Family wants to keep life support for girl brain dead after tonsil surgery #9

[K_Z]

Sadly, Jahi's so young, it could be a long time before that muscle gives up.

Snipped for focus, and BBM. (Pardon my quirky ponderings about heart function and scroll on if desired. Quirky ponderings are an occupational hazard for me!)

Agree-- that is a fairly healthy 13 yo heart. She did sustain cardiac arrest, but presumably they returned her heart to a functional rhythm soon enough to prevent a lot of cardiac ischemia/ infarction, even though the anoxic brain injury was fatal.

We know that surgically denervated transplanted hearts function for years in their recipients. Jahi's heart is "functionally denervated" (just as her body is functionally decapitated), meaning her body has no central nervous system to produce sympathetic and parasympathetic effects on her heart. She is dependent on things like circulating adrenal hormones (catecholamines, etc) for increases and decreases in heart rate, cardiac output, etc. And as she has no ability to exercise her muscles (passive range of motion notwithstanding), the effects of the denervation are apparently minimal on perfusion of kidneys, gut, etc. In Jahi's particular case, there appears to be a stabilization of the positional blood pressure issues that existed in the ICU when she was first declared brain dead.

There have been so few cases of prolonged somatic support in brain dead patients that I don't think there is a good body of knowledge to tell us how long that period typically lasts (if there is a "typical" period.)

Here is a quick explanation of denervation effects in a heart transplant patient:

http://stanfordhospital.org/cardiov...t/patientEducation/physiologyDenervation.html

Barring a source of overwhelming infection-- typically urinary tract or pulmonary, it appears with good physical care of the body that a young, relatively healthy heart will continue to beat and perfuse organs for quite some time. With each of these "experiments", we learn more about how long the shell of a body can continue to function with a ventilator attached, and some source of calories (IV or enteral).

I'm reminded of the article about the 4 yo boy who was brain dead following meningitis, and his mother cared for him for another 20 years at home in the basement. He was profoundly microcephalic, as his skull and brain never grew, but his body gained weight and grew, mostly in the truncal area, and all extremities were poorly developed.

http://www.academia.edu/attachments...3NywyMDguMzguMTIzLjE4OQ==&ct=MTQwMTM3NDM4MA==

http://www.academia.edu/2819458/Lon...erial_meningitis-associated_brain_destruction

The whole situation is so very sad. If the body of Jahi does function for many years, I'm really concerned for the sanity and well-being of this mother and her living children. They are in such a deep, dark hole now, with the choices they have made about Jahi's body. It seems to me that it would be merciful if Jahi's heat just stopped, to release them from what NW apparently feels is a profound obligation. NW needs permission to let go, IMO.

 

[K_Z]

Regarding timing to file lawsuits for medical negligence or wrongful death, I think maybe NW could file those now, if she wanted to. What would be holding her back, legally? There is a death certificate, so a wrongful death case or negligence "could" be filed, to preserve the statute, right?

Murky area, this. Perhaps Gitana1 or another legal type will weigh in.

 

[CHERIE.T]

Regarding timing to file lawsuits for medical negligence or wrongful death, I think maybe NW could file those now, if she wanted to. What would be holding her back, legally? There is a death certificate, so a wrongful death case or negligence "could" be filed, to preserve the statute, right?

Murky area, this. Perhaps Gitana1 or another legal type will weigh in.

But but but...is there a COD or a TOD on the death certificate?
:blushing: (I can't remember.)

 

[forthelost]

The COD is probably "undetermined" at this point, but they can change it later on if there's an autopsy.

 

[Quester]

I guess one way of delaying the inevitable autopsy would be
to continue keeping this deceased child on the vent. JMO

 

[Sheromom]

I have both a brother-in-law and an emergency only niece who have seen miracles. Not sure I believe in them but just saying,,,,,

 

[Harmony 2]

Please steer clear of bringing religion into the discussion... thanks!

 

[Philigumbo]

Snipped for focus, and BBM. (Pardon my quirky ponderings about heart function and scroll on if desired. Quirky ponderings are an occupational hazard for me!)

Agree-- that is a fairly healthy 13 yo heart. She did sustain cardiac arrest, but presumably they returned her heart to a functional rhythm soon enough to prevent a lot of cardiac ischemia/ infarction, even though the anoxic brain injury was fatal.

We know that surgically denervated transplanted hearts function for years in their recipients. Jahi's heart is "functionally denervated" (just as her body is functionally decapitated), meaning her body has no central nervous system to produce sympathetic and parasympathetic effects on her heart. She is dependent on things like circulating adrenal hormones (catecholamines, etc) for increases and decreases in heart rate, cardiac output, etc. And as she has no ability to exercise her muscles (passive range of motion notwithstanding), the effects of the denervation are apparently minimal on perfusion of kidneys, gut, etc. In Jahi's particular case, there appears to be a stabilization of the positional blood pressure issues that existed in the ICU when she was first declared brain dead.

There have been so few cases of prolonged somatic support in brain dead patients that I don't think there is a good body of knowledge to tell us how long that period typically lasts (if there is a "typical" period.)

Here is a quick explanation of denervation effects in a heart transplant patient:

http://stanfordhospital.org/cardiov...t/patientEducation/physiologyDenervation.html

Barring a source of overwhelming infection-- typically urinary tract or pulmonary, it appears with good physical care of the body that a young, relatively healthy heart will continue to beat and perfuse organs for quite some time. With each of these "experiments", we learn more about how long the shell of a body can continue to function with a ventilator attached, and some source of calories (IV or enteral).

I'm reminded of the article about the 4 yo boy who was brain dead following meningitis, and his mother cared for him for another 20 years at home in the basement. He was profoundly microcephalic, as his skull and brain never grew, but his body gained weight and grew, mostly in the truncal area, and all extremities were poorly developed.

http://www.academia.edu/attachments...3NywyMDguMzguMTIzLjE4OQ==&ct=MTQwMTM3NDM4MA==

http://www.academia.edu/2819458/Lon...erial_meningitis-associated_brain_destruction

The whole situation is so very sad. If the body of Jahi does function for many years, I'm really concerned for the sanity and well-being of this mother and her living children. They are in such a deep, dark hole now, with the choices they have made about Jahi's body. It seems to me that it would be merciful if Jahi's heat just stopped, to release them from what NW apparently feels is a profound obligation. NW needs permission to let go, IMO.

Excellent post! Thank you...

 

[Frigga]

Oh my goodness- that 4 year old boys body was kept alive for 20 years! This could go on for a very long time with Jahi, I am afraid, much longer then I ever imagined!

Wow.

I feel so sorry for her mother and especially her siblings.

Will the uncle ever try to help his sister see the reality when this goes on way too long?

 

[wendiesan]

Oh my goodness- that 4 year old boys body was kept alive for 20 years! This could go on for a very long time with Jahi, I am afraid, much longer then I ever imagined!

Wow.

I feel so sorry for her mother and especially her siblings.

Will the uncle ever try to help his sister see the reality when this goes on way too long?

I don't know that the uncle has much influence over his sister's behaviour.

IMO, NW is so deeply immersed in magical thinking that it will take something she perceives as a heavenly command in order for her to let go of Jahi. [ie. IMO, NW believes that observance (like formal and informal prayer) and sacrifice (like devoting her entire life to serving her daughter) will bring about an expected benefit (Jahi waking up as a healthy teen).]

It seems that NW is surrounded by people who support her aim, and even if the uncle has only been engaging in quasi-magical thinking and decided that Jahi was not going to heal, his is only one voice. Again JMO, but some of those people telling NW she's doing the right thing by Jahi have their own interests to protect.

Also, thank you K_Z for your incredible post. I had not realized that Jahi's body could be kept functioning for such a long period of time.

 

[K_Z]

Paul Byrne has not forgotten about Jahi McMath's case.

From May 28, 2014:

The life of Jahi McMath May 28th, 2014
By Paul A. Byrne, M.D.

A death certificate was issued on Jahi McMath Dec. 12, 2013, more than four months ago. Since then Jahi’s heart has beat more than 12 million times without any stimulation from medications or devices.

http://www.catholic-sf.org/ns.php?newsid=8&id=62483

 

[Supernovae]

I am glad that a compromise was reached that incorporated both the legal state of death, as well as allowed her family to take her body, and do what I have been considering as "ritual care" of the body. It helps me to consider the insanity and futility of all this as just peculiar "personal family death rituals". Like a cultural thing, KWIM?

I am fine with people taking their brain dead loved ones home for personal "ritual care", as long as the public isn't paying for it in any way, and it is legally clear the person is considered "dead". Caring for the dead person should be funded somewhat like a family's personal costs for funeral expenses, IMO. No health insurance or public funds. If churches want to donate, or individuals that's fine with me. Just no public funds.

I think it is really necessary that when someone has experienced brain death, that if the family chooses to take their body somewhere, they conform to all existing laws about moving bodies, coordinating with coroner, etc. It's just too murky of a situation otherwise, when you think about the trach or vent becoming detached in a different city, transporting the dead person back to an ER, etc. Give the families a provisional death certificate, and complete forms to move the body, and coordinate and communicate with the coroner, then let them arrange transportation and care if they really want to. I don't think there are many of these cases, so monitoring and managing them wouldn't be too onerous.

What is worrisome, as I ponder this, is that certain nefarious entities could rise up (pun intended) to promise all sorts of improvements, as well as potential resurrection for the brain dead loved one, "if only" the family of the dearly departed were parted further from some hard, cold cash. It is a business potential for exploitation of vulnerable, grieving families. (I already have serious concerns about the group in New York, as well as the Terry Schiavo group.)

Imagine the "opportunity" for businesses like "Billy Bob's Pretty Good Care Center for the Brain Dead". "Welcome to Resurrections ~ A Perpetual Care Center". "Vents R Us". etc. :facepalm:

There was a really interesting documentary on the BBC, a few years ago, called "Between Life and Death:"

BBC Between Life And Death - Part 1/5 - YouTube

It should be stressed that all of the featured patients had a much higher level of neurological function than Jahi Mcmath does, but one of the doctors had a really helpful quote (at 6:40mins) which was that death is not an event but a process. One reading of the Jahi Mcmath case would be that, while still alive, she is at an advanced stage in the dying process, and the treatments she has received have essentially pressed the pause button on that process.

Now, the UK has a definition of death that is "permanent loss of the capacity for consciousness," which would also be inclusive of brain death. Now, that's a perfectly reasonable working definition, but I think it's appropriate to acknowledge that it's a semantic and philosophical designation as much as a medical and scientific one (and in my opinion has largely come about as a result of the imperative to legally obtain transplantable organs).

I don't understand the investment in the language in the section quoted above, and I believe, the determination to get the family to accept the framing that she is already dead, against how they're interpreting the evidence of their own eyes has significantly contributed to the breakdown in the relationship between the family and medical professionals (the fact that her condition may have arisen out of medical error, probably hasn't helped, either). I also don't think that framing is necessary. It's enough to say that she is irreversibly injured, and cannot recover. It may have been that, as her physical condition deteriorated, her family might have been able to come to terms with that, without being driven up this hill that they now feel they can't climb down from.

 

[Supernovae]

Snipped for focus, and BBM. (Pardon my quirky ponderings about heart function and scroll on if desired. Quirky ponderings are an occupational hazard for me!)

Agree-- that is a fairly healthy 13 yo heart. She did sustain cardiac arrest, but presumably they returned her heart to a functional rhythm soon enough to prevent a lot of cardiac ischemia/ infarction, even though the anoxic brain injury was fatal.

We know that surgically denervated transplanted hearts function for years in their recipients. Jahi's heart is "functionally denervated" (just as her body is functionally decapitated), meaning her body has no central nervous system to produce sympathetic and parasympathetic effects on her heart. She is dependent on things like circulating adrenal hormones (catecholamines, etc) for increases and decreases in heart rate, cardiac output, etc. And as she has no ability to exercise her muscles (passive range of motion notwithstanding), the effects of the denervation are apparently minimal on perfusion of kidneys, gut, etc. In Jahi's particular case, there appears to be a stabilization of the positional blood pressure issues that existed in the ICU when she was first declared brain dead.

There have been so few cases of prolonged somatic support in brain dead patients that I don't think there is a good body of knowledge to tell us how long that period typically lasts (if there is a "typical" period.)

Here is a quick explanation of denervation effects in a heart transplant patient:

http://stanfordhospital.org/cardiov...t/patientEducation/physiologyDenervation.html

Barring a source of overwhelming infection-- typically urinary tract or pulmonary, it appears with good physical care of the body that a young, relatively healthy heart will continue to beat and perfuse organs for quite some time. With each of these "experiments", we learn more about how long the shell of a body can continue to function with a ventilator attached, and some source of calories (IV or enteral).

I'm reminded of the article about the 4 yo boy who was brain dead following meningitis, and his mother cared for him for another 20 years at home in the basement. He was profoundly microcephalic, as his skull and brain never grew, but his body gained weight and grew, mostly in the truncal area, and all extremities were poorly developed.

http://www.academia.edu/attachments...3NywyMDguMzguMTIzLjE4OQ==&ct=MTQwMTM3NDM4MA==

http://www.academia.edu/2819458/Lon...erial_meningitis-associated_brain_destruction

The whole situation is so very sad. If the body of Jahi does function for many years, I'm really concerned for the sanity and well-being of this mother and her living children. They are in such a deep, dark hole now, with the choices they have made about Jahi's body. It seems to me that it would be merciful if Jahi's heat just stopped, to release them from what NW apparently feels is a profound obligation. NW needs permission to let go, IMO.

The four year old boy case is interesting, but it's clear from the second article that he received a lot of aggressive medical care over the years, and escalation of treatment, besides ventilation. It's also interesting that the article refers to his condition over the years as "survival."

 

[Quester]

There has been nothing publicly released, that I have read, to lead one to believe Jahi's current state was due to a "medical error". And, early reports lead one to question whether or not it ever was, in fact. JMO

 

[wendiesan]

Respectfully snipped for space by me.

I don't understand the investment in the language in the section quoted above, and I believe, the determination to get the family to accept the framing that she is already dead, against how they're interpreting the evidence of their own eyes has significantly contributed to the breakdown in the relationship between the family and medical professionals (the fact that her condition may have arisen out of medical error, probably hasn't helped, either). I also don't think that framing is necessary. It's enough to say that she is irreversibly injured, and cannot recover. It may have been that, as her physical condition deteriorated, her family might have been able to come to terms with that, without being driven up this hill that they now feel they can't climb down from.

I disagree with your wording in the bolded phrase. It is not a "fact" that one or more medical errors made before, during, or after surgery may have lead to Jahi's death. It is a possibility that has, AFAIK, not yet been tested in a court of law and, AFAIK, no specific error has yet been mentioned as a possible COD. The possibility of a medical error has been an unsubstantiated accusation that has been frequently repeated and insinutated, but not proven.

Similarly, neither is the possibility that the family may have unintentionally aggravated Jahi's medical condition post-surgery leading to her death a "fact". It is more a supposition based on, OS's, SC's and NW's own statements that Jahi's mother, grandmother, stepfather, and Jahi herself were all involved in suctioning blood from Jahi's throat post surgery. (http://www.wrcbtv.com/story/24233852/california-13-year-old-brain-dead-after-tonsil-surgery, http://www.nbcwashington.com/news/n...er-Brain-Dead-After-236015681.html?akmobile=o)

The circumstances under which the possible medical error or the possible accident occurred have yet to be fully disclosed to the public. IMO, there is a lot more to be learned about what happened before we can attach the word "fact" to the term "medical error" in this case.

In earlier threads we discussed the importance of choosing words to describe Jahi's condition in some detail, and it's my opinion that the connotations are as important as the denotations of those words. For those in the medical profession, I think (and know I'll be corrected if I'm off-base here) that some words become jargon. Using jargon is a quick but accurate way to let colleagues know what is going on in a particular situation. Those of us in the general public may have a different understanding of what those words mean and may be making statements that may fit our interpretation quite well. However, our use of some words will sometimes be out of sync with the medical reality of the situation we are describing. For someone not in the medical profession to say "she is irreversibly injured, and cannot recover" may be enough, but, if that is not the medical reality, then your statement may not be enough to satisfy the needs of a medical professional.

Re your last sentence. From what I've observed over the last few months, the family drove themselves up that hill. They are quite comfortable on that hill. They have lots of friends sending them supplies up that hill, and they issue communications back down at their convenience. They have yet to find a reason to make a move in another direction.

Whatever other words may describe it, I think this is a tragedy for everyone involved.

 

[Cubby]

Paul Byrne has not forgotten about Jahi McMath's case.

From May 28, 2014:The life of Jahi McMath May 28th, 2014
By Paul A. Byrne, M.D. Quote:


A death certificate was issued on Jahi McMath Dec. 12, 2013, more than four months ago.


Since then Jahi’s heart has beat more than 12 million times without any stimulation from medications or devices.


http://www.catholic-sf.org/ns.php?newsid=8&id=62483

From another Catholic. The above statement is an outright misleading LIE.

While Jahi's heart is not being stimulated, her lungs are and her heart is dependent on the stimulation of another organ in her body

Mr. Byrne is a very sick man to take this family's tragedy and twist it into his pro-life agenda by deliberately giving misleading information.

Jahi is deceased and no amount of machines, whether they be on her heart or any other organ will bring her back.


I pray that Jahi can rest in peace, soon. Such an incredibly sad situation. And actually rather morbid considering the facts.

 

[Tssiemer]

There was a really interesting documentary on the BBC, a few years ago, called "Between Life and Death:"



BBC Between Life And Death - Part 1/5 - YouTube



It should be stressed that all of the featured patients had a much higher level of neurological function than Jahi Mcmath does, but one of the doctors had a really helpful quote (at 6:40mins) which was that death is not an event but a process. One reading of the Jahi Mcmath case would be that, while still alive, she is at an advanced stage in the dying process, and the treatments she has received have essentially pressed the pause button on that process.



Now, the UK has a definition of death that is "permanent loss of the capacity for consciousness," which would also be inclusive of brain death. Now, that's a perfectly reasonable working definition, but I think it's appropriate to acknowledge that it's a semantic and philosophical designation as much as a medical and scientific one (and in my opinion has largely come about as a result of the imperative to legally obtain transplantable organs).



I don't understand the investment in the language in the section quoted above, and I believe, the determination to get the family to accept the framing that she is already dead, against how they're interpreting the evidence of their own eyes has significantly contributed to the breakdown in the relationship between the family and medical professionals (the fact that her condition may have arisen out of medical error, probably hasn't helped, either). I also don't think that framing is necessary. It's enough to say that she is irreversibly injured, and cannot recover. It may have been that, as her physical condition deteriorated, her family might have been able to come to terms with that, without being driven up this hill that they now feel they can't climb down from.

I approve of this definition of death.


Sent from my iPhone using Tapatalk

 

[jjenny]

The four year old boy case is interesting, but it's clear from the second article that he received a lot of aggressive medical care over the years, and escalation of treatment, besides ventilation. It's also interesting that the article refers to his condition over the years as "survival."

As time goes on, it becomes harder to maintain brain dead body on life support, which necessitates escalation of treatment.

 

[K_Z]

The four year old boy case is interesting, but it's clear from the second article that he received a lot of aggressive medical care over the years, and escalation of treatment, besides ventilation. It's also interesting that the article refers to his condition over the years as "survival."

The reason his condition was referred to as "survival" is because he was never pronounced dead, presumably, until his heart failed. The little boy was born in 1979, and the Uniform Determination of Death Act (UDDA) was passed in 1981. It would have been approx. 1983 when he suffered the meningitis that led to his brain death.

Uniform Determination of Death Act - Wikipedia, the free encyclopedia

The Uniform Determination of Death Act (UDDA) is a draft state law that was approved for the United States in 1981 by the National Conference of Commissioners on Uniform State Laws, in cooperation with the American Medical Association, the American Bar Association, and the President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. The act has since been adopted by most US states and is intended "to provide a comprehensive and medically sound basis for determining death in all situations".

BBM. It was necessary for all state legislatures to officially adopt the UDDA into their state laws, which does take quite some time, and the completion of the legislative process for a proposed bill within each state's legislative session. I don't know which state this child lived in, so it isn't possible to back track and see if his state had adopted the UDDA back in 1983-- but my knowledge of the legislative process tells me it's unlikely that by 1983 it had been adopted in his state (merely 2 years after approval by the Uniform State Laws commission.) I could be wrong, but that's my take on the time frame. His brain death situation occurred just as many states were discussing and adopting the uniform definitions. It's likely his situation slipped thru and was "defined" as it had been prior to 1981.

The other observation I have about that child's situation is that the chronic and escalating care described over the next 20 years is not likely to ever be repeated in the U.S. It is unlikely, for example, that Jahi McMath's body, with a death certificate, would be admitted to an ICU for treatment of infection, dopamine infusions, etc. (In 1983, the only place in most hospitals for dopamine and ventilators was an ICU.)

The article also has some discussion of the period of stabilization of the positional blood pressure issues, and the stabilization "over weeks" of the brain death- induced diabetes insipidis (which causes massive dumping of body fluids). I think, from NW's descriptions, Jahi's body has achieved some level of stabilization with regard to those issues.

He also had to have his eyelids fused surgically at one point, as the eyes ulcerated from drying out over the years. This is a situation I discussed a long time ago- about the kind of care Jahi's body needs every day-- things like eye care are a daily area that needs attentive care, to prevent infection. The eyelids are fragile, and have a tendency to curl inward or outward, and not come together properly, in patients who are unconscious over a long period of time. The eyes often dry out and corneas ulcerate, if not lubricated and protected with tape to close them, and rigid eye protectors to mitigate pillow pressure when the patient is positioned certain ways.

The boy in the article received substantial ongoing aggressive medical support (ICU care, etc) over the 20 years he was cared for-- multiple hospital admissions, and in and out of long term care facilities, from what is described. I strongly doubt Jahi's body will receive that level of medical support when inevitable complications develop, such as infections, and the return of diabetes insipidis, etc. If, for example, kidney failure develops, there isn't much that will be done. This is not a situation for hemofiltration, conventional dialysis, or peritoneal dialysis. There will come a time when either her heart fails, or organ systems begin failing. We just don't know when that will be.

 

[K_Z]

From another Catholic. The above statement is an outright misleading LIE.

While Jahi's heart is not being stimulated, her lungs are and her heart is dependent on the stimulation of another organ in her body

Mr. Byrne is a very sick man to take this family's tragedy and twist it into his pro-life agenda by deliberately giving misleading information.

Jahi is deceased and no amount of machines, whether they be on her heart or any other organ will bring her back.


I pray that Jahi can rest in peace, soon. Such an incredibly sad situation. And actually rather morbid considering the facts.

EXACTLY. Paul Byrne like to conveniently overlook the ventilator that supplies oxygen to the lungs. And if he does acknowledge the ventilator, he engages in extreme verbal gymnastics to justify the ventilation process biologically as "just a little therapy thing" that just augments the "life processes" going on within the body. He refuses to perceive the ventilator as the ENERGY SOURCE of the life processes.

Paul Byrne is an outlier within BOTH his profession of medicine, AND his professed faith of Catholicism. He has little to no support for his "ideas" among his faith peers, nor his medical peers.

It's fine with me for someone like Paul Byrne to personally hold whatever beliefs he wants. To use his platform as an MD to espouse such utter physiologic and philosophical baloney (IMO) is every bit as unscientific and side-show manipulative as it is for a celebrity with perhaps not even a high school diploma, to be given a media platform to discuss how they "know" with certainty that vaccines cause autism. It's preposterous. And it confuses the intellectually vulnerable among us. IMO.

IMO, Paul Byrne is an opportunistic, predatory quack.