Monday, 9 November 2015

Jahi McMath update

In lieu of a stupid patient story this week, I have an update on the Jahi McMath saga.  That's right, the story that just won't go away still hasn't gone away - Jahi McMath's family has filed an amended complaint (thank you Professor Thaddeus Pope for uploading it) stating that they have evidence that she is, in fact, alive.

A board-certified pediatric neurologist claims to have examined her and has determined that she does not meet brain death criteria.  As Prof. Pope explains, the focus will be on paragraphs 30-36.  I'll present some excerpts from the complaint followed immediately by my thoughts on each.
30.  Since the Certificate of Death was issued, Jahi has been examined by a physician duly licensed to practice in the State of California who is an experienced pediatric neurologist with triple Board Certifications in Pediatrics,  Neurology (with special competence in Child Neurology), and Electroencephalography. The physician has a sub-specialty in brain death and has published and lectured extensively on the topic, both nationally and internationally.  This physician has personally examined Jahi and has reviewed a number of her medical records and studies performed, including an MRI/MRA done at Rutgers University Medical Center on September 26, 2014. This doctor has also examined 22 videotapes of Jahi responding to specific requests to respond and move.
This is specifically different than their prior claims in that this time a board-certified physician, a pediatric neurologist, in fact, has actually personally examined her.  According to the complaint he has also watched 22 videos of Jahi responding to verbal stimuli.  This paragraph gives me great pause for two reasons.  First, why is the physician not named?  There is much speculation that the doctor is Alan Shewmon, who is a vocal opponent of brain death, but why not reveal his name?  Second, why should he have to watch videos of Jahi supposedly responding to voice commands if he has personally examined her?  Did she not respond to commands when he was with her?  And are these the same lousy quality videos that have been posted and scrutinised already?  This strikes me as very odd.
31.  The MRI scan of September 26, 2014, is not consistent with chronic brain death MRI scans. Instead, Jahi's MRI demonstrates vast areas of structurally and relatively preserved brain, particularly in the cerebral cortex, basal ganglia and cerebellum.
32.  The MRA or MR angiogram performed on September 26, 2014, nearly 10 months after Jahi's anoxic-ischemic event, demonstrates intracranial blood flow, which is consistent with the integrity of the MRI and inconsistent with brain death.
Cerebral blood flow and MRI scans do not factor into clinical brain death.  And why are they referencing an MRI/MRA from over a year ago?  Don't they have a more recent study?  If not, why not?  If so, why don't they present it?
33.  Jahi's medical records also document that approximately eight months after the anoxic-ischemic event, Jahi underwent menarche (her first ovulation cycle) with her first menstrual period beginning August 6, 2014. Jahi also began breast development after the diagnosis of brain death. There is no report in Jahi's medical records from CHO that Jahi had began pubertal development.  Over the course of the subsequent year since her anoxic-ischemic event at CHO, Jahi has gradually developed breasts and as of early December 2014, the physician found her to have a Tanner Stage 3 breast development.
34.  The female menstrual cycle involves hormonal interaction between the hypothalamus (part of the brain), the pituitary gland, and the ovaries. Other aspects of pubertal development also require hypothalamic function. Corpses do not menstruate. Neither do corpses undergo sexual maturation. There is no precedent in the medical literature of a brain dead body developing the onset of menarche and thelarche.
I find it very hard to believe that Jahi, who was 13 at the time of her operation, had not started menstruating already.  According to a recent study of American girls, the average age of thelarche (breast development) is 9.7 years and menarche (onset of menses) is 12.8 years (12.2 for black girls).  It is highly probable that she had started menstruating already, and besides she would also not be the first brain dead child to undergo puberty, so these paragraphs are essentially irrelevant.  What bothers me most about this paragraph is that she had already started to develop breasts before her surgery as this picture proves:
This is a blatant lie in the complaint - she had undergone thelarche without question, likely years before (statistically speaking).  If they are so willing to make such an obvious lie in a legal document, what else are they willing to lie about?
35.  Based upon the pediatric neurologist's evaluation of Jahi, Jahi no longer fulfills standard brain death criteria on account of her ability to specifically respond to stimuli. The distinction between random cord-originating movements and true responses to command is extremely important for the diagnosis of brain death. Jahi is capable of intermittently responding intentionally to a verbal command.
This is the key paragraph.  The anonymous neurologist claims that she responds to stimuli . . . intermittently.  If this is actually true, then she is not brain dead.  However, that is a very big "IF", and it hearkens back to the question of whether or not she was able to respond when examined by the neurologist or only on video.  If she was only responding to voice on the videos, that is worthless as evidence in my opinion.  If I were the presiding judge, not in a million years would I accept those vague and unreliable videos as evidence of anything.  What this paragraph does not say is that the doctor performed (and that Jahi passed) a bedside brain death exam.  Perhaps I'm reading too much into it, but perhaps not.
36. In the opinion of the pediatric neurologist who has examined Jahi, having spent hours with her and reviewed numerous videotapes of her, that time has proven that Jahi has not followed the trajectory of imminent total body deterioration and collapsed that was predicted back in December of 2013, based on the diagnosis of brain death. Her brain is alive in the neuropathological sense and it is not necrotic. At this time, Jahi does not fulfill California's statutory definition of death, which requires the irreversible absence of all brain function, because she exhibits hypothalamic function and intermittent responsiveness to verbal commands. 
There are numerous reports of brain dead patients being kept on somatic support for years without their bodies deteriorating, so the fact that this has not happened to Jahi is also irrelevant.

In all, the evidence supplied by Jahi McMath's lawyer is suspect at best, worthless at worst.  I am incredibly curious why the neurologist was not named - this seems a very strange way to run a high-profile legal case.  Perhaps the anonymity was maintained because it is so high profile, but perhaps one of the lawyers here could shed some light on whether or not this is typical.  Regardless, I will wager these claims will be enough for the judge to allow the case to continue.

My one takeaway from this update is that if paragraph 35 is true, if she is truly able to respond to verbal stimuli, even intermittently, then she IS NOT DEAD.  Full stop.  Keep in mind that any claims of responsiveness made by the family will need to be verified by an outside neurologist.

And with that, I will open the comments to whatever wild speculation your brains can come up with, except for one particular individual who remains banned and whose comments will be deleted immediately (you know who you are).

356 comments:

  1. I'm a simple person. Doesn't a declaration of death, or overturning the declaration of death, involve performing at least one test upon the patient? Reviewing tests performed by others doesn't strike me as demonstrating anything new.

    Why hasn't the unnamed board-certified pediatric neurologist attested to the examination performed and any and all tests that could possibly overturn the death certificate? Why is the legal team being so coy with this earth-shattering information?

    Wednesday

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  2. Thanks Doc. You summed it up nicely and asking all the questions that I am asking. Most importantly, why does it not state that she responded to the neurologist's commands and did he perform the required testing? I concur that the judge will allow this to move forward and the family's attorney will make it very confusing for the jury. After all, the family has smeared the name of CHO, and has tried this in the public already with the goal to slant the potential jury pool.

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  3. "My one takeaway from this update is that if paragraph 35 is true, if she is truly able to respond to verbal stimuli, even intermittently, then she IS NOT DEAD."

    This seems to be a very peculiar way to put it. If you say, "Move your foot" and she doesn't do it six times; then on the 7th she moves her foot- with all the involuntary movements it would be hard to say this is not just coincidence. That would be intermittently though. Its very easy to prove she is listening and comprehending using the word intermittently. Just take her normal movements that occur in brain dead people and say the same command each time. One of those times you will be right. But it doesn't mean she did it on purpose.

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    1. You misunderstand me. The only thing that matters is whether or not she responds to verbal commands. Even if she does it once, it counts, but only if she is actually responding, not simply having involuntary reflex movements. I hope that makes sense.

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    2. How can you tell the difference if it happens intermittently? I was actually not jumping on what you said, I just used your quote. I think that particular claim in the complaint is a bit vague. Sorry for the confusion. :)

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    3. I understand your confusion, as I wasn't entirely clear. It can be difficult to tell what is voluntary when it comes to a finger twitch. That is exactly why the videos that have been show have not been at all compelling.

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    4. Okay, they are trying to say she is making movements not consistent with brain death. Intermittently they make a command that would not automatically happen anyway and she follows it. I think I understand now. I agree though that the videos aren't showing that, at least not the ones they have shared.

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    5. For instance, if Jahi's mother told her "squeeze my hand" and she did it one time after six commands, that would indicate a purposeful movment. But if she's lying there twitching fifty times a day and then she does it after her mother's command, well...carry on.

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    6. It would also, IMHO, be important to have someone besides a family member witness "Jahi responding" without *any* connection to an EMS machine in place at the time. The homemade videos, which never really show us a whole picture, won't provide "proof" of anything.

      EMS machines are designed to be used on arms and legs, and are *not* supposed to be used across the chest, on the neck, or on the head. If Jahi can "hear" and "respond," why have we never seen a video of movement in response to a command to turn or lift her head a bit, open her eyes, or try to smile? The videos have never shown *any* kind of movement except for hands, lower arms, and feet.

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    7. I wouldn't credit any video evidence, as it is too easily edited.

      In the Terri Schiavo case, her family released around 4 minutes of video that supposedly showed her responding on command.

      But that 4 minutes was edited down from over 4 _hours_ of video.

      News organizations who viewed the entire 4 hours reported she failed to respond for hours at a time to commands from either her father or doctor.

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  4. It appears to me the lawyers are just trying the old 'evidence' again and trying to make it stick with fancier wording. I don't see anything new happening with Jahi and I haven't seen any video evidence to prove she is alive. There has been no new earth shattering testing and she is not responding now any more than she responded 2 years ago. That is how I see this. Fancy wording.

    I sincerely hope the judge sees this the same way and insists on proper testing. I don't know why they have dithered so long with this charade.

    It all leaves me to wonder if they are going to try to fool a jury into believing the video taped lies are true and my fear is that this will be allowed.

    Kate Johnson

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    1. The video tape alone would not be enough to persuade the jury that Jahi is alive. It would take a lot more than that.

      They will present evidence proving that Jahi does not fit the UDDA's brain death criteria and that is going to be the main focus of their argument.

      I would not be surprised if they drop a bombshell challenging the UDDA during trial.

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    2. Would that "bombshell" be a challenge to the integrity of the apnea test Dr. Fisher performed, John? You made this claim on The Medical Futility blog recently. Are you holding yourself out as an expert on the apnea test standards and what is and is not acceptable?

      I trust Fisher knows how to perform an apnea test since he is a pediatric neurologist.

      Haven't you claimed to have passed this info on to Brusavich?

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    3. This comment has been removed by a blog administrator.

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  5. I'm eagerly awaiting CHO's and Rosen's answers to the complaint. This is just the beginning of what is going to come down to a battle of the experts. If plaintiffs are referring to Shewmon, and I'm certain they are, his opinions on brain death are still outside those of the mainstream medical community. I'm not sure he will pass the Daubert challenge that defendants are sure to request if this goes to trial. A case management conference is scheduled for December 11, at which time the judge will likely set deadlines for written discovery and depositions of the plaintiffs and experts, as well as percipient witnesses (such as nursing staff).

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    1. I agree, it will be interesting to see how Daubert standard application plays out. Two major aspects that come to mind are the degree to which the expert's theories and techniques are generally accepted by the relevant scientific community, and whether or not the expert's testimony itself is the product of reliable principles and methods.

      Sure, we know that the amended complaint itself doesn't contain the factual details of what will actually *be* submitted. Still, it seems odd that it mentions the doctor having personally examined Jahi, spending hours observing her, and reviewing numerous videos relevant to her condition, but there's no hint about any new *test* results, just a rehash of the same information cited over a year ago. We have to wonder what kind of actual medical testing, if any, has been performed *since* that time.

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  6. Am I the only one that thinks it is odd that she spent from January until July or August of 2014 as an inpatient in a hospital in NJ, and yet there is not one nurse or Dr, or even a CNA, cleaning person, ANYONE that is coming forward to confirm voluntary movement; and that fact has not been addressed? If it happened, someone would have seen it! If it happened, the scamily would have been jumping up and running to grab a witness! There is no possible it happened without witnesses!!!

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    1. Simple- even if they witnessed it, HIPAA would prevent them from saying so. Of course the reverse is also true. Unless and until they are summoned under subpoena, they can't talk.

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    2. An adult may waive their HIPAA rights, and an parent or guardian may waive a minor's rights. One would think that if the medical personnel could verify the family's claim, they'd be asked to do so.

      I'd also note that in a court proceeding where you put your physical condition into contention, you have waived your HIPAA rights to the extent that your medical records are relevant to the court proceeding/

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    3. Defendants will subpoena all of Jahi's medical records from the time she left CHO. Nailah will have to disclose all of those providers and facilities in her responses to the defense interrogatories and will have to sign authorizations to release the records. If she refuses, that will be brought up to the judge and he can compel her to sign if she hopes to pursue the case.

      In a legal proceeding for medical malpractice, expert reports for both sides are produced to each other during the expert discovery phase. The plaintiffs are not required to produce any report, or even name their experts, in a complaint.

      The deadlines to exchange expert witness information (their names, CVs, and reports), as well as the date by which expert depositions must be completed, are set by the judge. The discovery deadlines, and possibly a trial date, will likely be set at the case management conference on December 11.



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    4. cleopatra is correct. It's premature to expect expert-witness details or HIPAA waivers.

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    5. The family would have asked then to come forward if they had anything to say to prove they were right. They could and would waive hipaa

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    6. There's another very odd information gap here, which I hope will be noticed by both the court and the defendants.

      Sure, we know that Jahi was in St. Peter's Hospital from January until sometime in the summer of 2014, so there are hospital records that can be reviewed. But what about medical records from then until *now*?

      There is *no* mention made in the amended complaint of who has been responsible, as a medical professional, for the "care" that has been in place for this time, and apparently still continuing. Will no one question the fact that a patient who is either brain-dead, or profoundly disabled by anoxic brain injury, depending on one's point of view, has been receiving the equivalent of 24/7/365 ICU-level nursing care in a private residence for more than a year now, yet we've not heard from her attending physician?

      For a while, we were wondering how Jahi's family was able to get the medical maintenance paid through Medicaid, since that requires a doctor to sign off on medications, medical supplies and equipment, the in-home nursing care, etc. We were pretty certain that Dr. Fellus wasn't able to do this once he lost his license.

      Then, when the Medicaid documentation was submitted by the plaintiffs in their first demurrer responses, we *did* find the name of a doctor. It's Dr. Alieta Eck, who, with her husband, runs a free clinic in the NJ community in which Jahi's family resides. She is also affiliated with St. Peter's Hospital. But her specialty is internal medicine, nothing related to neurology. We don't really know how Jahi's family found her...my speculation is that maybe when they were panicking about having to take Jahi out of the hospital, the hospital social work staff or someone in the community referred them. Whatever the case, Dr. Eck has categorized Jahi's condition as "anoxic brain injury" for Medicaid coding purposes. My speculation is that she isn't really "hands-on" with the case, in terms of visiting Jahi and the family on a regular basis. Perhaps she's just signing off on the medication plan that Dr. Fellus already had in place, and on the other supplies and nursing services needed for in-home care, as a way of helping the family while they sort things out legally.

      Still, IMHO, it's odd that there's no mention made of getting reports and opinions from the doctor who, per Medicaid documentation, is the party responsible for authorizing the continuing medical maintenance. Hopefully the court, and the defendants, will raise this question.

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    7. Cleopatra, I wasn't familiar with the Daubert standard so I looked it up. It appears CA is one of the few states that still adheres to the Frye Standard. What significance, if any, does this have on the McMath case?

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    8. Calif has not been a pure Frye state since Sargon v USC (2012), where the state sup ct supported trial judges' gatekeeping role re: expert witnesses.

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    9. I doubt that Dr. Eck's involvement was due to chance. She's an ultraconservative anti-evolution evangelical who graduated from the same med school (St. Louis) that Paul Byrne did and also has a pharmacy degree.

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  7. In the video of Jahi moving her fingers, it can quite clearly be seen that there is a lead extending from her palm downwards. As has been pointed out by people who use such machines, it is a TENS pain relief pad that has been placed on her palm. The mother makes the command, presses the button and voila! the fingers move. This is now a blatant lie that is being told to the supporters and more evidence of fraud.

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    1. I see that. Also there are no fingertips showing, someone could be pushing the fingers.

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    2. It is possible that someone is holding the fingers apart to make the machine work to the best of its ability. Who therefore told them about the TENS machine, was it the body building uncle, who may use it for pain-relief after lifting weights? Or the IBRF who use electrical stimulation to fool clients into thinking that their loved ones are still there?

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    3. It's also very possible that what is being used is not a TENS machine (typically used for pain relief) but actually an EMS machine (electrical motor stimulation device) that is being used as part of whatever physical therapy is being given to counteract muscle deterioration and atrophy. The actual medical purpose of the muscle contractions caused by the EMS machine stimulates is to tone the muscles, to compensate for the fact that the patient can't move on his or her own. But, we already know that this family tends to interpret even a spinal reflex movement as "proof that Jahi is alive and responsive." So, it wouldn't be at all surprising if they've learned to use the EMS machine in such a way that the movements it causes can be coordinated with vocal commands when it suits their purpose.

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    4. More info on EMS, from Google U... :)

      https://en.wikipedia.org/wiki/Electrical_muscle_stimulation

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    5. I think the TENS skeptics have mostly been either unaware more potent machines were available or thinking the family might have access to a TENS but maybe not the more potent device.

      but yes - there is a possibility they are using electrical stimulation, or more basic methods to fake the videos, rather than trusting to chance and editing.

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    6. I watched the video on the Facebook page of her her finger moving, the one with the white tube running under her hand. When video is running you can see the white tube running up the blanket above her hand. I am a home health nurse in Calif, my little boy patient has feeding tube that looks exactly like this.
      I just wonder why they just show her hand . Or they will just show her face, or her fingers, or feet. Never all of her at once. Do they ever get her up in a wheelchair?

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    7. @anon 11 nov at 1600 no probably not. They only show what at certain angles would be beneficial to their case. If you show a hand moving it sends a different message than showing that someone is using a device to make it move which they apparently are. Had they been able to get her up in a wheelchair they probably would show it but then again i dont think theyve made that claim. Yet. If they did release a video or picture of her in a wheelchair theyd likely only show her legs or something so as not to show shes being held up by others in the chair and knowing them theyd likely also say she did it herself. But i digress. And not to be intrusive or anything but out of curiosity what does your patient have that requires him to have a feeding tube? Dont answer if you dont want to im just curious.

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    8. Also notice the thumbnail and the ring finger (though you have to be quick to see the bottom of the ring fingernail) in the same video - they're not painted; they have no nail polish on them. The pinky finger does, however this vid was not taken the same time as the picture showing ALL her painted nails for her "birthday." Has anyone caught the lack of nail polish?

      I also notice the white cord under her hand, but that cord might be continuing upward on the other side of her wrist. Not saying a TENs unit is not being used, however; probably is. You can actually buy one without an Rx for less than $100, so anyone can get one of these.

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    9. Could it be that sitting her upright could cause a dangerous fluctuation in her blood pressure? I don't think it's realistic when you are dealing with a patient who has been diagnosed as brain dead. I mean what would be the point of putting them in a wheelchair if they have no control over their body?

      You didn't say how disabled your patient is, comatose, in a PVS or just vent dependent but conscious? I'm curious as to the level of care involved in maintaining someone who is brain dead.

      I know their position has to be adjusted regularly to prevent pressure sores and physical manipulation of their extremities would be important to avoid contractures but does the physical therapy end there?

      I'm surprised that feeding tubes are so small in diameter. Someone else guessed that it might be the lead from a pulse oximeter.

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  8. I'm just going to pick on the phrase I mentioned in another forum:

    they talk about chronic brain death. does that mean there is also acute brain death that the patient gets over in a few weeks?

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  9. Thank you doc for answering on this and looking into as a CA native an about 45 min from Oakland I hope that if this family believes this child is alive and not brain dead then they ship her back to CA and bring her into court proving in front of a judge that she is alive and not just having random nerve firing sequeces which is all her body can do now. This has become a sad sad tale of a child of a parent who wants nothing but money and greed controls thier lives I pray she gets laid to rest since she passed almost two years ago

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  10. Shewman coined the term "chronic brain death" to describe patients who were supported long term after their diagnosis, an are he was particularly interested in. The following exchange from a brain death conference he participated in at Georgetown University in 2007 makes this part of the complaint hard to understand:

    In the opinion of the pediatric neurologist who has examined Jahi, having spent hours with her and reviewed numerous videotapes of her, that time has proven that Jahi has not followed the trajectory of imminent total body deterioration and collapsed that was predicted back in December of 2013, based on the diagnosis of brain death.

    Let's allow Shewman to explain it himself:


    DR. SHEWMON: Yeah. And a slide that I didn't have time to show states, "Why are these cases so rare?" And the slide says that the kind of case that I'm showing you is extraordinary and that certainly 99.99 percent of cases of brain death have somatic death, if you will, within a few days. Now, why is that? Now, I would answer that the reason that is — and the reason Dr. Posner hasn't seen cases like this is — that the diagnosis is a self-fulfilling prophecy. In this day and age and for many decades, as soon as that diagnosis is made, the patient either becomes an organ donor or ventilation is discontinued. So there has been all along no motivation whatsoever to try to maintain those patients. So these cases are rare because the motivation to maintain them is exceedingly rare.

    Now, where there is motivation the prolonged survival is not so rare. Okay? So we're talking about the rare cases where there is motivation to push through the acute phase of instability. What are those motivations? Pregnant women who are brain dead is one kind of motivation, personal beliefs like in these cases I showed you—they're rare, but we see them—and cultural or societal reasons, like in Japan. Many of the cases of prolonged survival are in Japan where that society is less open to these ideas.

    So to find these cases, one just keeps an eye out, and I had to pay with my own money to fly halfway across the [world] to make this video of T.K. So I think, rather than say, "Well, this just doesn't occur in my experience; therefore, it doesn't occur anywhere," is not quite fair. These are very well documented cases now, and just because Dr. Posner hasn't seen the documentation, which I will be submitting hopefully soon for publication, doesn't mean they didn't exist. And I think it behooves us to learn everything we can from them.

    The last paragraph explains quite nicely why he is so interested in the McMath case. He flies all over the world, at his own expense no less, to study such cases.

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    1. and he denies that brain death is a thing at the same time he admits that they will never recover because they are, for all practical purposes, dead.

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    2. Jahi's case does indeed present an interesting "research opportunity" for Dr. Shewmon. If I recall correctly, T.K,'s brain death occurred when he was, I think, just 3 or 4 years old, so he never really physically grew and matured normally, even though his body was maintained for about 20 more years, But since Jahi was already 13 at the time of her demise, she had already made considerable progress in her physical growth and her maturation process (puberty). Jahi's body may also be in generally-better condition than T.K.'s was, just because the level of medical maintenance it is receiving is probably much more advanced than what was available to T.K.'s mother 20 years ago. One thing that comes to mind is the hormone replacement therapy which may be, in Jahi's case, significantly compensating for functions NOT being performed by the damaged hypothalamus and pituitary,

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    3. so let shewmon sponsor the study. I got nothing against studying things - and even brain dead people, if their family allows it.

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    4. And...if they're willing and able to PAY for it. Obviously, that's not the case here. They already lost their "sponsor," when the IBRF bailed out.

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  11. Doc, I have to disagree with one point you made. Your assessment of their evidence as "suspect at best, worthless at worst" leaves a whole realm untouched on the bottom end. Their evidence is far worse than worthless. It is beyond disingenuous or damning. It is disgusting. It is pure lies as distilled by evil people for dark agenda.

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    1. Fair enough. That's a bit harsh in my opinion, but I can certainly see how you (and a lot of other people, it seems) have come to that conclusion.

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    2. I'm inclined to feel that the worst would be "fraudulent."

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  12. This is a link to that Georgetown University conference in which one can learn all you need to know about Alan Shewman's opinion regarding brain death:

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

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  13. There have been 3 cases of brain death in the national news in the USA since 2013 including Jahi. In 2 of those cases (Jahi and the Arizona case), hospitals are involved and large dollar amounts at stake from lawsuits. Deep pockets. In both of those cases the "anti-brain" death groups are out in force. The quack IBRF is involved and Bryne, Caulk and Defina in both cases where "big money" is possibly at stake, yet for the last case of Mikey Lavecchia whose father was a fault for his death and there is NO big money at stake (single car wreck, dad at fault), this same group was very quick to conclude that he was indeed brain dead and not coming back (he "lived" for 3 weeks after being declared brain dead). Mikey's mother stated that these "experts" told her he was indeed brain dead. So the question is what was different about Mikey and the answer is money. Mcmath and Hailu are worth more money if "kept alive" then if allowed to die and there are deep pockets to pay.

    This really does call into question the motives of those involved with these families.

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    1. We don't know all that much re: the LaVecchia case. Maybe he was incontrovertibly, unsalvageably dead even to the anti-BD squad. The family also could still try to sue some parties somewhere, depending on the facts of the case.

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    2. Marlise Munoz, TX (the pregnant and brain-dead) got a lot of national press (perhaps even more than Jahi and Perla Perez) and the quacks weren't involved there either. It seems deep-pockets and highly emotional family that doesn't accept brain death is the key combination to get the Byrne unit in gear.

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    3. That is a good point that the combination is deep pockets and highly emotional families. In the Texas case the family wanted to stop and the hospital wanted to stop but the hospital felt the law prevented them from stopping. So the hospital supported the family going to court in that case.

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    4. The quacks weren't involved in the Munoz case because they weren't invited.

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    5. Just a point of information regarding the Aden Hailu case, which is now before the Nevada Supreme Court....it is not a medical malpractice suit, and so does not seek any financial compensation.

      The family is appealing the hospital's refusal to perform the two additional surgical procedures (tracheostomy and gastrostomy) that are required to transfer Aden to a long-term-care arrangement, and their refusal to administer some medications that Dr. Paul Byrne has recommended (thyroid, the usual cocktail of hormones and vitamins). The hospital believes that these procedures would have no medical value, and be futile care for a patient already brain dead. Paul Byrne, of course, has very minimal value to the family as their "medical expert." Besides the fact that the hospital staff and the lower courts have already determined that he's a quackadoodle, he's not licensed to practice in the state of Nevada, so of course has no hospital privileges there.

      Pending the court's decision, St. Mary's Hospital continues to provide basic medical support (ventilator, feeding and hydration, general physical care) as they have since April 1 of this year. The hospital has respectfully asked the Supreme Court to expedite the case as much as possible, for obvious reasons.

      Over the ensuing months, the hospital has offered to assist the family by allowing any other state-licensed doctor of their choice to utilize its facility to perform the requested surgical procedures, and also to help facilitate the transfer to another hospital or long-term-care facility,. Problem is, the family hasn't found another doctor willing to assume responsibility for Aden's care... so now they want the court to order St. Mary's to perform the surgeries and administer the requested treatments. .

      The basic arguments in the Hailu case and the McMath cases are similar...both families refuse to accept the current medical criteria for DDNC, so want the courts to change the criteria, so that their brain-dead loved ones would be considered "alive" instead of "dead." But at this point in time, Hailu's family is not looking for a financial payoff. Aden's medical expenses to date have been covered by the family's private insurance, since although the DDNC was made by hospital staff, there has not yet been a death certificate issued.

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    6. What you are saying is correct. The father has already said in the news that he blames the hospital for her current state. Whatever the outcome of the court case, her family will sue the hospital and their lawyer has told them I am sure that she is worth more alive than dead. That is the point. While this part of the case is not about money the outcome determines how much money is at stake in part 2.


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    7. Anon 16:56, we can't assume what Aden Hailu's father's motivation will be.

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    8. Agreed. We have to remember that the only "relief" being sought by the family, at *this* point in time, via the current court case, is to have the court order St. Mary's Hospital to provide the continuing care that the family believes is appropriate. Until this case is decided, there's no way to know what might happen next.

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  14. I am wondering why a new MRI and brain dead testing has not been done? Have her in a hospital to be checked to be 100% either way. Also on the latest video of her finger twitching , could to tube running under her hand be the feeding tube?

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    1. I think that the Very limited picture frame of the latest "movement" is because it really is a spinal reflex which would be easy to determine if the whole body was shown. I think the "white cord" is a pulse ox probe for monitoring oxygen levels. Also the family frequently refers to her as a "sleeping angel" or still "sleeping" and they never seem to take her body out in public nor do they show her receiving any types of therapy or rehab. I follow many "kids via FB" and they are all getting therapy and up out of the bed, yet Jahi's body has spent 2 years in a bed. Where is the wheelchair? Why is she not shown receiving school services? Why does the family not post regular updates like other families? Why are updates only posted when court ramps up? Easy answer: She is dead and it is about money.

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    2. I think one of the problems associated with additional testing, whether it be MRIs, EEGs, or anything else that will need to happen at a hospital or clinic, will be the logistics.

      Remember that the "evidence" Dolan presented more than a year ago was considered questionable for that very reason...the EEG was done in the family apartment by someone who wasn't a qualified tech, and the MRI was done at the Rutgers University med school lab, not at the hospital. Tests at a hospital need to be ordered by a doctor associated with that facility, and a doctor's residency status and admitting privileges are, of course, predicated upon being licensed in that particular state. So, even if Dr. Shewmon (or whoever) actually went to NJ to examine, visit, and observe Jahi, a California license wouldn't entitle him to claim Jahi as his patient, relative to ordering tests at a hospital. I figure we're safe in assuming that no one has found a NJ doctor willing to do that, otherwise Jahi's family would have her body in a hospital instead of in an apartment.

      It will be interesting to see how the court, and the defendants, handle this challenge (having their respective experts witness or perform additional testing) with Jahi's body in NJ, and all the doctors involved in the court case in California.

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  15. The three released thus far to the public have no time stamp on them. In one, Mother's Day graphics are visible behind the bed which would suggest that it was filmed at some point shortly before or after Mother's Day in 2014. The two that allege to show Jahi moving her foot and hand on command look to be taken at the same facility and one has the Mother's Day graphics. Since she moved into the apartment in August 2014 both of those had to be filmed prior to that. Who knows how old the latest video showing the twitching fingers is.

    If there are 22 videos that supposedly convinced a neurologist that she is capable of intentional movement one has to wonder why none of them have been released.

    I wonder what would happen if Jahi's mother stood at the bedside and repeated a nonsense sentence for several seconds. If a hand, foot or finger twitched wouldn't it be safe to assume the movements are random or due to some auditory reflex?

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  16. Doc B - since you've invited us to engage in "wild speculation," as long as it's relevant to the topic, I figure it's only fair to share my own "full disclosure" statement with the group here. :) For those who haven't yet picked up on the discussion threads on Prof. Pope's site, the speculation about Dr. Shewmon being the doctor referenced in the plaintiff's amended complaint started right here.

    In his letter of declaration submitted to the court dated October 3, 2014, which was used in Dolan's first attempt to have Jahi's legal status as deceased reversed, Dr. Alan Shewmon self-identified as "a pediatric neurologist with triple Board Certifications in Pediatrics, Neurology (with special competence in Child Neurology), and Electroencephalography." The fact that this EXACT same language is used in the amended complaint struck me as more than coincidence, since it seemed odd to me the *first* time I read it.

    Many of us who have followed specialized career paths that require certain types of certification may have more than one, just as anyone who pursues any kind of higher education may have more than one degree. But when we speak to someone, or write a resume or CV, we don't usually refer to ourselves as "triple-certified," "double-degreed," or whatever. In speaking, we'd say, "I hold certifications in Discipline A, Discipline B, and Discipline C," or "I have a Master's Degrees in both Psychology and Sociology," or whatever. On a resume or CV, we'd just list the items separately.

    Something else seemed odd about this too. In Dr. Shewmon's declaration letter from last year, he doesn't even mention what "board" certified him. Is it the California State Medical Board? The Board of Directors of the UCLA Medical Center? Could it be the Board of Directors of the International Brain Research Foundation? Who granted this "triple certification," and what does it really mean? This information is *also* omitted from the recent amended complaint.

    Other reasons that Dr. Shewmon came to mind is because his affiliation with the UCLA Medical Center suggests that he may still hold a California medical license, and because we already know that his opinion on the subject of brain death is outside the mainstream of generally-accepted medical thinking at this time.

    Still, be aware that this is just speculation at this point in time.... I could be wrong, but sure hope that there aren't MORE of these guys out there! :)

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    1. I'm quite sure that Shewmon is their expert. According to the CA Medical Board, Shewmon is certified by the American Board of Pediatrics and the American Board of Preventive Medicine. Board certification in neurology isn't listed, although that is his primary area of practice. His CV lists his board certifications in Clinical Neurophysiology (EEG) and Psychiatry & Neurology (with special competence in child neurology). His license is up for renewal next year. His work address is UCLA Medical Center, where he's a Professor Emeritus.

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    2. Thanks for sharing this important confirmatory info. I figured the license information was accurate because the legal team *knows* they've got to have a bonafide MD with *some* kind of qualifications relative to the case to refute whatever the defending doctors, and possibly another one commissioned by the court, might present. Surely all of the details listed on the CV will come out later on in the process, when it's time to present the testimony and evidence.

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    3. Scarab makes a good point on this being steam in except he never claimed to have examined her...before now, anyway. I think that perhaps that is a lie as well.

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    4. The amended complaint states that he "has personally examined" her. It would be self-sabotage for counsel to lie to the court about this. The nature of the exam is another issue.

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    5. Dr Shewmon's letter last year states he saw two videos then further in the letter he states he reviewed several videos. If I'm not misinterpreting his letter, he is equating 2 with several. A far stretch in my opinion.

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    6. not only the nature of the exam but when it occured is also important. The amended complaint gives no dates at all. It only has a vague reference to being after her diagnosis of brain death.

      Perhaps this new complaint is simply a legal manuver to try to force a settlement. I can't imagine that using the very same evidence that Dr. Fisher has already refuted is going to get them very far. And I can't imagine that they want a new exam by defendents experts.

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    7. @ Lasacgal - So, those 2 videos have now expanded from "several" into 22. Maybe just a typo in the recent amended complaint? Everything *else* is pretty much copy-and paste from previous documents.

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    8. Scarab, I re read the letter from last year and that is where he states two videos and then in that same letter from last year he states several videos. I'm not referring to this amended complaint.

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    9. I know, I was just having a little fun with the defense team's attempts to recycle the same old leftovers and make them look like something fresh. :)

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    10. It's hard to ascertain what their neurologist's opinion actually reads and what part is combined with his opinion and the family's assertions, especially in the two most relevant items:

      35. Based upon the pediatric neurologist's evaluation of Jahi, Jahi no longer fulfills standard brain death criteria on account of her ability to specifically respond to stimuli. The distinction between random cord-originating movements and true responses to command is extremely important for the diagnosis of brain death. Jahi is capable of intermittently responding intentionally to a verbal command.


      36. In the opinion of the pediatric neurologist who has examined Jahi, having spent hours with her and reviewed numerous videotapes of her, that time has proven that Jahi has not followed the trajectory of imminent total body deterioration and collapsed that was predicted back in December of 2013, based on the diagnosis of brain death. Her brain is alive in the neuropathological sense and it is not necrotic. At this time, Jahi does not fulfill California's statutory definition of death, which requires the irreversible absence of all brain function, because she exhibits hypothalamic function and intermittent responsiveness to verbal commands.

      I wonder when they are going to release the neurologist's new declaration because only then can his professional testimony be separated from what the family has been claiming all along.

      Lasacgal, if I remember correctly didn't he still come to the same conclusion regarding Jahi not currently fitting the criteria for brain death because of the alleged hypothalamic function, intermittent movement and lack of body deterioration in his original declaration, even though he admitted he hadn't examined her personally?

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    11. Yes, I believe so. Nothing new other than him stating he examined her and spent hours with her.

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  17. Just to get us thinking in some other directions...for those who haven't already seen it, check our Prof. Pope's posting made today, in which he outlines what might come NEXT....

    http://medicalfutility.blogspot.com/2015/11/next-6-steps-in-jahi-mcmath-case.html

    I found his theory about the court's possibly ordering the bifurcation of the case interesting. IMHO, this would be a very useful move. As Prof. Pope states, the med mal case (whether or not CHO and/or Dr. Rosen are liable for medical negligence that contributed to Jahi's post-surgical anoxic brain injury) is actually a separate issue than the "is Jahi dead or alive?" question. The med mal suit is about financial compensation to one family, related to the argument that certain actions or inactions may have negatively impacted one particular individual. The "dead or alive" argument has implications that are "mammoth, if not monstrous," as Prof. Pope states, because of the potential impact on law, medicine, and therefore society as a whole.

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  18. This comment has been removed by a blog administrator.

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    1. Thought you already did that. You said you did in numerous forums and FB pages. Your schtick is really tiresome. Get some new material.

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  19. John, your M.O. is showing.

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    2. Doc, thank you for making him and his nonsense disappear.

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  20. Well Doc, I don't /think/ anyone's brought this up yet so I feel like I've got to. And I really don't mean to criticize too much because this is your personal blog and you can put whatever you want here, it doesn't have to be perfect. Still.

    "I find it very hard to believe that Jahi, who was 13 at the time of her operation, had not started menstruating already. ... [T]he average age of ... menarche ... is 12.8 years (12.2 for black girls)."

    This stands out to me specifically from personal experience. I didn't have my first period until after I turned 14 and neither did my mother. Not to mention, according to health classes and books on puberty I read as a child, I was told that the age of the onset of menses can vary wildly and have been told ages ranging from 6 to 17 years old for menarche. Now, those may not be real cases (I only heard of them by word of mouth) and were almost certainly not due to average circumstances (I suppose), but, considering my personal experience, I have to wonder about the /distribution/ of the age of menarche, which you did not include (why not?). I believe the standard deviation is likely larger than, what, a few months, wouldn't you think?

    Do you seriously find it /very/ hard to believe that one particular girl wasn't completely average in something that varies wildly from person to person (as far as I know, having been told this most of my life)?

    My complaint, I should point out, isn't really about whether she's brain dead or not. I don't particularly care and I'm not trying to disprove your argument. But you know, if you've already got a source saying that going through puberty is not a sign against brain death, and proof that she'd already begun breast development, I have to wonder why you would even try to make the claim that onset of menses after 13 is so bizarre and unusual. It's uneccessary and to me seems unprofessional to try to attack every single statement made by your opposition. From a logic standpoint I know that one weak argument does not impact the integrity of other, independent arguments, but it does make me wonder, if you are so willing to make this misleading claim, what other facts are you willing to bs? Perhaps ones that are more esoteric in nature?

    Yeah, kinda makes me less certain about your integrity (not much though I mean it's not like I completely don't trust you or anything). Anyways, again, this is your blog, do whatever you want. Just felt the need to point that out. Sorry this ended up being so long.

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    1. You're arguing because he quoted statistics? If you disagree then argue with the people who came up with the statistics. Reread his article and tell me where his integrity is question. If you question his integrity due to statistics you don't like, you have bigger issues with him than you're letting on.

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    2. You're arguing because he quoted statistics? If you disagree then argue with the people who came up with the statistics. Reread his article and tell me where his integrity is question. If you question his integrity due to statistics you don't like, you have bigger issues with him than you're letting on.

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    3. Well Roscoe pretty much summed up my would-be response quite succinctly, though with much less sarcasm and cursing than I would have used.

      But to answer you question, yes, I find it hard to believe. They clearly stated that she hadn't undergone thelarche when she obviously had, so I have every reason to believe they could be lying about menarche too. Do I have proof? Of course not.

      What I do have is statistics. The average age of menarche is 12.2, and she was a year older than that. If we were to bet who was right and who was wrong, the smart money would be on me.

      But this is all speculation. And if this single blog post makes you question my integrity, then I would question your ability to judge character.

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    4. Doc, that's how I interpreted your statements too. Of course we don't claim to actually *know* the history of Jahi's monthly cycles, either before or after the anoxic brain injury. But the pictures of Jahi with developed breasts (the one posted on this thread isn't the only one I've seen) weren't something you created with PhotoShop. They're photos of Jahi in her healthier, happier days that were publicly shared by her family! If their current argument is based in part on a fact that can so easily be refuted, by evidence that they themselves have chosen to publicly share, we can't *help* but wonder about what *else* has been misrepresented.

      On the subject of statistics, shouldn't we *all* know that "average" means "generally," but not "always"?

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    5. Wow this got taken way more personally than I intended? Sorry, maybe I should have said it has the /potential/ to make me question your integrity. I didn't mean to come off as argumentative as I might have? I was just trying to point out a flaw. Yeah maybe "integrity" was the wrong word but like... my ability to believe what you say? Even well-meaning people can provide misleading information.

      Of course they COULD be lying about the menarche, and they were lying about the thelarche. But I think the point your both missing is that statistics don't mean anything unless you know the average (mean) ///and some measrue of distribution///. If the average age of menarche is 12.2 and the standard deviation is only 1 month, then yes, it would be hard to believe. My argument is that I'm almost certain that the standard deviation is a lot larger than that, enough to mean an onset of menarche after 13 years is not highly unusal and impossible to believe (do you find my menarche beginning after 14 impossibly hard to believe? Granted I'm white but it still not average). If you can hunt that down and prove me wrong, then fine! Show me the facts!

      Look, I wasn't even trying to disprove you, literally just pointing out a potential flaw in one of the arguments you presented here because it actually applies to me, sorry if it came off as offensive enough to warrant backlash because I really did try to not make it that way but eh, that's the internet for you.

      Also, please don't drag my ability to judge character into this. It, along with my knowledge of statistics, is just fine. Sir, I am an academic. I do not deny statistics, I just understand how they work. Nor is my judge of character binary. Again, I'm sorry if I came off as making a personal attack, especially one that would have you cursing at me.

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    6. Oops, started typing before Scarab showed up. Well, thanks for being polite at least, even if not directed towards me :)

      Basically I agree with everything you say, Scarab, and literally all I'm complaining about is Doc saying that it's hard to believe that any given child hasn't started their period by 13. That really stood out to me. Guess it turned into a whole big thing and I managed to offend some people. oops (that's a sincere oops btw. there's um... not a font for that... but it is)

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    7. Oops happens! :) While I can't speak for Doc B, or any of the readers and commenters on his blog, I think it was the "questioning of integrity" expression that hit us hard.

      For those of us who've been following this case for the better part of two years now, we've had *lots* of "questions" about the "integrity" of the various players on the stage of this horror story, and the almost-innumerable instances of misinformation, disinformation, irrelevant crap, and outright lies that have been perpetrated by "Team Jahi." Doc B. has been our gracious host throughout this process, by not only posting updates as the story has continued to unfold, but also contributing much to our analysis of these developments by sharing his professional opinions and observations as a medical professional.

      Point being, there are many questions of integrity that have been raised, and probably will continue to be, on this topic. But it's not Doc B.'s integrity that's at issue here.

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    8. Ah, you're right. I /completely/ forgot how that phrase would fit with the naysayers. Right that actually makes a lot more sense. I guess I threw it in there without really thinking it through or thinking about what it meant... it was just the closest to what I was thinking that I could come up with at the time. Well, for the record, I'm sorry. Thanks Scarab. I really hadn't considered that at all ^.^

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  21. When you say that you didn't start your period until age 14 and so did your mother you are giving a good example of another statistic: Daughters tend to start menses at the same age as their mothers did. Nailah Winkfield had her first child at age 15 by her own admittance. She could well have spent at least part of her 14th year pregnant so we know she didn't start menses any later than 14. At the time of Jahi's surgery Nailah was 34 and her mother, Sandra Chatman was only 50 so it's safe to assume she also started her menses around age 14 or earlier.

    Another statistic that perhaps Doc was too polite to mention is the fact that overweight girls tend to start their periods earlier on average than thin girls. The reason is explained thusly by an article in PubMed:

    Estradiol production is most commonly thought of as an endocrine product of the ovary; however, there are many tissues that have the capacity to synthesize estrogens from androgen and to use estrogen in a paracrine or intracrine fashion. In addition, other organs such as the adipose tissue can contribute significantly to the circulating pool of estrogens.

    Menarche, as a distinct event, has more to do with fluctuating estrogen levels in puberty than any specific, testable hormonal marker.

    I started menarche at age 12 but my daughter started at age 11, which points out another interesting statistic: Girls today tend to start menses earlier than in the past.

    Adding all of this info together, plus the fact that onset of pubertal changes has already been documented to occur in long term maintained brain dead patients, and it makes one wonder why plaintiff's counsel is even using this as one of their proofs of life

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    1. These are all great support for Doc's original point! I wish he'd included at least one of these things when he said it was very hard to believe she hadn't started menstruating by 13, or even in response to my complaint. Oh well, he's a busy guy and has to deal with way too much of this stuff anyways. Sorry again for making that workload harder, Doc! (um... again I'm trying to be sincere. if I were to be sarcastic I'd say so)

      The plaintiff's counsel is probably trying to use this as one of their proofs because either they don't know that pubertal changes have been documented in brain dead patients, or they think that other people (like the general public) don't. I bet it will get them a lot of interest from their (financial) supporters in the general public, who've already been proven to not exactly care about scientific facts!

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    2. to answer your final question: one would suspect they are throwing everything they can find at the wall in the hope that something sticks.

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    3. Ken, I agree. But there might also be another dynamic here, which we sometimes let fade into the background because so many of us are trying to figure out the real medical facts of this case.

      Remember that the underlying basis for this entire case is the fact that Jahi's *family* refused to believe she had died. It is the *family* that believed that she can't possibly be dead because they saw some movements. It is the *family* who believes that she can't possibly be dead because she looks like their little Sleeping Beauty, with her flawless skin.

      And, it is the "family* who says that they have seen Jahi "blossoming into a young woman, capable of giving life, so she can't be dead." (Nailah's post, when news of Jahi's first period was shared). Seeing one's young daughter maturing is a part of the journey of parenthood that's experienced by every mom who sees her *living* daughter mature through puberty experiences. Because the *family* believes that Jahi is still alive, they're likely to interpret *many* things that happen in a way that reinforces that hope and belief. Point being, they may be seeing what they *want* to see, not what's really happening when taken in the objective context of all the scientific dynamics in play here.

      I remember reading one report, admittedly unsubstantiated, in which a caregiver stated that the report of "Jahi's first period" originated when the body was being moved around in the bed for routine physical care, and some discharge was noticed on the bed sheet padding under the lower body. The caregiver reportedly opined that this wasn't necessarily evidence of menstrual discharge, but possibly some bowel discharge or related tissue sloughing, which we knew was already happening before Jahi left CHO. Of course, none of *us* know for sure.

      Maybe Jahi's breasts have gotten a bit larger than they were prior to the brain injury. So, her family may interpret this as "evidence of healthy growth" that would happen naturally in a living teenage girl, rather than an ordinary consequence of the hormone replacement therapy that's part of the medical maintenance routine.

      The fact that the amended complaint cites several of what, to us, are easily-explainable medical observations as though they were miraculous "proof" of healing and life suggests that the attorneys are basing their arguments primarily on the *family's* emotions and perceptions, rather than real medical evidence. They're just trying to cobble that evidence together as best they can, to support the underlying argument.

      As our previous poster stated, this may either be due to ignorance of known medical facts, or a deliberate attempt to try to present the arguments as an emotional appeal. Remember that the real "relief" that is being sought by the plaintiffs has never been changing the law, getting Jahi's case to make history and get into the Guinness Book of World Records and all the major medical journals, or anything like that. It's *one family* asking that their *one child* be declared "legally alive," so that they can (1) come home to CA and be allowed to get the medical care that *they* want for their child, and the Medicaid benefits to pay for that care, and (2) get additional financial compensation for the related non-medical expenses that they've already had, and will continue to have, because of that one child's severe disability,.

      Problem is, a case with such-far reaching implications *can't" be tried and decided by the court of public opinion.

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    4. Scarab, I don't see how that makes a difference. Plaintiffs do have POVs regarding the facts of their cases, attorneys will throw things at a wall (within legal bounds) to advocate for clients, and the complaint is meant to persuade the court, not the public.

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    5. I totally agree. I was just speculating about their possible *reasons* for throwing this particular batch of arguments up against that wall.

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    6. Really, the reasons are no different than those in any other case. Whether P or D, you work with what you have.

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    7. Point well taken. Gotta go with what they've got.

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    8. certainly the family and their loyal followers look at everything through the filters that see everything as evidence of life. - the lawyer's job is to differentiate between that and what the court might see as evidence of life.

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    9. I have two sisters scattered among my brothers. My oldest sister (6 years my elder) started her periods at 10 (in 1958, on a camping trip with just my Dad and brothers, before my folks had a chance to talk with her). My younger sister, who trails me by 6 years, didn't begin until after 18 (worried my mother silly.) I was 13, almost to the day. Average, schmaverage!

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  22. It is nice to see a discussion that doesn't end in name-calling or negativity. It is a credit to those who follows this blog (with one, creepy exception). I also appreciate Doc's updates on the Jahi situation. It breaks my heart that this poor girl's body is being used in such a repulsive and sordid fashion.

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  23. Maybe the pediatric neurologist is Dr. Ben Carson. ;-) Anyone remember Terri Schaivo? Her family said she had meaningful brain function too even though she'd been in a coma for 12 years. After she was autopsied, it was proven that couldn't have been true, no matter how much the family wanted it to be so. Sadly, I suspect it will be the same with Jahi.

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    1. I know you're joking, but Carson was a paediatric neurosurgeon, not a neurologist. Big difference.

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  24. Carson has some interesting views, not the least of which is his theory regarding the pyramids. Doc, perhaps you can explain something for me, how is it possible to be both a gifted surgeon and a whack-a-doodle?

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    1. I don't think I can, since I'm only one of those things. Which one, I'll let the readers decide.

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    2. Here's an interesting take on Carson's alleged "smarts." http://www.alternet.org/news-amp-politics/dr-ben-carson-not-smart

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    3. Thanks for the link Cleo, that was an excellent explanation. I especially liked this part:

      You know, the kind of ego that requires not one large self-portrait prominently displayed in an ostentatious mansion but a second of Mr. Ego sitting with Jesus; at the right hand of Jesus.

      When I saw that portrait I thought it was photo-shopped by someone trying to make a point, because who would actually do that.

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  25. I think Ben Carson is relevant to this discussion because he actually debated Dr. Shewman regarding their differing views about brain death at that Georgetown University conference in 2007. Here's a little background on him courtesy of The Daily Show:

    http://www.huffingtonpost.com/entry/trevor-noah-ben-carson_5642073ce4b0307f2caeeacb?utm_hp_ref=media

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  26. Some thoughts on this:
    The judge made the right call in revisiting the issue.
    It is true that every one of the findings -the prolonged somatic survival, the puberty, the movements - can be explained in brain dead people. But having diagnosed over 100 cases of brain death, I will say she does lie outside the common spectrum of the condition. That does not mean she is not brain dead, only that this is a reasonable case, in fact a good case, to revisit the issue of when we diagnose someone as dead.

    You can speculate on the motives and political leanings of the family and the expert, whoever it is, all you want. but the fact is it will be "put up or shut up time" for the McMath lawyers very soon, and before that everything remains to be seen. Nothing is settled.

    After having practiced and written about it for decades, I have had second thoughts about the term "brain death". It implies a precision we do not have. It is essentially a special subset of "irreversible loss of consciousness combined with permanent cardiopulmonary support"

    Maybe the law does need a diagnosis of death from the medical profession, I can see all the problems if there is none, but this is obviously a thornier issue than the doctors who conceived of the five decades ago could have realized.

    Think about abortion - forget about what your political feeling on the issue is -it demands some assumption about when life begins, anywhere from conception to delivery. The law struggles with that. Understandably so.

    I reiterate something I have written before -the exact moment when life begins or ends is a conceptual question. We can narrow the time down, but we cannot answer precisely. Our new technologies answer certain questions, and raise others. How we deal with this uncertainty is really what we are debating. That's why the McMath case is one whose importance should not be minimized.
    Cory Franklin

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    1. These are very important points, Dr. Franklin. I agree with you wholeheartedly. Thank you for weighing in.

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    2. Dr. Franklin, it's nice to see you join the discussion again. I have a question regarding this part of the amended complaint:

      Jahi is capable of intermittently responding intentionally to a verbal command.

      To me the statement seems rather contradictory on its face. Since you have personally diagnosed so many brain death cases I'm curious how you go about determining which movements are intentional and which might be coincidental to a verbal command if there are many random movements through the course of a day.

      Jahi's mother had been saying from very early on that Jahi moved so much they had to keep the bedrails up so she didn't fall out of bed. She posted several pictures in social media of Jahi's legs hanging off the bed and one rather startling picture of Jahi sitting upright and cross legged in bed, claiming that she had gotten into that position by herself.

      I can imagine that it would be relatively easy to distinguish an intentional movement if it occurred immediately after the proper command but in the videos posted last year the movement came after something like 40 seconds had transpired. If you stood at the bedside and repeated a random nonsense command and it resulted in an unrelated movement am I correct in assuming that wouldn't be characterized as an intentional
      act?

      I'm just very curious how an independent assessment would be graded, so to speak.

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    3. I forgot to add that I think the entire case hinges on this particular claim because if it can be proven that Jahi can indeed respond then she is most certainly not brain dead. It's interesting that in a recent statement Christopher Dolan said that in the opinion of the Cuban neurologist, Calixto Machado, Jahi did not fit any of the current categories of impaired consciousness. He goes on to say that she would most likely fail a new round of bedside exams that follow the current criteria for determining brain death.

      Dr. Machado is supposed to be working on a paper in which he creates a new category of impaired consciousness for Ms. McMath. It was supposed to come out at the end of October but I haven't found any evidence of it online yet.

      That is something I am very interested in reading.

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    4. I'll field this one. If there are intermittent finger twitches during the day even without any outside stimulus, for example, it would be impossible to determine if any finger movement AFTER verbal stimulus is voluntary or not. You would have to look for something concretely different, like moving only a certain finger or fingers, moving the left hand then the right or vice versa, etc.

      If the family is asserting that a mere finger twitch is evidence of life, then there is no way she got into a cross-legged position by herself, because THAT video would have been presented rather than a finger twitch. I remain wholly unconvinced by the video evidence thus far, though I also remain completely open to new evidence.

      Dr. Franklin, I'd also like to hear your thoughts on this.

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    5. The TENS device or TNS is similar to the external pacemaker used in hospitals for the treatment of asystole.

      If you are familiar with the use of electric current produced by a device to stimulate the nerves or muscles, you would know that the placement of the electrode MUST be directly on top of the nerve or muscle being stimulated.

      I don't believe any device was used on Jahi's hand to produce movement.

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    6. My thoughts, with two caveats.

      Regarding the film of movements, I've seen them and all they do is show movement. That's important but it means they have to be interpreted by someone at bedside. Can't say any more from that. I think we should put them in the context of all the other information before deciding anything.

      The second thing is that I never had any brain dead patient for more than two weeks, and almost none that long. I did consult on one that went on for several weeks. So this is completely out of my domain. It was unusual for me to see any movement as time went on, but it did happen. Again I would judge it based on the other information gathered.

      Here is my experience on movement in brain death: the most common problem was diaphragmatic movement during apnea testing. People would say this was breathing but there was obviously no ventilation because the pCO2 continued to rise during the test. I considered that spinal, and I didn't buy that any patient like that was "breathing with the machine" unless we measured CO2. (An aside on apnea testing - a big problem was that some patients would become unstable during apnea testing and we would have to abandon the test before we saw an elevation of 30mm in pCO2. I considered that prima facie evidence the patient was brain dead. Another aside - FWIW, I measured the time from discontinuation of ventilator and oxygen to cardiac standstill in these patients. Average was about 20 minutes- only a couple made it to an hour).

      I had two memorable experiences with movement in brain dead patients. Neither was a diagnostic problem, both were spinal but they stood out. The first was my very first patient c.1981- anoxic injury due to misdiagnosed epiglottitis. After we discontinued life support, the patient gave me the finger. i don't care who you are- that's scary. Another patient literally sat up in bed after life support was discontinued - but again there was a flat EEG, no cerebral blood flow, and positive apnea testing. So it was spinal. But it does make you take note.

      That said, how would I evaluate these movements spinal versus central.
      I'd look for unpredictable repetitive movement, suggesting spinal.
      Clearly, if response was voluntary in response to voice, that's easy, not spinal. But the real problem there would be to ascertain whether it was a response to voice. We used to have this issue all the time with coma patients, not necessarily brain dead. Doctors, nurses and families would say the patient was responding to voice, and occasionally they were, but more often than not it was not reproducible. We all believe what we want to believe and I'm sure the McMath family does too. That's understandable, but it clearly must be taken into account before we go drawing conclusions. I would probably test the patient for response to other stimuli - pain, touch, sharp, hot and cold for more information about response. A clear response to pain would strongly suggest this is not spinal and rules out brain death.

      In the final analysis, in this difficult case, I would interpret the movements in the context of the other diagnostic findings. I would want another apnea test, another EEG, and some combination of anatomic imaging and functional imaging. This is a court case, potentially a landmark case with public policy implications, and I think you need as much information as you can gather before deciding. If those indicate brain death, I'd be pretty confident the stuff you see on film is spinal. What I would not do is beg the question - i.e. these movements are spinal because the patient is brain
      dead.

      BTW- I really enjoy the discussion -there is a lot of cerebral activity (and only a little spinal reflex).

      Cory

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    7. HaHa, I see what you did there :o)

      I really appreciate the responses, both yours and Doc's. I am also grateful to Professor Thaddeus Mason Pope for keeping us all apprised of the legal developments and his astute analysis from that perspective.

      I can honestly say that I am officially obsessed with this case, having followed it from the outset. I can't express what a privilege it is to have access to the opinions of two doctors here on Doc's forum, so thank you DocBastard and thank you Dr. Cory for your invaluable contributions in helping us laypeople understand the medical side of this case.

      I almost feel as if I should be billed for a professional consult.

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    8. now, I'm not very highly trained in anatomy, but aren't there muscles in the forearm that move the hand via tendons going through the wrist?

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    9. @ Dr. Cory - thanks for your insightful comments. Your professional and experienced opinion about the "movement" issue correlates with my own non-medical observations, in terms of what's often really happening *around* patients who are in a state of apparent unconsciousness.

      Outside of the realm of "brain death," there are other situations in which we may find our loved ones are immobilized and apparently unconscious. They might be in the hospital ICU recuperating from surgery or illness, and maybe even be in a medically-induced coma to promote healing. Or they might be in long-term-care for a more chronic condition. In any case, we aren't really *sure* what they might be able to hear, see, and understand. So, we spend time at bedside, speaking to them. We might play music that we know they like, spend time reading aloud from the newspaper or "get well" cards and notes, etc. We might just recite a narrative report of what's going on a home, chat about family, friends, co-workers or classmates, or whoever is in their circle of life in the outside world. Whatever we do, we provide these stimuli to surround the person with positive energy, in the hope that he or she will somehow sense our caring and concern.

      IMHO, it's reasonable to assume that Jahi's family and the other caregivers do some things like this. So it's not at all unusual if there's *some* kind of movement, from time to time, that happens to coincide with someone speaking, the nurses moving Jahi's body around a bit for routine care or therapy, and such.

      As you stated, we would need to look at something besides the *family's* interpretation of "responsiveness" to conclusively determine whether or not these movements are actually a conscious reaction to something that is actually being heard, seen, or felt.

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    10. @ Ken - your comment about muscles in the forearm moving the hand triggers another thought.

      To date, all of these movements that Jahi's family has shared on video, and found worthy of comment on their postings to social media, appear to involve the hands and feet. We've not heard anything about Jahi trying to turn her head or open her eyes in response to her mother's voice, or try to smile a bit when she heard her favorite music.

      To me, that's significant, because when I've had occasion to be in the presence of a person who was immobilized and *mostly* unresponsive, for whatever reason, they were usually more likely to at least *try* to open their eyes a bit, turn the head in the direction of whoever was speaking, or even try to smile or speak (often not successfully, but the effort was clear) than they were to move hands and feet or otherwise move their limbs. That's another reason why I'm thinking that maybe this is all about spinal reflex movements.

      Doctors, feel free to share your opinions on this also...I've spent plenty of time at hospital bedsides, but of course both of you have obviously done much *more*... :)

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  27. Let me preface it by qualifying in two ways:

    Obviously I have only seen those videos and the only thing they mean to me is that there are movements, which means someone at bedside has to interpret them. Most brain dead cases don't move or if they do, not very much for very long. I don't know and won't presume to interpret those in this case without being there.

    Second, I never had someone with somatic survival longer than two weeks, altho I was once consulted on one after several weeks, so this type of question has never arisen for me after so long. I would think that some kind of pattern might be important.

    My feeling on movements was that if everything else was diagnosed appropriately they were de facto spinal movements. It wasn't uncommon to have some diaphragm movement while we were doing apnea testing and that might, and sometimes was, interpreted by some as breathing but the CO2 continued to rise the longer the patient was off the machine, so we assumed this was spinal in nature and not actual "breathing". It's why I don't accept people who are telling me the brain dead patient is breathing while on the ventilator unless they have actually monitored their ventilation. As an aside, one of the biggest problems with diagnosing brain death is when the apnea test is being done, the patient begins to be unstable without the ventilator, so much so, that you can't finish the test (i.e. get a 30mm rise in CO2). My interpretation is that if they are that unstable without the ventilator, they are brain dead. (I once monitored how long it took for the heart to stop after we discontinued ventilation and oxygen - mean time about 20 minutes. Only once or twice as long as an hour).

    I vividly remember two movements that weren't really a problem to interpret but were memorable. The first patient I diagnosed as brain dead (misdiagnosed epiglottitis) gave me the finger as we discontinued support. Scary. One other time, a patient rose in bed and immediately fell back. There was no cerebral circulation on a bloodflow study and a positive apnea , so I had to assume this was not any type of brain activity.

    How would I interpret movements? - well if they really are a response to command, thats easy -not brain dead. but the real problem there is determining whether that is purposeful - I have and doctors, nurses and families tell me a patient is responding to voice in many coma situations - and it is usually, but not always, unreproduceable. People understandably believe what they want to believe- we all do and I'm sure the McMath family does also (doesn't mean they are wrong, but it is something to take into account). I would see if the patient responds the same way to any other stimulus -touch, pain, hot, cold, sharp. further information to process. Response to pain would bother me that it is not spinal.

    The more repetitive and unpredictable it is, the more I would tend to believe it is spinal, but I'm not sure I would necessarily write it off. I would want to see some other info- repeat apnea test, and in this special case some combination of EEG, blood flow, structural and functional imaging. If those all suggested brain death, I would say the movements are spinal - what I would not do here is beg the question - they have to be spinal because she is brain dead.

    I really enjoy the discussion. Lots of cerebral activity.
    Cory

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  28. "They did not normalize Jahi's arterial blood gas with a baseline ABG of Ph 7.309 PCO2 49 PaO2 126 BE -1.4. "

    I read this on Dr. Pope's Medical Futility Blog. Can someone explain what this mean?

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    1. That was a comment by John Benton, who made the same claim here before I banned him. He is partially correct, in that the blood was very slightly more acidic than normal (her pH was 7.31, normal being 7.35-7.45). Her CO2 level was slightly higher than normal (which is around 40, depending on the lab). Her O2 level was normal, and the base excess (BE) was -1.4, again indicating her blood was very slightly more acidic than normal.

      Her ABG (arterial blood gas) was not normal at the start of the apnoea test. That said, it was only very slightly abnormal, and not abnormal enough to invalidate it (in my opinion). The concern that she was ever "deprived" of oxygen is unfounded, since her blood oxygen level was actually higher at the end of the test than at the start.

      That will be the last time this stupid theory will be discussed here.

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    2. am I understanding correctly that they took her spO2 reading at the beginning of the test, then she spent some time disconnected from the respirator and not breathing on her own - at which time her spO2 was higher than before? if so that would seem to me to indicate oxygen is not being used properly.

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    3. Ken - yes you are understanding that correctly. But in such a low metabolic state in a young healthy girl, her O2 requirement would be very low. For an apnoea test, patients are always pre-oxygenated to ensure they are never hypoxic.

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    4. Okay - so I was able to find Shewmon's original article that prompted the letters (Neurology December 1998 vol. 51 no. 6 1538-1545) BUT I wasn't able to post it while at work. I did email it to DocBastard in case he was able to post it before I could do so. Plus he may be able to get the images to work.

      Wednesday

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  29. Dr. B:
    For 25 years we had the largest blood gas lab in the country, probably the world.
    We saw more blood gasses than anyone in more situations (they have changed things since I retired) . Plenty of apnea test blood gases..
    There is no reason a CO2 of 49 and a pH of 7.31 with a normal O2 invalidate apnea testing.
    Since we usually start with a baseline in the 30's, the only thing that you might look for differently is a greater absolute CO2 rise. I want roughly 3 mm/minute or an absolute rise to 60 mm. You might want to accept a slightly higher absolute value - of 70 -80mm, which should not be a problem if the patient is oxygenating well (must maintain 100% oxygenation).
    Like any other test, it must always be interpreted in the context of the situation.
    If after 10 minutes the CO2 was in the range of 75, I'd say that was apnea.
    The actual test numbers are what are important.
    Cory

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    1. Thank you for confirming. I'm sure that won't satisfy a certain someone, but I'm not interested in his satisfaction. Only facts matter.

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    2. Wouldn't it be expected to find her blood gasses more acidic due to her longstanding severe chronic obstructive sleep apnea? Benton also claimed this apnea theory was a "bombshell" Brusavich was going to drop during court proceedings.

      On a side note, I found this opinion piece when searching for the text of one of Shewman's articles called:

      Chronic "brain death": meta-analysis and conceptual consequences

      The link refers to a letter written to the editors of The Official Journal of the American Academy of Neurology. The first paragraph sums up the opinion of Antonio Lopez-Navidad, MD, PhD regarding Shewman's chronic brain death theory:

      To the Editor:

      The concepts that Dr. Shewmon1 brandishes on death, chronicity, somatic integrative unity, and survival, and the articles on which he bases his arguments, suffer from such manipulation that the results become antithetical. His application of statistical methods exemplifies how statistics can be transformed into nonsense.

      The entire letter can be found here:

      http://www.neurology.org/content/53/6/1369.extract

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    3. Well isn't that an interesting find. I wonder if that will come up at trial.

      I would expect a 13-year old (even with OSA) to have a normal baseline blood gas, though I am neither a paediatrician nor a pulmonologist, so I reserve the right to be wrong.

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    4. I can pull up the full text and copy it here on Monday (from work) if that would be okay with DocBastard. If you'd rather I didn't do so, I'll refrain.

      Wednesday

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    5. I wanted to read the full letter but am not a member of AAN. Do you have access to the rest?

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    6. Wednesday - Please do. I've seen the first few paragraphs, and I think it would only add to the conversation here.

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    7. I'm pretty certain that I can pull up the full text at work on Monday. We have an institutional account with pretty much everyone it seems. If not, I'll take a big slice of humble pie/eating crow with a slice of cheddar on top. It makes the feathers slide down more easily.

      Wednesday

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    8. @ Wednesday - Thanks! As Doc said, it will further our discussion here. And, I'm personally curious for another reason, which *might* turn out to have some bearing on the case itself.

      I've been following the Aden Hailu case also, as have some other readers here. We know that, to date, the only "medical expert" who has come forth to support the arguments of the plaintiffs is Dr. Paul Byrne. And, we know that Dr. Byrne has some personal opinions well outside the mainstream of what's currently considered sound medical thinking and practice.

      But... we also know that the defendants and their attorneys can't meaningfully discredit an expert witness for the opposition by just calling him a quack or a nutcase. So, the staff and attorneys for St. Mary's Hospital (defendants in the Aden Hailu case) found a much more polite and professional way to express this sentiment to the court. Defendants actually presented several of Dr. Byrne's *published* articles as exhibits of evidence. :) So, his positions on brain death being a conspiracy to benefit the organ donation advocates, soul doesn't leave the body til the heart stops beating, etc. etc. etc. are shared with the court, through *his* own words.

      Perhaps sharing Dr. Shewmon's professional opinions with Judge Freedman in this same way might also be enlightening...

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    9. Doc, I found a link to the entire letter:

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

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    10. I posted the link before reading it in its entirety. It contains the text of many letters to the editors of Neurology.org, all in response to Shewman's concept of "chronic" brain death. Highly enlightening, I must say.

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    11. It even contains Shewman's response! I'm such a nerd.

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    12. @Anonymous -

      Thank you! You write nerd as though it's not a good thing. You do realize you're amongst your own here, right?

      Wednesday

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    13. Wednesday I think that's why I felt comfortable saying it, haha.

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    14. This may be an over-simplification but I feel that the whole of the argument around this issue misses a fundamental point: The brain is what makes you a human and so brain death is the fundamental "type of death", if such a phrase makes any sense.

      The issue here is a historical one - we have not previously been able to identify when a brain ceased to be active and so criteria which unavoidably lead to "death" (by which I mean death of the brain) were used as a substitute. However, restoration or substitution of any of these support systems before the brain becomes too severely damaged results in a continuation of life.

      In my estimation, it will not be many decades before a "brain interface" type of technology, allowing control of artificial devices directly from the brain becomes viable. This will initially be used, no doubt, in those with spinal injury, either to control artificial devices or to "bridge the gap" between brain and limb.

      Imagine, however, the situation of a wasting disease. Something like motor-neuron disease where the body increasingly fails to be able to support the brain. It is entirely possible to imagine a wasted body maintained artificially within a machine that provides not only corporeal support but also all of the "interfacing" type functions of movement, speech etc. At that point, the next obvious step is removal of the increasingly useless body and complete reliance upon mechanical support for the brain.

      Could anyone argue that a fully functioning and interacting brain maintained in an artificial "body", whether of human appearance or not was dead?

      I have little doubt that this will happen within the lifetimes of my children, perhaps even within my own lifetime, and by the time it does we will have been forced to accept a fundamental problem: We are looking at all of this from the wrong direction.

      Ugi

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    15. Great, you can tell it's a Monday when I replied in the wrong place. Let me try this again!

      Okay - I was able to find Shewmon's original article that prompted the letters (Neurology December 1998 vol. 51 no. 6 1538-1545) BUT I wasn't able to post it while at work. I did email it to DocBastard in case he was able to put it up before I could do so. Plus he may be able to get the images to work.

      Wednesday

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    16. Wednesday, was it his study that prompted his theory of "chronic" brain death? I would love to see that!

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    17. Apparently! I'm trying this from a DIFFERENT computer - maybe it will work today. Wednesday This will be in several parts as the limit is 4,096 characters.

      Chronic "brain death"
      Meta-analysis and conceptual consequences

      D. Alan Shewmon, MD

      +
      SHOW AFFILIATIONS

      Address correspondence and reprint requests to D. Alan Shewmon, MD, Department of Pediatrics, Division of Neurology, UCLA Medical Center, MDCC 22-474, Box 951752, Los Angeles, CA 90095-1752.

      doi: http:/​/​dx.​doi.​org/​10.​1212/​WNL.​51.​6.​1538
      Neurology December 1998 vol. 51 no. 6 1538-1545
      ABSTRACT
      Objective: One rationale for equating "brain death" (BD) with death is that it reduces the body to a mere collection of organs, as evidenced by purported imminence of asystole despite maximal therapy. To test this hypothesis, cases of prolonged survival were collected and examined for factors influencing survival capacity.
      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.
      Conclusions: The tendency to asystole in BD can be transient and is attributable more to systemic factors than to absence of brain function per se. If BD is to be equated with death, it must be on some basis more plausible than loss of somatic integrative unity.

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    18. The equivalence of "brain death" (BD) with death is one of the few bioethical issues of this decade considered relatively settled.1(p 115) (Together with Veatch,2 I prefer to place "brain death" in quotation marks on account of its semantic ambiguity.3 For purposes of this paper, the term will be taken to mean "whatever most people understand by the term 'brain death' [with whatever ambiguity and inconsistency that entails]," or equivalently, "a clinical neuropathologic state fulfilling official diagnostic algorithms and legally equated with death in most jurisdictions [regardless of the rationale for, or validity of, that equation].") What has been settled, however, is merely statutory definition and diagnostic protocols.1,4,5 Beneath this superficial consensus there is tremendous confusion about the fundamental rationale for equating the death of one particular organ with death of the entire organism.2,3,6-10 In the United States and most other countries where a quasi-official rationale has been articulated, the rationale is that the brain is the "central integrator" or "critical organ" of the body, and its destruction or irreversible nonfunction entails a loss of somatic integrative unity, a thermodynamic "point of no return," a literal "dis-integration" of the organism as a whole.1,11-15
      One line of evidence usually cited is that BD bodies cannot be maintained indefinitely; rather, they inexorably and imminently deteriorate to cardiovascular collapse despite the most aggressive therapy and resuscitative efforts. The BD literature, right up to the present, is replete with statements to this effect,16-21 such as the following (emphases added):
      Even with extraordinary medical care, these [somatic] functions cannot be sustained indefinitely-typically, no longer than several days (President's Commission) (p. 35).13
      Despite all efforts to maintain the donor's circulation, irreversible cardiac arrest usually occurs within 48 to 72 hours of brain death in adults, although it may take as long as 10 days in children. Indeed, general acceptance of the concept of brain death depended on this close temporal association between brain death and cardiac arrest (p. 816).22
      What was clearly established in the early 1980s were that no patient in apneic coma declared brain dead according to the very stringent criteria of the United Kingdom code...had ever failed to develop asystole within a relatively short time. That fundamental insight remains as valid today as it was 20 years ago-and not only in the United Kingdom but throughout the world (preface to second edition).23
      It is important to distinguish between this line of reasoning and a conflation of prognosis of eventual death with diagnosis of present death. As David Lamb eloquently explained: When evidence is cited to show that, despite the most aggressive support, the adult heart stops within a week of brainstem death and that of a child within two weeks, one is not marshalling empirical support for a prediction of death. What is being said is that a point has been reached where the various subsystems lack neurological integration and their continued (artificial) functioning only mimics integrated life. That structural disintegration follows brain death is not a contingent matter; it is a necessary consequence of the death of the critical system. The death of the brain is the point beyond which other systems cannot survive with, or without, mechanical support (emphasis in original; pp. 36-37).24
      Recent literature and collective personal experiences, however, cast serious doubt on this long-standing doctrine.

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    19. A few cases featured diagnostic controversy at the time of occurrence but were nevertheless included for meta-analysis because, in the author's opinion, the evidence strongly favored BD. These controversies arose many days into the clinical course and revolved around the interpretation of return of muscle tone or certain spontaneous or reflex movements (Camp, Rader, "TK"), including ineffectual respiratory-like movements on rare occasions ("Baby A," "TK"). Both spontaneous trunk and limb movements27-29 and respiratory-like movements30,31 have been described as spinal cord-mediated phenomena in well-documented cases of BD and are explicitly compatible with the diagnosis according to the American Academy of Neurology.4 Therefore, the diagnostic disputes engendered by such movements were not considered in themselves sufficient grounds to reject a case from the current study, especially because criteria for BD were incontrovertibly fulfilled early in the patients' courses (when organs could have been legally removed or life-support terminated and the later controversies never have arisen).
      Survival durations. Of the approximate total of 175 BD patients surviving at least 1 week, approximately 80 survived at least 2 weeks, approximately 44 at least 4 weeks, approximately 20 at least 2 months, and 7 at least 6 months. Even excluding the 14 cases known only through news media or mentioned merely in passing in medical articles, there remained approximately 161 documented survivals of at least 1 week, approximately 67 at least 2 weeks, approximately 32 at least 4 weeks, approximately 15 at least 2 months, and 7 at least 6 months.
      The 56 cases with sufficient individual information for meta-analysis are shown in figure 1 as actuarial survival curves for the whole group and for the two subgroups distinguished by terminal event: those supported indefinitely until spontaneous cardiac arrest (36 cases plus 1 still surviving) and those from whom treatment was withdrawn (19 cases). The longest survivals were so great (up to 14.5 years) that a logarithmic scale was required to fit everything meaningfully on a single chart. The drop-off of all three curves was biphasic, with an initially rapid exponential decay followed by a very slow decline, the transition occurring around 4 to 6 months.

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    20. Figures aren't showing up

      Most treatment withdrawals (15/19; 79%) occurred after 4 weeks, whereas spontaneous arrests were widely distributed across survival durations, with slightly more than one-half (21/37; 57%) before 4 weeks. Chi-square testing revealed a window of statistical significance for placement of the survival-duration partition between 21.5 and 38.5 days, with maximum significance at 28.5 days (p = 0.006). If support had hypothetically been continued in the withdrawal subgroup, the overall survival curve would have been shifted up and to the right by unknown extents. This uncertainty can be taken into account statistically by regarding the treatment withdrawals as "censored" data in Kaplan-Meier methodology, analogous to patients lost to follow-up or still alive at data collection in a typical survival study. Accordingly, the three curves of figure 1 transformed into the single Kaplan-Meier curve of figure 2, in which the 36 spontaneous arrests constitute the vertical steps and the 20 censored cases (19 withdrawals and 1 still surviving) modify the probability level at each step. The resulting curve is a better indicator of intrinsic survival capacity than those of figure 1. Note that it has shifted markedly to the right, with the first phase (still nearly linear on the semilog plot, but with shallower slope corresponding to a half-life of 2 to 3 months) extending as long as 1 to 2 years, before the second, more gradual, phase sets in.

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    21. Age effect. Figure 3 shows a scatter plot of age at BD versus log(duration) for all 56 cases. The longest survivors (2.7, 5.1, and 14.5 years) were all young children, two of whom were newborns, and all nine survivors beyond 4 months were younger than 18 years. Conversely, all 17 patients over age 30 survived less than 2½ months. The inverse relationship between age and maximum survival duration was nearly linear on the semilog plot.
      Age also influenced the proportion of treatment withdrawals, most of which involved adult patients. An age-partition anywhere between 13 and 22 years yielded a statistically significant chi-square test, with maximal significance at age 14; older than this, 47% of cases (16/34) ended by treatment withdrawal compared with only 14% (3/22) for age 14 or younger (p = 0.01).
      Upon defining treatment withdrawals as censored data, Kaplan-Meier curves for "young" and "old" subgroups differed significantly for age-partitions placed anywhere between 27 and 57 years. The higher the partition, the more divergent the survival curves (that of the older subgroup shifting more to the left). Figure 4 exemplifies this with a partition at 35 years, where statistical significance was greatest (p = 0.00002)

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    22. Etiology. The distribution of etiology category was as follows: primary brain pathology (24), diffuse systemic insult (24), and uncertain (8). Chi-square testing revealed a region of statistical near-significance (p = 0.07) for survival-duration partitions placed between 40.5 and 48.5 days, below which the majority of cases with known etiology category (17/28; 61%) had multisystem insult and above which the majority (12/18; 67%) had primary brain pathology. This etiology effect was not accounted for by age as a proxy variable because a separate plot of etiology versus age revealed no relationship between the two.
      Nevertheless, age and etiology interacted as determinants of survival probability. Figure 5 shows a scatter plot of log(age) versus log(duration) according to etiology category. The association of primary brain pathology with longer survivals and diffuse pathology with shorter survivals is evident; but the two extremes of age clearly constitute notable exceptions to this general trend. The two newborns (lower right corner) had very long survivals despite etiologies of severe hypoxia-ischemia. By contrast, older adults had shorter survivals regardless of etiology.
      Because the age effect was statistically overpowering at both ends of the age spectrum, the contribution of etiology was best appreciated in the large age group between these two extremes. Exploratory analysis was performed by systematically varying its upper and lower bounds and comparing the Kaplan-Meier curves for the two known etiology categories within it. There was a broad region approximately defined by a lower age limit between 1 month and 2 years and an upper age limit anywhere from 13 to 48 years within which primary brain pathology was significantly associated with longer survival than multisystem insult. The greatest significance was for an age group between a lower bound of 5 to 9 months and an upper bound of 43 to 45 years (p = 0.005), as illustrated in figure 6.

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    23. Within the category of primary brain pathology, the independent effect of age was even more powerful than it was across combined etiologies. Comparisons of survivals above and below an age-partition placed anywhere between 22 and 49 years were statistically significant (maximally so between 34 and 45 years, p = 0.0000003), with the younger subgroup manifesting considerably longer survivals than the older subgroup. This striking effect remained even after excluding extremes of age. Parallel comparisons within the multisystem category could not be meaningfully accomplished due to small numbers and excessive inhomogeneity of data.
      Discussion. Contrary to popular belief, there are many well-documented BD cases with survival beyond the "few days" typically cited as maximum possible. An exhaustive search yielded approximately 175 cases surviving 1 week or more.
      Validity of cases. Naturally, the amount and quality of information varied tremendously, inviting the criticism of possible misdiagnoses. But even in cases with least information, formal diagnoses were unquestionably rendered by presumably competent physicians, usually including at least one neurologist or neurosurgeon. If patients were "brain dead" enough to qualify as organ donors, they were surely "brain dead" enough to qualify for this study. To dismiss the cases as presumptive misdiagnoses would imply that organ donors are also often misdiagnosed and that BD declarations are inherently unreliable. Even excluding news stories, many striking examples remain of unequivocal BD confirmed by multiple clinical examinations, EEGs, intracranial blood flow, and necropsy findings.
      Undoubtedly, more cases of prolonged survival have occurred than have been reported, and many more potentialcases have never been manifest because BD is nearly always a self-fulfilling prophecy of somatic demise through organ harvesting or discontinuation of support.18,32 (Thus, the small proportion of prolonged survivals among all BD cases in no way diminishes their conceptual importance. The relevant denominator-the number supported maximally until asystole-is unknowable but surely also small; therefore, the meaningful ratio is not nearly so tiny as it might initially seem.)
      Enough information was available on 56 cases for meta-analysis of factors affecting survival capacity. Although detailed inferences must be viewed cautiously, the general conclusions are robust and extremely relevant to whether BD represents loss of somatic integrative unity.

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    24. Durations of survival. Of the meta-analyzed cases, one-half (28/56) survived more than 1 month, nearly one-third (17/56) more than 2 months, seven (13%) more than 6 months, and four (7%) more than 1 year, the record being 14½ years (and still going).
      If many of these cases have been in the medical literature for some years, how did the "few days at most" dictum ever become so firmly entrenched? Frequently cited is a 1978 multidisciplinary conference, in which:
      No investigator contributing to this volume has presented evidence that irreversible cardiac arrest may be postponed more than a week (exclusive of that in infants and children), and most often these final irreversible changes occur prior to 48 and even 24 hours after brain death (p. 27).12
      That observation carries little weight, however, given the lack of systematic attempt to maintain BD patients aggressively to determine survival capacity. The same disclaimer applies to the landmark review article that same year by Black,33 one section of which equated the very essence of BD with "inevitable bodily death."
      Another oft-cited study involved 609 BD cases from three neurosurgical units during the 1960s and 1970s.34 Again, it is difficult to draw conclusions regarding intrinsic survival capacity from this and from similar but smaller studies23(p 30)because patients who did not succumb quickly to asystole (nearly one-half of the 609) were typically disconnected from support. Unfortunately for BD research, ethical patient management is incompatible with optimal scientific methodology. Studies permitting organ donation are particularly unhelpful because the best donor candidates have the most intact organs and therefore also the greatest survival potential, which never becomes manifest; by contrast, patients with very unstable hemodynamics or multisystem failure are typically rejected as donors, thereby biasing outcomes toward early asystole.
      Furthermore, neuro-intensive care has improved substantially since those pioneering studies. Some aspects then would be considered substandard today20,35; therefore, the apparent imminence of asystole is no evidence for limited intrinsic survival capacity.
      Given that BD pregnant women have been maintained for months and that Japanese teams have supported BD patients extensively as far back as 198436 and virtually indefinitely with hormonal therapy,25,26,37,38 it is difficult to interpret the dismal survival data from a recent Taiwanese prospective study of "brain-stem dead" patients given "full cardiorespiratory support."39 Perhaps more interinstitutional variation in "fullness of support" exists than is generally recognized.
      Finally, one cannot help wondering to what extent philosophical bias and sheer inertia of tradition may have contributed to perpetuating the anachronism despite increasingly abundant published counterevidence.

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    25. Terminal event. The data collected here actually underestimate BD survival potential because in one-third of cases support was withdrawn. Approximately 4 weeks into BD there was a statistically significant transition in the proportion of treatment withdrawal versus spontaneous asystole, with 79% of withdrawals after, and 57% of spontaneous arrests before, that time.
      The most straightforward reason could be called "somatic plasticity." The acute loss of all brain-based somatic regulation predisposes to cardiovascular collapse. But those who survive gradually stabilize: homeostasis adjusts, hemodynamic status improves, enteral nutrition can be resumed, and overall management simplifies. This may be largely attributable to recovery from spinal shock, with return of spinally mediated autonomic tone and reflexes. Such tendency to stabilization seems strong evidence for integrative unity.
      There also may be two subpopulations of BD patients: those absolutely unstable (possibly although not necessarily because of lack of integrative unity) and those relatively stable (implying some minimal degree of integrative unity). Supporting evidence, inferred from the relationship between etiology and survival duration, will be considered in the following.
      Perhaps the circumstances of treatment withdrawal in many cases (especially cesarean delivery of a fetus brought to viability) merely happened to entail a several week latency.
      Regardless of the interpretation, the main point remains incontrovertible: BD does not necessarily lead to imminent asystole. At least some bodies with dead brains have survived chronically, and many others must have an unrealized potential to do so.

      Delete
    26. Age factor. Age and survival capacity were inversely related. Adults treated indefinitely all succumbed to spontaneous arrest within 4 months. By contrast, children seemed capable of surviving virtually indefinitely. The three most spectacular survivors-with durations of more than 2 years-were all young children, two being newborns. This age effect is not surprising. In general, children have more robust health than do the elderly, and if the concept of somatic plasticity is valid, children must have more of it than adults, just as they have more neuroplasticity.
      Complexity of care required. Seven very unusual cases prove that complex technology and extraordinary clinical effort are not always necessary for prolonged survival.
      Of the two cases known personally to the author, "BES" was an almost-14-year-old head-trauma victim who, after several weeks in an intensive care unit (ICU), was transferred at the parent's request to a skilled nursing facility. There he received nothing more than mechanical ventilation, desmopressin acetate, parenteral fluids, and basic nursing care. Hardly any laboratory tests were obtained. Survival was cut short at 65 days by untreated sepsis.
      The other ("TK") is now an 18½-year-old boy who contracted Haemophilus influenzae meningitis at age 4. Cerebral edema was so extreme that the cranial sutures split. Multiple EEGs have been isoelectric, and no spontaneous respirations or brainstem reflexes have been observed over the past 14½ years. Multimodality evoked potentials revealed no intracranial peaks, magnetic resonance angiography disclosed no intracranial blood flow, and neuroimaging showed the entire cranial cavity to be filled with disorganized membranes, proteinaceous fluids, and ghost-like outlines of the former brain. He is fed by gastrostomy, and for the last 6 years has been thriving sui generison a ventilator at home.
      Five other cases transferred to nursing facilities (Chamberlain, "Baby A") or home (Hamilton, the case of Pinkus, "Baby Z") similarly exemplify how chronic survival in BD does not necessarily require "heroic," "aggressive," or "sophisticated" technology.

      Delete
    27. Several Japanese studies teach a similar lesson. By merely adding vasopressin to epinephrine, mean survival times in BD increased to 23 days.38 With pressor rather than antidiuretic doses of vasopressin, stable hemodynamics were maintainable in all patients seemingly indefinitely, and the epinephrine requirement gradually decreased.25,37 Similar results have been obtained with cortisol and triiodothyronine.26 Because these studies were prospective, prolonged survivability seems representative of BD patients in general, not merely rare anecdotal exceptions. For such simple treatments to permit virtually indefinite survival, the underlying somatic substrate must be considerably integrated already.
      Even in the acute phase, the effort required to sustain most BD patients is not particularly extraordinary for contemporary ICU standards. That many actually need much less sophisticated management than many other ICU patients who are nevertheless quite alive argues strongly that the former posses integrative unity to at least the same degree as the latter.
      Such relative simplicity of treatment contrasts markedly with the technologic tour de force typically described with pregnant BD women. Plausible explanations for the discrepancy are differences in clinical stage (before versus after recovery from spinal shock) and therapeutic goal. The treatment regimen for a pregnant woman is not merely the minimum to sustain her own body, as in other BD cases (often with minimal enthusiasm of the health care team); rather, it is directed toward maintaining an optimal physiologic environment for the developing fetus (and with great enthusiasm). Thus, complexity of management in the pregnancy cases does not indicate lack of unity in BD bodies in general.

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    28. Conclusion. The phenomenon of chronic BD implies that the body's integrative unity derives from mutual interaction among its parts, not from a top-down imposition of one "critical organ" upon an otherwise mere bag of organs and tissues. If BD is to be equated with human death, therefore, it must be on some basis more plausible than that the body is dead. Whether other rationales, such as loss of "personhood" from a biologically live body, might be conceptually more viable or desirable for societal endorsement is beyond the scope of this physiologic inquiry.
      Previous Section
      Next Section
      ACKNOWLEDGMENT
      The author thanks Ronald Cranford, MD, Rosa Lynn Pinkus, PhD, Arthur Allen, MD, and Tsu-pei Hung, MD, for sharing information about their cases. He also thanks Charles Cannon, PhD, and Frank Lopez for assistance in the Lexis-Nexis retrieval of news media references; Donald Guthrie, PhD, for statistical advice; and Manel Baucells for assistance in the advanced use of Excel.

      FOOTNOTES
      Received September 3, 1997. Accepted in final form July 17, 1998.
      REFERENCES

      1.↵ Bernat JL. Ethical issues in neurology. Boston: Butterworth-Heinemann, 1994:113-143.
      2.↵ Veatch RM. The impending collapse of the whole-brain definition of death [published erratum in Hastings Cent Rep 1993;23(6):4]. Hastings Cent Rep 1993;23(4):18-24.
      3.↵ Shewmon DA. 'Brain death': a valid theme with invalid variations, blurred by semantic ambiguity. In: White RJ, Angstwurm H, Carrasco de Paula I, eds. Working Group on the Determination of Brain Death and its Relationship to Human Death. 10-14 December, 1989. (Scripta Varia 83). Vatican City: Pontifical Academy of Sciences, 1992:23-51.

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    29. 4.American Academy of Neurology Quality Standards Subcommittee. Practice parameters for determining brain death in adults (summary statement). Neurology 1995;45:1012-1014.
      5. Wijdicks EF. Determining brain death in adults. Neurology 1995;45:1003-1011.
      6. Halevy A, Brody B. Brain death: reconciling definitions, criteria, and tests. Ann Intern Med 1993;119:519-525.
      7. Taylor RM. Reexamining the definition and criteria of death. Semin Neurol 1997;17:265-270.
      8. Tomlinson T. Misunderstanding death on a respirator. Bioethics 1990;4:253-264.
      9. Truog RD. Is it time to abandon brain death? Hastings Cent Rep 1997;27(1):29-37.
      10. Youngner SJ. Defining death: a superficial and fragile consensus. Arch Neurol 1992;49:570-572.
      11. Conference of Medical Royal Colleges and their Faculties in the United Kingdom. Diagnosis of death. Lancet 1979;1:261-262.
      12 Korein J. The problem of brain death: development and history. Ann NY Acad Sci 1978;315:19-38.
      13. President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research. Defining death: medical, legal, and ethical issues in the determination of death. Washington, DC: US Government Printing Office, 1981.
      14. Swedish Committee on Defining Death. The concept of death: summary. Stockholm: Swedish Ministry of Health and Social Affairs, 1984.
      15. White RJ, Angstwurm H, Carrasco de Paula I. Final considerations formulated by the scientific participants. In: White RJ, Angstwurm H, Carrasco de Paula I, eds. Working Group on the Determination of Brain Death and its Relationship to Human Death. December 10-14, 1989. (Scripta Varia 83). Vatican City: Pontifical Academy of Sciences, 1992:81-82.
      16. Jennett B, Hessett C. Brain death in Britain as reflected in renal donors. BMJ 1981;283:359-362.
      17. Bernat JL. The definition, criterion, and statute of death. Semin Neurol 1984;4:45-51.
      18. Field DR, Gates EA, Creasy RK, Jonsen AR, Laros RK Jr. Maternal brain death during pregnancy: medical and ethical issues. JAMA 1988;260:816-822.
      19. Robertson KM, Cook DR. Perioperative management of the multiorgan donor. Anesth Analg 1990;70:546-556.
      20. Guerriero WG. Organ transplantation. In: Narayan RK, Wilberger JE Jr, Povlishock JT, eds. Neurotrauma. New York: McGraw-Hill, 1996:835-840.

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    30. 21. Lew TWK, Grenvik A. Brain death, vegetative state, donor management, and cessation of therapy. In: Albin MS, ed. Textbook of neuroanesthesia with neurosurgical and neuroscience perspectives. New York: McGraw-Hill, 1997:1361-1381.
      22. Soifer BE, Gelb AW. The multiple organ donor: identification and management. Ann Intern Med 1989;110:814-823.
      23. Pallis C, Harley DH. ABC of brainstem death. London: BMJ Publishing Group, 1996.
      24. Lamb D. Death, brain death and ethics. Albany, NY: State University of New York Press, 1985.
      25. Iwai A, Sakano T, Uenishi M, Sugimoto H, Yoshioka T, Sugimoto T. Effects of vasopressin and catecholamines on the maintenance of circulatory stability in brain-dead patients. Transplantation 1989;48:613-617.
      26. Taniguchi S, Kitamura S, Kawachi K, Doi Y, Aoyama N. Effects of hormonal supplements on the maintenance of cardiac function in potential donor patients after cerebral death. Eur J Cardiothorac Surg 1992;6:96-101; discussion 102.
      27. Heytens L, Verlooy J, Gheuens J, Bossaert L. Lazarus sign and extensor posturing in a brain-dead patient: case report. J Neurosurg 1989;71:449-451.
      28. Ropper AH. Unusual spontaneous movements in brain-dead patients. Neurology 1984;34:1089-1092.
      29. Turmel A, Roux A, Bojanowski MW. Spinal man after declaration of brain death. Neurosurgery 1991;28:298-302.
      30. Ropper AH, Kennedy SK, Russell L. Apnea testing in the diagnosis of brain death: clinical and physiological observations. J Neurosurg 1981;55:942-946.
      31. Turnbull J, Rutledge F. Spontaneous respiratory movements with clinical brain death. Neurology 1985;35:1260. Letter.
      32. McCullagh P. Brain dead, brain absent, brain donors: human subjects or human objects? Chichester: John Wiley and Sons, 1993:38.
      33. Black PMcL. Brain death (first of two parts). N Engl J Med 1978;299:338-344.
      34. Jennett B, Gleave J, Wilson P. Brain death in three neurosurgical units. Br Med J 1981;282:533-539.
      35. Darby JM, Stein K, Grenvik A, Stuart SA. Approach to management of the heartbeating 'brain dead' organ donor. JAMA1989;261:2222-2228.
      36.Takeuchi K, Takeshita H, Takakura K, et al. Evolution of criteria for determination of brain death in Japan. Acta Neurochir (Wien) 1987;87:93-98.
      37. Kinoshita Y, Yahata K, Yoshioka T, Onishi S, Sugimoto T. Long-term renal preservation after brain death maintained with vasopressin and epinephrine. Transpl Int 1990;3:15-18.
      38. Yoshioka T, Sugimoto H, Uenishi M, et al. Prolonged hemodynamic maintenance by the combined administration of vasopressin and epinephrine in brain death: a clinical study. Neurosurgery 1986;18:565-567.
      39. Hung TP, Chen ST. Prognosis of deeply comatose patients on ventilators. J Neurol Neurosurg Psychiatry 1995;58:75-80.
      40. Samuels MA. Cardiopulmonary aspects of acute neurologic diseases. In: Ropper AH, ed. Neurological and neurosurgical intensive care. 3rd ed. New York: Raven Press, 1993:103-119.
      41. Yoshida K-I, Ogura Y, Wakasugi C. Myocardial lesions induced after trauma and treatment. Forensic Sci Int 1992;54:181-189.
      42. Novitzky D, Wicomb WN, Rose AG, Cooper DK, Reichart B. Pathophysiology of pulmonary edema following experimental brain death in the chacma baboon. Ann Thorac Surg 1987;43:288-294.
      43. Novitzky D, Rose AG, Cooper DK. Injury of myocardial conduction tissue and coronary artery smooth muscle following brain death in the baboon. Transplantation 1988;45:964-966.
      44. Antonini C, Alleva S, Campailla MT, et al. Morte cerebrale e sopravvivenza fetale prolungata [Brain death and prolonged fetal survival]. Minerva Anestesiol 1992;58:1247-1252.
      45. Matjasko MJ. Multisystem sequelae of severe head injury. In: Cottrell JE, Smith DS, eds. Anesthesia and neurosurgery. 3rd ed. St. Louis: Mosby, 1994:685-712.

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    31. The most important finding in all of these cases is the fact that not one BD person recovered. Not one ever regained consciousness.

      Shewman is correct in assuming that modern technology can extend the survival of all BD patients but to what end?

      It remains an exercise in futility. We may think we are cheating death but when what is left is a bag of flesh and functioning organs what is the point?

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    32. Wednesday - Thank you for taking the time to post all that. It's a bit of a long-winded read, but I'll sum it up here:

      "Brain death patients's heart don't always stop immediately. Modern medical technology can keep their bodies functioning for extended periods. Not a single "chronic brain death" patient I've described has ever recovered at all."

      To put it another way, medical gizmos are so great that we can even keep dead bodies (with no chance of ever being conscious ever again) alive. Isn't that just wonderful.

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    33. You're welcome DocBastard and other readers. I tried to break it at points that made the most sense but did run into some limitations with the character count. I never did figure out how to get the figures to post, it may not be possible.

      Note the submission date vs. publication date. That is a big lag and indicates the reviewers were also sending it back to him with a lot of questions and he had to revise it at least once. Or if it was deemed acceptable, it wasn't good or interesting enough to publish immediately.

      Anyone here ever read Robert Silverberg's novella "Waking with the Dead"? Even if it were possible to "rekindle" someone, that doesn't mean they will be the same person afterward.

      Aha. I figured out the problem. I can't post when I'm on the Mac but I can when I'm on a PC. How arbitrary and bizarre.

      Wednesday

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  30. Informational reminder to new readers...for those who may want to see items referenced in my previous post, all the info related to the Aden Hailu case has been carefully archived by Prof. Pope on his website.

    http://thaddeuspope.com/braindeath.html

    Look in the "Courts Grant TROs to Families" section for the Aden Hailu case.

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  31. The Nevada Supreme Court is taking its time issuing a ruling regarding the "expedited" hearing on Nov. 3rd. St. Mary's has bent over backwards accommodating Ms. Hailu's father even after he repeatedly failed to follow court orders. At one point the TRO was extended with the express condition that plaintiff's find an independent expert to examine her but when their attorney secured one and he came back with a diagnosis of brain death her father denied giving his consent and fired that attorney.

    By now it's obvious the family cannot find another facility willing to take her or even a doctor who will perform the tracheotomy and gastrostomy even though St. Mary's has offered to extend privileges and the use of their facility. It's been nearly 8 months and she is still taking up an ICU bed.

    It appears plaintiff's entire argument is based on 3 EEGs which were all performed in April. The first was done before she was declared brain dead and was "essentially" normal according to one of plaintiff's doctors, Brian Callister, who reviewed them several months after the fact. The last two, according to his testimony, were abnormal and deteriorating but showed slow, diffuse waves. Based on that he said a diagnosis of brain death would "give him pause" even though she failed an apnea test.

    Arguing over old evidence seems to be a pattern in these disputed brain death cases.

    ReplyDelete
    Replies
    1. arguing over minutiae, points of procedure, and definitions; and rejecting any result that doesn't match your opinion; also seems to be a pattern

      Delete
    2. "It's been nearly 8 months and she is still taking up an ICU bed."

      I find this horrifying. Is this due to the family insisting she take up an ICU bed, or is the hospital trying to protect itself from still more legal falderal by not moving her to a different unit?

      Wednesday

      Wednesday

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    3. just fyi, T. Brian Callister, MD, is an ordained Roman Catholic deacon.

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    4. @ Wednesday - The problem, as I understand it, is that hospitals don't *have* other units within their facilities that are set up to provide the degree of medical monitoring and observation that is required to maintain the body of a brain-dead patient.

      Currently, St. Mary's is still operating under the TRO that orders them to continue to provide the same level of care that Aden was receiving prior to the DDNC, and the family's subsequently filing their legal challenge to the proposed discontinuation of that care. So, I don't believe there *is* another area of the hospital in which they could fulfill that requirement.

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    5. @ Anon. Nov 15 22:34 - Totally agree. If both Jahi and Aden are still exhibiting so many "signs of life," why not present some *current* evidence or test results?

      IMHO, we already know the *real* answer. Neither family, far as we know, has actually been able to *find* a doctor, who is well-qualified and experienced in the field at issue, to actually assume care responsibility for a brain-dead patient, and conduct the relevant physical examinations and testing that would actually support their positions. *Real* medical exams and tests need to be conducted by a *real* doctor in a *real* hospital or clinic. Since this didn't happen in either case, the plaintiffs are now basically asking the court to "make an exception" to the standard medical procedures that doctors use in DDNC, so that their deceased loved ones can be considered "alive," and therefore eligible for continuing medical care.

      OK, so Jahi's family did find "somebody" when they hooked up with Dr. Shewmon. But based on what we've seen of his opinions and research conclusions, I don't think that he will really accomplish much, in the way of convincing the court that Jahi is truly sentient and responsive, so not actually brain-dead. The best he can do is comment on how interesting it is that the body has responded so well to long-term medical maintenance. That won't prove that Jahi is "alive," relative to legal personhood.

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    6. precisely.

      "I don't use that terminology" is not a valid legal argument.

      Delete
    7. "Currently, St. Mary's is still operating under the TRO that orders them to continue to provide the same level of care that Aden was receiving prior to the DDNC, and the family's subsequently filing their legal challenge to the proposed discontinuation of that care. So, I don't believe there *is* another area of the hospital in which they could fulfill that requirement."

      Wow. Just...wow. That can't be good for the larger community.

      Wednesday

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    8. And, now we know that it won't end anytime soon.

      Delete
  32. I was trying to remember exactly what signs of life the family was claiming Jahi was capable of and I found this video of her mother explaining just that.

    http://www.nydailynews.com/news/national/jahi-mcmath-shows-signs-improvement-mom

    Jahi can move her arms, legs, bend at the waist and move her head from side to side, her mother claims. No video of that though.

    ReplyDelete
    Replies
    1. Bend at the waist? I have to see that.

      Delete
  33. Important news here, which may, IMHO, end up affecting the Jahi McMath case too.

    In the Aden Haily case, the he Nevada Supreme Court has *reversed* the ruling of the district court, in regards to allowing St. Mary's Hospital to discontinue care. Supreme Court believes that the lower court may have erred in accepting the DDNC by St. Mary's, since it was based on AAN standards. While the court doesn't categorically dismiss these standards as "generally accepted medical standards," it believes that the lower court failed to require St. Mary's to produce adequate evidence that the AAN guidelines are actually in general use by most of, if not all the states, that have adopted UDDA. As an example, the court cites the fact that the state of New Jersey has decided that AAN guidelines do not sufficiently "prove" brain death to the degree intended by the UDDA.

    (No surprise there, really...)

    What happens now....

    1. The Supreme Court has remanded the case back to the lower court, but required that St. Mary's strengthen their case, by providing further proof that AAN guidelines measure all functions of the entire brain, and that the AAN guidelines are considered accepted medical standards (in other states).

    2. Aden will remain at St. Mary's until this all gets figured out.

    To me, what's most significant in the Supreme Court's ruling is actually *this* statement:

    "Though courts defer to the medical community to determine the applicable criteria to measure brain functioning, it is the duty of the law to establish the applicable standard that said criteria must meet."

    That's why I'm thinking that this could affect the Jahi McMath case too. In a way, it does set a precedent, since it suggests that the court may be responsible for actually *questioning* anything presented to it as "accepted medical standards."

    As always, complete info, including a link to the court's ruling, on Prof. Pope's site. Read here:

    http://medicalfutility.blogspot.com/2015/11/nevada-supreme-court-questions-brain.html

    ReplyDelete
    Replies
    1. This is disheartening. This ruling demonstrates nothing less than lawyers overruling doctors on medical decision-making.

      To say I'm disappointed would be a drastic understatement.

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    2. last time I checked, New Jersey was not most of the states in the US.

      but then, math WAS my weak field of study, so I could be wrong.

      Delete
    3. The court cited Shewman and New Jersey and then decided to strictly interpret "all functions of the entire brain". It's the trifecta of political wishy-washyness, reason be damned.

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  34. The Nevada Supreme Court actually cited Alan Shewman in their opinion and have agreed that the current criteria for establishing brain death does not follow the UDDA because they do not test all functions of the entire brain. The whole argument about whether AAN guidelines satisfies UDDA guidelines is moot because neither test function in the mid and lower brain except for the stem of course.

    The ruling is actually suggesting that the current standard tests used to establish brain death are insufficient to satisfy UDDA. If this ruling sets precedent then the wording in the UDDA regarding "all functions of the entire brain" renders the current concept of brain death legally useless.

    DocB and Dr. Franklin, any words?

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    Replies
    1. This is the court putting lawyers' opinions over doctors' medical judgment. If the lawyers want to practice medicine like this, then they should be required to go to medical school and complete a full training like the rest of us. I'm disgusted.

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    2. The rules are nearly always made by lawyers and politicians, who are almost never specialists in the area on which they are ruling or legislating. That does not mean that they cannot make good rules but to do so they have to take good advice. Unfortunately, it seems that the advice they have taken in this case is not from the best of sources.

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    3. This comment has been removed by a blog administrator.

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  35. If you look at Jahi's brain MRI, the largest part of the brain, the majority of the cerebrum appears to be intact.

    So what part of the brain controls hearing, reasoning, emotions, learning, and fine control of movement?

    Answer: Cerebrum

    Isn't the primary motor complex or M1 located in the front lobe of the brain? Does it generate neural impulses that controls the execution of movement?

    Answer: Yes

    Do both areas appear to be intact in Jahi's MRI?

    Answer: Yes

    If Jahi is following commands she's not dead regardless if she fails the apnea test.

    I have a question for Dr. Cory.

    Dr. Cory: If Jahi fails the apnea test but comes back positive for serum hormones, would you still declare her brain dead?

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    Replies
    1. If the lack of brain-stem reflexes such as breathing and reflexes in the eyes demonstrate brain-stem death then how can any of these "command following" events be happening?

      I'm not a medic but I believe that brain stem function is essential for anything of that sort which is why brain stem death is the key criterion for BD in the UK - if you have irreversible loss of brain stem function then nothing much else is of any value to you anyway.

      I have a feeling you may have missed something in your reference to serum hormones - there will always be hormones in the blood and no-doubt some are being administered as part of the maintenance of the body. Was it a specific one you had in mind?

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    2. Brain stem death is totally different from the whole brain death criteria in the US. Why not perform Pituitary MRI to make sure?

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    3. I appreciate that - my point is just that if you can't have responses without brain stem function and that has been established as lacking then the question as to what to do in the event of such responses is somewhat academic.

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    4. Sorry, I don't understand the relevance of the pituitary MRI - I don't think that tells you anything other than whether she has a pituitary tumour, which is arguably the least of her problems right now.

      I don't think even by the "whole brain" criteria the pituitary counts as part of the brain. I could be wrong. As I say, I'm not a medic.

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    5. Ugi - John here believes that if you have 1 neuron floating around in your head, you don't qualify as brain dead since that isn't technically "whole brain" death. But then, John may be speaking from personal experience.

      Ugh, that was a low blow, even for me. I usually don't resort to such petty insults. Sorry about that, John.

      Not really.

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    6. Thanks Doc - I see.

      This whole thing is complete madness.

      I share your frustration with the way this thing is going - I work with legal issues quite a bit and you often get this: Lawyers arguing about the interpretation of a rule which was has already been stretched way beyond its real intention. It just makes you want to shout "This is ridiculous! It's just supposed to mean an irreversible loss of any _useful_ function", or whatever. From experience, these things usually reach a sensible position eventually, but we may be in for a long wait!

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    7. This comment has been removed by a blog administrator.

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    8. I hope Professor Pope doesn't mind but I asked him the following questions and his reply, coming from the standpoint of a legal expert, is beyond disheartening. If this ruling causes a domino effect it's downright catastrophic to the current concept of brain death:

      Anonymous said...
      Professor Pope correct me if I'm wrong but isn't the court actually saying that the current tests used to establish brain death do not satisfy the UDDA because it requires the cessation of all functions of the entire brain?

      After all, the tests that are recommended by the AAN are the same as those used to determine death by neurologic criteria and neither can unequivocally say that the entire brain lacks function.

      November 17, 2015 at 7:52 AM



      Blogger Thaddeus Mason Pope, J.D., Ph.D. said...
      The Supreme Court only said that the district court had not answered the question. It did NOT answer the question itself.

      The Supreme Court is reading the UDDA language "all functions" rather strictly. On remand the district court might be forced to find that neither AAN standards nor any other prevailing standards really measure what the UDDA language really says.

      November 17, 2015 at 8:53 AM

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    9. If there is no engine, then it doesn't matter how great the rest of the car looks. Admittedly, you can swap engines in cars, but we're talking about a brain that can't make the person BREATHE on its own - let alone think.

      I'm sorry John, but Jahi is dead and no amount of legal wrangling is going to bring her back to life.

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    10. If people are confused about all this. I'll make it easier. Jahi maybe in and out of permanent unconsciousness and if that is the case then she is not dead. If the temporal lobes are still controlling Jahi's hearing and she's able to follow commands, she is not dead. If the primary motor complex is responsible for her hand to move, she is not dead. We don't really need another fancy neurological examination performed on Jahi again. We just need the court to appoint another neurologist (not Fisher) to go visit Jahi and find out if she truly is following commands. That's all we need.

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    11. Honestly, I believe that Prof. Pope's analysis of the current legal situation is actually correct. The problem, as I see it, isn't really that there's anything "wrong" with AAN standards or any of the other medical standards that are routinely used in DDNC, in terms of establishing the fact that the patient's brain is damaged beyond the point of recovering to a state that would allow any recovery of actual *sentient* or *cognitive* function, or however else we want to describe the legal concept of "personhood," The real issue here lies in the fact that the UDDA language, which specifies "irreversible cessation of *all* brain functions, is so broad that it requires consideration of all of these different opinions that we've been reading about in both these cases.

      We've seen the opinions of grieving delusional families:

      "She can't be dead because she still moves, and sometimes she makes these moves when we talk to her."

      "She can't be dead because she has such flawless skin."

      "She can't be dead if she had a period, and her breasts grew."

      "She can't be dead because her body still eliminates urine and feces."

      Perhaps more importantly, we've also seen the opinions of *some* medical experts:

      "She can't be dead because some of her brain is still intact, and we figured it should have liquefied and rotted by now."

      "She can't be dead because there's no way that her body could have lasted this long. Even in brain - dead patients on vent support, the heart will usually stop beating soon, and then the other body systems shut down." (Ignoring the fact that both these patients have been getting *lots* more than just vent support).

      "She can't be dead because the EEG wasn't completely flat."

      Problem is, right now, there's no practical way for the *court* to sort this out, by determining what might actually be a "brain function," until and unless the whole brain actually liquefies and calcifies like "Patient T.K,"s did.

      Clearly, neither the medical experts nor the legislators responsible for crafting the UDDA, back in 1981, had any way of anticipating the medical advances that would allow us, more than 30 years later, to keep the body of a brain-dead patient somatically maintained over the long term, to the point of some significant functionality. It's also likely that they never anticipated that anyone would even *wish* to maintain the body of a deceased loved one in this manner for as long as possible. The concept of keeping a dead body alive was seen in science fiction writings and horror movies, not in real life.

      But times have changed. Maybe it's time for the UDDA to change too.

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    12. no, it is not. you have been saying she can't be dead because you don't want her to be. when you talk of MRI, do you mean the one slide Dolan showed nearly two years ago that looks about HALF as intact as a healthy brain at best and like canned corn at worst? when you talk of EEG you mean the one that was done improperly without shielding or any means of filtering out background noise - considering it has been proven that in an unshielded environment an EEG can show life in lime jell-o. as for the videos claiming intentional movement - first, no brainstem means no connection between the ears and the hands or feet. full stop. furthermore, we have no reason to believe the movements are intentional. it is easy as heck to edit a video so random movements look intentional.

      so yeah - what needs to change about UDDA is to make it absolutely clear that it is DOCTORS who know how to determine whether a brain has ceased all function or not - not lawyers, drunks, amateur bodybuilders, or self-important idiots.

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    13. Hmm. Looks like we have some technical difficulties here. Just got back on the site and I see that the "placeholder" that shows us when Doc has deleted a comment from a certain "Anonymous" poster doesn't show up.

      Ken, no worries...I saw it too. :) Just didn't have the mental energy to engage him at that particular moment.

      Missing post was a response to my 3:30 comment about needing to clarify the UDDA. He interpreted my comment about revisiting the UDDA as *agreeing* with him. Ken very eloquently pointed out that this interpretation was, to put it mildly, *not* accurate.

      Ken, I totally agree...UDDA needs to be clarified to remove that "absence of all brain functions" phrase and say something like "irreversible loss of all cognitive function and sentient responsiveness, as determined by qualified medical professionals." Lawyers and doctors will surely come up with something better.

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    14. This comment has been removed by a blog administrator.

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  36. One cannot be in and out of permanent unconsciousness.

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  37. That's a new category I made up.

    ReplyDelete
    Replies
    1. like you made up your so called credentials?

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  38. What constitutes "life" is the question I would ask. Is it a single neuron floating around, as Doc B mentioned? Is it a twitch here, a spasm there? I consider Jahi's "life" to be a state I would never choose for myself or anyone else. What makes us uniquely human and sentient beings is no longer present in this unfortunate child. It's all gone and has no chance of returning. Jahi may have random movements and minimal electrical activity in her brain, but is this really life? I would argue that it's not. Life is multi-faceted and multi-layered. It's not lying in a bed on a vent pumping air into the lungs and being unaware of one's surroundings. To believe otherwise is delusional.

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