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

[CarolinaMoon]

I've been so upset about this case and have read here daily. I only commented once early on but, based on all I have read since, my opinion hasn't changed.

However, since Jahi hasn't been removed from life support due to the judge's decision, I can live with the fact that she will probably "live" through December 30, a bit removed from the holiday.

I understand the mother's tremendous sense of guilt that she allowed the operation. I just have to wonder why she keeps referring to it as a "routine tonsillectomy" at this point.

Based on the pre-op decision to place her in ICU for recovery, the mother must have been warned about the seriousness of the surgery. Perhaps she put it to the back of her mind so she could reassure her frightened daughter.

I wonder if Jahi's apnea was so serious that a C-Pap couldn't help her. Or, did she try one and was not able to use it? With severe apnea, she could have died at home in her sleep. She didn't have enough energy to exercise and lose weight.

What would her prognosis have been if she hadn't had the surgery? Would she continue to gain weight and have worse problems?

We may never know until this case goes to court and the medical records and testimony of her doctors is made public.

From earlier in the thread:

Just so incredibly sad.
http://www.mercurynews.com/breaking-...ath-is-mothers


Quote:
"Everyone says it's not my fault," Winkfield said on Monday, in her most extensive interview so far about the events that have propelled her and her family into a highly publicized, bitterly divisive battle with Children's Hospital Oakland. "But I drove her here. I made the appointment. I got the second opinion.

"It was me. It was all me," Winkfield said, wiping away tears that have been flowing for two weeks. "She didn't do it. She just followed what I said. So I feel like it would be so wrong of me to let them pull that plug on her."

Quote from Sophie Rose and BBM

I hope that mom can come to the point some day where she knows she did the right thing by her daughter and the results were not what she expected. I pray this Christmas Day that she eventually finds peace with all her decisions and can move on to provide a good life for her remaining children.

 

[Donjeta]

JMO I didn't see anyone being insensitive to the incredible pain and suffering the family is facing, having suddenly lost their beloved daughter. It is no wonder they are not able to accept it, it is not something that anyone should ever have to accept.

But I see this fighting in court process potentially making things worse for the family in the long run, because there are not going to be any winners here. Even if the family gets their way and Jahi is kept on life support indefinitely, I don't believe that it's going to save her. It seems to be partly guilt for allowing the operation, partly false hopes that keep the family fighting. The guilt and the what ifs are perhaps unavoidable but largely unwarranted because they could not have foreseen the future. The false hopes are not unusual in a family in crisis either but the irreversible nature of brain death means that sooner or later those hopes will certainly come crumbling down, unless there is a divine intervention. Her mother expressed certainty that there will be a miracle and given time, God will spark Jahi's brain alive. But what if He won't? If He wanted to save her, it would have been a great time to do so after the surgery, when she started bleeding or when she went into cardiac arrest but wasn't brain dead yet.

So if the family wins in court there is a good chance that she will spend what, days, weeks, months, years lying on a bed unconscious while the family prays for her as she gets bedsores and infections until her heart finally gives in. It will be a huge burden that will cost the family a lot, not just financially but emotionally, and all the time spent on Jahi's bedside keeps them away from something else they might need or want to do. There are other children in the family who may suffer as all the family's got to give is poured in Jahi's care. Eventually, maybe, it will dawn that the child is dead in all the ways that matter the most and there might be additional guilty feelings for at least some family members for drawing the dying process out and not letting her die peacefully (depending on what she eventually succumbs for it might look like torture to concerned family members), or for wishing that her heart would give in so she could be buried and the family could move on, or for not praying hard enough, not being a good enough Christian, not loving enough so that God would save her, or guilty feelings for any other important things that got neglected while taking care of Jahi.

Other than the costs of being involved in Jahi's care there might be financial losses if they had thought of a malpractice suit but it turned out in the autopsy that Jahi's body had healed enough that they couldn't get evidence of what, if anything, went wrong in the operation or the hospital post-op care.

Keeping a brain dead person with no chance of recovery in life support indefinitely seems morally wrong to me. Some of the things bedridden persons may suffer or die of are very painful and not nice to look at. I know rationally that they don't feel pain and anguish without the brain but still, if you can abuse a dead person, subjecting their bodies to an existence of endless nursing interventions seems like it could border on abuse. If it was a badly injured cat we'd think the humane thing would be to take it to the vet for a lethal injection instead of keeping it as a machine ventilated marionette. Is it right to subject a human being to that kind of existence, even if she's probably beyond caring?

My personal take is that it may not be but I don't have all the answers and people are free to disagree with me. I'm sure Jahi would want whatever is best for her family.I'm just not sure that it is best for anyone to watch their loved one in that state for weeks, months, years to come, and wait, wait for a miracle, or wait for the heart to stop and relieve them of the waiting.

But I definitely think that all the emotional and the financial resources that are directed into the care of a legally dead person who will not benefit from any of it would be better used for the living. For helping the bereaved family heal, for treating the living people who still have a chance to benefit from the care.

There are no winners here. What a horrible Christmas for the family.

 

[Donjeta]

From my experience, they way I see the push to get the child off the ventilator and out of the building as soon as possible is to prevent the truth from making its way to the family. As an RN, I would believe something went terribly wrong and rapid action was not taken to correct the problem that resulted in this child's death.

No doubt it is very painful for the family to hear him speak of their daughter in terms of something that should be autopsied as soon as possible but according to the coroner, prolonging the time in life support works against the family, not for them, when it comes to getting information about what went wrong. Her brain won't heal with no circulation but the area they operated on area gets blood flow and the wounds will have healed somewhat, and the longer it takes for her to end up on the autopsy table the harder it will be to find out definitively what went wrong.

The official at the coroner's office said time is critical. "When the body is on a ventilator, the body is healing," the official said. "If a medical misadventure occurred, and the body is healing and covering up traces of that misadventure, the coroner pathologist has a more difficult time rendering a cause of death."

http://edition.cnn.com/2013/12/17/health/california-girl-brain-dead/index.html

 

[txsvicki]

I feel bad for the judge having to rule on this. He's following the law, but probably doesn't see many cases like this, and it has to be hard on him.

 

[BeginnersLuck]

I feel bad for the judge having to rule on this. He's following the law, but probably doesn't see many cases like this, and it has to be hard on him.

The judge did what I thought he would do and extend the time beyond Christmas. Regardless of what my overall opinions are on this issue, I was hoping the family would get this extension so they were not having to deal with funeral arrangements over the holidays.

Considering the situation with the hospital, I am surprised that nothing has been said about moving her to a different location. I guess that would open up a whole other list of obstacles that would have to be addressed.

 

[txsvicki]

I was reading that New York and New Jersey are the only two states that have separate laws for the Jewish faith, those who believe death occurs only after the heart stops.

 

[Trino]

The hospital isn't going to permit Jahi to stay there forever. There must be talk with the family of moving her to another facility in the near future if this is the family's wishes.

Although Terry Schiavo was in a hospice for nearly 15 years, her case was different. She was in a permanent vegetative state, not brain dead. Her case involved 14 appeals, petitions, and hearings in the Florida courts and 5 suits in federal district court.

Is Jahi's family prepared for this?

Would a hospice even take Jahi? I'm not sure they would.

 

[jjenny]

The hospital isn't going to permit Jahi to stay there forever. There must be talk with the family of moving her to another facility in the near future if this is the family's wishes.

Although Terry Schiavo was in a hospice for nearly 15 years, her case was different. She was in a permanent vegetative state, not brain dead. Her case involved 14 appeals, petitions, and hearings in the Florida courts and 5 suits in federal district court.

Is Jahi's family prepared for this?

Would a hospice even take Jahi? I'm not sure they would.

Hospital doesn't plan to move her. Hospital plans to turn the ventillator off and judge gave the hospital permission to do so.
Sciavo was not brain dead and was not on a ventillator. Schiavo could breathe on hew own so it was a different case.

 

[BeginnersLuck]

I was reading that New York and New Jersey are the only two states that have separate laws for the Jewish faith, those who believe death occurs only after the heart stops.

I am not aware of how the Jewish faith deals with something like this. The vent is the what is keeping her heart beating, by supplying it with oxygen. Are they or will they be giving Jahi BP meds, antibiotics and other things besides just the vent?

I'm just curious, to what extent do other faiths go as far as treatment in these situations?

 

[SwampMama]

The judge did what I thought he would do and extend the time beyond Christmas. Regardless of what my overall opinions are on this issue, I was hoping the family would get this extension so they were not having to deal with funeral arrangements over the holidays.

Considering the situation with the hospital, I am surprised that nothing has been said about moving her to a different location. I guess that would open up a whole other list of obstacles that would have to be addressed.

Her family has alluded to the fact that they want her moved elsewhere but as it is, she is legally dead. That has been confirmed by no less than 6 doctors/experts, every test given to her and the court system. This means that her insurance has no obligation to pay for any further life supporting care. It also means that other hospitals, nursing homes, etc will not accept her because she is legally "dead". To put it bluntly, they do not accept dead people as patients.

Yes, it does sound harsh to put it that way. But that is the reality of it. It is probably an eye-opener for many people, as it has been for me to read all of the details of the case. But it is the truth and countless other thousands of people have had to deal with it.

I really do hope that this family can come to terms with what has happened and be able to find acceptance, peace and closure with it somehow. I hate to see them fighting such an emotional and yet futile battle in the hopes for the impossible.

 

[BeginnersLuck]

The hospital isn't going to permit Jahi to stay there forever. There must be talk with the family of moving her to another facility in the near future if this is the family's wishes.

Although Terry Schiavo was in a hospice for nearly 15 years, her case was different. She was in a permanent vegetative state, not brain dead. Her case involved 14 appeals, petitions, and hearings in the Florida courts and 5 suits in federal district court.

Is Jahi's family prepared for this?

Would a hospice even take Jahi? I'm not sure they would.

I don't know the policies of other facilities or what would be required to take her home.

Like you said this is a different situation because there is no brain activity, where in other cases a person may have brain damage but not brain death. The only thing I saw in MSM, was talk of a research facility.

If just kept on a vent, with no other medical intervention, I don't think a heart will continue to hold out for very long.

 

[BeginnersLuck]

Her family has alluded to the fact that they want her moved elsewhere but as it is, she is legally dead. That has been confirmed by no less than 6 doctors/experts, every test given to her and the court system. This means that her insurance has no obligation to pay for any further life supporting care. It also means that other hospitals, nursing homes, etc will not accept her because she is legally "dead". To put it bluntly, they do not accept dead people as patients.

Yes, it does sound harsh to put it that way. But that is the reality of it. It is probably an eye-opener for many people, as it has been for me to read all of the details of the case. But it is the truth and countless other thousands of people have had to deal with it.

I really do hope that this family can come to terms with what has happened and be able to find acceptance, peace and closure with it somehow. I hate to see them fighting such an emotional and yet futile battle in the hopes for the impossible.

I understand this. There could always be that person that comes out of the woodwork though and says they will pay for her care. Or the next case that comes along, someone may have the money to pay for care at home if a facility won't do it. A judge or other authority could intervene, depending on their beliefs or sympathy towards the family and prolong things even further.

My curiosity still has me asking general questions and I believe it's because there seems to be a lack of knowledge in the GP and a lot of misinformation spread in circles and over the internet. There needs to be better education and clarification for the next case that will follow.

I guess I am caught up in the general topic and because of misinformation I am seeing, I may be going O/T on this thread. I apologize and will leave it at that.

 

[Tulessa]

JMO I didn't see anyone being insensitive to the incredible pain and suffering the family is facing, having suddenly lost their beloved daughter. It is no wonder they are not able to accept it, it is not something that anyone should ever have to accept.

But I see this fighting in court process potentially making things worse for the family in the long run, because there are not going to be any winners here. Even if the family gets their way and Jahi is kept on life support indefinitely, I don't believe that it's going to save her. It seems to be partly guilt for allowing the operation, partly false hopes that keep the family fighting. The guilt and the what ifs are perhaps unavoidable but largely unwarranted because they could not have foreseen the future. The false hopes are not unusual in a family in crisis either but the irreversible nature of brain death means that sooner or later those hopes will certainly come crumbling down, unless there is a divine intervention. Her mother expressed certainty that there will be a miracle and given time, God will spark Jahi's brain alive. But what if He won't? If He wanted to save her, it would have been a great time to do so after the surgery, when she started bleeding or when she went into cardiac arrest but wasn't brain dead yet.

So if the family wins in court there is a good chance that she will spend what, days, weeks, months, years lying on a bed unconscious while the family prays for her as she gets bedsores and infections until her heart finally gives in. It will be a huge burden that will cost the family a lot, not just financially but emotionally, and all the time spent on Jahi's bedside keeps them away from something else they might need or want to do. There are other children in the family who may suffer as all the family's got to give is poured in Jahi's care. Eventually, maybe, it will dawn that the child is dead in all the ways that matter the most and there might be additional guilty feelings for at least some family members for drawing the dying process out and not letting her die peacefully (depending on what she eventually succumbs for it might look like torture to concerned family members), or for wishing that her heart would give in so she could be buried and the family could move on, or for not praying hard enough, not being a good enough Christian, not loving enough so that God would save her, or guilty feelings for any other important things that got neglected while taking care of Jahi.

Other than the costs of being involved in Jahi's care there might be financial losses if they had thought of a malpractice suit but it turned out in the autopsy that Jahi's body had healed enough that they couldn't get evidence of what, if anything, went wrong in the operation or the hospital post-op care.

Keeping a brain dead person with no chance of recovery in life support indefinitely seems morally wrong to me. Some of the things bedridden persons may suffer or die of are very painful and not nice to look at. I know rationally that they don't feel pain and anguish without the brain but still, if you can abuse a dead person, subjecting their bodies to an existence of endless nursing interventions seems like it could border on abuse. If it was a badly injured cat we'd think the humane thing would be to take it to the vet for a lethal injection instead of keeping it as a machine ventilated marionette. Is it right to subject a human being to that kind of existence, even if she's probably beyond caring?

My personal take is that it may not be but I don't have all the answers and people are free to disagree with me. I'm sure Jahi would want whatever is best for her family.I'm just not sure that it is best for anyone to watch their loved one in that state for weeks, months, years to come, and wait, wait for a miracle, or wait for the heart to stop and relieve them of the waiting.

But I definitely think that all the emotional and the financial resources that are directed into the care of a legally dead person who will not benefit from any of it would be better used for the living. For helping the bereaved family heal, for treating the living people who still have a chance to benefit from the care.

There are no winners here. What a horrible Christmas for the family.

BBM. I <3 this post! :blushing:

 

[SophieRose]

A personal story of representing Jahi McMath
by Christopher B. Dolan
http://www.sfexaminer.com/sanfranci...-representing-jahi-mcmath/Content?oid=2658052

It was the night of Dec. 16 at about 10. I had just finished a trial in a civil-rights case in federal court. I had been up all night the night before preparing my closing argument. I was tired and told my wife I needed a break. Then I got a text.

A friend from Los Angeles said there was a man in the Bay Area claiming his niece was on life support and the hospital was going to pull the plug the next morning. Could I give him a call? The account seemed unbelievable, but I made the call. That's when I met Omari, Jahi's uncle. He was desperate. He told me a bit about Jahi and asked me if I had been watching the news. I said no, since I had been working round the clock. I listened to him, turned on the news and saw that he was a real person with a real crisis.

 

[Minette]

This family just sounds so hurt, and so shocked, and so utterly rejecting of the truth, which is that their beloved daughter won't ever wake up or get better. I think the judge (and possibly the hospital) are hoping/assuming that the inevitable will happen before December 30 and the deadline for the family to file an appeal.

I hope that being able to be with her at Christmas helps them find peace.

 

[fruity]

The vent was removed briefly during tests and Jahi is unable to breathe by herself. I wonder if this new knowledge will help her family to realise that she is gone.

A question: what date will her death certificate list? The day she died, or the day they eventually turn the vent off? If it's the day they turn the machine off, I think it will perpetuate the belief the family has that turning off the machine led to her death.

 

[jjenny]

This family just sounds so hurt, and so shocked, and so utterly rejecting of the truth, which is that their beloved daughter won't ever wake up or get better. I think the judge (and possibly the hospital) are hoping/assuming that the inevitable will happen before December 30 and the deadline for the family to file an appeal.

I hope that being able to be with her at Christmas helps them find peace.

I think someone can last a long time on a ventillator.
So I don't think hospital is hoping/assuming her heart will stop before December 30. My understanding it could take years.

 

[K_Z]

http://www.mercurynews.com/breaking...t-divisive-battle-over-jahi-mcmath-is-mothers

.....the lobby has been a chaotic and sometimes unscrupulous place, where throngs of well-wishers bring cards and flowers, pastors pray and bring Bible verses and strangers show up offering incense and oils and demand to lay their healing hands on Jahi. They speak in tongues on the sidewalk. Some say they're the girl's uncle or grandmother and somehow get into the hallways of hospital's third floor. One woman waited in the corridor for 10 hours. "I want to see your daughter and touch her," the woman told Winkfield. When Winkfield said no, the woman replied, "Then I want to be close to you." She watched Winkfield sleep.

Finally, the family created a secret password

"I can't go down for fresh air. There are so many prayer rugs and statues and incense and all these directions of how to wake her," she said earlier this week. "We're dealing with a lot of unsavory people."

Ok, this is a problem. I'm sorry but there are other patient's at the hospital and their rights are no less important than Jahi's. A hospital should be a quiet, UNchaotic place for patients and family. For there to be 12 people sleeping in the waiting room at night for 2 weeks is a bit much. For there to be crowds of people lounging around in and outside the hospital offering their miracle cures and relics, speaking in tongues and lying to get upstairs is outrageous. That is a security nightmare and a HUGE liability and problem for the hospital.

It seems Jahi's family doesn't like the situation but THEY created this atmosphere when they put out a public call for people and they marched on the hospital. They brought people to a place that should be a quiet and private place for patients and their families. Their march should have been at the courthouse. They asked for people to come and show their presence at the hospital as a way to pressure them to keep Jahi on life support. (No, they didn't state it that way but it is clear)

I can't feel too badly that Jahi's family doesn't like it? They need to consider that there are other families with critically ill children or dying children there too who are just as plagued with the odd crowd who had NOTHING to do with why those people are there but are having to deal with it nevertheless.

Holy cow, what a mess. I absolutely cannot believe that the hospital security IN A PEDIATRIC HOSPITAL is allowing this to happen in the lobbies and sidewalks! Hospital lobbies and sidewalks are NOT public places, and they CAN escort these kooks off the property, or forcibly remove them.

For the love of pete, security in MOST pediatric hospitals (especially urban facilities) is very intensive-- the risks of abductions, as well as the frequent angry disputes among estranged parents typically mean security is very high. Many places you have to sign in, even as a parent, to get a badge EVEN to be in the lobbies and waiting rooms. I simply cannot believe the security staff is allowing this circus to happen. They have a bigger duty to the patients, staff, and parents of the patients, than they do to the weird and odd members of the public who show up inserting themselves into this sad story.

Escort them off the property!

And I do agree, while the family has my extreme sympathy, this public fiasco is occurring as a DIRECT result of the way the family chose to rally the public. They should have done this at a church or other more appropriate public space, if they had to do it at all. I cannot believe that their pastors or other more clearly thinking people did not dissuade the family from rallying the public to demonstrate and march at the hospital. My heart really goes out to the other patients, staff, and families who are forced to deal with this mishandled situation. It's bad enough Jahi is dead, but to put all these other people thru this is just...I have no words. Security needs to step up and get these kooks off the property. Potentially a very dangerous situation.

 

[K_Z]

The vent was removed briefly during tests and Jahi is unable to breathe by herself. I wonder if this new knowledge will help her family to realise that she is gone.

A question: what date will her death certificate list? The day she died, or the day they eventually turn the vent off? If it's the day they turn the machine off, I think it will perpetuate the belief the family has that turning off the machine led to her death.

The death certificate will have the date the vent is removed, unless her heart stops before that.

 

[K_Z]

I think someone can last a long time on a ventillator.
So I don't think hospital is hoping/assuming her heart will stop before December 30. My understanding it could take years.

BBM. No, not years. Days at best, depending on how much support her body is currently on (other BP and heart rhythm meds, etc.), and how fast systems are deteriorating.

Sad and difficult to say, but her brain has no perfusion at all. For 2+weeks. It is already decomposing, which will be documented on the autopsy report.

It isn't like her body is perfectly fine, inert, and physiologically intact on the ventilator. Every single body system is altered and erratic. She is not in a coma or vegetative state. It is extremely complex physiologically to be brain dead with a beating heart.

Everything from cell permeability to oxygen transport is affected and deteriorating. Drugs can't work properly. Hemoglobin can't bind and release oxygen normally at the tissue level-- despite high levels of oxygen delivered via the ventilator. Acid/ base balance becomes increasingly impossible, electrolytes are deranged and can't be corrected, distal airways collapse, muscle tissue breaks down, kidneys and liver stop working, coagulopathies, the gut begins to bloat and break down, etc. Her body is dying and deteriorating more and more every hour that goes by. Brain death is not a survivable state for the rest of the body.

I'll see if I can find a few references to post.

http://books.google.com/books?id=v4gbsXJ3bxAC&printsec=frontcover#v=onepage&q&f=false

Link to a textbook called "The Brain Dead Organ Donor: Pathophysiology and Management". You can hit the "preview" button here and read quite a bit.