Debating another brain death test for Jahi McMath

[dawbs]

Apparently, there is some discussion on doing another brain death test on Jahi.  And apparently it's being debated because of the risk of detaching her from the ventilator.
http://www.santacruzsentinel.com/article/NE/20180320/NEWS/180329962

(SOme of this is follow up to the New Yorker article recently:  https://www.newyorker.com/magazine/2018/02/05/what-does-it-mean-to-die
Which was in depth and depressing as fuck)

[Jellybean]

That New Yorker article is heartbreaking. My own living will states that I don’t want to be kept alive artificially (it’s a bit complicated because I’m already on artificial nutrition, and have been for several years) if I’m not able to ‘interact meaningfully with my environment’ - I can’t imagine that donors would be remotely interested in any of my organs now, but I’ve been on the organ/tissue donor register since I was 14 (with the permission of my parents) so I have an emotional thing about staying on it. 

I’m so torn about Jahi’s situation. I think that maybe we should be more open to understanding that the diagnosis of brain death, like so many other things in medicine, is a best guess, based on the information currently available. I’m prepared to be allowed to die if I’m in that situation, but maybe that’s a personal decision? I don’t know...

I wonder if there’s a religious component to it. My fundie mother wants all possible interventions, no matter how futile; my father, who was humanist, wanted to be calm and not in pain, and to have his family around him, and not have any unnecessary heroics. My mother says that she can’t wait for the day when she gets to go to heaven and be told that she was a ‘good and faithful servant’ but her end-of-life wishes seem to belie that.

[candygirl200413]

The entire story is just so sad. But this sentence confused me from the article:

Quote

If Jahi is deemed alive, the family could be entitled to more than the cap of $250,000 on medical malpractice suits involving children who die as a result of surgery.

How does the family get the money if she's considered alive from a fund that is for children who die during surgery?

[Cleopatra7]

After reading the NYer article, I have more compassion for the McMath family. Given how badly the medical team overseeing Jahi’s surgery treated her and her family, it makes sense that they wouldn’t trust “experts” to decide whether she is alive or dead. If nothing else, this case illustrates what can happen when racial bias infects medical care, and why hospitals need to be more diligent in rooting out such prejudices. It’s incredible to me that Jahi was throwing up blood for hours and the staff treated it like it was no big deal. It makes me even more anxious about the surgery I’ll be having in three weeks.

[Coconut Flan]

15 minutes ago, candygirl200413 said:

How does the family get the money if she's considered alive from a fund that is for children who die during surgery?

There isn't a fund for children who die in surgery.  They are suing the hospital and the hospital or their insurance would pay.  There is a state law here in California limiting/putting a cap on the amount the family could win in a malpractice suit if Jahi was ruled to have died.  This is no doubt part of their desperate fight to prove that she is alive.  I don't believe there is a cap for malpractice for a living child.

[starfish]

It's my belief that this case is all about the money.  My compassion is reserved for Jahi. It seems like she's being propped up with every medical intervention possible and it's just ghoulish. 

[unsafetydancer]

And here's this thing again

 

I agree that it sounds like the surgical team didn't act fast enough when it was obvious that Jahi was bleeding far too much; I have had tonsil surgery and had no bleeding whatsoever but I also read somewhere that Jahi's blood vessels were unusually close to where her tonsils were which may have led to the problem. I think her family certainly have grounds to sue the hospital for malpractice. 
I don't think she needs to be kept on the ventilator though. It's been over three years and she still hasn't shown any signs of waking up. I think her family need to let her go. 
 

[SilverBeach]

I let my beloved mother stay on a ventilator in the ICU for a week before discontinuing it. True, she was 91, but the ventilator itself is awful, I cannot imagine her being on it for three years if she was "alive". Mom was not going to recover, and the vent was prolonging her death, not extending her life. There is a difference. No way I could have watched her in a lifeless condition for years, technical status notwithstanding. How Jahi's mom can stand doing so for years is beyond me, I found that last week of my mother's life totally agonizing. I wish she would let her go with dignity. Letting go of someone you love is so hard, but to engage in this kind of self-deceit is mindblowing to me. I could not stand to see my daughter like this. It's a terrible situation and unfortunate that the law has allowed it to go on for so long. I hope Jahi's mom gets the help that she needs to face reality.

[Briefly]

I agree, I don't see how that poor girl could be alive in any way. I hope the mom gets some support and help, I feel very badly for her. But her daughter is gone and brains don't regenerate. They can heal from damage, I know that from my brain damage. But they don't re-animate.

I was so glad that my mom had a DNR when she died. She did not want to be kept alive if she was gone, and we honored her wishes because that is that she wanted. It was hard, but none of us have any regrets or doubts that we did what she wanted.

[melon]

3 hours ago, SilverBeach said:

I let my beloved mother stay on a ventilator in the ICU for a week before discontinuing it. True, she was 91, but the ventilator itself is awful, I cannot imagine her being on it for three years if she was "alive". Mom was not going to recover, and the vent was prolonging her death, not extending her life. There is a difference. No way I could have watched her in a lifeless condition for years, technical status notwithstanding. How Jahi's mom can stand doing so for years is beyond me, I found that last week of my mother's life totally agonizing. I wish she would let her go with dignity. Letting go of someone you love is so hard, but to engage in this kind of self-deceit is mindblowing to me. I could not stand to see my daughter like this. It's a terrible situation and unfortunate that the law has allowed it to go on for so long. I hope Jahi's mom gets the help that she needs to face reality.

My father had Congestive Heart Failure.He went into the hospital because he had pneumonia.While he was in the hospital,then they found out he had COPD,and his kidneys were failing.They tried other things to help him breathe,but ended up putting him on a ventilator...while he was conscious.He was on it for a week,when one of my brothers called and said that Papa had conveyed his wish to be taken off the ventilator,come what may,he was 82.The quality of his life was beyond poor.He couldn't talk ,read,or drink coffee.But,what happened is the ICU nurse called another one of my brothers,he told him his age and how long he had been an ICU nurse,he said that my father was showing signs that his death was imminent.He said the family  needed to come,and my three brothers went and were there with him when he passed.I agree with you SilverBeach.Our youngest son was in a car accident ,and was ejected from the vehicle.He sustained a devastating closed head injury.I remember how I felt,seeing him in that state ,on a ventilator.I felt utterly exhausted and depressed.At first,I was in denial,I was angry when they told me about my son's situation...that's he'd never be the same etc.But I knew my son would no t have wanted to remain in such a condition, so we chose to let him go and we chose organ donation.It was so hard to lose him,you don't think you will outlive your child.I still miss him and think of him often.But the difference was my father had lived a life,he was 82 years old,my son's was cut short at 26.

[starfish]

7 minutes ago, melon said:

My father had Congestive Heart Failure.He went into the hospital because he had pneumonia.While he was in the hospital,then they found out he had COPD,and his kidneys were failing.They tried other things to help him breathe,but ended up putting him on a ventilator...while he was conscious.He was on it for a week,when one of my brothers called and said that Papa had conveyed his wish to be taken off the ventilator,come what may,he was 82.The quality of his life was beyond poor.He couldn't talk ,read,or drink coffee.But,what happened is the ICU nurse called another one of my brothers,he told him his age and how long he had been an ICU nurse,he said that my father was showing signs that his death was imminent.He said the family  needed to come,and my three brothers went and were there with him when he passed.I agree with you SilverBeach.Our youngest son was in a car accident ,and was ejected from the vehicle.He sustained a devastating closed head injury.I remember how I felt,seeing him in that state ,on a ventilator.I felt utterly exhausted and depressed.At first,I was in denial,I was angry when they told me about my son's situation...that's he'd never be the same etc.But I knew my son would no t have wanted to remain in such a condition, so we chose to let him go and we chose organ donation.It was so hard to lose him,you don't think you will outlive your child.I still miss him and think of him often.But the difference was my father had lived a life,he was 82 years old,my son's was cut short at 26.

I just wanted to say how sorry I am for the loss of your son. You were so brave to choose organ donation after such a devastating loss. I feel sure your son would have been proud of your strength in the face of such a terrible tragedy. I know you will always feel that loss and miss him. Please know I'm thinking of you tonight, and I wish you peace, And I admire you so much for your choice of organ donation and saving other lives. 

[melon]

Thank you for your kind words,Starfish.

[Briefly]

23 hours ago, melon said:

My father had Congestive Heart Failure.He went into the hospital because he had pneumonia.While he was in the hospital,then they found out he had COPD,and his kidneys were failing.They tried other things to help him breathe,but ended up putting him on a ventilator...while he was conscious.He was on it for a week,when one of my brothers called and said that Papa had conveyed his wish to be taken off the ventilator,come what may,he was 82.The quality of his life was beyond poor.He couldn't talk ,read,or drink coffee.But,what happened is the ICU nurse called another one of my brothers,he told him his age and how long he had been an ICU nurse,he said that my father was showing signs that his death was imminent.He said the family  needed to come,and my three brothers went and were there with him when he passed.I agree with you SilverBeach.Our youngest son was in a car accident ,and was ejected from the vehicle.He sustained a devastating closed head injury.I remember how I felt,seeing him in that state ,on a ventilator.I felt utterly exhausted and depressed.At first,I was in denial,I was angry when they told me about my son's situation...that's he'd never be the same etc.But I knew my son would no t have wanted to remain in such a condition, so we chose to let him go and we chose organ donation.It was so hard to lose him,you don't think you will outlive your child.I still miss him and think of him often.But the difference was my father had lived a life,he was 82 years old,my son's was cut short at 26.

I can't imagine how hard it must have been, I am so sorry for your loss.

[punkiepie]

I read the NYer article and came away thinking it was even more heartbreaking than I had previously thought. I’m a nurse and I come from a family of medical professionals- it has never been a question for me about how I want to live if such a situation occurred; if my brain is gone, if everything that makes me, me isn’t there anymore, then I am already gone, please let me go.  In this case, the real question hinges on “how brain dead is dead?” Even the doctor who is now on their side says that while he wouldn’t no longer call her brain dead, she is extremely disabled and always will be. So even if it’s not a textbook case of brain death, she has no hope of a meaningful recovery. Now for me, I know that I would never ever want to live that way or put my family through such an ordeal and if I could be an organ donor and give someone else the chance at living, that’s what I would want. But I also sympathize with jahi’s mom, especially if what the article says is true- Jahi didn’t want the surgery and her mom convinced her to have it. I can’t imagine the guilt she must feel, so it makes sense that she is trying to keep her daughter “alive” and rationalizing it by deluding herself into thinking Jahi has a chance of waking up one day.  It doesn’t make it right, but I get it.

Also, I saw something upthread about this being all for money, and I kinda disagree with that. Jahi is dead in California and dead according to the United States federal government- that’s why her family can’t claim her on the taxes. The amount of money they would get from a wrongful death suit would be substantial and Medical malpractice suits also have a cap on them. I can’t see how it would be in their benefit to have her declared alive just for the additional money, when they would then just have to use that money to care for her indefinitely. Because if they get her declared alive, they couldn’t very well go back and remove the ventilator after they win the money. 

[PennySycamore]

@melon,  I am so very sorry for he loss of your beloved son.  

[Coconut Flan]

14 hours ago, punkiepie said:

Also, I saw something upthread about this being all for money, and I kinda disagree with that. Jahi is dead in California and dead according to the United States federal government- that’s why her family can’t claim her on the taxes. The amount of money they would get from a wrongful death suit would be substantial and Medical malpractice suits also have a cap on them. I can’t see how it would be in their benefit to have her declared alive just for the additional money, when they would then just have to use that money to care for her indefinitely. Because if they get her declared alive, they couldn’t very well go back and remove the ventilator after they win the money. 

The cap for suing in Cali would be on the wrongful death suit.  What they were or possibly still are doing was trying to overturn/negate/have rescinded whatever the term is the Cali death certificate. 

[starfish]

It just makes me angry what they are doing to this child. It's gruesome and ghoulish. I'd like to think they are doing it out of some kind of misguided love, but the skeptical side of me  it's all about the money. Also, they are freely criticizing  the hospital, but the hospital is prohibited from defending themselves due to the pending litigation and also privacy laws. I do recall, though, the family members themselves discussing their their non-compliance with the recovery orders (giving Jahi a cheeseburger right after she woke up, suctioning off blood themselves instead of summoning assistance, etc).

Also, this was Jahi's third surgery related to her sleep apnea. I wonder if they even tried a CPAP machine. Maybe they tried it and it didn't work out. But having three surgeries for sleep apnea is fairly unusual.

I noticed one of the articles mentioned that the cost of keeping Jahi in ICU in New Jersey was $150,000 a week. That boggles my mind.

 

And I know we have a lot of different opinions here on FJ. I know my words seem harsh to Jahi's family. I will try to make them more measured. I just have such sympathy for Jahi, I just can't stand what they are doing to her. It seems like they are torturing her, and I don't understand it. Maybe it's their guilt or love, but it just seems very wrong to me.

 

Also, I don't have any spoilers, but the spoiler box showed up in this post and a I can't seem to make it go away!

[LadyCrow1313]

My mother, who passed away a year ago today, had been in the hospital for about two weeks; she'd been on a ventilator & had rare moments of lucidness (which only lasted a couple of seconds each time). Her body was shutting down & there'd been talk of putting her on dialysis, but we (the family) decided against it. It wouldn't have brought her back, wouldn't have truly woken her up, & we knew it would've prolonged her suffering.

I know how fucking brutal it is to make the "final decision" on someone else's behalf. I do truly have sympathy for Jahi's family, but enough is enough. Time to let her go & finally be at peace.

[Briefly]

5 hours ago, LadyCrow1313 said:

My mother, who passed away a year ago today, had been in the hospital for about two weeks; she'd been on a ventilator & had rare moments of lucidness (which only lasted a couple of seconds each time). Her body was shutting down & there'd been talk of putting her on dialysis, but we (the family) decided against it. It wouldn't have brought her back, wouldn't have truly woken her up, & we knew it would've prolonged her suffering.

I know how fucking brutal it is to make the "final decision" on someone else's behalf. I do truly have sympathy for Jahi's family, but enough is enough. Time to let her go & finally be at peace.

We had to make that decision for our dad, it was brutally hard but it was the right thing to do.

[Terrie]

The NYer article was discussed in the other thread. It is VERY misleading and slanted towards the family's views. It doesn't mention that many of the doctors on the family's side reject the concept of brain death. One has never even examined her. It doesn't mention that tests have shown her auditory pathways are gone and she cannot respond to audio commands, because she is neurologically incapable of hearing them, whatever the state of her higher brain functions. It's sad, not because Jahi might, maybe, sometimes, be aware (she's dead and gone) but because her family has trapped themselves in this farce.

[candygirl200413]

@Terrie That was my main issue with it as well. Just the entire thing was so skewed towards them. I wonder how long they will keep her on it. 

[LiterallyBananas]

I have a lot to say, but I'll try and keep it short --

My heart breaks for this family and the loss of their sweet girl. It was a routine surgery, and no one could have expected this outcome. I can't even imagine how devastating this has been for them, and I can see why it's been hard for them to let go.

Honestly, it sounds like the surgeon neglected to take the post op complications seriously and, for lack of a better term, really fucked up. Just based on the wording of the articles mentioned above, it sounds like nursing staff genuinely tried to advocate for the child and escalate care, and they knew something wasn't right. As a nurse, it's a horrible situation to be in; you feel so helpless. 

In regard to brain death testing, I work neuro ICU. The testing is strict and definitive (e.g., the person has to have a certain body temp, meds that can mimic brain death are taken into consideration and given adequate time to metabolize, etc), and I actually find it nauseating bc some stimuli used are so noxious. My knowledge of the nervous system is still grossly limited, but it doesn't seem possible for a person to simultaneously have brain function and remain non-reactive to the reflex portion of testing. It looks too painful.

In my state, once a qualified physician declares brain death, the patient is legally dead. Time of brain death determination is the actual time of death put on the death certificate, regardless of the time of cardiac death. From what I understand, because of this, the hospital can legally take a patient off a vent after they're considered brain dead, regardless of the family's wishes. (Don't quote me on that last part, though. I'm still new to the specialty, so that's something I haven't experienced.)

What I want to know is how the family has kept the girl functioning from a cardiac standpoint. Even with a vent, invasive meds like pressors, etc are usually required to maintain adequate circulation, and the amount of time they can be used is limited. Without the brain, you still can only keep blood pumping for so long, hence, how involved the algorithm is for preserving a body for organ donation (after brain death).

[feministxtian]

On 4/12/2018 at 4:50 PM, Briefly said:

We had to make that decision for our dad, it was brutally hard but it was the right thing to do.

I had to do that for my mother. She wasn't brain dead, more like PVS. However, I made the choice to not force artificial nutrition or hydration. Her kidneys were shutting down so between that and the last massive stroke it wasn't a hard choice. But it sucked anyway. 

[Cleopatra7]

This post from Skepchick sums up what I was trying to say upthread in a better manner:

http://skepchick.org/2018/03/racist-reasons-tiffany-haddish-drinks-turpentine/

“Even once slavery was abolished, black people in the United States had no reason to use or trust established doctors. You’ve probably heard of the Tuskeegee Experiment, in which hundreds of black men with syphilis were purposely left untreated for 40 years so that doctors could study the progression of the disease. The only reason it ended was because journalists found out and exposed it. That’s just the biggest, most well-known example, but Harriet A. Washington’s book Medical Apartheiddetails countless other examples from US history, including the still-pervasive myth that black people feel less pain than white people or that they need a stronger dose of x-rays. She even points out that some of our historical medical heroes have racist underpinnings, as with James Marion Sims, who pioneered techniques to help heal women after they gave birth. He tested those techniques first on slaves, operating on helpless black women without even giving them anesthetic.”

“It’s this horrific legacy of medical cruelty that has left many black people, particularly those who are poor and under-educated, to foster an entirely justifiable distrust of doctors, scientists, and the government.”

Given this background and what appears to be gross mismanagement of Jahi’s surgical aftercare, I can’t blame her mother to some extent for not trusting the doctors who were telling her her daughter was dead. At the same time, I do believe that Jahi is dead; even if her body continues to develop physically in some ways, she’s never going to be “normal” in any sense of the world because whatever made Jahi Jahi is long gone. I think one day this case will be a teaching opportunity in medical schools about how not to treat and communicate with the families of minority patients, just like the case of Lia Lee, a Hmong girl with severe epilepsy who went into a coma because of cultural differences between how the Hmong and American cultures viewed epilepsy:

https://en.m.wikipedia.org/wiki/The_Spirit_Catches_You_and_You_Fall_Down

[SilverBeach]

On 4/12/2018 at 6:50 PM, Briefly said:

We had to make that decision for our dad, it was brutally hard but it was the right thing to do.

I made the decision to remove my mom from the vent, and I totally agree.