Family wants to keep life support for girl brain dead after tonsil surgery #8

[al66pine]

SBM:

Brain dead is dead........PERIOD

... nothing that points to malpractice by the hospital where Jahi had surgery.

... a "grieving mother". This mother IMOO is not grieving at all.
Delusional yes, grieving no.

yes.
Yes.
YES.
YES.
YES.

 

[Herding Cats]

I had an interesting experience a month or so ago, while I sat with my mother in ICU. Mom was there 9 days total, and in that time, I watched at least 4 different code blues/patients passing.

At no time did anyone run around screaming, calling for help, or even "move fast". At no time was there shouting, or cursing, or yelling. At no time was there less than 6 RNs and 2 Drs at the patient's bedside, working as hard as they could, to bring the patient back.

I recall one code where, after easily 30 minutes, there was a request for someone new to do compressions, because the person/people doing it were tired. I volunteered, and it was considered, but another nurse from the other side of ICU came and did them. In another code, I took the family of the patient into the waiting area, and just prayed with them.

One code happened during shift change - where there are twice as many RNs as normal present.

It was a well-oiled, wonderfully run machine, once a code was called. No matter what time, no matter shift change, no matter what else was going on. There were 'code teams', and when a code got called, the nurses on the team went to the bedside, while other nurses took over their patients. It was a well practiced, well designed, wonderfully run crisis.

I say all this because of the whole issue with Jahi being coded during shift change - or at least the allegations that the code was bad that happened to Jahi...no. It's not like people see on television, not crazy, not running, not yelling. It's tense, but the nurses, especially those in ICU, are soooo highly trained at a code and what their job is, and how other patients are cared for...it can almost go unnoticed. I know that if I was not trained in it, there were at least two that occurred that I wouldn't have realized anything was going on...that's how calm and mellow the medical personnel are in ICU.

And I, for one, was proud of those RNs and Drs. who cared enough about all the other patients in ICU to not run around like chickens with their heads cut off, or even really doing anything "out of the ordinary", because for those in ICU, a code blue is nothing unusual, and nothing extraordinary...it's part of the daily grind.

I just wanted to mention that. I have NO doubt that the Drs and Nurses at Childrens did nothing less than their best, and did it professionally. Period.

Best-
Herding Cats

 

[AnonymousD]

I would like to respectfully ask for a light discussion on the difference between Jahi's case & the case of Justina Pelletier (CT teen who has been removed from her parent's custody by the state because of doctor's request at Boston Children's Hospital).

Why is it ok for Jahi's mother to want to care for her brain dead daughter, indefinitely, and she still have custody of her child(ren)? Yet Justina's parents have been stripped of their parental rights because of what doctor(s) at Boston Children's hospital have said they believe is mental anguish brought on by stress from her parents, which in the end I've read them classify as child abuse. When Justina was previously diagnosed with mitochondrial disease.

Justina's case makes me afraid to ever disagree with a medical professional when my child is involved. However, Jahi's mother has disagreed with medical professionals & the courts gave her the right to do what she wishes with her daughter.


***Please know I am not asking to derail this thread with this discussion. I just would truly like some comparison between the two cases. Just as I have watched this thread lightly discuss the similarities/differences between Jahi & Marlise Munoz's cases.

 

[CHERIE.T]

:seeya:

No mamma, I see you just fine :wave:

:loveyou:

 

[CHERIE.T]

That is absolutely, patently false. Some religions mandate prayer in lieu of medical care. The law can and does allow courts to intervene and order treatment for children in these circumstances when withholding it could result in severe illness or death or other serious consequences. The law can and does intervene in the practice of another's religion if said practice is in conflict with state or federal law.

Deserves another read, thank you.

 

[lawstudent]

I would like to respectfully ask for a light discussion on the difference between Jahi's case & the case of Justina Pelletier (CT teen who has been removed from her parent's custody by the state because of doctor's request at Boston Children's Hospital).

Why is it ok for Jahi's mother to want to care for her brain dead daughter, indefinitely, and she still have custody of her child(ren)? Yet Justina's parents have been stripped of their parental rights because of what doctor(s) at Boston Children's hospital have said they believe is mental anguish brought on by stress from her parents, which in the end I've read them classify as child abuse. When Justina was previously diagnosed with mitochondrial disease.

Justina's case makes me afraid to ever disagree with a medical professional when my child is involved. However, Jahi's mother has disagreed with medical professionals & the courts gave her the right to do what she wishes with her daughter.




***Please know I am not asking to derail this thread with this discussion. I just would truly like some comparison between the two cases. Just as I have watched this thread lightly discuss the similarities/differences between Jahi & Marlise Munoz's cases.

I was going to bring this up, but didn't have time this morning. I live in Boston, so it has a lot of coverage. I do not believe we have the facts in this story. I do not believe that Children's Hospital just made up a diagnosis and then CPS seized her. That's ridiculous. I do think it brings up serious issues regarding parental rights, and I do not know what is best for her, but the parents are playing this case out in the media in the most biased way possible. It bothers me a lot more than the Jahi case, where her family doesn't seem to be hiding a bunch of stuff, but simply doesn't get it. I believe the facts in this case are being seriously misrepresented and the media is running with it instead of looking into it.

We are taking the parents' word on everything because the hospitals can't discuss medical info, nor can CPS. We really don't know she was diagnosed with mitochondrial disease, or that Children's Hospital blamed it all on mental health issues. There certainly has to be more to it than that if she has been in a care facility this long. CPS can be corrupt, but I see no reason why they would make all this up in this particular case. It sounds like maybe they thought the parents had munchausen's and the girl had serious issues as a result - I don't know if they are right - certainly doctors have been wrong on this before. But I do know the story makes no sense. They almost never take children away because parents disagree with medical choices - they may get a court order to disobey the parents, but rarely does it end up like this. It's too weird. But the parents haven't been arrested, so clearly they didn't blame it all on child abuse.

The media is way more sympathetic to this family to Jahi's, but I think that's even worse because we have such little information.

 

[nrdsb4]

Nothing I said is false. There was a court ruling in this case. The Judge did NOT order treatment.

JMO

Baloney. What you said is false.

Our laws do not allow us to intervene in the practice of another's religion in the United States.

YES THEY DO.

 

[jjenny]

I was going to bring this up, but didn't have time this morning. I live in Boston, so it has a lot of coverage. I do not believe we have the facts in this story. I do not believe that Children's Hospital just made up a diagnosis and then CPS seized her. That's ridiculous. I do think it brings up serious issues regarding parental rights, and I do not know what is best for her, but the parents are playing this case out in the media in the most biased way possible. It bothers me a lot more than the Jahi case, where her family doesn't seem to be hiding a bunch of stuff, but simply doesn't get it. I believe the facts in this case are being seriously misrepresented and the media is running with it instead of looking into it.

We are taking the parents' word on everything because the hospitals can't discuss medical info, nor can CPS. We really don't know she was diagnosed with mitochondrial disease, or that Children's Hospital blamed it all on mental health issues. There certainly has to be more to it than that if she has been in a care facility this long. CPS can be corrupt, but I see no reason why they would make all this up in this particular case. It sounds like maybe they thought the parents had munchausen's and the girl had serious issues as a result - I don't know if they are right - certainly doctors have been wrong on this before. But I do know the story makes no sense. They almost never take children away because parents disagree with medical choices - they may get a court order to disobey the parents, but rarely does it end up like this. It's too weird. But the parents haven't been arrested, so clearly they didn't blame it all on child abuse.

The media is way more sympathetic to this family to Jahi's, but I think that's even worse because we have such little information.

We are on the wrong thread regarding Justina Pelletier. But what you posted about it is simply not true. We know she was diagnosed with mitochondrial disease because it was confirmed by the doctor who diagnosed her, Dr. Mark Korson from Tufts.
And there is plenty of information if you bother to look.

 

[jjenny]

I would like to respectfully ask for a light discussion on the difference between Jahi's case & the case of Justina Pelletier (CT teen who has been removed from her parent's custody by the state because of doctor's request at Boston Children's Hospital).

Why is it ok for Jahi's mother to want to care for her brain dead daughter, indefinitely, and she still have custody of her child(ren)? Yet Justina's parents have been stripped of their parental rights because of what doctor(s) at Boston Children's hospital have said they believe is mental anguish brought on by stress from her parents, which in the end I've read them classify as child abuse. When Justina was previously diagnosed with mitochondrial disease.

Justina's case makes me afraid to ever disagree with a medical professional when my child is involved. However, Jahi's mother has disagreed with medical professionals & the courts gave her the right to do what she wishes with her daughter.


***Please know I am not asking to derail this thread with this discussion. I just would truly like some comparison between the two cases. Just as I have watched this thread lightly discuss the similarities/differences between Jahi & Marlise Munoz's cases.

Well, Jahi is legally dead. So presumably that means it doesn't matter what treatment she gets. CPS doesn't take legally dead children into custody. Jahi's mother has custody of her other children, but my understanding is that somebody else is taking care of them at this time due to mother spending time in the facility where Jahi is located.

 

[lawstudent]

Plus, the state overrides questions of faith every day, and that is why Sharia law is not practiced here and polygamy is not allowed. If we assert that religious faith should trump secular law, then on what grounds do we justify picking and choosing which faiths/beliefs those are?

This debate really gets me, because people talk all about American's religious freedom, but never talk about the fact that we do draw the line, usually based on whatever the dominant religion thinks is tolerable. There is simply no way to have total religious tolerance. Some people's religious beliefs include sex with minors, murdering others, sacrificing people and animals, abusing women and children, etc. Yet we make exceptions to certain rules based on religious beliefs as though we don't interfere with religion all the time. Try living out the Bible literally and see where that gets you. If a thirteen year old claimed to be pregnant with the child of God and was engaged to a grown man, you can bet the authorities wouldn't say "okay, cool, your religious beliefs are fine with me." We would have quite an investigation going on there. We are founded on the principle of religious tolerance, and we have a better history of it than many other countries, but we definitely have not tolerated all belief systems. I've just never understood that line - it seems so random. And it's also impossible to define true religious beliefs. I don't think we have any right to regulate someone's beliefs and expression, but it seems impossible to not regulate their actions on those beliefs.

Thank you for your well-thought out comments, lawstudent (and others!). I enjoy the depth of the conversation, and I appreciate the time you and others take to explain your opinions. I agree with much of what you have written. And I agree with gitana1 that you have a bright future in your chosen career!

!

Snipped for brevity. Thanks for the info re the attorney and other behaviors by the family, and the compliment! I agree that is totally inappropriate, and if any of it was illegal, it should have been enforced. I sympathize with them, but that's not okay at all. Agreed with beliefs v. actions. I do not believe malpractice occurred and i believe the doctors did their best, but most Americans will simply never accept that you can die of seemingly routine surgery. No surgery is routine. My dentist told me to get my wisdom teeth out even though he told me he didn't have a justification but just figured it woudl be good to do just in case. I know he is the professional, but I am extremely hesitant to have such a procedure done just in case. Of course it is devastating, but it's not as shocking as people think. I do think doctors should make the risks more clear, but I know they don't want to scare people unnecessarily.

Last year, my grandmother experienced sudden severe health problems and was admitted to top Boston hospitals. It turned out she had very advanced cancer, and the doctors danced around the fact that it was terminal, let alone that it was going to be months at the most. Because I am a well-informed person on these matters, I knew immediately from what the doctors didn't say that it was very bad. I knew from the first symptoms - it was clear her organs were failing suddenly, and that is a terrible sign. My mom did too - we both read a lot, but have no medical background. My dad and his family - it was his mother - just had no idea. They kept talking about her getting better, all excited about treatment, etc. I just couldn't stand watching the hope. It's terrible to watch these issues get minimized and people be too stupid to know better, and my dad is very intelligent, but he just really didn't get it. I just stood there silent because I knew what was going to happen, and then after my mom pulled me aside and said "did that indicate to you that it's terminal?" It's just weird how some people grasp reality despite trauma, and some don't.

The doctors never figured out what kind of cancer she had, then claimed she could have chemo and go home and do much better. She reacted horribly to the chemo and died within a month of her initial visit, never having left the hospital. The story changed everyday. She deteriorated unbelievably, having gone in extremely healthy for her age. It's clear the doctors were not very upfront about the situation, and that something happened with the chemo. I don't know all the details because most of my relatives weren't smart enough to ask or didn't want to share. I believe the doctors did their best, and do not resent them. Some families may well have sued. My family didn't even consider it, because that's not the mindset they have. They were not angry. But, even at the top hospitals, I do think the doctors made some misjudgments and were pretty untruthful with my family. It's a complex situation, and normal to make misjudgments. My family can separate the sadness from anger and accept that things go wrong. I still think the doctors did a terrible job explaining the situation realistically, and so we had no time to react when things went bad so quickly. I can see how it makes people become desperate.

 

[lawstudent]

Of course when it comes to financial costs, who bears those costs becomes a major part of the argument when examining cases such as this. But, IMO, only in America. In other nations, medical costs are either an expected part of everyone's tax burden and, in exchange, their out of pocket costs are miniscule, so cost in such a case is unimportant to most, or, medical care is scant or inadequate, so medical ethical cases involving life and death rarely have the opportunity to occur, or religious beliefs surrounding life and death are do sacred that cost can never be a factor in decisions about medical care.

I really believe that it is a uniquely American phenomena that cost and type or duration of medical care and/or financial impact as a decider in medical ethics cases like this one, are factors in the debate.

Thank you so much for saying this. Some people really don't understand that the reason Americans have the option to get outraged about issue such as this is that we have the luxury of the choice - most societies don't have the occasion to fight about these things because they can't even get healthcare for living people. Yet people are so mad that Malaysia doesn't have the latest modern technology and security. That's not something to bash other countries about - it's something to be grateful about it. And, Americans have a certain mindset regarding personal responsibility and practicality, due to our history. I agree with much of it, but I am also well aware it is not the only mindset and not the only right way to do things. In some countries, cost is really not the main concern at all - religious and cultural traditions go against any notions of how we think things "should be done." My mom talks about how she knows someone from a culture in which the groom's family pays for the wedding, and the family is going to go bankrupt paying for an exorbitant ceremony to please the bride. She's like "well why would you even pay it? tell her to pay for it!" But while that would be the American answer, it's not debatable other places. It's not about what's logical. Logical = right is a fairly modern American mindset.

We are on the wrong thread regarding Justina Pelletier. But what you posted about it is simply not true. We know she was diagnosed with mitochondrial disease because it was confirmed by the doctor who diagnosed her, Dr. Mark Korson from Tufts.
And there is plenty of information if you bother to look.

Thanks - I will read there. You are right - diagnosed was the wrong term to use. I meant there is no way of proving her only issue was mitochondrial disease. Diagnoses can be wrong or complicated.

 

[CHERIE.T]

Jahi's mom was repeatedly told her daughter was brain dead. She refused the truth.

Too bad a scan can't be preformed again to prove there is still no brain activity.

 

[MyBelle]

Baloney. What you said is false.



YES THEY DO.

No, the government does NOT dictate religious practices pertaining to dead bodies. We have laws that govern disposal, burial, etc but the religious practices aren't governed by the government.

 

[K_Z]

Respectfully, I don't think there are any relevant comparisons or parallels between the cases of Justina Pelletier and Jahi McMath, and their families.

Justina is alive; Jahi McMath is legally dead. NW cannot "lose custody" of Jahi's body by CPS (at least, I think she can't! There may be some coroner's rules that must be adhered to), and as long as she has made appropriate arrangements for care of her other children, she can't lose custody of them.

Justina's family has been accused of Munchausen By Proxy syndrome. This is an evasive and difficult diagnosis which involves extensive input from both medical personnel, social services, and law enforcement.

Münchausen syndrome by proxy - Wikipedia, the free encyclopedia

No health professionals (IMO) would classify NW's actions in presenting Jahi for care for her obesity and obstructive sleep apnea as MBP. NW's actions after Jahi's death aren't relevant to MBP.

 

[MyBelle]

Well, Jahi is legally dead. So presumably that means it doesn't matter what treatment she gets. CPS doesn't take legally dead children into custody. Jahi's mother has custody of her other children, but my understanding is that somebody else is taking care of them at this time due to mother spending time in the facility where Jahi is located.

Well said. There is no comparison between the cases, imo.

 

[Linda7NJ]

If I ruled the world, religion would be abolished all together. Then we wouldn't have these problems.

But nooooooo....

 

[K_Z]

Jahi's mom was repeatedly told her daughter was brain dead. She refused the truth.

Too bad a scan can't be preformed again to prove there is still no brain activity.

BBM.

Certainly if NW wanted to have a cerebral angiogram performed again, to "prove" Jahi is alive and improving, and has blood flow to her brain, she could find a facility willing to perform one, and pay for it. Particularly if she was persuasive enough to convince a medical professional that there was a good reason to do another one.

And that would be an incredible thing to do for all of medicine and humanity, because IF the scan "proved" there was blood flow to Jahi's brain now, Jahi would be the first person in history to recover from documented brain death. That's big. IMO.

 

[jjenny]

Respectfully, I don't think there are any relevant comparisons or parallels between the cases of Justina Pelletier and Jahi McMath, and their families.

Justina is alive; Jahi McMath is legally dead. NW cannot "lose custody" of Jahi's body by CPS (at least, I think she can't! There may be some coroner's rules that must be adhered to), and as long as she has made appropriate arrangements for care of her other children, she can't lose custody of them.

Justina's family has been accused of Munchausen By Proxy syndrome. This is an evasive and difficult diagnosis which involves extensive input from both medical personnel, social services, and law enforcement.

Münchausen syndrome by proxy - Wikipedia, the free encyclopedia

No health professionals (IMO) would classify NW's actions in presenting Jahi for care for her obesity and obstructive sleep apnea as MBP. NW's actions after Jahi's death aren't relevant to MBP.

That is simply not accurate regarding Justina's family. They have not been accused of Munchausen by proxy. Justina is the one who has been accused of having a somatoform disorder. Which means she is accused of causing her own condition with her mind.

 

[lawstudent]

Well said. There is no comparison between the cases, imo.

They are not very comparable legally, I agree, but I do think they are in terms of media coverage and public perception.

But Jahi's parents are trying to force state action, and Justina's parents are trying to prevent it. The issue of death aside, most of the implications are different.

 

[MyBelle]

This debate really gets me, because people talk all about American's religious freedom, but never talk about the fact that we do draw the line, usually based on whatever the dominant religion thinks is tolerable. There is simply no way to have total religious tolerance. Some people's religious beliefs include sex with minors, murdering others, sacrificing people and animals, abusing women and children, etc. Yet we make exceptions to certain rules based on religious beliefs as though we don't interfere with religion all the time. Try living out the Bible literally and see where that gets you. If a thirteen year old claimed to be pregnant with the child of God and was engaged to a grown man, you can bet the authorities wouldn't say "okay, cool, your religious beliefs are fine with me." We would have quite an investigation going on there. We are founded on the principle of religious tolerance, and we have a better history of it than many other countries, but we definitely have not tolerated all belief systems. I've just never understood that line - it seems so random. And it's also impossible to define true religious beliefs. I don't think we have any right to regulate someone's beliefs and expression, but it seems impossible to not regulate their actions on those beliefs.



Snipped for brevity. Thanks for the info re the attorney and other behaviors by the family, and the compliment! I agree that is totally inappropriate, and if any of it was illegal, it should have been enforced. I sympathize with them, but that's not okay at all. Agreed with beliefs v. actions. I do not believe malpractice occurred and i believe the doctors did their best, but most Americans will simply never accept that you can die of seemingly routine surgery. No surgery is routine. My dentist told me to get my wisdom teeth out even though he told me he didn't have a justification but just figured it woudl be good to do just in case. I know he is the professional, but I am extremely hesitant to have such a procedure done just in case. Of course it is devastating, but it's not as shocking as people think. I do think doctors should make the risks more clear, but I know they don't want to scare people unnecessarily.

Last year, my grandmother experienced sudden severe health problems and was admitted to top Boston hospitals. It turned out she had very advanced cancer, and the doctors danced around the fact that it was terminal, let alone that it was going to be months at the most. Because I am a well-informed person on these matters, I knew immediately from what the doctors didn't say that it was very bad. I knew from the first symptoms - it was clear her organs were failing suddenly, and that is a terrible sign. My mom did too - we both read a lot, but have no medical background. My dad and his family - it was his mother - just had no idea. They kept talking about her getting better, all excited about treatment, etc. I just couldn't stand watching the hope. It's terrible to watch these issues get minimized and people be too stupid to know better, and my dad is very intelligent, but he just really didn't get it. I just stood there silent because I knew what was going to happen, and then after my mom pulled me aside and said "did that indicate to you that it's terminal?" It's just weird how some people grasp reality despite trauma, and some don't.

The doctors never figured out what kind of cancer she had, then claimed she could have chemo and go home and do much better. She reacted horribly to the chemo and died within a month of her initial visit, never having left the hospital. The story changed everyday. She deteriorated unbelievably, having gone in extremely healthy for her age. It's clear the doctors were not very upfront about the situation, and that something happened with the chemo. I don't know all the details because most of my relatives weren't smart enough to ask or didn't want to share. I believe the doctors did their best, and do not resent them. Some families may well have sued. My family didn't even consider it, because that's not the mindset they have. They were not angry. But, even at the top hospitals, I do think the doctors made some misjudgments and were pretty untruthful with my family. It's a complex situation, and normal to make misjudgments. My family can separate the sadness from anger and accept that things go wrong. I still think the doctors did a terrible job explaining the situation realistically, and so we had no time to react when things went bad so quickly. I can see how it makes people become desperate.

BBM. Not everybody elected to form and enact our laws shares the same religion.

I'm sorry for the loss of your grandmother. Your grandmother's situation is very sad and not at all uncommon. But, people who have faith and believe in miracles aren't "stupid" (your term, not mine.) A diagnosis of cancer isn't the same as medical malpractice.