Family wants to keep life support for girl brain dead after tonsil surgery #8

[Tawny]

Maybe they just need time to get to the point where they can let her go.

I'm astounded, no more than that, I'm actually upset by how little compassion and understanding is shown to this family here, and elsewhere.

As far as I understand no tax dollars are used for Jahi's continued treatment? So what's with all the judgements and pushiness? Let them do what they want to do. Jahi is gone, she doesn't suffer whether they bury her now or later. It's the family that suffers and they have to work through their emotions, and they will.

They are not misguided, they are in the first stages of grief - denial. Want to see you all when one day a loved one of yours dies and you refuse to believe it only to be pushed and shouted at by others to "let go!!" It doesn't work that way.

Sad to see people think and talk about others who suffer a loss in this way.

I really believe you have misinterpreted what BetteDavisEyes was intending. I took her post to mean she cares about the family and doesn't want them to suffer for longer than necessary.

 

[Elainera]

People had a lot of sympathy for the family at first. After 6 doctors said she was dead, this is going far beyond denial. It'd be one thing if the family wanted to take her to a hospice where she could die in peace. It's another when they are asking for donations so she can recover. The rather clear cut concept of brain death is being confused by the PR machine behind this family and the media, giving religious fringe groups a platform to say that Jahi McMath can wake up and return to normal.

I just wonder how many other families now are going to be so confused by the concept of brain death they are going to want their brain dead relative hooked up on a vent for weeks, months or years? How many fewer organ donations will there be after all the publicity given to Dr Paul Byrne who's beliefs pretty much preclude organ donation all together. Forget scientific facts, the media is presenting religious zealots' beliefs as facts.

It's the fact that this has gone on now for so long, many of us did in fact have a large amount of sympathy because it was close to the holidays. After that though.. after the mother said she would believe what a doctor not affiliated with CHO had to say in the matter, and yet this charade of denial continues on even with SIX doctors having confirmed Jahi's brain death. After dragging CHO and their staff through the mud while they are forced to sit on their hands with their mouths shut. After the uncle OS running his mouth all over Twitter and any news outlet that would put a camera on his face and a mic under his mouth. The empathy has slowly turned into apathy. They claim they want privacy and yet CD turns around and op-ed's lashing out at people who are starting to raise the BS flags.

41 days. That's how long this has gone on. The fact of the matter is that this sets a very scary precedent. What about the next family that comes along demanding the same accommodations? Where is the line going to be drawn? Is the 1st Amendment Rights card going to be played ad nauseam? At what point does this become desecration of a corpse? What about staff who are forced to go against the code of ethics they are supposed to work under? This goes far beyond just this family and what they want.


IMO.. JMO.. MOO.. ECT..

I really believe you have misinterpreted what BetteDavisEyes was intending. I took her post to mean she cares about the family and doesn't want them to suffer for longer than necessary.

Thank you kincaid and Nevadamom for explaining your views. You certainly have a point, or points.

Thank you Tawny, yes I might have misunderstood it somewhat, or seen only one side. This is a complex case, with complex issues, medical, legal, as well as emotional.

 

[Yoda]

A new article and view from a PICU doctor. http://www.chrisjohnsonmd.com/2014/...al&utm_source=twitter.com&utm_campaign=buffer

 

[NevadaMom]

A new article and view from a PICU doctor. http://www.chrisjohnsonmd.com/2014/...al&utm_source=twitter.com&utm_campaign=buffer

"A key principle here is that a family cannot force me to behave unethically, and continuing organ support of a dead person is disrespectful of the dead — mutilating to the body. Many ethical traditions, including my own, refuse to do that."

THIS! I get families cope differently, and that they have different cultural beliefs, but at the end of the day maintaining a dead body indefinitely flies in the face of the ethics of the medical community as a whole. A persons personal beliefs cannot and should not trump defined law on death or the medical staff that is obligated to provide care for a short period of time after death has been declared.


The longest I have ever continued organ support on a dead person was 6 weeks. We had a huge court battle similar to this case, with the court ultimately allowing us to withdraw support. A family member then attempted to enter the hospital with a gun. It was ugly."

Considering Northern Nevada just had a second hospital shooting this week (the other one was in December) it's a sad possibility that is now front and center in my mind all too often. :sigh:


*scurries back off to continue reading*


(edited to fix a glaring spelling error)

 

[Elainera]

"A key principle here is that a family cannot force me to behave unethically, and continuing organ support of a dead person is disrespectful of the dead — mutilating to the body. Many ethical traditions, including my own, refuse to do that."

THIS! I get families cope differently, and that they have different cultural beliefs, but at the end of the day maintaining a dead body indefinitely flies in the face of the ethics of the medical community as a whole. A persons personal beliefs cannot and should not trump defined law on death or the medical staff that is obligated to provide care for a short period of time after death has been declared.


The longest I have ever continued organ support on a dead person was 6 weeks. We had a huge court battle similar to this case, with the court ultimately allowing us to withdraw support. A family member then attempted to enter the hospital with a gun. It was ugly."

Considering Northern Nevada just had a second hospital shooting this week (the other one was in December) it's a sad possibility that is now front and center in my mind all too often. :sigh:


*scurries back off to continue reading*


(edited to fix a glaring spelling error)

bold/underlined bm - I respectfully disagree. I very much like the way the Japanese approach this situation, outlined in a pdf case file linked a couple of pages back. In Japan, families are allowed to choose what they define as true death - brain death, or when the heart stops beating. I find that so respectful and much more humane than saying people have to follow what others have decided death is. There is no need to judge someone that feels that brain death is not yet real death and chooses to wait until the heart finally stops as well! For some people this slow form of letting go might be much easier to deal with, the grief less of a paralyzing shock.

 

[ArianeEmory]

I have to ask again, who is supposed to bear the cost of maintaining a brain dead body indefinitely?

Does everyone get the right to be maintained indefinitely if a family member requests it, even if there is no money to pay for it and the burden falls to the state?

Are medical practitioners to be forced to provide care for brain dead individuals? How about the machine technicians? Do any of their ethical beliefs count?

What happens when the brain dead are taking up room and resources that could be better used by living patients?

How are these things handled in Japan? (I don't necessarily see why we have a pressing need to emulate a country that kills whales in our ethical judgements, mind you, but I'm willing to hear how many brain dead people are typically being maintained in Japan, and who pays for it.)

 

[NevadaMom]

bold/underlined bm - I respectfully disagree. I very much like the way the Japanese approach this situation, outlined in a pdf case file linked a couple of pages back. In Japan, families are allowed to choose what they define as true death - brain death, or when the heart stops beating. I find that so respectful and much more humane than saying people have to follow what others have decided death is. There is no need to judge someone that feels that brain death is not yet real death and chooses to wait until the heart finally stops as well! For some people this slow form of letting go might be much easier to deal with, the grief less of a paralyzing shock.

The problem being that in situation such as with Jahi, the family is keeping her on mechanical ventilation. Her heart could continue to beat for quite some time because of the measures being taken. She's been legally dead for nearly 6 weeks now, 4 of which were spent at CHO utilizing the facility machines and staff, and attempting to force via the courts to perform more surgery against their own code of ethics.

Why should their inability to cope force the health care providers to do care for a legally dead person as if they were still alive, and for weeks on end? Does respect for medical professionals and their own personal beliefs and code of ethics hold no merit?

If we have no laws to define death then people can choose to do as they please, right? Why have doctors or coroners when everyone can pick and chose what is real and what is not?

The laws written about brain death are very specific and have strict methods to come to the conclusion of complete brain death. It's not a guess and it's not a personal belief.

 

[al66pine]

A new article and view from a PICU doctor.

http://www.chrisjohnsonmd.com/2014/01/21/on-brain-death-and-the-jahi-mcmath-story/?utm_content=buffer5bb65&utm_medium=social&utm_source=twitter.com&utm_campaign=buffer

Yoda,
Thx for link to this M.D's excellent article, which brought up something I had not thought about before w. these declarations of B-D pts, re Jahi or in gen.

".... How do we know somebody is brain dead? There are a series of standard and relatively low-tech bedside tests to determine that. We first make sure the patient has a normal body temperature and has no sedating drugs in their system. There should be no purposeful response to any stimuli. The muscles are flaccid. Then we test for brain stem reflexes. One of these is response of the pupils to light — there should be none. There needs to be absence of normal movement of the eyes to motion of the head (called doll’s eyes) or no movement when we put cold water on the ear drum (called cold calorics); both of these measure the same reflex. There should be no blink reflex, called the corneal reflex, when a wisp of cotton is brushed on the eyeball. There should be no gag reflex when we stimulate the back of the throat with a wooden tongue depressor. Finally, the last test of brain stem function is the apnea test: [ed: explanation] ....
Many hospitals require 2 tests 24 hours apart; if both show no brainstem function, the patient is legally dead at the conclusion of the second test. As an alternative, we can do the bedside test followed by a simple scan to determine of there is any blood flowing to the brain. These two tests together give us an immediate answer, and many hospitals require the flow study for children. If the bedside examination shows no brainstem function and the flow study shows no blood flow to the brain, the patient is legally dead. I write the time of death on the death certificate as the time of the scan.
When I do these things I always want the family with me and watching what I do as I explain what is happening." BBM SBM

I had read about the series of tests and the repetition of the series, say, 24 hrs later.

Stepping into the shoes and heart of a relative resistant to the idea of my loved one being dead,
I think that being present at tests, w dr explaining each element, could help me understand.
JM2cts. :seeya:

 

[Karmady]

Yoda,
Thx for link to this M.D's excellent article, which brought up something I had not thought about before w. these declarations of B-D pts, re Jahi or in gen.

".... How do we know somebody is brain dead? There are a series of standard and relatively low-tech bedside tests to determine that. We first make sure the patient has a normal body temperature and has no sedating drugs in their system. There should be no purposeful response to any stimuli. The muscles are flaccid. Then we test for brain stem reflexes. One of these is response of the pupils to light — there should be none. There needs to be absence of normal movement of the eyes to motion of the head (called doll’s eyes) or no movement when we put cold water on the ear drum (called cold calorics); both of these measure the same reflex. There should be no blink reflex, called the corneal reflex, when a wisp of cotton is brushed on the eyeball. There should be no gag reflex when we stimulate the back of the throat with a wooden tongue depressor. Finally, the last test of brain stem function is the apnea test: [ed: explanation] ....
Many hospitals require 2 tests 24 hours apart; if both show no brainstem function, the patient is legally dead at the conclusion of the second test. As an alternative, we can do the bedside test followed by a simple scan to determine of there is any blood flowing to the brain. These two tests together give us an immediate answer, and many hospitals require the flow study for children. If the bedside examination shows no brainstem function and the flow study shows no blood flow to the brain, the patient is legally dead. I write the time of death on the death certificate as the time of the scan.
When I do these things I always want the family with me and watching what I do as I explain what is happening." BBM SBM

I had read about the series of tests and the repetition of the series, say, 24 hrs later.

Stepping into the shoes and heart of a relative resistant to the idea of my loved one being dead,
I think that being present at tests, w dr explaining each element, could help me understand.
JM2cts. :seeya:

jmho, but they understand perfectly. Everyone involved has, at one point or another, acknowledged that Jahi is brain dead.

 

[Karmady]

The problem being that in situation such as with Jahi, the family is keeping her on mechanical ventilation. Her heart could continue to beat for quite some time because of the measures being taken. She's been legally dead for nearly 6 weeks now, 4 of which were spent at CHO utilizing the facility machines and staff, and attempting to force via the courts to perform more surgery against their own code of ethics.

Why should their inability to cope force the health care providers to do care for a legally dead person as if they were still alive, and for weeks on end? Does respect for medical professionals and their own personal beliefs and code of ethics hold no merit?

If we have no laws to define death then people can choose to do as they please, right? Why have doctors or coroners when everyone can pick and chose what is real and what is not?

The laws written about brain death are very specific and have strict methods to come to the conclusion of complete brain death. It's not a guess and it's not a personal belief.

Exactly and obviously, imo. And I'm cynical that this has anything to do with the lack of coping skills. jmho

 

[DeeMarie]

Exactly and obviously, imo. And I'm cynical that this has anything to do with the lack of coping skills. jmho

I agree. I think there is a game being played and it has to do with money.

 

[Karmady]

I agree. I think there is a game being played and it has to do with money.

I think there's a little more to it than that, but that's a big part, too, imo

 

[NevadaMom]

Exactly and obviously, imo. And I'm cynical that this has anything to do with the lack of coping skills. jmho

Yeah, I think it's past that point as well. On the off chance it's not then I think mental health professionals need to be brought in. She has some questionable people whispering into her ear. *coughCDcoughOScough*


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[al66pine]

jmho, but they understand perfectly. Everyone involved has, at one point or another, acknowledged that Jahi is brain dead.

Yes, for Jahi's fam, it prob'ly would have made no diff at all.
I must have been thinking of other families.

JM2cts.:seeya:

 

[Karmady]

Yes, for Jahi's fam, it prob'ly would have made no diff at all.
I must have been thinking of other families.

JM2cts.:seeya:

Many posters have posted and linked to where the fam has said they don't care what the docs think/say. Not much you can do with that--even if a lack of understanding were genuine. And I'm skeptical of that considering they've all acknowledged she's brain dead. jmo

 

[Linda7NJ]

Many posters have posted and linked to where the fam has said they don't care what the docs think/say. Not much you can do with that--even if a lack of understanding were genuine. And I'm skeptical of that considering they've all acknowledged she's brain dead. jmo

Uneducated people can be really stubborn, especially at times of great duress.

My own grandmother believed that maggots sprung into existence and were a result of garbage decaying. The woman would not believe they had anything to do with flies. she knows the lid was on the trash can and when she opened it, there were maggots. I tried telling her. She was having none of it because she "saw with her own eyes"....eyeroll.

I feel Jahi's mother is stuck in that same "place" as my grandmother was. She sees with her own eyes that Jahi is breathing.


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[Karmady]

Uneducated people can be really stubborn, especially at times of great duress.

My own grandmother believed that maggots sprung into existence and were a result of garbage decaying. The woman would not believe they had anything to do with flies. she knows the lid was on the trash can and when she opened it, there were maggots. I tried telling her. She was having none of it because she "saw with her own eyes"....eyeroll.

I feel Jahi's mother is stuck in that same "place" as my grandmother was. She sees with her own eyes that Jahi is breathing.


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Agreed. I come from a long line of simple uneducated folk who are stubborn just like that. But we've got Mr. Dolan here telling us the exact opposite. According to him, these people are not stupid or fools (his words, not mine). What's more, if they are acting out of ignorance, there's no justification for filing lawsuits and taking down the hospital with that ignorance. It can't be both ways. jmho

 

[BeginnersLuck]

bold/underlined bm - I respectfully disagree. I very much like the way the Japanese approach this situation, outlined in a pdf case file linked a couple of pages back. In Japan, families are allowed to choose what they define as true death - brain death, or when the heart stops beating. I find that so respectful and much more humane than saying people have to follow what others have decided death is. There is no need to judge someone that feels that brain death is not yet real death and chooses to wait until the heart finally stops as well! For some people this slow form of letting go might be much easier to deal with, the grief less of a paralyzing shock.

Below is a link to a physicians discussion on how they have handled families that has been resistant to removal of the ventilator in brain dead patients. I had to skirt over the parts where they talk about organ donation, because it wasn't applicable in Jahi's case. In fact one physician notes that most that are against brain death as death, aren't open to organ donation anyway.

There are a couple things I want to mention. CHO allowed for Jahi to remain on the vent for a significant longer period of time, than other hospitals do. I believe they kept her on the vent for around a week, in ICU for the family. They did this on their own, before there was court intervention.

The other thing I would like to note, is in most other cases where hospitals have allowed the brain dead to remain on vents until the heart gives out, it usually occurs within a couple days. The reason why it doesn't prolong like Jahi, is because hospitals will in most cases, not provide vasopressors and other medications. CHO most likely could have withdrawn fluids and stopped administering medications once brain death was determined but they didn't. If some feel that CHO wanted her to die, to cover something up, then they would have withdrawn these measures but they didn't. That shows me that CHO was being very empathetic towards the family in allowing them extra time.

There is no medical necessity for operating on, putting a variety of medications into the body or feeding a deceased person. Doing these things to the body of a deceased person serves no useful purpose. The attorney and family, wanted to force CHO to go to these measures that are not done in hospitals anywhere. They also wanted CHO to keep her in ICU indefinitely, and provide her with care that is not medically necessary (she's deceased).

There are live patients that doctors can help and save that need those beds and care from the medical staff. It makes absolutely no sense to put resources in caring for a deceased body indefinitely.

A families denial or whatever motivation there may be, should not interfere with the care of the living. The primary responsibility is to the patients. Jahi, being deceased, is no longer a patient and she would have passed with cardiac failure quickly without fluids and vasopressors.

If families that don't want to accept brain death as true death and want extraordinary measures taken, then they have to get a court order like the McMaths did. They have to find others that are willing to perform the surgeries, provide care and come up with the funds necessary in order to do so. Most cases I have been able to find are of families that have taken loved ones home to die. I have not found any case where they have gone to the extent that has been done here, in order to preserve the body and keep the heart beating indefinitely, with the exception of the Japanese case study that I linked. It is an old document and I highly doubt that even in Japan they go to these links at this time.

Here is the physician discussion:

http://www.ccm-l.org/discussion1/Ethics/uncoop.html

 

[Yoda]

Uneducated people can be really stubborn, especially at times of great duress.

My own grandmother believed that maggots sprung into existence and were a result of garbage decaying. The woman would not believe they had anything to do with flies. she knows the lid was on the trash can and when she opened it, there were maggots. I tried telling her. She was having none of it because she "saw with her own eyes"....eyeroll.

I feel Jahi's mother is stuck in that same "place" as my grandmother was. She sees with her own eyes that Jahi is breathing.


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Educated people can be stubborn too. I did have an older woman I worked with who was convinced you get shingles from sitting on the floor. ??? Every time I would sit on the floor she would shake her head and look at me like "I've warned you."

 

[Linda7NJ]

Educated people can be stubborn too. I did have an older woman I worked with who was convinced you get shingles from sitting on the floor. ??? Every time I would sit on the floor she would shake her head and look at me like "I've warned you."

One of my closest friends is Greek, her parents were born & raised in a small village, never went to school & can't read or write. They believe having a dog in the house and accidentally swallowing a dog hair....causes cancer.
Onions stuffed into the bottom of socks, worn all night, cures darn near everything....even cancer. They've both had & cured cancer...many times. ...eyeroll...


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