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

[K_Z]

So, to me, it looks like the family is going to have to file an appeal to a higher court, before Dec 30. Sad that the family is going thru so much struggle for such a hopeless case. From what i understand, being brain dead, with no blood flow to the brain, her brain will begin to deteriorate (the sources I read said "decompse").

Another source also said that since her brain is dead, that there is no way that she could process anything her family says because you need brain function to turn sounds into meaningful words.

If any of our medically knowledgeable people here know, can you answer any of the following questions? I have tried to find answers but there is so much to read and most of it does not focus on these questions.

Jahi's family reported that her shoulder moved. Is this even possible? I don't think her body is capable of any voluntary movement but are there any involuntary body process that could account for this?

Also, in addition to the above question.. Could this reported shoulder movement simply be the body beginning to contract, as we often see brain damaged, persistent vegetative patients do? Will this happen to her?

What is the longest that anyone has lived on life support while brain dead and do you know the circumstances why they were kept that way for so long. I understand the cases where pregnant women were kept alive, but they were allowed to be removed from life support after the birth. Are there any other stories of long term life support after brain death?

Being brain dead, are her eyes fixed and dilated, not responding to light or movement at all?

Jahi's mother reported that her blood pressure went up when she listened to music (or when her mom talked, i forget which). I was under the impression that the ability to regulate blood pressure was in the brain (the lower part, I think) so is it even possible that her blood pressure or heartbeat could respond to voices or music. Would they respond to painful stimuli or does she not even have the ability to process pain?

To continue her life support long term, what interventions will be needed. Ventilation and nutrition, of course but what else? Drugs to regulate blood pressure? What other meds or assistance.

If on long term support with nutrition, obviously her body would create waste products from that nutrition (urine, feces). It seems obvious she will be on a catheter but what will occur with her bowel process? Can her body/muscles even produce a bowel movement or would they have to intervene to remove such products from her body?

Sorry to ask so many questions. I just really want a clear understanding of all of this because i do intend on having conversations with family and friends about it. Thanks to our medical experts, you info has been very educational and helpful in understanding all of this.

Just want to address one more thing as I head for bed. Lower spinal cord reflexes can remain intact in brain dead people.

For example, a brain dead person can still manifest a serious BP syndrome like autonomic dysreflexia during the procurement procedure for organs, just as spinal cord injured patients do when exposed to certain bodily stimuli. There is an unregulated flood of endogenous catecholamines (epinephrine, etc) in response to certain stimuli (full bladder or bowel stimuli are examples in spinal cord injured patients). For this reason, paralytic drugs and inhalational anesthetic agents, and sometimes narcotics, are administered to brain dead donors during the procurement surgery, to attenuate these responses. Endogenous catecholamines and lower spinal cord reflexes are independent of brain stem and cerebral function.

http://www.aana.com/newsandjournal/Documents/inhalational_0810_p293-299.pdf

There are no clear recommendations regarding perioperative
management of the brain-dead organ donor
outside of administering neuromuscular blocking agents
to prevent spinal reflexes or movements in response to
surgical stimulation, fluid resuscitation, and maintenance
of certain hemodynamic values.16-18 The same intact
spinal cord that exhibits spinal reflexes to noxious
stimuli is also capable of inducing the release of catecholamines
through the adrenergic loop.2,8,19-22 Many researchers
compare this sympathetic catecholamine surge
in organ donors to that which occurs in autonomic hyperreflexia
in the living patient with a previous spinal cord injury. This is a well-documented phenomenon that can occur with noxious stimuli of any type. The uncontrolled sympathetic outflow can cause deleterious effects
to body systems if it is not treated.23

 

[K_Z]

If on long term support with nutrition, obviously her body would create waste products from that nutrition (urine, feces). It seems obvious she will be on a catheter but what will occur with her bowel process? Can her body/muscles even produce a bowel movement or would they have to intervene to remove such products from her body?

Snipped for focus.

Patients who are on tube feeding exclusively for their nutrition chronically tend to have liquid or pasty bowel movements, if they are absorbing and have peristalsis. The high sugar content of the tube feed solution as sole nutrition causes all sorts of osmotic issues in normally functioning colons. Skin breakdown in the anal/ rectal area is a constant battle, along with fungal infections of the skin and skin folds. Can be very frustrating and difficult for the staff to manage.

The less mobility the patient has, and the greater their size, the greater the risk and incidence of skin breakdown, and ulceration.

 

[Donjeta]

Dolan said the surgical procedure and Jahi's long-term care would be paid for by medical insurance.

http://www.ktvu.com/news/news/local/family-works-move-jahi-mcmath-new-care-facility/ncWR5/

What kind of an insurance will pay for surgery and life support for the recently deceased?

 

[K_Z]

http://www.ktvu.com/news/news/local/family-works-move-jahi-mcmath-new-care-facility/ncWR5/

What kind of an insurance will pay for surgery and life support for the recently deceased?

Well, that was a very big question in my mind, as well.

When my FIL was being discharged from a trauma ICU to a sub acute facility, there was a requirement that he be able to participate in rehab for a certain amount of time per day-- otherwise, he had to go to a skilled nursing facility (SNF nursing home). Jahi's care needs more closely meets that of skilled nursing facility, than sub acute care hospital, which usually has limits on how long patients can be there before being moved to a nursing home.

I think I read somewhere that the mother works at Home Depot. Presumably she has insurance thru her employer.

I have real doubts that Jahi will be able to be moved to any other care facility at this point.

 

[Donjeta]

http://www.nytimes.com/1984/01/26/us/medical-advance-saves-a-nearly-drowned-boy.html
http://articles.chicagotribune.com/...est-defector-ukrainian-boy-walter-polovchak/2
This nearly drowned boy was discussed upthread, just adding the links for those of us who don't remember this story.

 

[wendiesan]

Just want to address one more thing as I head for bed. Lower spinal cord reflexes can remain intact in brain dead people.

For example, a brain dead person can still manifest a serious BP syndrome like autonomic dysreflexia during the procurement procedure for organs, just as spinal cord injured patients do when exposed to certain bodily stimuli. There is an unregulated flood of endogenous catecholamines (epinephrine, etc) in response to certain stimuli (full bladder or bowel stimuli are examples in spinal cord injured patients). For this reason, paralytic drugs and inhalational anesthetic agents, and sometimes narcotics, are administered to brain dead donors during the procurement surgery, to attenuate these responses. Endogenous catecholamines and lower spinal cord reflexes are independent of brain stem and cerebral function.

http://www.aana.com/newsandjournal/Documents/inhalational_0810_p293-299.pdf

Thanks K_Z for demystifying this issue.

Meanmaryjean had offered a possible explanation for the shoulder movments Jahi's family claim to have seen.

I was wondering whether, in fact, they might be related to the Lazarus Sign or other undirected movments before I read K_Z's post. I found several articles that cite studies of patients diagnosed as being brain-dead that indicate that as many as 39% of the patients observed in these studies displayed spontaneous movements that were spinal reflexes and not the results of brain activity. That is, they were not directed by the brain because actual brain activity had ceased. Understandably, these movements were distressing to family members or others who had seen them, and caused people to wonder if, in fact, the diagnosis of brain death had been accurate. Such movements include finger and toe jerks, extension at arms and shoulders, and flexing of arms and feet. Articles also discuss the occurrence of the Lazarus Sign--extension of arms from shoulders, to cross chest, to fall to the sides.

These are a few of the articles I found.

http://www.sciencedaily.com/releases/2000/01/000113080008.htm
http://www.neurology.org/content/34/8/1089
http://www.ncbi.nlm.nih.gov/pubmed/15013288
http://link.springer.com/article/10.1385/NCC:3:2:122#page-1
http://jama.jamanetwork.com/article.aspx?articleid=403740
http://www.nursingcenter.com/lnc/CE...12000-00012&Journal_ID=54016&Issue_ID=1090491
http://neurology.about.com/od/Symptoms/a/Understanding-Brain-Death.htm

I wonder if Jahi's family saw such reflexive movements as those mentioned above, and then believed that they seeing the beginning of Jahi's miraculous healing through prayer.

IIRC, though, those movement tended to happen soon after the patient had died, or shortly after being taken off a ventilator whereas the movements seen by Jahi's family were reported to the public only recently. Is it possible for these reflexive movements to spontaneously happen days or weeks after a patient has been declared brain dead? Could this be another reason why Jahi's mother finds it so very difficult to accept that her daughter has died?

While it may seem like grasping at straws to me, it must seem perfectly plausible to Nailah Winkfield for she remains firm in her belief that praying hard will reverse brain death and return Jahi Mcmath to her family. http://www.nbcbayarea.com/news/loca...g-to-Keep-Girl-on-Life-Support-237374891.html

 

[meanmaryjean]

http://www.nytimes.com/1984/01/26/us/medical-advance-saves-a-nearly-drowned-boy.html
http://articles.chicagotribune.com/...est-defector-ukrainian-boy-walter-polovchak/2
This nearly drowned boy was discussed upthread, just adding the links for those of us who don't remember this story.

Thanks for the link - I would NEVER have come up with the correct spelling of his name!

 

[Trino]

http://www.ktvu.com/news/news/local/family-works-move-jahi-mcmath-new-care-facility/ncWR5/

What kind of an insurance will pay for surgery and life support for the recently deceased?

Excellent question.

Why, other than for insurance money, would another facility take Jahi? Amazing.

With no hope of recovery, what doctor would wish to perform surgery on a deceased patient? Honestly, I'm just appalled at the thought of surgery on this poor child.

 

[Elley Mae]

David Durand, the hospital's chief of pediatrics, said the hospital would not cooperate with Jahi's transfer to another facility. The judge did not authorize or order any transfer or surgery, Durand said in a statement released Thursday evening.

http://hosted.ap.org/dynamic/storie...ME&TEMPLATE=DEFAULT&CTIME=2013-12-25-13-50-38

Dolan said the surgical procedure and Jahi's long-term care would be paid for by medical insurance.


Who's paying the premium's?

 

[SwampMama]

Excellent question.

Why, other than for insurance money, would another facility take Jahi? Amazing.

With no hope of recovery, what doctor would wish to perform surgery on a deceased patient? Honestly, I'm just appalled at the thought of surgery on this poor child.

BBM. The family announcement alluded to a Catholic agency being ever instrumental in finding a place for Jahi. I googled and found a Catholic nursing home in the area that offers skilled nursing care. It does say the nursing home is for the elderly but I know from personal experience that young adults in vegetative states have been placed in such nursing homes. So i was wondering if maybe that is where Jahi would go. But there was definitely a Catholic connection mentioned so that may help figure out who the new facility might be.

Also, the last case I heard of where a brain dead person was allowed to stay on life support (Baby Mariah's case that i mentioned a few days ago), it was a Catholic Cardinal who facilitated getting her transferred to a new facility that he was on the board of or some connection like that.

 

[Donjeta]

"Judge Grillo did not authorize or order any surgical procedures or transfer to another facility. Children's Hospital Oakland does not believe that performing surgical procedures on the body of a deceased person is an appropriate medical practice."

The family's attorney, Christopher Dolan, said that the hospital's stance defied explanation.

"It appears the hospital is hell-bent on this girl going out in a box," Dolan said, adding that he would seek another hospital willing to perform the procedure. "The hospital wants to block every opportunity for Jahi to leave."

http://www.mercurynews.com/breaking-news/ci_24799647/jahi-mcmath-family-ready-move-brain-dead-girl

The hospital's stance is self-explanatory imo. They think this child is dead, and therefore it is not right nor medically indicated to perform surgery on her body.

 

[SwampMama]

http://www.mercurynews.com/breaking-news/ci_24799647/jahi-mcmath-family-ready-move-brain-dead-girl

The hospital's stance is self-explanatory imo. They think this child is dead, and therefore it is not right nor medically indicated to perform surgery on her body.

From your link is this quote from the lawyer ""They told us there is a bed; they care for children like her all the time," Dolan said. "They believe they can provide her with care and support and treat her as if she's a living person."

So is he actually admitting that is not really a living person? Because he is saying they will treat her AS IF she were a living person, which I take to mean that they know she is NOT but they will do it anyway. Interesting way for him to phrase it.

 

[Donjeta]

I find it a little scary if there really is a place that does this all the time (cares and supports dead children as if they were still living). It sounds like a creepy movie setting. Hopefully they just mean that they have experience of caring for severely injured children and being supportive of their parents.

 

[Elley Mae]

Just some info on hospice that I was unaware of.


Hospice firms draining billions from Medicare

http://www.washingtonpost.com/busin...f75bbe-68c9-11e3-ae56-22de072140a2_story.html

But over the past decade, the number of “hospice survivors” in the United States has risen dramatically, in part because hospice companies earn more by recruiting patients who aren’t actually dying, a Washington Post investigation has found.

But the survival rates at AseraCare are emblematic of a problem facing Medicare, which has created a financial incentive for hospice companies to find patients well before death.

Jim Barger, a lawyer in Birmingham, Ala., who has filed several of the suits, said the root of the problem is that a company profits when it admits patients who aren’t dying, and it is the hospice itself that helps determine whether a patient is dying.

 

[BeginnersLuck]

http://subacutesaratoga.com/about/history.html

In 1993 after numerous state assembly and senate hearing committee meetings we were able to get AB-36, the Pediatric Subacute Legislation passed and in April 1994 the program was available statewide. Today Subacute Saratoga Children’s Hospital is totally dedicated to serving medically fragile children. Subacute Saratoga Children’s Hospital along with its sister hospital, Children’s Recovery Center, are the only two state certified pediatric subacute hospitals in Northern California. Although it admits children from UC Davis and Valley Children’s Hospital in Madera, the majority of the children come from nearby bay area hospitals.

Medi-cal pediatric sub acute care bill

http://leginfo.legislature.ca.gov/faces/billNavClient.xhtml?bill_id=201320140AB1310

 

[Cherry]

The hospital will not put in the tubes required to transfer her; she is clinically dead. What the family is doing; is so wrong that I don't even hv the words.
JMO

 

[jjenny]

Understandably hospital doesn't want to perform any surgeries on what they consider a dead body. And the new facility isn't equipped to carry out surgeries.
So what is the family going to do next?
Appeal to the higher court?

 

[Minette]

Can I just say how much I appreciate all the verified medical professionals who are participating in this thread? It has helped me so much to understand exactly what is happening with Jahi and has solidified my opinion that this poor child is dead and her body needs to be treated with the dignity we allot to the deceased and left alone.

Another Christmas tragedy, another brain dead child, another court case, but in this instance it seems very likely that the court will consider that turning off 'life support' is what is in the best interests of the child.
http://www.ajc.com/news/news/local/carrollton-toddler-remains-on-life-support-parents/ncWN6/

Of course, the family is in no position to fight that decision, given that they are the ones who caused his injuries to begin with but I do think it is interesting how the different cases have been approached.

 

[BeginnersLuck]

Just like they have found facilities that will take her body and insurance that will pay for it, I would imagine they can find a physician or facility that will perform the procedure.

What happens then if her heart stops beating during the procedures, or in transport. She has already been declared dead.

I can't seem to find any specific terminology in regards to brain death in insurance policies. There are no lifetime policy limits with the ACA. There is the issue of medical necessity, but does that apply to long term care in situations like this. If there are loopholes then I suppose a insurance companies attorney could argue those in a case like this. I would think in a case like this, they would need prior medical authorization. If the physician from the facility has written orders to the insurance company, then that may be all that's necessary for approval.

Interesting that the judge gave until Dec. 30th. As of the 1st of the year, I wonder if there are changes that will benefit the family in her care and/or maybe there are just loopholes in the system already.

 

[ChristYTN]

My husbands father was playing tennis and suffered a stroke. He lay for over 20 minutes before help arrived.

He was declared brain dead that evening.
Husbands step mother and her two children insisted that he would 'come back'.
It took a week + and many 'family meetings' and some very ill feelings until they finally convinced his wife and the two step children to let him go.

It was awful.
How do you not discuss these things in advance? It has come up many times in my circle. If I am ever in any situation even close to this. Please let me go. Please.