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

[K_Z]

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.

Respectfully snipped for space and focus. BBM.

I'm a little confused as to what you mean by the investment in language? I do believe that multiple medical professionals explained the futility of the situation to NW and her family. I do think they stressed that Jahi's condition was irreversible.
It would be morally and ethically wrong for the physicians and social workers to do otherwise, in addition to being against state law and lots of other policies.

A family cannot be misled that there is an "injury" that is severe, and leave the door open to their interpretation that there is some possibility of recovery, when there is none. There are multiple laws and policies that define how death will be diagnosed, and what that means. It isn't an "optional diagnosis" that families are free to accept or reject. I'm not sure from your UK comments if you are perhaps not in the U.S., but we cannot indefinitely maintain brain dead individuals in our ICU's until the family comes to terms with the diagnosis-- however long that might be.

Families have to be told that a loved one is dead, gently. Then, if they don't understand, or reject the diagnosis of death, the message has to be consistent, and sometimes rather blunt.

Here is an excellent discussion I've linked in previous threads, between several prominent physicians, as they discuss "difficult families" and the discussion of brain death. They discuss how they each deal with these situations, and offer strategies for breaking thru denial by family members. It's a great opportunity to be a fly on the wall, observing their discussion. (It is blunt-- advisory.)

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

 

[K_Z]

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.

Respectfully snipped and BBM.

I believe that that interpretation is wholly incorrect. Our definitions of death, medically and legally, also do not agree with that interpretation, respectfully. (Individual personal exceptions being ideas held by someone who is aligned with philosophies like those held by Paul Byrne.)

I agree that death is a process, but it is also a definitive end-point.

The "process" for Jahi occurred in early December 2013, when the edema pressure within her brain inside her skull, was so much higher than arterial perfusion pressure, that the entire brain, and brain stem tissue DIED, due to lack of blood perfusion and oxygen delivery.

We are now in the aftermath of that event. The event is that her brain and brain stem was determined to be completely non-perfused and dead nearly 6 months ago. That equals death, legally, and physiologically.

She is not still in the process of dying. Jahi McMath is a deceased individual who has received 6 months of artificially prolonged somatic support.

 

[Donjeta]

MOO, and I'm neither a religious, a medical, a philosophical, or a legal authority but I think once the brain is irreversibly gone the person as we knew her is dead.

The breakdown of the rest of her bodily functions, the decomposition of her body and the development of the usual signs of death is a process that can be paused by adding or continuing somatic support.

I think some of the pro-lifers who insist that the heart beating means that the person is still alive have not really considered that the religious scriptures saying that death is when the heart and the respiration stops and the circulation ends were written when there was no such thing as brain death. If the brain function was gone, people noticed it because the heart and lungs also stopped. It was simply one and the same and there was never any need for religious scriptures to define brain death as death or not-quite-death because it didn't exist as a stand-alone phenomenon.

 

[katydid23]

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

My brother has been a malpractice atty for 30 yrs. He literally scours each minute detail of every medical procedure, looking for errors, in his cases. He says that he does not like to admit this, but sometimes, patients die during surgical procedures, and it is not always malpractice. Things happen. And there is not always someone that deserves blame.

eta: interesting too, that this is the same hospital that he took his children to for many years. And he is an Oakland attorney so he knows which places are reputable.

 

[SophieRose]

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.

Here's what happened and more on the case.

https://bioethicsarchive.georgetown.edu/pcbe/transcripts/nov07/session5.html

Now, he did not have a formal apnea test, and the reason for that is that this was before any diagnostic standards for childhood brain death had come out. And the only diagnostic standard was the President's Commission guidelines, which said you cannot make the diagnosis under age five. And he was under age five. So nobody gave him a formal diagnosis of brain death, yet clearly he was brain dead.

 

[K_Z]

More of my "quirky ponderings."

I came across an article in the journal "Neurology" from 1998. As I dug into this article more, I came across a volley of professional discussion and criticism of Dr. Shewmon's article. Was lucky enough to find links for both "full" articles for "free" to share with those interested. Pour a beverage of choice if you decide to read them-- these are complex, but fascinating, in light of the progress of the Jahi case!

Chronic "brain death": Meta- analysis and conceptual consequences
D.A. Shewmon, MD

From the abstract:

METHODS:

Formal diagnosis of BD with survival of 1 week or longer. More than 12,200 sources yielded approximately 175 cases meeting selection criteria; 56 had sufficient information for meta-analysis. Diagnosis was judged reliable if standard criteria were described or physicians made formal declarations. Data were analyzed by means of Kaplan-Meier curves, with treatment withdrawals as "censored" data, compared by log-rank test.

RESULTS:

Survival probability over time decreased exponentially in two phases, with initial half-life of 2 to 3 months, followed at 1 year by slow decline to more than 14 years. Survival capacity correlated inversely with age. Independently, primary brain pathology was associated with longer survival than were multisystem etiologies. Initial hemodynamic instability tended to resolve gradually; some patients were successfully discharged on ventilators to nursing facilities or even to their homes.

http://www.uned-illesbalears.net/Tablas/vida5.pdf

(The quote above is a nice intro to the topic, but this is one of the articles I recommend plowing thru the full version.)

And here is some of the correspondence letters from peers within and outside of the U.S. It is an interesting volley of professional criticism. We should remember that this was roughly 15 years ago. The discussion is so good, I couldn't pick out just one thing to quote.

http://img2.timg.co.il/forums/1_154271225.pdf

(This is 10 pages long, but only the first 5 pages apply to the Shewmon article cited above.)

Love the MacBeth quote!

The times have been
That, when the brains were out, the man would die,
And there an end. But now they rise again,
With twenty mortal murders on their crowns,
And push us from our stools. This is more strange
Than such a murder is.

Shakespeare, Macbeth (Act 3, Scene 4)

 

[K_Z]

Here's what happened and more on the case.

https://bioethicsarchive.georgetown.edu/pcbe/transcripts/nov07/session5.html

Now, he did not have a formal apnea test, and the reason for that is that this was before any diagnostic standards for childhood brain death had come out. And the only diagnostic standard was the President's Commission guidelines, which said you cannot make the diagnosis under age five. And he was under age five. So nobody gave him a formal diagnosis of brain death, yet clearly he was brain dead.

Thank you, Sophie Rose! Did we mind meld over the Alan Shewmon thing at the same time??

Jinx-- you owe me a coke! :floorlaugh: :loveyou:

 

[Donjeta]

Can you repost the discussion link, KZ? Those are both the same story.

 

[K_Z]

Sorry!! Here they are. Will edit above.

http://www.uned-illesbalears.net/Tablas/vida5.pdf

http://img2.timg.co.il/forums/1_154271225.pdf

 

[CHERIE.T]

Here's what happened and more on the case.

https://bioethicsarchive.georgetown.edu/pcbe/transcripts/nov07/session5.html

Now, he did not have a formal apnea test, and the reason for that is that this was before any diagnostic standards for childhood brain death had come out. And the only diagnostic standard was the President's Commission guidelines, which said you cannot make the diagnosis under age five. And he was under age five. So nobody gave him a formal diagnosis of brain death, yet clearly he was brain dead.

:tyou: For an important link.

 

[Donjeta]

http://kvpr.org/post/commentary-what-death

Should parents have to option to determine the definition of death for their children? Jahi McMath’s case has motivated that question, along with a host of associated ethical concerns. In this edition of Valley Public Radio’s The Moral Is, Christopher Meyers, Professor of Philosophy at CSU Bakersfield and a clinical ethicist, concludes that there are medical, scientific and moral reasons why determinations of death must be left to health care experts.

 

[Hekattee]

I can't believe that this is still going on, nearly 6 months after that poor child was pronounced brain dead. I'd like to find out exactly what the link is to this organization.

http://www.ibrfinc.org/protocol_patient_progress.htm

The words 'brain research' sound like some sort of macabre experiment.

One of the patients is Jessica Huse, on her fb page there's a photo of her Mum with Nailah.

 

[K_Z]

New article about Jahi McMath in July issue of Essence magazine. (Intro only online.)

http://www.essence.com/2014/06/05/jahi-mcmath-nailah-winkfield

Fighting for Jahi

Editor’s note: The following account is solely attributed to Nailah *Winkfield, mother of Jahi McMath, and other members of Jahi’s family. Children’s Hospital & Research Center could not respond to our specific requests for comment as it did not have permission from Winkfield to discuss Jahi’s medical case in accordance with HIPAA privacy laws.

Her easygoing sweetness set her apart from her feistier siblings, who have seen their sister just once in the seven months since her surgery.

Bold by me.

That adds to NW's previous comment about "back in in California". Seems likely, IMO, they took Jahi's body out of state, and NW is there either full time, or much of the time (she said she personally does weekly manicures for Jahi's body, and reports being there pretty much daily).

I think it's very sad that the other living kids haven't been able to be with their mom. I'm sure they are well cared for by friends or relatives, but this is the kind of family crisis where I wish they could all be together, since the timeframe is prolonged. The decisions made about Jahi's body obviously affect the other kids' lives, too. The whole thing is so sad and dysfunctional.

edited to add: Wow. The comments after the article are brutal.

 

[Quester]

Wow ... First I've heard, according to grandma the nurse, Jahi herself was suctioning as well as grandma:

"Jahi and I were both trying to suction . out of her .
ya know . Jahi was spitting the blood out ...
and I kept monitoring all the monitors ... "

Grandma: 'Just pray for Jahi, please'
HLN; Published on Dec 18, 2013
http://youtu.be/2ZhhTWhlW9c?t=1m37s
​

I understand it would have been highly inappropriate for grandma to be suctioning Jahi but
doesn't it seem highly unlikely that Jahi herself would have been doing any suctioning? TIA

 

[Philigumbo]

Working in the peri-operative field for 15 years, I have seen many patients given a Yankauer suction device after a tonsillectomy to put TO THEIR LIPS themselves to suction saliva if it is too painful for them to swallow. Education is given not to place the suction in the mouth, only to the lips. Even little kids comply. The back of the throat is numb and they don't feel like they are swallowing, so they drool. The saliva is usually a bit bloody and it gets messy and scary for them. In a bad post-op bleed after a tonsillectomy, which I have seen occur as long as 10 days after surgery, it is usually the dislodging of the clot (or later scab) that allows for bleeding -so much so I've seen patients bent over emesis basins spitting out large amounts of blood. Very frightening for them. They are taken back to the OR for sedation (or general anesthesia) and the area again cauterized. It would not be unusual for suction to have been provided in Jahi's case for her to use at lip depth. I'm not speaking of deep oral suctioning, which would be inappropriate after that surgery, and, believe me, most patients wouldn't let you near the back of their throat after a tonsillectomy. If they are bleeding, WE don't even do deep oral suctioning. We lean them forward over a basin to avoid them swallowing blood which will most likely cause vomiting, making the situation worse.

 

[Quester]

Commentary: What Is Death?

... In short, and like it or not, Benjamin Franklin was right: Death and taxes continue to be certain, and no amount of wishing or hoping will make it otherwise.

http://kvpr.org/post/commentary-what-death

 

[Donjeta]

New article about Jahi McMath in July issue of Essence magazine. (Intro only online.)

http://www.essence.com/2014/06/05/jahi-mcmath-nailah-winkfield



Bold by me.

That adds to NW's previous comment about "back in in California". Seems likely, IMO, they took Jahi's body out of state, and NW is there either full time, or much of the time (she said she personally does weekly manicures for Jahi's body, and reports being there pretty much daily).

I think it's very sad that the other living kids haven't been able to be with their mom. I'm sure they are well cared for by friends or relatives, but this is the kind of family crisis where I wish they could all be together, since the timeframe is prolonged. The decisions made about Jahi's body obviously affect the other kids' lives, too. The whole thing is so sad and dysfunctional.

edited to add: Wow. The comments after the article are brutal.

Yeah... if it was just a single mother and her only child it wouldn't matter so much if she wanted to hold on to futile hope indefinitely but those siblings have lost more than their sister here.


OT but I don't understand why it's the July issue for sale now, it's the 9th of June. Many things could happen until July that would make the stories sadly out of date by then.

 

[CarolinaMoon]

New article about Jahi McMath in July issue of Essence magazine. (Intro only online.)

http://www.essence.com/2014/06/05/jahi-mcmath-nailah-winkfield



Bold by me.

That adds to NW's previous comment about "back in in California". Seems likely, IMO, they took Jahi's body out of state, and NW is there either full time, or much of the time (she said she personally does weekly manicures for Jahi's body, and reports being there pretty much daily).

I think it's very sad that the other living kids haven't been able to be with their mom. I'm sure they are well cared for by friends or relatives, but this is the kind of family crisis where I wish they could all be together, since the timeframe is prolonged. The decisions made about Jahi's body obviously affect the other kids' lives, too. The whole thing is so sad and dysfunctional.

edited to add: Wow. The comments after the article are brutal.

I've let up on following this thread, only reading occasionally. One comment made in the introduction stood out to me.

According to Winkfield, Frederick Rosen, M.D., the operating surgeon, recommended the surgery to treat Jahi’s sleep apnea, which was caused by enlarged tonsils that made it difficult for her to breathe and swallow.

http://www.essence.com/2014/06/05/jahi-mcmath-nailah-winkfield

I have to wonder if she also had these problems when awake.

 

[minor4th]

I have not followed this case in depth and did not know the current status til I read this post.

Question: is the mother's position based on religious beliefs at all?

 

[seattlechiquita]

I have not followed this case in depth and did not know the current status til I read this post.

Question: is the mother's position based on religious beliefs at all?

I could say it's based on pure stupidity, but that would not be very nice.

I think there are tinges of religious beliefs, but mostly is plain ignorance and denial. She believes her daughter is alive and improving. Never mind she was declared dead by a triad of doctors.