Family wants to keep life support for girl brain dead after tonsil surgery #1

[BeginnersLuck]

From the link above.

I don't see why the hospital couldn't allow the family to get a second opinion. It might help the family to let her go if the other doctors agree that it's a hopeless situation.

I wonder what they mean by her responding to her mother's touch.

I imagine the meeting at the hospital also included explaining to the parents what exactly brain death is. Sometimes, no matter how things are explained from a medical perspective, the family still has a great deal of faith that a miracle will happen.

I don't see why or how the hospital could legally prevent them from having a second opinion. I question that the hospital denied this request. Of course, the second opinion should be given by someone who is a expert in that field.

As far as responding to touch, it could be reflexes. I'll leave that question to someone that has more experience in that field.

 

[Linda7NJ]

They absolutely should get a second opinion, for their own piece of mind.
Doctors sometimes make mistakes too. Without the second independent opinion they would always have doubt. I know I would.



Sent from my iPhone using Tapatalk 2

 

[michmi]

I just really cannot believe that a hospital in the middle of such a media storm would be so very insensitive in speaking with the parents.

And although I am sure her parents aren't in any kind of place to hear this, if they *did* choose to take her off life support she could possibly help other people have a chance at life, giving her own death some meaning.

Let's be fair---that's the family's side of the story and they've already resisted all the conversations that occurred before, which were probably alluding to her condition without being extremely blunt.

There really is no other way to describe a person who is brain dead other than being "a body" and being "dead". That's exactly what it is. What other way could it be described?

I also find it extremely difficult to believe a second opinion request was denied--the family has a right to it. It may be that the family wants someone who isn't credentialed at the hospital. The credentialing can be rushed if necessary, but if they decide to get someone from another state and isn't licensed in the state they are in, that can't be done.

 

[al66pine]

From article http://www.insidebayarea.com/news/ci_24761285/oakland-family-brain-dead-13-year-old-girl.

"A hospital spokeswoman refused to directly address the meeting or the hospital's care or treatment of Jahi, but released a statement late Thursday evening imploring the family to allow the hospital to openly discuss Jahi's case. Hospital officials have repeatedly cited state and federal medical privacy laws in declining to comment.
"We implore the family to allow the hospital to openly discuss what has occurred and to give us the necessary legal permission -- which it has been withholding -- that would bring clarity, and we believe, some measure of closure and deeper understanding of this medical case," Chief of Pediatrics David Durand said in the statement."


Following article is hospital's statement (apparently in full).
"Our hearts go out to the family and friends of Jahi McMath. This is a tragic situation.
We want the public to know that the family has not permitted us to discuss the medical situation. We are unable -- without the family's permission -- to talk about the medical procedure, background or any of the details that are a part of this tragedy. Details that would provide transparency, openness and provide answers to the public about this situation.
We implore the family to allow the hospital to openly discuss what has occurred and to give us the necessary legal permission -- which it has been withholding -- that would bring clarity, and we believe, some measure of closure and deeper understanding of this medical case.
Many of the statements made by the family and its attorney must be taken in the context that they will not allow CHO to discuss the case and provide the information necessary for there to be a fuller understanding."
David Durand, M.D.
Chief of Pediatrics
Children's Hospital & Research Center Oakland"

The BBM, UBM above speaks volumes to me.

Undoubtedly the patient's family is in a club (brain dead relative) nobody else ever wants to be a member of.
But the hosp and other health care providers are also in a club (H/C providers bound by HIPAA) that cannot publicly speak to the issues, because the family will not authorize them to do so.

 

[CarolinaMoon]

My sister was 10 back in the 50's when she had her tonsils and adenoids out. She was scheduled to be in the hospital for 2 days after the surgery. She also hemorrhaged and nearly died. She was in the hospital for nearly a week and needed private duty nurses round-the-clock. We were fortunate that both our next-door neighbors were RN's and they donated their services. They took good care of her and watched her like a hawk all that time. She made a full recovery without all the medical advances that have taken place since then.

Even today, any surgery is dangerous. The hospitals spell that out in great detail when you sign all the papers on admission. These parents signed those papers and never believed it could happen to their child and my heart breaks for them.

I do believe, as others have said, that a second opinion may help them. I would also hope they get some religious counseling from their pastor or other person who could help them to cope. I notice that they do have a lawyer, though.

 

[SophieRose]

Two years ago, also at Christmastime, a toddler was shot in the head in a shootout in Oakland. He, too, was treated at Oakland's Children's Hospital and was declared brain-dead. The parents also did not want to disconnect life support and went to the media. They were allowed a third opinion (it takes two separate opinions in California before it is declared a legal brain death) and decided to remove life support.

http://www.sfgate.com/bayarea/article/Oakland-boy-may-be-removed-from-life-support-2393175.php

Two tests at Children's Hospital Oakland have confirmed that Hiram Lawrence has no brain activity, and an outside pediatrician has agreed with the findings, the Rev. Roosevelt Taylor said Thursday afternoon.

"I think reality just hit them," Taylor said. "Emotions are everywhere."

 

[BeginnersLuck]

Them not giving the hospital permission to discuss, speaks volumes to me. Again, here is another case where due to legalities, we can't hear the full story from both sides.

MSM gives the one side the platform and the picture to the public is painted as though the other side is horrible.

I found one instance where a child went home on life support that was brain dead. I'm sure there are many more out there.

Here is more on the medical criteria for brain death

http://en.wikipedia.org/wiki/Brain_death#Medical_criteria

Legal definition of death

http://www2.sunysuffolk.edu/pecorip/scccweb/etexts/deathanddying_text/legal_definition_death.htm

The links above, still aren't answering my questions. I'm wondering since she has been legally declared dead, is the hospital legally required to follow certain procedures. Are they being sensitive as possible to the family and holding off following through with these procedures that they may be legally required to do.

Legally can the family remove the childs body from the hospital and relocate? If the family can do this, then why aren't they? Lot's of questions arise when I think about this.

 

[SophieRose]

Legally can the family remove the childs body from the hospital and relocate? If the family can do this, then why aren't they? Lot's of questions arise when I think about this.

Hospitals aren't in the long-term health care business, and any nursing homes wouldn't take a patient unless insurance or the patient's family was paying, doubt any insurance pays for brain death long term care. The other article you posted from 1994 said the hospital paid for the young girl to be taken care of at home. It would be very expensive.

 

[BeginnersLuck]

Hospitals aren't in the long-term care health business, and any nursing homes wouldn't take a patient unless insurance or the patient's family was paying, doubt any insurance pays for brain death long term care. The other article you posted from 1994 said the hospital paid for the young girl to be taken care of at home. It would be very expensive.

I agree. Unless the family has resources to pay for the care out of pocket in another location then it's not going to be possible.

Nor, do I feel the hospital should be required to alter their procedures. Doing it for one family would open up the door in which they would have to do it for all. I believe the hospital is trying to be as kind and sensitive as they can with the family, but they are under no obligation to do so. The hospital cannot just keep her there for months or years on life support when there is zero chance she will miraculously recover. They family has to be willing to come to agreement with the hospital.

I'm not trying to be insensitive with the emotions of the family, I'm just trying to analyze this from a non emotional perspective.

Hopefully they are working on that other opinion for the family. I'm afraid that the family may not be willing to let go no matter what they hear and the hospital will have to take steps that the family doesn't agree with.

 

[SophieRose]

Family is holding a vigil around Jahi, surrounding her so that no one can touch her

http://www.sfgate.com/bayarea/article/Family-of-girl-declared-brain-dead-afraid-of-5080441.php

Relatives of Jahi McMath said officials at Children's Hospital Oakland had summoned them to a late-afternoon meeting, hours after the family had written them a letter asking doctors not to remove her from life support before Christmas - and to give them two days' warning if they were going to do so, which would allow them to get a court order.

They also asked that Jahi be given a feeding tube instead of a sugar drip in her IV.

 

[SophieRose]

http://abclocal.go.com/kgo/story?section=news/local/east_bay&id=9366922

Children's Hospital responded by scheduling an afternoon meeting between the family and the hospital's chief of pediatrics. Among the issues they had planned to discuss was what the family says should be the hospital's responsibility -- the cost of caring for a legally brain dead 13-year old and keeping her attached to a ventilator.

 

[StephanieH]

In Texas, there is a state law that says if there are no funds to pay for it, a person who is brain dead or terminally ill can be removed from life support at the hospital's discretion. (Yes, it was put into law by then Governor George W Bush) I don't know if CA has a similar law, but they may run into this. If the insurance company refuses to pay any longer, then the family would be responsible for payment.

I am not saying I agree with the law, just saying that they may run into this. I know they aren't thinking about costs right now, but they will eventually have to face it. If there is no chance she will recover, it is really expensive and futile to keep her alive.

 

[SophieRose]

Article from 2001:
http://www.wired.com/science/discoveries/news/2001/04/42847?currentPage=all

Doctors sometimes confuse families by asking their permission to turn off the ventilator. Annas said that since the person is dead, the issue of turning off the ventilator should never be brought up with the family.

In some cases brain dead patients were even sent home to their families on ventilators.

A study published in Neurology in 1998 found that a boy diagnosed as brain dead at 4 years old had been living at home for 12 years. His mother sent the researchers a picture of him wearing a bathing suit floating on a raft in their pool.

"It's a new class of dead people that's unusual," Youngner said.

 

[StephanieH]

That's not healthy.

 

[al66pine]

I just really cannot believe that a hospital in the middle of such a media storm would be so very insensitive in speaking with the parents.

And although I am sure her parents aren't in any kind of place to hear this, if they *did* choose to take her off life support she could possibly help other people have a chance at life, giving her own death some meaning.

BBM
Minette,
Respectfully, pls identify the 'insensitve' language in the hosp's following statement, in MSM story I posted earlier tdy http://www.insidebayarea.com/news/ci_24761285/oakland-family-brain-dead-13-year-old-girl.

Following article is hospital's statement (apparently in full).
"Our hearts go out to the family and friends of Jahi McMath. This is a tragic situation.
We want the public to know that the family has not permitted us to discuss the medical situation. We are unable -- without the family's permission -- to talk about the medical procedure, background or any of the details that are a part of this tragedy. Details that would provide transparency, openness and provide answers to the public about this situation.
We implore the family to allow the hospital to openly discuss what has occurred and to give us the necessary legal permission -- which it has been withholding -- that would bring clarity, and we believe, some measure of closure and deeper understanding of this medical case.
Many of the statements made by the family and its attorney must be taken in the context that they will not allow CHO to discuss the case and provide the information necessary for there to be a fuller understanding."
David Durand, M.D.
Chief of Pediatrics
Children's Hospital & Research Center Oakland"

Minette,
The only 'insensitive' language I seen/read/heard is what the family said the hosp/reps said.

I was not at any meeting of family and hosp & health care reps,
to hear for myself what hosp reps said (other than stmt I quoted above).

I doubt if anyone here on W/S was there to hear it personally.

JM2cts and I could be wrong.:seeya:

 

[SophieRose]

Salt Lake City Case in Oct 2004
http://allnurses.com/pediatric-nursing/brain-dead-child-82020-page2.html

Doctors say 6-year-old brain cancer patient Jesse Koochin is legally dead, but Primary Children's Medical Center on Wednesday agreed not to file a death certificate for the boy.

The promise ended a court battle that began Oct. 13, the day hospital physicians told Steven and Gayle Koochin of Florida they would remove the brain-dead child from life support.

The couple, who came to Utah seeking alternative treatments for Jesse, obtained a restraining order that day preventing the hospital from pulling the plug. The Koochins took their son home to a Salt Lake City area apartment two days later, where they continue to care for him with the help of nurses.

After a court hearing Wednesday, Steven Koochin said his son - who remains on a ventilator - is reacting to cold and to touch with limb and eye movement.

"Right now, Jesse is still as he was when he left Primary Children's - on the fence," said his father. "It will take a miracle, and that's what we are praying for."

He died in Dec 2004.

 

[EmmaliLucia]

My niece is having her tonsils removed tomorrow. I wasn't worried about it at all until I read this story.

My tonsils have been giving me problems for YEARS. Now I'm horrified to do anything about it. Goodluck to your niece and I hope she has a easy recovery!

 

[SmoothOperator]

I have been reading about this young girl for now over 4 hours..in my just attempting to grasp what actually is going on(based on very one sided information)..

Honestly, I believe that there is very much misconstrued details being reported..that's jmo, tho based on scouring any/everything I could possibly find about Jahi's situation, specifically..as well as getting a better understanding into how drastically different being declared brain dead is, as opposed to being in a coma, or vegetative state.. Which IMO, I honestly believe that many are mistaking these for all being similar "states", when reality is that they are in no way even related or similar.. Being brain dead is nothing remotely similar to comatose, or vegetative state.. Brain dead is not only irreparable, but it also is not an easy determination to be made, and is not made in haste, but rather many, many tests, and repeating of tests that lead to this fact being determined..

From what I have now gathered and understand it is not doctors that were in any way whatsoever involved with Jahi, Jahi's surgery, post op care, etc..but rather uninvolved doctors with no personal tie, gain, or loss wrt Jahi's being determined as brain dead or not.. It is totally unrelated doctors with nothing to gain or lose who performed, and re performed these all important regime of testing that went into their final determination of young Jahi in fact being brain dead.. While for some that may be of no importance, but to me it just shows an even greater layer of certainty..unbiased certainty that has no gain or loss from their very important determinations of this young girl's life being over..

I also understand that the actual "say-so" is(or I should say, *was* prior to the attorney, and then the courts involvement) in the hospitals hands regarding they're being able to turn off the life support for this young girl who is brain dead.. Even so, this hospital is going beyond what they're technically allowed to do in they're having already cut off life support.. Yet they have not..and it needs to be noted that this IS NOT due to court injunctions, involvement, etc..before the family even sought to involve the courts this hospital had the legal right to go ahead and turn off the life support for a young patient who had been determined as brain dead.. But the hospital did not go that route..much different is it that they have attempted to show this family compassion in a time of the greatest of difficulties in accepting their young, loved one is brain dead and that no matter what technology, no matter what amount of money available them for the best of the best..no matter, Jahi is brain dead and this cannot be reversed.. The hospital knows this therefor, IMO they did not keep the life support machines hooked to Jahi for any benefit to this young patient, or to in any way provide a certain level of care for their young patient.. This hospital was in no way legally, ethically, or morally expected to continue the life support..

IMO the SOLE PURPOSE for this hospital staff's having chosen to NOT cease the life support machines was out of compassion for her family.. Jahi was kept on the machines in an attempt to allow this family the time to come to terms with the inevitable fact that the hospital staff has been fully aware and understanding of since the time of the very strict regime of testing and retesting was completed with the sad results of her being brain dead..

I do not for one minute believe that this hospital staff yelled at this family's faces that Jahi is DEAD, DEAD, DEAD, DEAD! in the most cruel, heartless way imaginable as has been relayed to us, the public as having taken place.. The actions of this hospital staff SPEAK DIRECTLY TO THE COMPASSION OF THOSE IN CHARGE IN THEY'RE HAVING NOT CEASED LIFE SUPPORT, EVEN THO, THEY HAD FULL LEGAL ABILITY AND RIGHT TO DO SO!..

IMO, THEY DID THIS FOR ONLY ONE PURPOSE THAT HAS NOTHING WHATSOEVER TO DO WITH THEIR PATIENT CARE, BUT RATHER ONLY TO DO WITH A MEANS OF BEING COMPASSIONATE TOWARDS THIS FAMILY DURING THEIR GREATEST DIFFICULTY IN THIS LIFE...FACING THE FACT THAT JAHI DIED LAST WEEK!

I honestly, wholeheartedly believe that this was done for the family in hopes of they're coming to understand exactly what "brain dead" means in being nothing remotely similar to coma or vegetative state.. And once understanding that brain dead does in fact mean that their young loved one has essentially died and that her "life" is ONLY BEING SIMULATED BY MACHINES.. These issues may seem simple from the outside in understanding what brain dead actually means, and just what stringent protocols are followed to determine a person is technically deceased..but of course in the midst of the trauma and pain this family, understandably, could/would not grasp, or want to grasp what the full meaning is...

IMO this hospital staff's actions showed their compassion for this family far superceded what they were legally, ethically, and even morally within their rights to do in going forward with cutting off the life support..

I completely understand this family's pain and confusion, combined with heaping loads of a protective wall of denial having been solidly built around themselves..sadly all under false pretenses..false hopes..and in the end meaning only greater pain, suffering, and heartache for them to eventually HAVE TO DEAL WITH in accepting their young Jahi has passed on from this earth...

Imo, this hospital has been very wrongfully vilified in a very severe way, and with the family withholding the hospital from in any way whatsoever being able to discuss the entire other side of this story only adds layer upon layer upon layer of difficulty... Why?.. IMO, sadly I believe that is solely due to attorney involvement...and IMO I can see his reasoning for directing the family to withhold their allowing the hospital to speak ABOUT EVEN THE MOST MINUTE DETAILS..IMO, that in no way whatsoever is in the interest of Jahi or her family's well being(physically, mentally, emotionally)..and this issue greatly disturbs me in the "story" being perpetuated and fed to the media, and thereby the public, as in us..the "story" is in no way complete, accurate, or in anyone's(except for the attorneys and in the interest of monetary gain) benefit whatsoever(again in terms of physically, mentally, emotionally)..

It is such a sad, tragic situation that is unfolding, and IMO, the great difficulty has been compounded times a thousand with certain people's in no way acting in the best interest of Jahi's memory, or in the best interest of her very, very broken loved ones. Its just all the more tragic and sad..

 

[Tulessa]

Every surgery has risks, routine or not.
And one can not recover from brain death.

Nothing is impossible. God will make the finale call. God bless this family!

 

[Zuri]

Smooth Operator, ITA. You wrote an incredible summary of what I also believe is happening. I fully understand this family's despair and grief and for not wanting to let Jahi go. Accepting that she has already gone is a hard thing to do, for anyone. IMO their attorney seems to be fanning the flames and is doing a seemingly huge disservice to this family. I would hope that he would be an advocate for Jahi too, and if he is not well versed in brain death, he needs to talk with someone who is.

The only thing I am not understanding is the letter from the head of Pediatrics. Is he trying to want to explain things for the general public's benefit? IMO the longer she stays on the vent, the higher incidence of infection, body system failure etc. This young girl needs to be allowed to die with dignity, not by futile resuscitation efforts. JMO