of care and subject matter expertise to the table that other doctors don't have. It's possible that Children's may be able to do the trach or some other procedure for the boy, or handle his pain more efficiently, etc. than the facility he was at. Seriously, there is just a huge whale of a difference in pediatric patient knowledge between say Hurley Medical Center in Flint, Mi. and Wayne State University Children's Hospital. From there you can then rank children's facilities with Children's in Cincinnati being an even better institution, in my opinion, than Detroit and I'm pretty certain there are those that would say St. Jude's is even better!

 

I hope the parents will get an answer they can live with at Wayne State. Seriously, it's just an awful situation for the boy, the parents, and every medical professional who must treat him.

 

Faith

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But it's not really about letting the Dr.s refuse a procedure if they're not even letting them move him for a second opinion. If they don't think it's best and don't want to do it, fine. But why does that mean they have complete power to keep the child there?

I don't see anywhere that they've refused to transfer him.

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:iagree:, probably.

 

One of the worst part about being an intern and resident was having to do things to patients I was opposed to. I cannot tell you how awful it feels to hurt someone when you don't see the point. But, if you trawl far enough, you can find a doc willing to do just about anything.

 

I also am acutely aware of how complex and individual patient care is, and would not judge this situation unless right there. It is too easy to "spin" things one way or another, in an emotional fashion.

 

I should have said, I might not do it. Without being in the middle of it, you're right, it's impossible to know.

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I don't see anywhere that they've refused to transfer him.

 

Actually, according to this they have:

 

"But hospital officials now say that they may go ahead with removing Joseph’s life support even if the Michigan hospital or another agrees to the transfer. Because the parents refused to have Joseph’s life support removed Monday, the hospital has asked the Office of the Public Guardian to assume decision-making power. That office is expected to take a couple days, but could order his life support removed at any point."

 

http://www.lifesitenews.com/news/baby-josephs-parents-denied-private-visitations

 

Just posted on the FB page :(

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The article I read said the couple lost a daughter years ago to the same affliction. It said they had a trach performed on her and brought her home and cared for her until she died. If they've already been through it once I don't see why the hospital won't let them do it again. This family has already been through so much it seems crazy not to do this for them now.

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I guess we posted at the same time.

Yes, and the older child lived for 6 mos. A trach is a fairly minor procedure, this is awful.

 

Why is it that they are saying the child is in a persistent vegetative state, but are also arguing that performing the procedure would cause the child pain? You can't have it both ways. Does this child feel pain or not?

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Also, I just noted on the update that there is the possibility the child may be moved to Children's in Detroit. So, was the child in a pediatric facility prior to this? There is a huge difference in care that can be provided and level of expertise between a big hospital with a pediatric ward or a pediatric ICU, vs. a true Children's Hospital. Medical facilities totally dedicated to the medical intracacies of pediatrics can sometimes bring a level of care and subject matter expertise to the table that other doctors don't have. It's possible that Children's may be able to do the trach or some other procedure for the boy, or handle his pain more efficiently, etc. than the facility he was at. Seriously, there is just a huge whale of a difference in pediatric patient knowledge between say Hurley Medical Center in Flint, Mi. and Wayne State University Children's Hospital. From there you can then rank children's facilities with Children's in Cincinnati being an even better institution, in my opinion, than Detroit and I'm pretty certain there are those that would say St. Jude's is even better!

 

 

I hope the parents will get an answer they can live with at Wayne State. Seriously, it's just an awful situation for the boy, the parents, and every medical professional who must treat him.

Faith

Actually Joseph is in the area children's hospital. The hospital in Detroit would actually be closer to the family so they could be with him more. It's only a few minutes across the bridge as opposed to a 2 hour drive. However, Michigan has to be willing to receive him.

 

 

I'm sick for the parents and sick for the persistence of the medical care. I did my student placement at that hospital and found some attitudes to end of life disturbing. That said, I've seen very ill babies with long term needs well cared for on the ward where Joseph would be.

Edited by Punks in Ontario
Quotes in wrong place.
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Sweet Bean, my understanding from dd, is that in a persistent vegetative state, the pain receptors of the brain can still feel pain though the person is not able to respond. The patient can still feel pain (there's an MRI or something that can detect the pain receptors and determine if the person is registering pain) even if they their brain is not reacting to other stimuli. So, if his pain receptors are still reactive, he would need pain medication management for the procedure and afterward.

 

I don't really like the idea that the authorities may step in and make that decision for them.

 

If a move to Wayne State will allow them to spend more time with their child, then it sounds very wise to me. It gets the government who is paying the medical bill out of the decision (which to me is a conflict of interest) and brings in the opinion of a possibly more objective medical staff. Wayne State doesn't have to answer to the Canadian health system nor does anyone's medical license hang in the balance if they tick off the wrong people. To me, it seems that an awful lot of potential "conflict of interest" would be remove from the fray while allowing the parents to spend more time with their son. So, I hope it happens before something legal is done in Canada.

 

As I said before, end of life decisions are cr*ppy, there just aren't any good choices...always trying to figure out the lesser of two evils.

 

Faith

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Looks like the hospital has just agreed to let the baby die at home. They will not perform the trach and the MI hospital has declined to treat him. Parents are trying to get the MI hospital to review the denial.

 

My heart aches for them. However, I feel that if two hospitals have independently decided that its not in the baby's best interest to give him a trach, then this is the best solution for everyone.

 

I haven't figured out how to do links from my Mac but its one of the lead stories on Fox News.

 

Christine

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Also wanted to post this video:

The hospital constantly says the baby is in a vegetative state and has no reflexes whatsoever. According to the parents, the hospital won't let them take video of the baby (?) so someone snuck this video on their phone to show how he DOES have reflexes and some movement.

 

 

 

In case link doesn't work: here's the website, second video

http://www.savebabyjoseph.com/

Edited by snipsnsnailsx5
sorry saw my typos!
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So...in Canada you don't have the right to remove your child from a hospital and make health care decisions? Really - that's what's going on up there with the health care system?

 

Wow. That's all I can say. Wow.

 

So, if a USian parent says their child with completely curable pneumonia will be taken home and treated without antibiotics, say coining, the USian parent will be allowed to take the three year old home? Indeed there are limits even here in the US on parent's power over children. They are not dogs, and the State, in both the US and Canada and for all I know all civilized nations feel a vested interest in protecting the individual.

 

Also, "vegetative state" is not "sitting like a vegetable on the kitchen counter". It has to do with brain function. I am not a neurologist, but did all the reflexes looking for higher cortical function back in my training days. The activities of the child in the view prove only that it has receptors in the skin and a loop to and from the spinal cord. I saw nothing that indicated even a brainstem functioning, and doubt the family has the knowledge to perform those tests. I am also betting they have been demonstrated to the family (I have certainly done many of them in front of the adult children of an elderly stroke victim to help them make "end of life decisions".)

 

Poor little mite, but there is nothing evil and Canadian going on here, and those of us here who spend our days in the rational light of day may not know the strange ways some people cope. (I'll give a small example: a man dying of colon cancer with mets to the lung who is starving but can't take solid food in. He won't take anything with artificial flavors or colors (e.g. Ensure) because it is "unhealthy"). We are not privvy to what this family is doing or saying about what they think is going on. What their motivation is a matter of privacy, and "the hospital", by being terse and minimalistic about it, is protecting the privacy of the patient and the family. That doesn't mean a whole huge team has not spent hours agonizing over it. It would be easier to cut open the poor baby's throat and ship it home. They ain't keeping it because of laziness or ease.

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I don't think the concern is laziness or ease, and I don't think anyone is assuming that Canadians are evil in the least (although I will say that in my opinion, the doctors who are leading this team, the hospital administration, and the judges involved, I might not be so generous towards). The concern is that parents, who are perfectly aware of the situation (considering that they have been through it once before) are opting to take a different route of care than the doctors prescribe. In this case, all roads lead to the baby dying, and the parents are fully aware of that. Should or should not the parent's wishes for their child's final days/weeks/months trump the doctor's protocols (who, from what I understand, are more worried about infection in the trach... doesn't make sense to me, considering the child's about to die anyway)? That's a personal opinion that will vary person to person, but it is also a question for society, considering how the courts in Canada have been involved, and the current political state of healthcare in the US. Whose rights and opinions of treatment are more important? And just what is the motive behind keeping the child in the hospital, or refusing a trach? Is it a legitimate motive, or is it one, as many are concerned about, motivated mostly by power?

 

I don't expect these questions to be answered here, obviously, but the point is, that they will need to be answered, on a whole-society level, at some point.

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Why not err on the side of mercy toward the grieving parents? Why is there no value in a peaceful death or dying at home?

 

Is it possible that they are erring on the side of mercy towards a dying child? Why do we assume that death at home will be peaceful? Is it possible that by keeping the child in hospital they are able to offer palliative care, while an infection might conceivable cause pain to the child in his last days?

 

I certainly understand the parents' desire to take their child home to die, but I am always upset by the knee-jerk reaction which suggests that the recommendations of the medical fraternity must stem from a desire to do something other than the best for their patient, simply because it is in conflict with the desires of the parents.

 

Nikki

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I certainly understand the parents' desire to take their child home to die, but I am always upset by the knee-jerk reaction which suggests that the recommendations of the medical fraternity must stem from a desire to do something other than the best for their patient, simply because it is in conflict with the desires of the parents.

 

Nikki

 

But, you're assuming that the recommendations of the medical establishment must stem from a concern for the best interest of the patient, and that's not always true, either. So, when two parties have different opinions on the best interest of the patient... who gets to decide? The doctors and government, or the parents?

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Is it possible that they are erring on the side of mercy towards a dying child? Why do we assume that death at home will be peaceful? Is it possible that by keeping the child in hospital they are able to offer palliative care, while an infection might conceivable cause pain to the child in his last days?

 

I certainly understand the parents' desire to take their child home to die, but I am always upset by the knee-jerk reaction which suggests that the recommendations of the medical fraternity must stem from a desire to do something other than the best for their patient, simply because it is in conflict with the desires of the parents.

 

Nikki

 

But the parents have already been through this once before. In that case they were allowed to take their child home after a trach had been performed. They cared for her for six months (I think the article said) before she died. I don't understand why it can't be done again and why the parents don't have more of a voice.

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I And just what is the motive behind keeping the child in the hospital, or refusing a trach? Is it a legitimate motive, or is it one, as many are concerned about, motivated mostly by power?

 

 

 

http://en.wikipedia.org/wiki/Primum_non_nocere

 

Traches are nasty and are invasive. I wouldn't do it to a dog, why should I do it to a child. Docs are not required to do procedures because someone wishes it, especially on a third party. First, do no harm. But, as I said earlier, if you trawl far enough you can usually find someone willing to do all kinds of things.

 

If it were my child, I would extubate it and hold it in my arms. And, as I said, we don't know the ins and outs of what this family is saying. The hospital cannot publicize it. The family can put up YouTubes for the (pardon, I am just being factual here) uneducated to see that the baby moves, which proves nothing, actually, but the hospital cannot make everything going on clear, because of privacy issues. I read stories in the paper about the hospital where I work, and I just shake my head. "If only they knew", I think.

 

The Canadian part was in response to the idea that something bad was going on Canadian health care vis a vis this case.

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http://en.wikipedia.org/wiki/Primum_non_nocere

 

Traches are nasty and are invasive. I wouldn't do it to a dog, why should I do it to a child. Docs are not required to do procedures because someone wishes it, especially on a third party. First, do no harm. But, as I said earlier, if you trawl far enough you can usually find someone willing to do all kinds of things.

 

If it were my child, I would extubate it and hold it in my arms. And, as I said, we don't know the ins and outs of what this family is saying. The hospital cannot publicize it. The family can put up YouTubes for the (pardon, I am just being factual here) uneducated to see that the baby moves, which proves nothing, actually, but the hospital cannot make everything going on clear, because of privacy issues. I read stories in the paper about the hospital where I work, and I just shake my head. "If only they knew", I think.

 

The Canadian part was in response to the idea that something bad was going on Canadian health care vis a vis this case.

 

Wait a minute, first do no harm, but killing the child against his parents wishes to let him die naturally is following the Hippocratic Oath? I'm sorry, I just can't see that. That's where the boggle is, though. If you're a doctor, at what point do you stop and say that doing no harm and following ethics might mean doing what goes against your personal feelings on a case like this? You might not want a trach done on your child, but you're not the parent of this child. Do you, as a doctor, have the right to make that moral decision for a family? In my opinion, no, and that's where doctors get their reputation for having god-complexes.

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So...in Canada you don't have the right to remove your child from a hospital and make health care decisions? Really - that's what's going on up there with the health care system?

 

Wow. That's all I can say. Wow.

 

At the risk of turning this thread into another topic altogether. These things happen in the USA as well. The following is an example of the courts interveining not the doctors refusing to do the procedure and this is not the only one I have seen in the last few years, it is just the most recent.

 

http://www.myfoxphilly.com/dpp/good_day_philadelphia/021011-judge-orders-surgery-for-teen-wrestler

 

 

Back to the Canadian example, if many doctors have looked at the situation with Joseph and come to the same conclusion then I am inclined to defend their right as professionals to refuse to do a procedure they feel is painful and unneccessary. It seems that the child will be going home (just not with the trach) so at least they will have some time at home with their child.

 

 

Having lived in both systems, I prefer the Canadian one. It looks like there are several Canadians that have posted already who feel the same way. It is a system that does not deserve the negative view it has from people in the US. This example is not a version of the dreaded death panel. This is a child that is dying tragically young and the story is of many peple trying to provide love and care as they process their own emotions and painful knowledge. These doctors get no pleasure or bonuses for holding these views or defending them. I doubt that the money issue has even come up.

 

Many have posted that End of Life decisions are never ideal, no matter what is finally decided. I agree. After working through school as a home health worker and doing some work in palliative care, I know, without a doubt, that these doctors are working with the numbers against them. It is sooo sad to hear of their pain, my hope is that between all of them they can find a solution that meets the needs of this suffering family.

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Do you, as a doctor, have the right to make that moral decision for a family?

 

I want an abortion, I want to have may face sewn up to look like a monster, does the doctor HAVE to do my wishes? Consent or refusal of treatment is not the same as a right to dictate treatment.

 

If a guardian or durable power of attorney wants docs to do something painful and useless to a patient, a doctor may refuse. If a family does these things on their own, they may lose guardianship. Of course, the patient can sue in return. I have personally seen, while in training, a doc whom I now consider the scum of the earth, order several horrid things for a patient who, while intubated, could nod and shake his head and make his wishes known, all because his wife was going to sue if he didn't. I, not that cardiologist, had to sit late in the night with him while he got a bleeding scan while he put his hands together and prayed to be let to die.

 

We don't know the ins and outs. The hospital can't tell us. They are not doing this lightly. I do know that this is not one power-hungry person, but a carefully considered, heavily consulted, overly examined situation (including a second hospital's eval of the situation), and something rings alarm bells about this family to a number of people who are just trying to do the best by this mute child.

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Yes on the bolded. A lot of folks don't realize that it's an entire team (in this case, teams) of people who view and review such cases....one Dr is not working in vac here.

 

That father is in pain...and denial. It's so heartbreaking.

 

He says he wants to bring the boy home to die, but in the Fox interview (and please dear heavens, I am trying to not be provocative about Fox' obvious political agenda here....) he says the hospital in the US made the boy better and he went home a normal 4 mos old baby. He's implying that CN drs (and Fox is encouraging him, which is cruel, imo) are withholding the treatement that would make the boy heathy.

 

He doesn't want the baby to die at home...he wants someone to cure the baby, which if the drs could do, they would do. He's angry and sad -- at the Drs, at himself, at God maybe, at the world... nothing he says or does can make his boy well. This is something nobody can control. That poor family. I can't even imagine their pain. I don't want to imagine their pain.

 

 

[quote name=kalanamak;2476199

 

We don't know the ins and outs. The hospital can't tell us. They are not doing this lightly. I do know that this is not one power-hungry person' date=' but a carefully considered, heavily consulted, overly examined[/b] situation (including a second hospital's eval of the situation), and something rings alarm bells about this family to a number of people who are just trying to do the best by this mute child.

Edited by LibraryLover
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Traches are nasty and are invasive.

Not really. They are pretty routinely done on patients who will be intubated for any amount of time.

 

Yes, this same procedure was done for this family’s older daughter, and she lived for another 6 mos. at home.

 

Did you watch the video that was connected to the earlier Fox news story? They interviewed two doctors in the U.S. with opposing view points on government controlled healthcare. Both physicians said they thought a trach was appropriate and didn't understand the hesitance to perform the procedure. The one who was pro government control thought this was a quirk of the Canadian system, rather than a sign of things to come. She said that wouldn't happen in the U.S., parents would never be ordered to CONSENT to something they disagreed with.

 

The fact that the Michigan hospital has declined getting involved doesn't mean that they wouldn't have performed the procedure if the child had already been in their care. They just aren't willing to get intervene.

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