Family wants to keep life support for girl brain dead after tonsil surgery #2

[kytty]

I don't know what to think. One of my first experiences in health care was volunteering in the ER of a large hospital while I was in my first year of nursing school. So many times I saw the huge disparity in the way that PTs and families who were judged to be ignorant/uneducated and often poor we're treated vs pts and families who were deemed to be 'educated', who were able to be strong, vocal, present advocates, were well off, or who knew or were related to one of the drs were treated. I have seen drs be totally uncaring, uncompromising, and coldly condescending too many times. I think that Children's bears some fault if the dr indeed tell the mother her child was. 'Dead dead dead dead'. No parent should have to bear that disrespect on the worst day of their lives, and I think that the way the family felt they were treated by that dr , as well as feeling pressured by the staff to remove Jahi from life support in the beginning seems to be what caused them to take such an oppositional stance to the hospital. I think from there opportunistic attorneys and denial have kept the batteries in the mothers back to continue. It's horrible; Jahi is gone. There's no doubt about that. Maybe the mother just wants her daughter to have a chance to pass away from the people she blames for Jahi's death?

 

[shana]

http://newjerseyhills.com/observer-...cle_3b27896c-7810-11e1-9cb0-001871e3ce6c.html
{snipped to address}

Maybe it's him and maybe it's the way this article is written but he sounds like a charlatan. Why would he even say anything about treating Sharon? Patient confidentiality and all that.

From the article posted earlier today about Philip Low:

Low says his technology, which can produce high-resolution brain wave imagery -- can help determine if Jahi is truly brain dead.

He will soon be conducting a similar test on former Israeli Prime Minister Ariel Sharon, in a vegetative state since 2006.

http://www.10news.com/news/local-ne...-of-13-year-old-girl-on-life-support-12302013

~jmo~

 

[SwampMama]

I hate to say it but i think the only appropriate therapy that needs to be prescribed- no, MANDATED - is for Jahi's mom. Her denial is becoming delusional and I fear for her mental health as well as her children who are having to experience their mother losing it.

I am not trying to be harsh, I am not trying to be judgmental. But i see someone who is so clearly out of touch with reality and so wrapped up in a fantasy that has no chance of becoming reality.

 

[Donjeta]

Oh no no, I'm so sorry! I didn't mean that YOU were comparing the two cases, just that others (including msm and the NY "facility" staff) have begun to do so. :seeya: I have edited my original post.

OK, got you.

The article that I mentioned did not really compare the two cases, it was more like an offhand mention of Terri Schiavo in the description of the facility. The rest was me speculating that the facility leaders' interest in the Schiavo case might have colored their perceptions of what to expect with Jahi, not anything that was expressly mentioned by the author.

New Beginnings is dedicated to Terri Schiavo, the Florida woman who was taken off life support in 2005, sparking a nationwide, end-of-life debate.

http://www.newsday.com/news/health/...new-beginnings-court-documents-show-1.6699484

 

[K_Z]

Exploitation: Utilization of another person or group for selfish purposes

the use of something, esp. for profit:

To avail one-self of every opportunity to attain a given end; to seek support from opposing camps, to court the favor of rival interests; to walk a tightrope or to play both ends against the middle. The phrase probably derives from salesmen’s lingo. Currently it is said of one who compromises principle in an attempt to garner some desideratum, who slants his approach or his pitch to align with what his listeners will “buy.”

Agree. There is an awful lot of exploitation going on in this case, IMO. And the longer it goes on, IMO, the more exploitation there will be. The circus will get bigger and more bizarre.

There is no shortage of people willing to insert themselves and glom onto an opportunity like this to further their own agenda.

The family has the complete ability to stop the whole circus, IMO. They could keep everything confidential at this point, and stop giving interviews. Stop releasing statements thru their lawyer to the media. Shut down the social media sites, and just communicate privately with a core group of their closest supporters and family members, while the rest of this sad saga plays out. They can still pursue all the "alternative medical treatments" they wish, work to locate a facility to transfer Jahi's body to, file documents and injunctions, and work with CHO to try to get what they want (which I'm not so sure even they know what that is anymore.) They could choose to do all this privately.

IMO, the family continues to make choices to escalate this sad circus. And that directly leads to exploitation and charlatans. IMO.

 

[sherbetjello]

Maybe the mother just wants her daughter to have a chance to pass away from the people she blames for Jahi's death?

What scares me about this statement, whomever takes on Jahi, and wherever they go for the care for her body, who is not to say that the Mcmath family will NOT place blame at/on those people in the case of, at the time of, her "death"? (I am one that believes she has already passed, I believe brain death is death.)

What if her heart stops while she is making the trip to NY? Will it be the fault of those flying her? The machines she is hooked into? The nurses and doctors making that trip?

I really think that this is a coping issue for the family. I believe that they are having a really hard time believing she is gone, and I get it. I just fear that because they can't bring themselves to believe she is gone, any other mishap in the care of Jahi will be blamed or at the foot of whomever is there trying to help.

I don't see Jahi leaving CHO, personally. I would much rather her given the option to be released and go home, but that is impossible because of medical ethics. She won't have a ventilator surgery to allow her to go anywhere let alone home. I believe if she passes at CHO it would be best for everyone involved, even the family. The blame starts and ends with CHO, and I am MORE THAN WILLING to accept that's how many people feel--its CHO's fault.

It's unfortunate, and its tricky, and I do believe that this case will stand as a landmark for many more cases in the future.

 

[CCmakes3]

OK, got you.

The article that I mentioned did not really compare the two cases, it was more like an offhand mention of Terri Schiavo in the description of the facility. The rest was me speculating that the facility leaders' interest in the Schiavo case might have colored their perceptions of what to expect with Jahi, not anything that was expressly mentioned by the author.



http://www.newsday.com/news/health/...new-beginnings-court-documents-show-1.6699484

I think your speculation is valid. The wording in the article is weird to me....just a brief statement that the facility is "dedicated" to Schiavo with no further clarification or explanation.

 

[joypath]

joypath It would be great to hear what you think about the brain death. Unless you would rather not. TIA

Elley Mae and all....I've started typing replies to comments SO many times and then just said, "nope, stay in the background", others are providing fabulous FACTUAL information about this situation!

BUT....I'll toss out a few thoughts (ALL MINE & I'm writing them as a WS member with an eclectic background!)
1. No EEG activity, no spontaneous breath, no brain stem function (and other criteria tested for & documented as negative) = cessation of unsupported life, brain death, organism existence via mechanical methods only until catastrophic & complete organ demise. Children's did exactly what should have been done as they were in possession of a deceased individual, called the OCME/Coroner to facilitate the removal of the body after OCME certifying the death.
IMHO, the standards & practices of the agencies involved were modified significantly for this family BUT that's not overwhelmingly unusual as the decedent is a minor/child (bringing ALL family members to the facility sometimes delays the activity). Perhaps there was a one-time thought of organ donation and that was part of the agencies HOPE that the family MIGHT take comfort in helping others, thus the delay.
2. Bringing in public & legal intervention has changed & charged up the atmosphere, no longer is it the healthcare provider(s) & the parent in discussion/education/consultation/explanation, it appears to be an "us at all costs (not financial alone!)" vs "them, the CHO (again, not all of CHO's employees!)"
IMHO, the welfare of CHO's patients, especially those in the unit is now effected & affected by the protracted, emotional environment.
3. This new, suggested facility is NOT a "solution".
4. The "magic EEG thought measuring machine" (not instrument!) will NOT pick-up any activity BUT will give the creator an opportunity to promote it and/or add family pain by declaring it was used "too late".
5. Contrary to news & family (UNCLE, especially!) reports, the "tonsillectomy" was NOT routine, there were 3 procedures, the ICU admit was PRE-PLANNED, ICU staff have high level skill-sets & low # patient assignments & ALL of the information has NOT been released.
6. Ventilation has definitely changed the physical condition of the tissues since 12/12-13/2013 so the autopsy will be very difficult to provide concrete answers.

and as a caustic comment, remember that @ 12:01 on 1/1/2014, should cardiac function continue, this permits the family to declare Jahi as a tax-dependant for 2014.

 

[kytty]

I hate to say it but i think the only appropriate therapy that needs to be prescribed- no, MANDATED - is for Jahi's mom. Her denial is becoming delusional and I fear for her mental health as well as her children who are having to experience their mother losing it.

I am not trying to be harsh, I am not trying to be judgmental. But i see someone who is so clearly out of touch with reality and so wrapped up in a fantasy that has no chance of becoming reality.

I don't know....I think there are a lot of people, like Dr. Bryne and this other person with their 'neuro machine', the facility who has agreed to take Jahi, the marchers and demonstrators, the mother's lawyer and even the judge who granted the restraining order and then who extended the order are all giving the mother the context to continue on with this.

 

[K_Z]

Elley Mae and all....I've started typing replies to comments SO many times and then just said, "nope, stay in the background", others are providing fabulous FACTUAL information about this situation!

BUT....I'll toss out a few thoughts (ALL MINE & I'm writing them as a WS member with an eclectic background!)

Snipped to say hi, joypath! Long time no see.

And I totally agree.

 

[Donjeta]

The article I quoted above said that Defina founded International Brain Research Foundation in 2005.
This is apparently their site, hosted on a blog site, and it's very bizarre linguistically imo. Parts of it read like it was created on a pompous sentence generator and then went through an English-Chinese-English online translator.
http://ibrfinc.wordpress.com/

 

[BeginnersLuck]

So what they are wanting now, is for her body to be experimented on by a bunch of "mad scientists" and these people all want to be paid large amounts of cash but there is no idea where this cash will come from?

Was anyone else creeped out by all the different jobs that the Dr. in the article has held and all the different no comments from others as to why he left, or have I just been reading to much here on WS's.

 

[kytty]

Sherbert--I agree with you that Jahi is gone. I was speaking strictly to what the mother's mindset might be. I was frankly shocked that the judge continued the restraining order until January 7th. I just have been sad to see all of the horrible comments towards the mother and what an ignorant, uneducated, delusional, terrible parent she is, etc (not on this site but on other sites). I just think that there is a lot of blame to go around--especially with the hospital seemingly creating a hostile environment that contributed to the mother feeling pressured and pushed to end life support to the lawyer, quacks, and others who have kept this situation going way past the point of all reason. The only person with no fault here is Jahi. I'm so sorry for what she suffered and for her life to have ended this way.

 

[SwampMama]

http://www.nj.com/news/index.ssf/2012/01/meadowlands_hospital_neuroscie.html

The article also described DeFina’s doctorate in clinical psychology from Fielding Graduate University. The school, a mainly online university with monthly in-person sessions, is the only one to receive national accreditation from the American Psychological Association. DeFina’s experimental treatments with neurologist Jonathan Fellus for coma and brain injury have fetched as much as $100,000 from the families of patients who have not improved using traditional means.

 

[Softail]

Elley Mae and all....I've started typing replies to comments SO many times and then just said, "nope, stay in the background", others are providing fabulous FACTUAL information about this situation!

and as a caustic comment, remember that @ 12:01 on 1/1/2014, should cardiac function continue, this permits the family to declare Jahi as a tax-dependant for 2014.

:doh: O.M.G. I never even thought of that! Now I'm even more disgusted than I was before.

uke:

 

[Cubby]

I have not seen or heard any discussion regarding appointing a Guardian Ad Litem for Jahi McMath as the mother seems not to be able to make decisions in the best interest of this child.

Glad you brought that up. The court documents linked upthread show Jahi's mother named as the GAL. When I first read Guardian Ad Litem, I thought oh good, until I read Jahi's mother named. I had to read it three times to be sure of what I read.

I wonder why a court appointed GAL is not involved. Jahi needs one.

 

[Donjeta]

So what they are wanting now, is for her body to be experimented on by a bunch of "mad scientists" and these people all want to be paid large amounts of cash but there is no idea where this cash will come from?

Was anyone else creeped out by all the different jobs that the Dr. in the article has held and all the different no comments from others as to why he left, or have I just been reading to much here on WS's.

So have I... (well, that was never in question)... Additionally, he has supposedly been involved in "cutting edge" brain research since the 1980s but he's got 8 published articles under his belt, and lots of excuses why he can't get anything published.

 

[newmrsc]

Hi everyone. I'm new to MS but have been reading through most of both threads on this. I'm not sure how much can be added to the discussion at this point, but I felt a strong need to weigh in! FYI, I'm a lawyer (in CA), but admittedly not well-versed in these issues.

I think the biggest problem here is the precedent that's being set. Jahi McMath is legally, clinically dead. The law is being extended beyond its breaking point because of a family's grief and inability to let go. It really isn't in issue now if she's dead - she is, by the legally accepted definition and in accordance with procedure. More than enough experts have concurred. At this point, the only argument that could be made is overturning the law related to death, and there simply is no reason to do so. No one has recovered from brain death. While people like Dr. Byrne (and anyone else for that matter) are entitled to believe differently, IE that there is no such thing as brain death, that's not what the medical and legal communities as a whole have found. I fear the future ramifications of these decisions. We're bending everything because of this tragedy, and I personally think this is just making it worse for the family.

One thing that I haven't seen raised here (and forgive me if I'm wrong about that) is the idea that one of the reasons to even have legal definitions of death are to avoid these kinds of situations. I'm not a parent yet, so I can't begin to imagine the pain the family is going through, but if this was my kid or my loved one, I can't begin to fathom how I would get to the point of being ready to turn off the ventilator. When we have this kind of medical technology that simulates life, essentially, by keeping the heart beating, it would be so hard to find acceptance and willingness to stop the ventilator. That's why we need objective, bright line rules. So that we can say, ok, the time has come now, and as much as you don't like this/aren't ready for it, this is what has to happen. Then the family can finally begin to grieve. By allowing this to continue because they aren't ready to let go, the family has just been deluded further into believing there is hope. In my opinion, this never should have gone to court. Where is the legal issue? And even when it did, once the Stanford expert came in and concurred in the brain death declaration, this should have stopped. I've seen it argued that the family should be given time to accept it, but just imagining it for myself...I'm not sure that I would ever get there. How do you accept the death of your child? At some point I'm not sure it's fair to give the parents this kind of authority, because they aren't in a place to be making these decisions. There is too much grief. I just feel it's all gotten incredibly unethical, and as a lawyer, I can't agree with their attorney's willingness to go forward with this case.

 

[SwampMama]

I don't know....I think there are a lot of people, like Dr. Bryne and this other person with their 'neuro machine', the facility who has agreed to take Jahi, the marchers and demonstrators, the mother's lawyer and even the judge who granted the restraining order and then who extended the order are all giving the mother the context to continue on with this.

Oh i agree with you. I started to include the other participants in this grand charade and gave up. I got too disgusted thinking of the lawyer looking for free publicity and loving the attention on national TV, the snake oil selling "doctors" who claim Jahi is alive, etc, etc and I deleted that portion.

It's really just grotesque. i wonder how she will feel about these sketchy opportunists when Jahi's heart fails. They will go on about their lives, happy with their new found fame and prosperity while Jahi's mom has to deal with the fact that Jahi is really and truly gone.

 

[SwampMama]

Hi everyone. I'm new to MS but have been reading through most of both threads on this. I'm not sure how much can be added to the discussion at this point, but I felt a strong need to weigh in! FYI, I'm a lawyer (in CA), but admittedly not well-versed in these issues.

I think the biggest problem here is the precedent that's being set. Jahi McMath is legally, clinically dead. The law is being extended beyond its breaking point because of a family's grief and inability to let go. It really isn't in issue now if she's dead - she is, by the legally accepted definition and in accordance with procedure. More than enough experts have concurred. At this point, the only argument that could be made is overturning the law related to death, and there simply is no reason to do so. No one has recovered from brain death. While people like Dr. Byrne (and anyone else for that matter) are entitled to believe differently, IE that there is no such thing as brain death, that's not what the medical and legal communities as a whole have found. I fear the future ramifications of these decisions. We're bending everything because of this tragedy, and I personally think this is just making it worse for the family.

One thing that I haven't seen raised here (and forgive me if I'm wrong about that) is the idea that one of the reasons to even have legal definitions of death are to avoid these kinds of situations. I'm not a parent yet, so I can't begin to imagine the pain the family is going through, but if this was my kid or my loved one, I can't begin to fathom how I would get to the point of being ready to turn off the ventilator. When we have this kind of medical technology that simulates life, essentially, by keeping the heart beating, it would be so hard to find acceptance and willingness to stop the ventilator. That's why we need objective, bright line rules. So that we can say, ok, the time has come now, and as much as you don't like this/aren't ready for it, this is what has to happen. Then the family can finally begin to grieve. By allowing this to continue because they aren't ready to let go, the family has just been deluded further into believing there is hope. In my opinion, this never should have gone to court. Where is the legal issue? And even when it did, once the Stanford expert came in and concurred in the brain death declaration, this should have stopped. I've seen it argued that the family should be given time to accept it, but just imagining it for myself...I'm not sure that I would ever get there. How do you accept the death of your child? At some point I'm not sure it's fair to give the parents this kind of authority, because they aren't in a place to be making these decisions. There is too much grief. I just feel it's all gotten incredibly unethical, and as a lawyer, I can't agree with their attorney's willingness to go forward with this case.

Welcome!!!! Great first post. Thanks so much for sharing your experience and knowledge with us. Your input is very much appreciated.

I also had huge concerns about the precedence that this case would set. I am hoping that the state and hospitals do something to keep this from happening again.

:welcome3::wagon: