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

[lawstudent]

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.

The thing is, that's not justification for removal, and neither is asking for a second opinion. I believe she was removed from the care of her parents because the courts and doctors believe they are contributing to her condition, whether through Muchausen's or because they are in denial. They clearly believe the parents are doing something wrong, and didn't just disagree on treatment. Not saying the doctors are right, but that's why it implicates parental judgment issues. Still not that similar - I was comparing the media coverage more than the cases.

 

[MyBelle]

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.

What state action are Jahi's parents trying to force?

 

[K_Z]

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.

Perpetual maintenance of a brain dead individual on a ventilator and feeding tube are not "religious practices".

The belief that Jahi is "alive" is claimed to be a religious/ cultural/ social belief by this mother.

The ventilator and feeding tube are not "religious artifacts." IMO.

This isn't an immigrant family with religious beliefs that are unusual in American culture. There is a lot more going on here than "religious beliefs", IMO.

This is extreme denial, IMO. Colored by a whole lot of anger, sorrow, fighting, and resistance. Maybe even some guilt. IMO. And a whole lot of trying to "save face", IMO.

Sadly, nothing good will come out of this situation, IMO.

 

[wallflower67]

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

Thank you for explaining this...from someone who is on a code team. I have no idea what happened to Jahi, but I can tell you that what you explained above is exactly what goes on in my institution.

 

[jjenny]

The thing is, that's not justification for removal, and neither is asking for a second opinion. I believe she was removed from the care of her parents because the courts and doctors believe they are contributing to her condition, whether through Muchausen's or because they are in denial. They clearly believe the parents are doing something wrong, and didn't just disagree on treatment. Not saying the doctors are right, but that's why it implicates parental judgment issues. Still not that similar - I was comparing the media coverage more than the cases.

Of course it isn't a justification for removal. Which is why many people are upset over it. Her parents were not accused of Munchausen by proxy. Justina is the one accused of having a "severe and persistent somatic symptoms disorder." Which means she is accused of causing her symptoms with her mind somehow.

 

[MyBelle]

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

I think it was more of an issue that Jahi was hemorrhaging blood from her mouth and her family, not nurses, were expected to suction.

I've spent a whole lotta time in an ICU with someone on a vent and never did a nurse ask me to suction nor did I witness it in any of the other rooms that were fully windowed.

 

[jjenny]

I think it was more of an issue that Jahi was hemorrhaging blood from her mouth and her family, not nurses, were expected to suction.

I've spent a whole lotta time in an ICU with someone on a vent and never did a nurse ask me to suction nor did I witness it in any of the other rooms that were fully windowed.

Did anybody ask them to suction? Suctioning a patient after a surgery such as Jahi had could be dangerous.

 

[lawstudent]

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.

Historically, most people were of one or very similar religions, and that's where the line tended to be drawn.

Thank you, and I wasn't exactly talking about miracles. They weren't super religious. They believed modern medicine could save her, and didn't understand that cancer isn't one thing and only certain kinds can have a good prognosis. My grandmother's cancer was not going to go away - she could have had a bit more time, but it was by no means curable. And I don't believe religious people are stupid, but that doesn't mean I give any credit to those beliefs. And I don't understand the sentence about malpractice. I was talking about how they explained the situation, and was not saying it was malpractice, but that I thought it was poorly done and creates negative perceptions in people that may cause them to allege malpractice. Some of what happened could have been alleged as malpractice, though I do not think we would have won - it's such a fluid concept that you can make almost any argument, which is why people go on about tort reform. Not the diagnosis - that wasn't what I was saying. Bad news is not malpractice. But certain complications that arguably should have been anticipated were not addressed in time. It's still kind of unclear what exactly happened. It was largely due to her delay in seeking treatment, unfortunately.

 

[lawstudent]

I think it was more of an issue that Jahi was hemorrhaging blood from her mouth and her family, not nurses, were expected to suction.

I've spent a whole lotta time in an ICU with someone on a vent and never did a nurse ask me to suction nor did I witness it in any of the other rooms that were fully windowed.

Yes, that's my understanding, and that definitely sounds messed up, but I find it hard to believe this actually happened. Maybe that was the initial instruction when it was normal post-surgical bleeding, but once it got out of control, I can't see them leaving it to the family.

Of course it isn't a justification for removal. Which is why many people are upset over it. Her parents were not accused of Munchausen by proxy. Justina is the one accused of having a "severe and persistent somatic symptoms disorder." Which means she is accused of causing her symptoms with her mind somehow.

We don't know why she was taken, do we? We have the parents' side of things, not the court documents. You can't go to court and say "their daughter needs psychiatric treatment and they want to talk to another doctor. Take her away." That's totally ridiculous, and if it happened, then a lot of people are in big trouble. You can say "Their daughter needs psychiatric treatment, her parents are lying to get her diagnosed with physical issues and subjecting her to dangerous medical procedures and medications that are exacerbating these mental problems, and she needs to be removed for her own safety because their actions are abusive." That would be an actual basis. Given Children's Hospital doesn't regularly do these sort of crazy things, I'm inclined to believe they have some basis. Not saying they are right, but that they believe they are. I know that was the diagnosis, but that doesn't mean they don't believe the parents caused or contributed to the alleged somataform disorder.

 

[lawstudent]

What state action are Jahi's parents trying to force?

Before they moved her, they were trying to force the state to stop the hospital's decision.

 

[MyBelle]

Perpetual maintenance of a brain dead individual on a ventilator and feeding tube are not "religious practices".

The belief that Jahi is "alive" is claimed to be a religious/ cultural/ social belief by this mother.

The ventilator and feeding tube are not "religious artifacts." IMO.

This isn't an immigrant family with religious beliefs that are unusual in American culture. There is a lot more going on here than "religious beliefs", IMO.

This is extreme denial, IMO. Colored by a whole lot of anger, sorrow, fighting, and resistance. Maybe even some guilt. IMO. And a whole lot of trying to "save face", IMO.


Sadly, nothing good will come out of this situation, IMO.

BBM. That is your opinion. The Judge ruled that the mother could take custody. His ruling was based on her religious faith that was argued by her attorney. It is what it is. Our courts do not dictate what somebody believes after a person is legally declared dead. If the mother is in denial, so what? This is not the first case where religious beliefs about when death occurs has come into play and it won't be the last.

Under some interpretations of Jewish religious law, including the one accepted by the family's Hasidic sect, death occurs only when the heart and lungs stop functioning.

That means Motl "is alive, and his family has a religious obligation to secure all necessary and appropriate medical treatment to keep him alive," the family's attorney wrote in a court filing this week.






http://www.nbcnews.com/id/27611868/ns/us_news-crime_and_courts/#.Uz-AmleebEg

 

[MyBelle]

Historically, most people were of one or very similar religions, and that's where the line tended to be drawn.

Thank you, and I wasn't exactly talking about miracles. They weren't super religious. They believed modern medicine could save her, and didn't understand that cancer isn't one thing and only certain kinds can have a good prognosis. My grandmother's cancer was not going to go away - she could have had a bit more time, but it was by no means curable. And I don't believe religious people are stupid, but that doesn't mean I give any credit to those beliefs. And I don't understand the sentence about malpractice. I was talking about how they explained the situation, and was not saying it was malpractice, but that I thought it was poorly done and creates negative perceptions in people that may cause them to allege malpractice. Some of what happened could have been alleged as malpractice, though I do not think we would have won - it's such a fluid concept that you can make almost any argument, which is why people go on about tort reform. Not the diagnosis - that wasn't what I was saying. Bad news is not malpractice. But certain complications that arguably should have been anticipated were not addressed in time. It's still kind of unclear what exactly happened. It was largely due to her delay in seeking treatment, unfortunately.

What you describe is more about bedside manner. Some physicians are terrible about it.

 

[K_Z]

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.

We have several legal posters here, so feel free to correct me if I'm wrong.

The basis for this legal "interference" with parental religious EXPRESSION (actions) is on the basis of the rights of the child to have the opportunity to grow to the age of majority, whereupon the child as an adult will then have the right to accept or refuse medical treatment for him or herself independently.

The courts only step in and usurp the medical decision making rights of the parents when the parental medical decision making (refusal of treatment scientifically proven to be helpful/ lifesaving) will clearly and unequivocally lead to disability or death for the child.

As examples, lifesaving blood transfusions, chemotherapy for cancers with high survival rates, lifesaving surgeries, etc. AFAIK, the courts never "prohibit" the practice of hope or prayer-- they just add in the mandate for whatever medical care is essential. (And often use threat of loss of custody as a motivator to comply with medical care.)

The parent right is always one of proxy for the best interests of the child, legally. That is one reason why something like cultural gender infanticide is not legal in this country and this culture.

 

[Herding Cats]

I think it was more of an issue that Jahi was hemorrhaging blood from her mouth and her family, not nurses, were expected to suction.
I've spent a whole lotta time in an ICU with someone on a vent and never did a nurse ask me to suction nor did I witness it in any of the other rooms that were fully windowed.

(SBBM)

And I never witnessed anyone suctioning other than RNs.

But doesn't that say something? Your experience, and my experience, would seem to show that ICU RNs don't go around asking family members to suction...and I don't believe that happened in this case, either.

If suctioning happened, I believe that it was done without an RN/Dr approval, and done by a family member. There is an "art", if you will, to suctioning, and it can easily be done wrong and dislodge clots or packing or whatever else is there. I believe that if suctioning happened, a family member did it, and that family member created a situation that caused Jahi to bleed out...and then a code was called.

It's my opinion that it's unreasonable to assume that the family members were "told to" suction Jahi, especially in the face of yours and my experience. Rather, it's far more reasonable to assume that the family is "misremembering" what happened (at best), or covering their behinds (at worst).

Best-
Herding Cats

 

[MyBelle]

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

But nooooooo....

Indeed. But even without religion, we'd still have some bullies trying control everybody else.

 

[jjenny]

Yes, that's my understanding, and that definitely sounds messed up, but I find it hard to believe this actually happened. Maybe that was the initial instruction when it was normal post-surgical bleeding, but once it got out of control, I can't see them leaving it to the family.



We don't know why she was taken, do we? We have the parents' side of things, not the court documents. You can't go to court and say "their daughter needs psychiatric treatment and they want to talk to another doctor. Take her away." That's totally ridiculous, and if it happened, then a lot of people are in big trouble. You can say "Their daughter needs psychiatric treatment, her parents are lying to get her diagnosed with physical issues and subjecting her to dangerous medical procedures and medications that are exacerbating these mental problems, and she needs to be removed for her own safety because their actions are abusive." That would be an actual basis. Given Children's Hospital doesn't regularly do these sort of crazy things, I'm inclined to believe they have some basis. Not saying they are right, but that they believe they are. I know that was the diagnosis, but that doesn't mean they don't believe the parents caused or contributed to the alleged somataform disorder.

How did her parents cause her somatoform disorder (which I don't believe she has to begin with)?
She has been in the DCF care for over a year.
Her so-called somatoform disorder hasn't got any better.
And in fact if she does have mitochondrial disorder, DCF prevented her treatment for over a year.
Think about it.

 

[lawstudent]

http://abclocal.go.com/kgo/story?id=9380895

Does this article represent the most recent developments?

If so, it sounds like the hospital reached a settlement with the family, which the judge approved. It doesn't sound like the court ever agreed she is legally alive - although she is not officially dead, due to the whole autopsy/cause of death issue. They released her to the coroner and he issued a death certificate although he could not perform an autopsy and determine the cause. Am I missing something? Jahi's mother argued based on religion, but the case settled before that issue was reached.

 

[K_Z]

What you describe is more about bedside manner. Some physicians are terrible about it.

And some families are eternally difficult, too, despite the best efforts of health professionals.

Everyone shows up at a hospital with a big load of attitude and cultural/ social baggage. Sometimes good and helpful, sometimes adversarial from the beginning, for reasons unknown and unrelated to the current medical experience. We take all comers. Some families are easy, some are incredibly difficult. We don't often get to choose who we work with.

And most professionals do the absolute best they can with the patients and families they encounter-- difficult or easy.

 

[MyBelle]

And I never witnessed anyone suctioning other than RNs.

But doesn't that say something? Your experience, and my experience, would seem to show that ICU RNs don't go around asking family members to suction...and I don't believe that happened in this case, either.

If suctioning happened, I believe that it was done without an RN/Dr approval, and done by a family member. There is an "art", if you will, to suctioning, and it can easily be done wrong and dislodge clots or packing or whatever else is there. I believe that if suctioning happened, a family member did it, and that family member created a situation that caused Jahi to bleed out...and then a code was called.

It's my opinion that it's unreasonable to assume that the family members were "told to" suction Jahi, especially in the face of yours and my experience. Rather, it's far more reasonable to assume that the family is "misremembering" what happened (at best), or covering their behinds (at worst).

Best-
Herding Cats

Why was family allowed to suction at all? I sure will never forget that IV in my dad's hand oozing green pus because it had not been kept clean. It was a doctor who found it, not a nurse. We got dad out of there the next day. There were several staff members who were outraged at the poor care and vocalized it to me. Some of the staff at Children's Hospital may have done the same thing with Jahi's family.

JMO

 

[lawstudent]

How did her parents cause her somatoform disorder (which I don't believe she has to begin with)?
She has been in the DCF care for over a year.
Her so-called somatoform disorder hasn't got any better.

We should probably move this discussion, but victims of munchausen-by-proxy often end up displaying symptoms because they've been told they have them so many times and been forced to act as if they do - I can't see many being totally unaffected by the psychological impacts of that. And I thought the allegation was that she was on a lot of addictive medication, which can cause the manifestation of physical symptoms brought on by psychological responses.

If she was on all sorts of addictive medications and has needed this much in-patient treatment, I don't expect this to get better quickly. It would explain why they lost custody so quickly - if she was displaying extremely disturbing behavior, it would make more sense. That sort of mental health problem does not resolve quickly, and it wasn't like she just had some behavioral or emotional issues necessitating a foster or temporary rehabilitation placement. It sounds pretty serious if she's been getting intensive treatment this long. And she could be getting better, but not be ready for release yet.