13 Year old gir declared brain dead has now officially died

[Mouse House Mama]

I have been in a similar situation with a family member. Fortunately, we were all rational beings that understood he was essentially dead and would never be coming back.

We made the decision to take him off life support after 2 days.

So yes, I have walked in their shoes and they are being irrational and need someone to step in and say enough for the sake of that poor child.

But you were being rational according to your beliefs. That doesn't make that the only rational decision.

 

[15isto2]

I will say that I personally would not want to be taken off life support. I have been very clear to my family about it. Some may call it selfish but I do believe in miracles and how does anyone really know if the ill person knows what is going on?

What financial arrangements have you made to ensure this will happen?

 

[Mouse House Mama]

What financial arrangements have you made to ensure this will happen?

That's a good question. Of course we are trying to plan for our future the best that we can and while I personally want to be kept on life support if God forbid the need arose I also would not want to be a burden to my family. However, I think I kind of view it the same way that people who go through severe illness do. It sounds flippant but I think you just figure it out. There are tons of people in these types of facilities. I doubt they are all independently funded so the money has to come from somewhere. I will be honest and say that I never really thought of the money aspect. I suppose that makes me sound like a dope and in some ways I agree but I am hopeful that we will never have to cross this path.

 

[bcla]

My heart breaks for this family. I cannot even fathom the level of grief that they are going through. I pray for them.
That being said- I think there are people on this thread who simply think that they should pull the plug and that's it and move on. That's okay if that is what you want and agree to. I will say that I personally would not want to be taken off life support. I have been very clear to my family about it. Some may call it selfish but I do believe in miracles and how does anyone really know if the ill person knows what is going on? Just because someone went to school doesn't mean they know it all. We have all seen cases where "miracles" occur. These things aren't black and white. This is my opinion and it's okay if this isn't for you. I respect that your (general you of course) choices might be different. I just think that in the end, especially in a situation like this, the family should make the decisions. I support their choice. JMHO. YMMV.

She's not on life support. The best description is that she's on death support. This isn't a misdiagnosis of brain death as has happened before. This is a case where a half dozen preeminent physicians have run a full battery of tests and determined there is zero brain activity. This wasn't a second opinion, but a third, fourth, fifth, and sixth. The medical community recognizes that she's dead, as does California law.

The only way she comes back is if she is resurrected. She is gone. Only artificial means are keeping her body from decomposing. You would actually want to be kept on "life support" when you're dead? If you've got the means to keep fluids pumped through your otherwise dead body like Lenin, then go for it. Millions of people die in the US every year, and frankly each and every otherwise dead body could be kept going if this level of mechanical treatment is given using a ventilator.

So what are you suggesting? Perhaps that any time a physician declares death that we simply ignore it and hope for a miracle? There are limited pediatric ICU rooms in Northern California, and there's currently two being occupied when they could be used for life saving or life sustaining care. Children's Hospital Oakland has the only Level 1 pediatric trauma center in the area, and I'd hate for someone to be displaced or have to be transported in a fragile condition because they're reserving one right now to keep a dead body ventilated.

She's dead. No miracle.

 

[lsyorke]

What financial arrangements have you made to ensure this will happen?

Sadly few think of this aspect. It's a huge cost to maintain a person on life support. It's not the pretty picture you see on tv. It's skin breaking down(as a wound care nurse this is a horrible thing to try and manage), it's sepsis from IV lines, it's pneumonia from being on a vent long term, it's kidney failure as organs start to shut down, it's medication reactions to try and keep basic functions going and it's the toll taken on the family who has made this decision. As a nurse I wouldn't want my name on this little girls chart because this is a lose/lose for all involved and it will end up with everyone in court. I applaud the hospital for not wanting to get their staff involved.

My heart goes out to this family for what happened to their daughter, but reality has to be addressed. Maybe I'm to pragmatic, having seen this situation play out many times, and having spent hours upon hours taking care of people that should never have been kept "alive". Brain death is not a conclusion come to lightly.

 

[LilyWDW]

My heart breaks for this family. I cannot even fathom the level of grief that they are going through. I pray for them.
That being said- I think there are people on this thread who simply think that they should pull the plug and that's it and move on. That's okay if that is what you want and agree to. I will say that I personally would not want to be taken off life support. I have been very clear to my family about it. Some may call it selfish but I do believe in miracles and how does anyone really know if the ill person knows what is going on? Just because someone went to school doesn't mean they know it all. We have all seen cases where "miracles" occur. These things aren't black and white. This is my opinion and it's okay if this isn't for you. I respect that your (general you of course) choices might be different. I just think that in the end, especially in a situation like this, the family should make the decisions. I support their choice. JMHO. YMMV.

This is NOT life support. They are simply forcing the body, through mechanical measures, to continue doing specific tasks. There is no "life" left. The brain is dead. Gone. Not working any longer. There is nothing to have come back. The only reason there is anything that looks like "life" is because of the machines and fluids forcing the lungs to expand and the heart to beat. That is all.

As for your specific post, I really hope you have the financial means to do this independently. I believe that, once you are declared dead (by multiple doctors including independent ones like this case even), all finances must be provided by the family and must be paid before care is continued. Now, I am not talking traumatic brain injury or vegetative state. I am talking clinically brain dead. No life left to support. The hospital should not be "forced" to continue to support someone on their dime who is no longer alive. That is silly. That is not what hospitals are for. They are for the ill and injured who need medical help to stay alive.

I really think at this point that someone needs to step in and stop the insanity. Yes, the family is grieving and refusing to understand what has happened. I get that. Denial is part of the grieving process. The problem is, they are not in the right mind frame to make these decisions since they refuse to see and understand everything. In other words, they are not of sound mind and body.

I am sorry, but I find the fact this is still going on disgusting. There is no reason this child is being kept in this way still. The child is gone. Nothing will change that at this point. As harsh as it sounds, it is a body that is taking up resources that do nothing for it, cost a lot of money, and could better be used on someone who is still alive.

 

[Halloweenqueen]

Dead is dead. This child has no chance of resurrection. There is no such thing of life support or recovery. I think many people are confusing the facts of this case. The family has brought multiple independent doctors. All agreed she is dead.

 

[LisaR]

Sadly few think of this aspect. It's a huge cost to maintain a person on life support. It's not the pretty picture you see on tv. It's skin breaking down(as a wound care nurse this is a horrible thing to try and manage), it's sepsis from IV lines, it's pneumonia from being on a vent long term, it's kidney failure as organs start to shut down, it's medication reactions to try and keep basic functions going and it's the toll taken on the family who has made this decision. As a nurse I wouldn't want my name on this little girls chart because this is a lose/lose for all involved and it will end up with everyone in court. I applaud the hospital for not wanting to get their staff involved.

My heart goes out to this family for what happened to their daughter, but reality has to be addressed. Maybe I'm to pragmatic, having seen this situation play out many times, and having spent hours upon hours taking care of people that should never have been kept "alive". Brain death is not a conclusion come to lightly.

Based on your experience alone, it sounds like it is quite common for family members to keep their loved ones on life support long after they are gone. It sounds like it is something you have personally experienced many times and you are just one person. If this happens so frequently, I wonder why this family is making headlines? I wonder why the hospital is insisting this family end support for their daughter when this happens so often?

I've had a living will for ages. I do not want to be kept on life support. Everyone in my family knows that and I know they will abide by my wishes. It is hard with a minor. Now you have to default to the parent who may not be making the most rational decision because of their overwhelming grief. I don't wish their situation on anyone.

 

[bcla]

Based on your experience alone, it sounds like it is quite common for family members to keep their loved ones on life support long after they are gone. It sounds like it is something you have personally experienced many times and you are just one person. If this happens so frequently, I wonder why this family is making headlines? I wonder why the hospital is insisting this family end support for their daughter when this happens so often?

I've had a living will for ages. I do not want to be kept on life support. Everyone in my family knows that and I know they will abide by my wishes. It is hard with a minor. Now you have to default to the parent who may not be making the most rational decision because of their overwhelming grief. I don't wish their situation on anyone.

I think those are things that happen on actual life support when there's a realistic shot of keeping the person alive. Keeping an otherwise dead body functioning with a ventilator has to be pretty rare. My understanding is that typically it's only done long enough to facilitate organ donation.

 

[Dawg91]

Sadly few think of this aspect. It's a huge cost to maintain a person on life support. It's not the pretty picture you see on tv. It's skin breaking down(as a wound care nurse this is a horrible thing to try and manage), it's sepsis from IV lines, it's pneumonia from being on a vent long term, it's kidney failure as organs start to shut down, it's medication reactions to try and keep basic functions going and it's the toll taken on the family who has made this decision. As a nurse I wouldn't want my name on this little girls chart because this is a lose/lose for all involved and it will end up with everyone in court. I applaud the hospital for not wanting to get their staff involved. My heart goes out to this family for what happened to their daughter, but reality has to be addressed. Maybe I'm to pragmatic, having seen this situation play out many times, and having spent hours upon hours taking care of people that should never have been kept "alive". Brain death is not a conclusion come to lightly.

This is true. Patients in this situation can't necessarily stay very long in an acute care hospital like she is in now either. The places that can provide long term care like she needs are few and far between. I had an acquaintance once with a family member on life support who thought they could bring the patient home and totally didn't get the level of care necessary. They found out that the closest facility to provide care was hundreds of miles away. There was little option. The patient passed quickly though (elderly).

 

[mhfrau]

That's a good question. Of course we are trying to plan for our future the best that we can and while I personally want to be kept on life support if God forbid the need arose I also would not want to be a burden to my family. However, I think I kind of view it the same way that people who go through severe illness do. It sounds flippant but I think you just figure it out. There are tons of people in these types of facilities. I doubt they are all independently funded so the money has to come from somewhere. I will be honest and say that I never really thought of the money aspect. I suppose that makes me sound like a dope and in some ways I agree but I am hopeful that we will never have to cross this path.

While I completely respect your personal choice, I think you hit the nail on the head when you said you've never considered the money aspect and you will just "figure it out". That's a big problem actually because whether you are privately insured, on medicare, medicaid, union insurance or whatever, SOMEONE is ponying up the money through higher premiums or taxes to cover something that goes beyond a normal standard of care, (because you would be technically deceased if you met the legal definition for "brain dead"). Are you really comfortable with someone else subsidizing your own personal choice of "hoping for a miracle"? What if your choice is putting undue hardship on someone else financially? Because that is what would happen if we all decided to hope to be that one miracle. Can you imagine what would happen to healthcare costs?

I'm not trying to be unkind, but I feel very strongly about this subject. I support anyone's right to choose whether they want to choose life support, however, I do think that they should be willing to have either the long term insurance in place or the available cash resources to cover it.

And yes, both myself and husband have living wills and poa's set up, plus we've discussed this with our teenager and he knows that until he is 18, we would make the exact same choices with him. He also feel passionately about organ donation and will have his own living will done this year when he turns 18.

And for Jahi, well, I believe that child's soul has gone on and her mother is clinging to a shell right now. As a mother myself, my heart bleeds for her, but I'm starting to get a very uncomfortable feeling about the whole raising money thing and the outspoken uncle. All you have to do is google his name, and it pulls up not only his Linkedin page but Facebook page. The man is a headhunter for the scientific/medical industry, so he has to have some understanding of things, plus he seems to enjoy his life being "public", so that just seems like he's an attention seeker to me. I don't think anything is going to happen with the girl, and she will eventually be removed from the vent. In the meantime, tens of thousands of dollars are being sent to her family through that gofundme website, so what is going to happen with the cash that well meaning people have sent in? I just think this is starting to have a stinky feeling.

 

[sunshinehighway]

Based on your experience alone, it sounds like it is quite common for family members to keep their loved ones on life support long after they are gone. It sounds like it is something you have personally experienced many times and you are just one person. If this happens so frequently, I wonder why this family is making headlines? I wonder why the hospital is insisting this family end support for their daughter when this happens so often?

I've had a living will for ages. I do not want to be kept on life support. Everyone in my family knows that and I know they will abide by my wishes. It is hard with a minor. Now you have to default to the parent who may not be making the most rational decision because of their overwhelming grief. I don't wish their situation on anyone.

I'm wondering that too.

Once she was declared brain dead, why didn't the hospital just take her off the ventilator? Did they need the family's permission?

I think the argument about wasting resources is a really poor one . There are people on life support who have no realistic hope for recovery.

 

[Little Flower]

Sadly few think of this aspect. It's a huge cost to maintain a person on life support. It's not the pretty picture you see on tv. It's skin breaking down(as a wound care nurse this is a horrible thing to try and manage), it's sepsis from IV lines, it's pneumonia from being on a vent long term, it's kidney failure as organs start to shut down, it's medication reactions to try and keep basic functions going and it's the toll taken on the family who has made this decision. As a nurse I wouldn't want my name on this little girls chart because this is a lose/lose for all involved and it will end up with everyone in court. I applaud the hospital for not wanting to get their staff involved. My heart goes out to this family for what happened to their daughter, but reality has to be addressed. Maybe I'm to pragmatic, having seen this situation play out many times, and having spent hours upon hours taking care of people that should never have been kept "alive". Brain death is not a conclusion come to lightly.

I think this post says it all. I have had the privilege of caring for patients once brain death has been declared and although it is an awfully sad job to do and the families require huge amounts of support, as a nurse I find the processes that affect the body hugely distressing. They way in which a body breaks down after death is not affected even if artificial means are still being used to keep the body "alive". Organs still fail, more and more drugs are needed to keep blood pressure up and the heart beating effectively, the body begins to swell and skin breaks down. It is just awful, no one should be put through this, for the sake of the grief of family members. I am amazed this has been allowed to co ruin for so long, the poor girl needs to be allowed to rest with dignity.

 

[hereyago]

Here's an ideal that I've been contemplating in light of comments like Jana's above. I'm NOT advocating it, just putting it out there for review and I realize my comments are addressing a hypothetical using Jahi's case as a catalyst, not as a direct example:

If we agree that brain-dead is dead, and that dead means all sentience has ceased in this temporal plane, then it would follow that we also believe that
a) the transcendent part of the person (if we believe there is one) has entered into whatever eternal state comes next and is beyond the reach of any intervention (not intended to open debate about those options here) and;
b) the body is beyond physical suffering as the mechanisms necessary to register any such conditions are completely absent.

Supposing this, what then is the difference between the present state of this body and one that's been donated to research? How is the indignity any greater than being chemically preserved, dissected, poked, prodded and observed for months or years on end in the interest of advancing medical science? Other than our visceral reaction to the concept is there truly a material difference?

Again, I realize the case at hand does not fit the scenario I've proposed, but all cadavers were once as Jahi was - living and loved, and now are no longer.

A difference between what is done with the body, a lot of people including my df sign up knowing what is going to be done with their "vessels" when donated for research.

Jahi did not sign up for this.

I think for a lot of people, myself included, this is as disrespectful as if someone had dug up her grave or messed with her gravestone. Yes, the spirit of the person is gone, but there is a line you don't cross with respect to messing with the body.

yes, she has moved to the next level, but I also believe that those who have left their bodies can still be "around" and she is seeing all this go on. Seeing the chaos and drama and I don't think she would want any of this to be happening.

 

[CPT Tripss]

That's a good question. Of course we are trying to plan for our future the best that we can and while I personally want to be kept on life support if God forbid the need arose I also would not want to be a burden to my family. However, I think I kind of view it the same way that people who go through severe illness do. It sounds flippant but I think you just figure it out. There are tons of people in these types of facilities. I doubt they are all independently funded so the money has to come from somewhere. I will be honest and say that I never really thought of the money aspect. I suppose that makes me sound like a dope and in some ways I agree but I am hopeful that we will never have to cross this path.

The money comes from me and everyone else who pays insurance and/or taxes unless "you" have a financial plan to pay all the bills without our assistance.

 

[*Fantasia*]

I'm not trying to be insensitive here.. I do feel for the family and I wish the family will let the girl rest in peace. The Lord has called her home since Dec 12. Because this became a national news, I'm beginning to feel that the family will keep pursuing to keep her "alive" just so they can have the fame and in hopes that they will get money if they ever release pictures of the girl to magazines/media. They want to be in the "spotlight". I'm sorry, but that's how I'm beginning to see it. It's been long enough, someone has to put the family out misery by getting through their thick skull that she has been long gone. They need to let her go and rest in peace.. I think they are being selfish. It's not about them.. it's about the child who needs to be laid to rest. It's disgusting.. are they waiting for her body to rot?

 

[DisneyJamieCA]

It's also a big deal to me that they are taking a PICU bed that they no longer need, however another child may. Years ago, my daughter needed a PICU bed, in Oakland actually and the idea that her life would have been put at further risk because a family couldn't come to terms with reality pulls at my heart.

For those saying they would stay on life support indefinitely, please look at the costs. I'm not telling you to change your decision, but go into fully aware. "It'll just work out" isn't the way to look at any financial decision. And be aware there is a difference in your plan and what is going on here... there is no life left to support. And it's not some doctor saying she's gone - multiple have.

 

[bethy]

This is clearly a subject that many feel very passionately about. I would expect that passion from the parties involved and from grieving parents. But I am a little taken aback by what I perceive as callousness and outright vitirol against the family in this case. I feel like the next thing I'm going to see are pitchforks and torches assembling outside the hospital. Wow.

Nevertheless, everyone and anyone is obviously entitled to their own feelings.

My question for those who feel clear passion about this little girl and their belief that she should be allowed to die or let go or allowed to rest in peace, etc:

Why does it matter, really? If you believe she is dead and gone then she is not suffering any longer. She is not there. She is gone. What's going on with her body right now should therefore not affect her in any way whatsoever if one truly believes that she is dead.

Now I will say that it does not surprise me at all that a family is taking more than a mere couple of weeks to accept that their child has died. It will probably take more like a couple of years.

Now the argument about resources does carry weight, in my personal opinion. That money does indeed need to come from somewhere. So if a person feels strongly about staying on life support indefinitely then yes, they should be prepared to fund that decision.

 

[Tozzie]

Based on your experience alone, it sounds like it is quite common for family members to keep their loved ones on life support long after they are gone. It sounds like it is something you have personally experienced many times and you are just one person. If this happens so frequently, I wonder why this family is making headlines? I wonder why the hospital is insisting this family end support for their daughter when this happens so often?

I've had a living will for ages. I do not want to be kept on life support. Everyone in my family knows that and I know they will abide by my wishes. It is hard with a minor. Now you have to default to the parent who may not be making the most rational decision because of their overwhelming grief. I don't wish their situation on anyone.

In my opinion it is because most families don't go to the media, couple that with the type of surgery that the girl had and her age and it is a Media free for all and the family and their attorney keep feeding the the Media.

 

[Pea-n-Me]

No. I don't think there has.

I understand people are looking at this from a clinical view but I think they are failing to see the heartbroken family. They are not looking at a dead body in the way we normally think of death. They are looking at their little girl and she's warm, breathing (although through a machine), and that monitor is showing a heartbeat. What they are looking at is probably no different than families who have loved ones in vegetative states. As a non medical person it is difficult for me to understand the differences between brain death and other things that would cause a person to be in a similar state. How many families keep loved ones with little chance of recovery in such states for years and years? The family is not crazy or anything else, they are facing unimaginable grieve and are hanging on to that hope so many other families do. It's unrealistic but many things are.
Some people in this thread act like this family is Norman Bates with his mother's body.

I think if people weren't being compassionate, she would have already been taken off life support. Most people do understand, or at least empathize with, the difficulty involved here. Many, including myself, have had the actual experience of removing a loved one from life support. It is gut wrenching (I myself needed days, pastoral support, and several informational meetings as well as "family meetings" so that my family was on the same page, even though I had the ultimate responsibility as the health care proxy) and hard to convey the actual feelings involved in a discussion like this. I imagine it would be way worse, even, to be in a situation involving one's child (as my best friend was two years ago, after an accident in which brain death occurred). I think that most people really do get this.

Additionally, even though hospital personnel may sound somewhat cold at times, they are probably upset themselves, and have to balance their statements between empathy and reality. It is not easy for them to sit with a distraught family and have to tell them their child has died. (And yes, I have experienced that.) What the family doesn't see are staff crying in the back rooms as they release their emotions and imagine being in that situation themselves with their own children. And I have not doubt whatsoever, as I have been involved in this type of situation, too, that nurses are caring for Jahi's body with the utmost respect and compassion. It is in no way easy for them, either, as they are also parents, children, aunts, uncles, brothers, sisters, friends, etc., in their own lives, too. Patients and families often either don't consider, or don't realize, that we bring to the bedside experiences of our own and of our friends' and families' as well. They may not hear about them, necessarily, but they are there.

The thing is, that much time has gone by now, and what is being proposed for this girl's body really crosses a line, ethically, since by law, she is legally dead, and the chances of her actually waking up are - according to experts involved in her care - just about nil, unfortunately. Whatever happened aside (and whatever happened should absolutely be examined), what is done is done, and she has died, by legal and medical definitions. (See, there's no way, really, of saying that that doesn't sound clinical.) There are laws about dead bodies and what can and can't be done with them, and ethical standards as well, which are what hospital spokespeople are referring to when they say they cannot perform surgery (trach and feeding tube) on someone who's dead. It crosses a line medically, legally and ethically. (Not sure if that made sense or if it is complete rambling...)