Thanks to vigilant readers of this and Thaddeus Pope's excellent and informative Medical Futility Blog, I've been alerted to several more brain death controversy cases in the news recently. As was predicted during the Jahi McMath fiasco, more families are hopping on the "We don't believe in brain death" bandwagon.
The first (or next, as it were) is Mirranda Lawson, a 2-year-old girl who choked on a popcorn kernel on May 11, 2016. She was taken to VCU hospital in Richmond, Virginia where doctors determined she was probably brain dead. I say "probably" because nobody knows - her parents refused to allow the doctors to perform the apnea test that would either A) determine if she was brain dead or B) rule it out. Mirranda's parents reportedly even went so far as to physically block doctors from performing the apnea test.
Not surprisingly, one of this blog's best "friends", Dr. Paul Byrne, was brought in as an "expert". Paul doubled down on his "brain death is a myth" stupidity by calling it "fake death" (what the hell is "fake death"?) and claiming Mirranda just needs thyroid and adrenal hormone. “She needs them just like all of us need them," Byrne stupidly said. Of course, a living brain has the ability to regulate both thyroid and adrenal hormones, something that Byrne either A) forgot (possible), B) never knew (unlikely), or C) lied about (most probable).
In a rare (it seems) victory for reason, yesterday a Virginia court denied her parents the ability to deny Mirranda's doctors the ability to do their damned jobs. It is unclear if the hospital has performed the apnea test yet, and it is highly probable that her parents will appeal the ruling.
If that wasn't enough, another case popped up in (surprise!) California. On June 3, 13-year-old Alex Pierce drowned at a celebratory party held at a high school swimming pool. Despite the presence of adults and lifeguards, he remained submerged for 95 seconds (according to surveillance video) before being pulled out of the pool. Tragically, no one performed CPR until paramedics arrived about 4 minutes later. He was taken to a local hospital first before being moved to Loma Linda University Medical Center where it appears he met clinical brain death criteria. In a move that will surprise no one here, his parents filed a temporary restraining order which prevent the doctors from performing the apnea test.
The wording of the petition itself is revealing. In it they claim that Alex was responsive at the first hospital, opening his eyes and responding to voice. He was then airlifted to Loma Linda where he began having seizures. This is typical and not unexpected after drowning - as cerebral oedema (brain swelling) worsens, the patient's condition worsens, often including seizures. Alex's doctors did the right thing by sedating him heavily, as this can both stop the seizures and reduce brain swelling. Despite the doctors' best efforts, as the swelling worsened his overall condition worsened with it, and the following day doctors told Alex's parents of their plans to perform an apnea test. This, according to the petition, would expose Alex "to dangerous levels of CO2 in his blood, {and} could cause further injury to Alex's brain" (page 3 line 7).
I won't even comment on the very next line of the petition:
So with all this hubbub about the apnea test, I believe it's high time some of these myths and lies were put to bed. And who better to do it than me. Sigh.
The central questions on this issue are: 1) What the hell is the apnea test? 2) How is it done? 3) What does it mean? 4) Is this related to sleep apnea, and if so how is this related to brain death?
And the answer is I'M NOT YOUR MOTHER! DO YOUR OWN RESEARCH!
Oh sorry, I forgot I'm not a pseudoscientist. Fortunately I've done the research for you.
The apnea test (full description here) is an important part of the assessment of brain death, in which the brain dies in response to a lack of oxygen and all brainstem reflexes are lost. A portion of the brainstem controls the ability to breathe spontaneously in response to rising carbon dioxide levels, so when that portion of the brainstem dies, the ability to take a breath dies with it. Note that low oxygen levels are not involved in the reflex to take a breath, only high CO2 levels. When the test is performed, the patient's vital parameters are normalized (temperature, fluid balance, and blood pressure must be normal, and the patient cannot be on any sedating or paralysing medications). The patient is then pre-oxygenated, and blood is drawn to ensure that arterial CO2 is normal and O2 is normal or high.
When this is all done (and only after this is all done), the ventilator is turned off. Oxygen can be passively administered to the patient by blowing it into the breathing tube, though this is not necessary. The patient is then watched closely for any respiratory effort. If the patient takes a breath (or even tries to), the test is aborted and declared negative - not brain dead. However, if the arterial CO2 level reaches 60 mm Hg or if it rises by at least 20 mm Hg from baseline (as determined by further blood tests) with no respiratory effort, the test is positive, and the patient can be declared brain dead. If at any time the patient's blood pressure drops or if the oxygen saturation drops to below normal, the test is aborted.
While there are some risks associated with the test (including pneumothorax, asystole, and acidosis), these are very rare, and with the right technique the test is considered safe, even according to Calixto Machado (who wrote the article above describing the apnea test and whose name will sound familiar to those who followed the Jahi McMath saga).
At no time during the test is the oxygen level dangerously low. If drops below normal, the test is aborted and the result is not considered. And though the carbon dioxide level can certainly rise, it is not allowed to rise to dangerous levels, and once the ventilator is turned back on the excess CO2 is released rapidly.
In his testimony to the Virginia court, Paul said this about the apnea test:
I am in no way saying that the apnea test is perfect, because clearly it is not. A perfect test would be one that is completely non-invasive, 100% accurate, and 100% safe. But that describes the perfect test for anything, and as everyone in medicine knows, that test simply does not exist. An EEG can be used to confirm, but not diagnose, brain death. There are other newer techniques for confirming brain death, including CT cerebral angiography and the cerebral scintigraphy, but at this point both of these remain confirmatory studies rather than primary studies. Other studies, such as transcranial dopplers, somatosensory evoked potentials, and bispectral indices, have insufficient evidence to be recommended so far. There is an excellent review here of the current evidence for brain death and its evaluation written by Dr. Eelco Wijdicks, who says:
I hope that clears up any misinformation that may be circulating about the apnea test. Perhaps this post will come across the screens of the lawyers representing VCU and Loma Linda hospitals and will help them. Perhaps some grieving parents who are trying to figure out why a hospital would perform an apnea test on their child will come across it, read it, and understand a little better. The sad fact remains that each one of these cases is sadder than the previous, only because each one further proves the point that too many people continue not to get it.
With that all said, I'm sure this will clear up any and all confusion surrounding brain death, this will be the last we hear of any controversy, we will see no more of these nebulous brain death cases, and Dr. Byrne will call me to offer his sincere apology.
Seriously Paul - call me.
The first (or next, as it were) is Mirranda Lawson, a 2-year-old girl who choked on a popcorn kernel on May 11, 2016. She was taken to VCU hospital in Richmond, Virginia where doctors determined she was probably brain dead. I say "probably" because nobody knows - her parents refused to allow the doctors to perform the apnea test that would either A) determine if she was brain dead or B) rule it out. Mirranda's parents reportedly even went so far as to physically block doctors from performing the apnea test.
Not surprisingly, one of this blog's best "friends", Dr. Paul Byrne, was brought in as an "expert". Paul doubled down on his "brain death is a myth" stupidity by calling it "fake death" (what the hell is "fake death"?) and claiming Mirranda just needs thyroid and adrenal hormone. “She needs them just like all of us need them," Byrne stupidly said. Of course, a living brain has the ability to regulate both thyroid and adrenal hormones, something that Byrne either A) forgot (possible), B) never knew (unlikely), or C) lied about (most probable).
In a rare (it seems) victory for reason, yesterday a Virginia court denied her parents the ability to deny Mirranda's doctors the ability to do their damned jobs. It is unclear if the hospital has performed the apnea test yet, and it is highly probable that her parents will appeal the ruling.
If that wasn't enough, another case popped up in (surprise!) California. On June 3, 13-year-old Alex Pierce drowned at a celebratory party held at a high school swimming pool. Despite the presence of adults and lifeguards, he remained submerged for 95 seconds (according to surveillance video) before being pulled out of the pool. Tragically, no one performed CPR until paramedics arrived about 4 minutes later. He was taken to a local hospital first before being moved to Loma Linda University Medical Center where it appears he met clinical brain death criteria. In a move that will surprise no one here, his parents filed a temporary restraining order which prevent the doctors from performing the apnea test.
The wording of the petition itself is revealing. In it they claim that Alex was responsive at the first hospital, opening his eyes and responding to voice. He was then airlifted to Loma Linda where he began having seizures. This is typical and not unexpected after drowning - as cerebral oedema (brain swelling) worsens, the patient's condition worsens, often including seizures. Alex's doctors did the right thing by sedating him heavily, as this can both stop the seizures and reduce brain swelling. Despite the doctors' best efforts, as the swelling worsened his overall condition worsened with it, and the following day doctors told Alex's parents of their plans to perform an apnea test. This, according to the petition, would expose Alex "to dangerous levels of CO2 in his blood, {and} could cause further injury to Alex's brain" (page 3 line 7).
I won't even comment on the very next line of the petition:
"I am a Christian and believe in the healing powers of God."Further down in the petition, the Jahi McMath and Aden Hailu cases are predictably brought up, as is a commentary by Dr. Cicero Coimbra, a Brazilian neurologist who (like our friend Paul Byrne) does not believe in brain death. A 0.184-second Google search revealed a totally-and-seriously-not-biased-at-all-we-mean-it article titled "'Brain Death' Is Not Death!" (complete with super scientific exclamation point, of course) penned by . . . ready for it? Paul Byrne and Cicero Coimbra! (super-sciency exclamation point).
So with all this hubbub about the apnea test, I believe it's high time some of these myths and lies were put to bed. And who better to do it than me. Sigh.
The central questions on this issue are: 1) What the hell is the apnea test? 2) How is it done? 3) What does it mean? 4) Is this related to sleep apnea, and if so how is this related to brain death?
And the answer is I'M NOT YOUR MOTHER! DO YOUR OWN RESEARCH!
Oh sorry, I forgot I'm not a pseudoscientist. Fortunately I've done the research for you.
The apnea test (full description here) is an important part of the assessment of brain death, in which the brain dies in response to a lack of oxygen and all brainstem reflexes are lost. A portion of the brainstem controls the ability to breathe spontaneously in response to rising carbon dioxide levels, so when that portion of the brainstem dies, the ability to take a breath dies with it. Note that low oxygen levels are not involved in the reflex to take a breath, only high CO2 levels. When the test is performed, the patient's vital parameters are normalized (temperature, fluid balance, and blood pressure must be normal, and the patient cannot be on any sedating or paralysing medications). The patient is then pre-oxygenated, and blood is drawn to ensure that arterial CO2 is normal and O2 is normal or high.
When this is all done (and only after this is all done), the ventilator is turned off. Oxygen can be passively administered to the patient by blowing it into the breathing tube, though this is not necessary. The patient is then watched closely for any respiratory effort. If the patient takes a breath (or even tries to), the test is aborted and declared negative - not brain dead. However, if the arterial CO2 level reaches 60 mm Hg or if it rises by at least 20 mm Hg from baseline (as determined by further blood tests) with no respiratory effort, the test is positive, and the patient can be declared brain dead. If at any time the patient's blood pressure drops or if the oxygen saturation drops to below normal, the test is aborted.
While there are some risks associated with the test (including pneumothorax, asystole, and acidosis), these are very rare, and with the right technique the test is considered safe, even according to Calixto Machado (who wrote the article above describing the apnea test and whose name will sound familiar to those who followed the Jahi McMath saga).
At no time during the test is the oxygen level dangerously low. If drops below normal, the test is aborted and the result is not considered. And though the carbon dioxide level can certainly rise, it is not allowed to rise to dangerous levels, and once the ventilator is turned back on the excess CO2 is released rapidly.
In his testimony to the Virginia court, Paul said this about the apnea test:
"It's a test where they take the ventilator away for 10 minutes, which suffocates the patient, makes the carbon dioxide go up. When the carbon dioxide goes up, their brain swells, and they get worse... and they want to do this to Mirranda."As usual, Paul distorts the truth (ie lies). The test does not suffocate the patient, and the CO2 levels are not allowed to get to the point where brain swelling can worsen. Again, I wonder if Paul is simply ignoring his decades of medical knowledge or simply telling lies because they sound scary to the public and fit his agenda.
I am in no way saying that the apnea test is perfect, because clearly it is not. A perfect test would be one that is completely non-invasive, 100% accurate, and 100% safe. But that describes the perfect test for anything, and as everyone in medicine knows, that test simply does not exist. An EEG can be used to confirm, but not diagnose, brain death. There are other newer techniques for confirming brain death, including CT cerebral angiography and the cerebral scintigraphy, but at this point both of these remain confirmatory studies rather than primary studies. Other studies, such as transcranial dopplers, somatosensory evoked potentials, and bispectral indices, have insufficient evidence to be recommended so far. There is an excellent review here of the current evidence for brain death and its evaluation written by Dr. Eelco Wijdicks, who says:
"Apneic oxygenation diffusion to determine apnea is safe, but there is insufficient evidence to determine the comparative safety of techniques used for apnea testing. There is insufficient evidence to determine if newer ancillary tests accurately confirm the cessation of function of the entire brain."It is important to note that Dr. Wijdicks is not only the editor-in-chief of Neurocritical Care but is also an editorial board member of Clinical Neurology and Neurosurgery and Journal of Clinical Neurology. In other words, he knows his shit a lot better than you or I or Paul Byrne.
I hope that clears up any misinformation that may be circulating about the apnea test. Perhaps this post will come across the screens of the lawyers representing VCU and Loma Linda hospitals and will help them. Perhaps some grieving parents who are trying to figure out why a hospital would perform an apnea test on their child will come across it, read it, and understand a little better. The sad fact remains that each one of these cases is sadder than the previous, only because each one further proves the point that too many people continue not to get it.
With that all said, I'm sure this will clear up any and all confusion surrounding brain death, this will be the last we hear of any controversy, we will see no more of these nebulous brain death cases, and Dr. Byrne will call me to offer his sincere apology.
Seriously Paul - call me.
PS Sleep apnea (temporary cessation of breathing while asleep) has nothing to do with the apnea test. Thanks, Ugi.
This may be a duplicate comment - my first just disappeared when I tried to submit. Apologies if so.
ReplyDeleteInteresting post Doc' - although you didn't actually tell us what apnea tests have to do with sleep apnea! It sounds trivial but I would not be at all surprised if there was an element of "sleep apnea is bad therefore an apnea test must be bad" about this.
BTW a couple of typos:
"transcranial doppers" should be "transcranial dopplers".
"I'm sure will this" should be "I'm sure this will".
Ugi
PS feel free to fix the typos and delete/edit this comment for neatness sake.
Thanks. Fixed.
DeleteI've done a lot of apnea tests- I estimate over 100 and probably witnessed over 100 more, and a couple of things I want to point out.
ReplyDeleteIt is usually safe - but not always and I have seen an occasional instance of patients becoming extremely unstable or even dying (in the somatic sense) because of it. This means two things to me - the first is that the people who that happens to are probably brain dead- if they are that fragile without ventilation they would be considered positive tests.
But it also means there is a risk to the test and it is not aesthetically pleasing to have that happen, which is important in these "I don't believe in brain death" cases. In other words, there is some merit to their arguments over the test, altho I agree with the judge who doesn't allow blocking of the test.
There is some art to interpreting the test. I tend to look for an absolute rise of 30mm, not 20mm to an absolute of greater than 60mm. This is because the average rise of CO2 in apnea is 1-3mm/minute. Sometimes you don't get it that high (probably people not metabolizing too much). You have to determine whether 53 mm is adequate. Sometimes the patient has some arrhythmic diaphragmatic contraction but the CO2 continues to rise. What should you do? Sometimes the patient has profound lung problems and even 100% oxygenation risks dangerous hypoxemia. what should you do? And as before sometimes the patient gets extremely unstable in the middle of the test. Do you stop or continue and risk somatic death? Point being the apnea test is like any other medical test. Requires judgment and context in many cases.
I would like to emphasize again we are not taking advantage of the latest technology. For example, PET scanning is becoming extremely helpful in ascertaining brain function. As a test of brain metabolic activity it could lend a lot of information and shed light on some of this uncertainty. I can predict it will not be dispositive, but it will be extremely helpful. We should be using it much more for brain death (and for coma in general). The cost will be more than justified by the knowledge we will acquire.
Finally, and I know a lot of people will not want to hear this. The medical community is gradually losing the brain death battle. There are going to be more of these cases - and no amount of jawboning or legal maneuvering will prevent them. It means we must go back to the drawing board. Another Harvard or Harvard type committee with physicians, ethicists, lawyers, religious scholars and members of the public to reexamine the question scientifically, legally, ethically - and reintroduce the concept to the public. That would take time and money but the alternative is even more protracted battles. Just watch.
Clemenceau said "War is too important to be left to the generals." Unfortunately, brain death is too important to be left to the doctors.
Cory F.
Thanks Cory - spot on as usual. As I mentioned, the apnea test is not necessarily black or white, there is (unfortunately) room for interpretation.
DeleteAs for PET scanning, there isn't enough data to warrant advocating it. Yet. Hopefully some researcher smarter than I will do that study. To me it doesn't matter what the test is as long as it is accurate.
I don't necessarily agree that we are losing the brain death battle any more than we are losing the battle with anything else. With all the information in the world readily available at the click of a button, people feel more empowered to question anything and everything. I don't believe it is anything more than that.
But as I always say, I reserve the right to be wrong.
I agree that currently the brain death situation is a battle, and the opposition is in the midst of an all-out assault, and gathering allies of dubious character. I agree that it is time for people with a lot of legal and medical clout to convene to address another "weapon" to counter this assault.
Deletemeanwhile, I don't know if brain death is proliferating, or just the publicity. but it seems a lot of children are dying of preventable accidents.
@ Dr. Cory - Maybe we *do* need to "reintroduce" the concept of brain death to the general public, just because today's advanced medical technology *can* make it confusing to sort out the difference between actual "life support" that can offer an opportunity for healing and some degree of recovery, and somatic support that can, to a degree, keep many body functions continuing even when the brain can no longer do so, and is so badly damaged that no recovery is actually possible.
DeleteWe need to remember that, for many thousands of years, humankind "knew" how to define death. The heart stopped beating, so there was no pulse and no breathing. The body no longer moved on its own or responded to any stimuli, and rigor mortis, then obvious physical deterioration, happened in a relatively short period of time. Neither the ancients who lived on earth several millennia ago, nor those who had the best medical technology of the times available to them 50 years ago, had much of a problem figuring out when someone was actually "dead," in terms of the essence of personhood no longer inhabiting the body.
But perhaps that's not so clear any more, especially to grieving families who are holding out hope for a recovery against all odds. They see their loved one still "breathing," even though a machine is actually performing that function. And, since this also allows the heart to continue beating, blood to circulate to keep the skin in good condition and soft to the touch, and some spinal reflex movements that look like s/he might be "responding" to something out here in the world, the body just doesn't conform with what we've come to expect when death occurs.
IMHO, it's also significant to note that all of the brain death dispute cases we've followed in recent times have been initiated by parents acting on behalf of infants, children, teens, or young adults. Accepting the death of a child is often the most difficult grief to handle, since children predeceasing their parents goes against our sense of how the cycle of life and death *should* unfold. When the body doesn't "seem" dead, and we have the "right-to-life-anti-brain-death" advocates out there to take advantage of these families, it's not that hard to understand how they get stuck in the denial stage of grieving.
@scarab
DeleteI agree with your basic point but a little historical correction.
there has always been difficulty determining when death occurred.
In Europe They used to put bells in coffins in case someone might be buried alive.
The French to have a procedure to see if someone who jumped or fell into the Seine was alive or dead when they were rescued.
in South American countries, people routinely "came back from the dead".
We used to declare an occasional person dead and they'd wake up in the morgue.
Poe's Premature Burial is about the subject - and remember no one has determined how long we should continue resuscitation in many conditions like hypothermia.
There has always been some uncertainty about the moment of death (not unlike life).
Technical tools may change the nature and parameters of the question, but will never answer it precisely.
I completely agree. There have always been *some* situations in which a person spontaneously recovered from a state of unconsciousness that was deep enough to resemble actual death, back in the day when more thorough testing wasn't available. But this would generally happen within a relatively short period of time after a *mistaken* determination of death. (Maybe heartbeat and pulse were so faint that they weren't readily detectable, whatever). Still, there was apparently enough oxygenation and blood circulation happening to keep the bodies functional and prevent deterioration. The fact that the patients in the brain death cases we've been following in recent times all require a ventilator to maintain these functions suggests that the degree of actual physical damage is different here.
DeleteDocB didn't mention the other ongoing dispute regarding the toddler that was transferred out of the country but there was a recent update in his situation. The husband of the family's attorney issued a new plea for donations. He said that Israel Stinson had the two procedures performed, tracheotomy and gastrostomy, and is now ready to return to the US.
ReplyDeleteHe claims a pediatric specialist in Pennsylvania has agreed to accept Israel as a patient but the pledged funding for an air ambulance service fell through and he said the family is essentially stranded in the foreign country.
Securing a treating physician is only one part of the equation. Unlike New Jersey, Pennsylvania does not have a similar religious exemption allowing for a rejection of the brain death determination. It is unlikely that Medicaid funding in PA will cover Israel's long term care.
Assumably, this doctor has chosen to accept Israel as a living patient who has suffered severe anoxic brain injury. So, s/he will code him as such, for Medicaid purposes. That's what Dr. Alieta Eck is currently doing to continue Jahi's services in NJ. So, there never was the *need* to utilize that religious exemption to the determination of brain death.
DeleteThe attorney's husband and Paul Byrne have made conflicting statements recently regarding Israel's status. On June 10th Mr. Snyder said a PA doctor has agreed to care for him. On June 16th Byrne had this to say:
Delete"Israel Stinson, a 2-year-old boy, had an asthma attack in early April 2016. Within a few days, the declaration of "brain death" was placed on him. Israel needed food and water that was denied to him for a month. Israel needed a tracheostomy like every patient who is on a ventilator for about two weeks. No doctor or hospital in this country would treat Israel. It was necessary to transfer him out of our country to a developing nation where he has received needed nutrition, tracheostomy and gastrostomy. Israel is alive and needs to come back to the United States. But where's the funding to pay for the air ambulance to transfer him back to the United States, and where is the doctor and the hospital that will treat him?"
Multiple people and organizations have been issuing urgent requests for more money on the family's behalf but no one seems to know what his current status is.
Byrne says he is in a hospital in a developing country and Snyder says the family is stranded there.
The last time Israel's mother released a statement on the GoFundMe page she said that Israel was breathing over the vent and doctors were going to wean him off the ventilator in the upcoming week. That timeframe has come and gone with no new updates from the family.
I'm still convinced that Jahi qualified for NJ Medicaid because of the religious exemption.
I recently re-read De Fina'a last declaration and was surprised to see that he said that the IBRF didn't get involved with the family until after Jahi was already transferred to St. Peter's. He further stated that his foundation arranged the testing that was done at Rutger's since St. Peter's declined. Jahi went directly to Rutger's for testing after her discharge from St. Peter's. From Rutger's she went to home care at the apartment.
This suggests that St. Peter's accepted her as a compassionate transfer. If she was under the care of a doctor from IBRF, like Fellus, he could have ordered the testing at St. Peter's.
You may well be correct about the compassionate transfer, but still, Jahi couldn't have been in St. Peter's for six months or more without having *some* doctor of record responsible for the care plan. Yet none of the court documents contain any declarations from *that* doctor, to corroborate Dolan's reports of those "vast improvements" in Jahi's condition once she got to the new location. And, if the somatic support that was being given had the effect of keeping the body in a relatively stable condition, why *did* the family have to remove Jahi from St. Peter's, and find a new doctor (Dr. Eck) to sign off on the Medicaid paperwork for the home care arrangement?
DeleteDeFina's declaration suggests that the hospital wouldn't "allow" testing because they didn't want to be drawn into controversy. But was that controversy related to the brain death debate sparked by media coverage of Jahi's situation, or perhaps to the situation with Dr. Fellus being investigated for sexual misconduct, which had been going on for several years prior to the license revocation in June of 2014?
I could be wrong, but the lack of *any* declarations or other documentation in court records related to what was done, and what was observed, during Jahi's stay at St. Peter's is very conspicuous by its absence. One obvious explanation for that information gap would be that Dolan realized that any testimony from a doctor who'd lost his license due to sexual misconduct with a brain-damaged patient wouldn't help the credibility of his arguments. It's also possible that DeFina would have omitted any references to Fellus in his *own* declarations for the same reason, since this situation caused a negative impact on the IBRF also.
DeFina's declaration was legal testimony. If he is eventually called as a witness and repeats those assertions under oath he would be committing perjury regarding when IBRF got involved with Jahi's care if indeed Fellus was treating her since she left Oakland.
DeleteDolan has repeatedly said that New Jersey is the only state in which Jahi is considered alive which is why the family must stay there. If they didn't need the religious exemption why choose New Jersey at all?
No declarations from anyone representing St. Peter's is curious indeed but maybe that was one of the stipulations they required before accepting Jahi's transfer, no involvement in the unprecedented legal quagmire it's become.
Jahi's case may have been the inspiration behind the many brain death disputes since but it seems that no facility, at least in the US, is willing to repeat the kind of involvement St. Peter's provided.
Scratch that, apparently a Naval hospital in San Diego is willing to get involved. It will be interesting to see what kind of diagnosis they arrive at considering the limited testing the parents are allowing which amounts to an EEG and brain radionuclide perfusion imaging.
DeleteRe: Jahi - What Dolan actually said was that the family went to NJ, and feels compelled to remain there at present, because "that's the only place where they *can't* kill her." As far as we know, there never yet *has been* any actual declaration of DDNC made there, so the family hasn't yet *needed* to object. Might be that relocating there was just a pre-emptive move, in case that situation *did* happen.
DeleteStill, I have to wonder if, at some point in time, either the California court or the defendants will ask about what kind of "treatment" Jahi was given during the first half of 2014, that somehow transformed her from a legally-dead body in CA to an intermittently "responsive" living person with a fully-functional body.
Re: Alex Pierce - I wonder about those test results too; if they indeed show no meaningful level of electrical activity or blood flow throughout the brain, would/could the doctors make a DDNC *without* the apnea test, since that's a generally-accepted standard? Might be that Alex's parents will end up fighting the same battle all over again.
to make things abundantly clear, normal living human beings are basically undergoing the same conditions as an apnea test every hour of every day. except, of course, not being brain dead, we pass.
ReplyDeletebut note, one blogger said "dr" Byrne knows all there is to know about brain death because he developed a pediatric ventilator. she shut down her comment section because we made a point of supporting our rebuttals of the claims she was parroting.
Oh no, you can't just say that about another blog and not leave a link. Come on, Ken. Cough it up.
DeleteIt's probably a blogger associated with one of those RTL organizations like Life Legal Defense Foundation or Lifesite News. They have all but canonized Paul Byrne and might as well, they accept everything he says as gospel.
DeleteHere is that link to that blog. Her comment about Byrne developing the pediatric ventilator is in the very last comment of the comment section - http://lesfemmes-thetruth.blogspot.com/2016/06/on-feast-of-sacred-heart-will-you-open.html
DeleteThanks for the link. She posted this letter from Dr. Byrne on June 3rd:
Delete“Israel Stinson was transported by air ambulance to a hospital out of the United States of America. This was necessary because no doctor and no hospital in these United States would treat Israel. The medical and legal systems in the United States are designed to get organs from patients who do not demonstrate consciousness, brainstem reflexes and capable of taking a breath. They are then labeled “brain dead.” If, as in the case of Israel Stinson and his parents, permission to take organs is denied, then the plan is to remove life support. Israel’s parents protected Israel and requested the treating doctors and hospital to treat Israel. Israel was starved of protein, fat and vitamins for more than 6 weeks.
Israel has been treated with nutrition, blood transfusions, tracheostomy and gastrostomy at a hospital out of the country. He is ready to be discharged from the hospital. However, lack of finances is preventing this from happening. Funding for air transportation and hospital treatment and care was promised but has not occurred. A minimum of $125,000 is needed immediately just to pay for air transportation and payment to the hospital. Furthermore, a doctor and hospital in the United States is necessary. For this to occur a doctor and hospital must accept Israel as a patient. Thus far this has not happened. Please do everything you can to provide funds for Israel and his family and help find a doctor and hospital that will take Israel as a patient. If you have questions, please send them."
Thank you. Paul A. Byrne, M.D.
It appears they never received the funds to pay for the initial air ambulance and foreign treatment so they're already $125,000 in the hole.
You would think their sponsors had worked all of this out before having the family drop everything and fly out of the country.
Thanks for the link. I left a comment, but I have little faith that she will allow it through her moderation.
Deleteshe has allowed no comments since her post that the thread is closed, to the best of my knowledge.
DeleteShe allowed your comment to go through and responded to it. *Sigh* There's no getting through to her. She's a kook.
DeleteDocB, here's her reply. Big surprise, she cites the Brazilian doctor:
Delete"If, as you say, "brain death" is so frequently "improperly diagnosed" then its useless as a parameter for medical decisions.
As for the apnea test, Dr. Byrne isn't the only medical expert calling it deadly. I think an anonymous poster calling himself "DocBastard" has a lot less credibility than the doctors quoted by name (including a neurologist) on numerous posts on my blog.
http://lesfemmes-thetruth.blogspot.com/2016/06/the-argument-over-brain-death-gets-hot.html#more
According to the head of neurology and neurosurgery at Federal University in Sao Paulo, Brazil, Dr. Cicero Coimbra, the apnea test, "cuts off oxygen to the brain, will bring about severe, irreversible brain damage in patients who, with proper care, would otherwise have had a good chance of survival." Who has more credibility -- Dr. Coimbra or "DocBastard?"
June 14, 2016 at 11:17 AM
The following was reported on the Lifesite News regarding Cicero Coimbra:
DeleteBut, Dr. Coimbra said, the information that the apnoea test causes severe, irreversible brain damage, is being suppressed. Even with this knowledge of the danger of the apnoea test and the fact that some patients who are declared brain dead can and frequently have recovered, the legal definition of "brain death" is itself irreversible.
He told the conference of an experience in his clinical practice as a neurologist involving a 15 year-old girl with a severe brain trauma. She was declared "brain dead" but he treated her with thyroid hormones and she began to recover. She started breathing and having seizures, he said. "But a ‘dead’ brain cannot seize. That brain cannot express convulsions and she was having convulsions." This meant that a diagnosis of "brain death" even according to the Harvard Criteria, did not apply.
"And so I went to the doctors in the ICU that, up to that time, were denying proper care to that patient under the assumption that she was brain dead." One of the attending physicians in the ICU, he relates, wrote on the girl’s chart that even recovery could not reverse a legal definition of "brain death."
The physician wrote the following statement, a photocopy of which was shown at the conference: "If the diagnostic criteria for a brain death are fulfilled at a certain time, the person is legally dead no matter whether those criteria become no longer fulfilled later on."
Looks like Byrne gets all of his ideas from this guy. Coimbra must also be an extreme religious conservative like Byrne.
I'm surprised she allowed my comment through, but her ad hominem attack on my pseudonym is not at all surprising. I responded back to her, but I doubt she will allow *that* through. In case she doesn't, here it is:
DeleteI never said it was improperly diagnosed frequently, so please do not put words in my mouth. There are, however, a handful of well-documented cases like Zach Dunlap which *have* been misdiagnosed. A few mistakes (which are admittedly hard to swallow) hardly invalidates several decades of a successful medical practice. And for clarification, while Dr. Byrne certainly has an opinion on brain death, he is not an expert on the subject.
I've seen Dr. Coimbra's work, and he is in a fringe minority and is mistaken. He has authored a total of -0- articles on anoxic brain injury and brain death. On the other hand, Dr. Calixto Machado has several dozen. Dr. Machado is a professor of neurology and neurosurgery, President of the Cuban Society of Neurophysiology, and President of the International Symposium on Brain Death and Disorders of Consciousness. He had this to say about the apnea test: "Nevertheless, when an appropriate oxygen-diffusion procedure is used, this technique is safe." He is the primary author of "Brain death diagnosis and apnea test safety" (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2824942/) which was published in 2009, in which he calls the apnea test "a mandatory examination for determining brain death (BD), because it provides an essential sign of definitive loss of brainstem function".
You may question my credibility all you like, but attacking me based on my pseudonym is hardly fair. Regardless, you would hard pressed to question Dr. Machado's credibility and credentials.
Thanks for posting your reply. I don't think I can bring myself to revisit her blog after reading her replies, not only to your comment but to all of the others who don't parrot her viewpoint.
DeleteAlthough Coimbra is an actual neurologist it appears his claim to fame is treating MS with vitamin D. At least that's what consistently comes up when you search his name online.
I think, like Byrne, he lets his religious beliefs trump his scientific training.
Regarding the safety of the apnea test,as I said before,
DeleteIt is usually extremely safe but not entirely so. However, the main danger does not appear to be related to the blood gases.
We followed our patients extremely carefully with ABGs (we had one of the country's largest ABG labs) when we did the test. Everyone got a gas at start, five minutes and ten minutes (and at any other time if something unexpected happened.)
In patients without severe lung disease, 100% oxygen obviates the risk of hypoxemia in virtually every patient. Extreme desaturation does not occur that quickly in those pre oxygenated. Also remember that all these patients should be monitored by O2 sat monitors, which will tell if they are desaturating (the saturation is not as precise as the pO2 but it is more than adequate clinically). IF they do desalt below 90, stop the test.
In theory the elevation of pCO2 from say 30 to 60 (and that presumes no brain stem function to stimulate ventilation) could cause some minimal vaosdilatiton of cerebral vessels. Could this aggravate intracranial pressure? Well remember that theoretical possibility is only present in someone who is not breathing in this case, i.e. likely brain dead, and I sincerely doubt whether that level of rise, which is not extreme, in that short period of time, has any serious clinical implications - in anyone. It is more a theoretical than an actual possibility.
pH drops from respiratory acidosis are generally not associated with important clinical changes in circulatory function.
The main problems I have seen with the test, in a small number of people appear to be related to some relationship or axis between ventilatory control and cardiovascular control. I do not know why that is but a small number of patients became hypotensive and often bradycardic when they are removed form the ventilator - and the happens quickly, far too soon to be attributed to either hypoxemia - which we never document, hypercarbia -which cannot occur that quickly or ph changes. There is some axis between ventilation and cardiovascular stability in these patients I do not pretend to understand.
But it is a small minority and in general it occurs in those with the worst neurologic injuries. Take that for what it is worth.
Cory F.
Dr. Franklin are you familiar with the views of Cicero Coimbra, the Brazilian neurologist, regarding the apnea test? I posted a bit from his remarks to a conference in Rome earlier but this link provides a fuller understanding:
Deletehttps://www.lifesitenews.com/news/brain-death-test-causes-brain-necrosis-and-kills-patients-neurologist-to-ro
I was especially interested in your answer to his statement that the apnea test actually causes the brain death (necrosis) it's meant to detect but I think you might have already refuted it here.
It is a scare story that catches the people who don't comprehend how the test is performed.
Deleteit is quite literally true that holding your breath subjects your brain to more anoxic/CO2 stress than an apnea test subjects a not-brain-dead person to.
@ anonymous
DeleteI wasn't familiar with Dr. Coimbra but I read what he said. I will be charitable and simply state that I think he is mistaken.
I believe the CO2 risk from an apnea test is more theoretical than real. Cerebral vasodilation from elevated CO2 takes a little time and I think ten minutes is not enough to affect most patients measurably, nor is a rise to 60mm. Once the test is done, the patient is put back on the ventilator and usually hyperventilated so the possibility for damage is minimal.
Remember the apnea test is a a diagnostic test, and every diagnostic test carries some risk, however infinitesimal (noninvasive tests carry the risk of misinterpretation, even physical exam carries the risk of cross infection). The risk of a diagnostic apnea test is exceedingly small in that respect (at least form CO2) and I think his point in the link is in error.
Cory F.
Thank you for affirming what I've been saying. I'm not sure if you saw the article that Coimbra co-wrote with Paul Byrne. It makes it very clear that he doesn't believe brain death even exists.
DeleteThanks to you both. I was trying to find out more about this guy's views because I figured he must have an agenda of some kind.
DeleteDocB, do you have a link to the article he wrote with Byrne? I'm a little wary of any doctor who aligns himself with Byrne, especially regarding brain death and organ donation.
Now I feel stupid, just realized you included a link in your post. That article must have been talking about the conference in Rome where Coimbra made his remarks.
DeleteIt's in the post above, but here it is again: http://www.chninternational.com/brain_death_is_not_death_byrne_paul_md.html
DeleteInteresting that Loma Linda is part of a Christian institution (Adventists) and they don't believe in pseudoscience as far as I know.
ReplyDeleteSurprisingly, hospitals affiliated with Seventh Day Adventists also perform elective abortions.
DeleteFrom what I've read they take the Bible quite literally, meaning if an opinion on something isn't specifically spelled out in the Bible it isn't forbidden.
I'm pretty sure the Bible is silent regarding brain death.
How are O2 and CO2 levels determined? Is there some kind of continuous readout, or must blood be repeatedly drawn? Please forgive my ignorance.
ReplyDeleteI would think continuous readouts would give a better and more accurate result.
Arterial blood draws. I'm sure the technology for continuous blood monitoring is near, though.
Deletethere are optical SPO2 monitors available in a range of very reliable and very affordable models. (by which I mean those are the extreme ends of the spectrum available) there are also optical blood CO monitors available, but these only come in expensive/not extremely reliable. most heart monitor equipment now includes an optical SPO2 monitor. my department has ONE CO monitor that really has the primary mission of deciding whether a blood draw to get a precise reading is warranted.
Deleteaddendum: not sure if the CO monitor can also look at CO2 levels.
DeleteOxygen saturation is different than arterial oxygen. One measures the percentage of hemoglobin saturated with oxygen, the other measures the actual partial pressure of oxygen, which includes oxygen on hemoglobin as well as dissolved oxygen.
DeleteI see. we just deal with SPO2 on my end of the trip.
DeleteI really like this portion of VMU's motion to strike Byrne as an expert in the Mirranda Lawson case: "Dr. Byrne's rambling Affidavit sets forth random facts drawn from the VCUHS MCV Hospitals chart for the child on various days. It fails to set forth how such random facts are used in arriving at what are represented to be Dr, Byrne's conclusions. His conclusions appear to be entirely ipse dixit."
ReplyDeleteIpse dixit: (Latin for "he himself said it") is a term used to identify and describe a sort of arbitrary dogmatic statement, which the speaker expects the listener to accept as valid; the fallacy of defending a proposition by baldly asserting that it is "just how it is" distorts the argument by opting out of it entirely: the claimant declares an issue to be intrinsic, and not changeable. Definition from Wikipedia
The kid who drowned surrounded by people freaked me out and made me realize how damn lucky I am to be alive.
ReplyDeleteI jumped into a pool when I was 2 and couldn't swim. My uncle immediately rescued me and I was fine but holy smokes...
what disturbs me is that nobody began CPR. at an undisclosed time in the past we rolled on a pool drowning and 4 minutes after the victim was noticed inert in the pool he was talking to us - because someone began CPR.
DeleteThe Bystander Effect. A social psychological phenomenon where people do not offer aid to another when other persons are present. The probability of help is inversely related to the number of bystanders.
DeleteBasically, someone else will do it...
According to the young girl who helped pull Alex to the surface several children came forward wanting to start CPR but were told to stay back and let the teen-aged lifeguards do their job.
DeleteSadly, the lifeguards did nothing but put the boy on a floating backboard to await the paramedics. It was the first responders who immediately removed the child from the pool and began CPR.
Sources are currently saying that the lifeguards didn't want to risk a spinal cord injury which is why they didn't start CPR.
Better a living quadriplegic than a dead one, I think...
DeleteThat's kind of what I was thinking.
DeleteI would be more inclined to say the lifeguards were the ones who failed to prevent the kid from dying.
DeleteIn his testimony to the Virginia court, Paul said this about the apnea test:
ReplyDelete"It's a test where they take the ventilator away for 10 minutes, which suffocates the patient, makes the carbon dioxide go up. When the carbon dioxide goes up, their brain swells, and they get worse... and they want to do this to Mirranda."
Channel 12 news let this comment stand with no refuting it.
Very misleading to the general viewers
Do the parents of these children think their child will come back healed? Poor Jahi has been unresponsive for 2.5 years. I read where Dr. Byrne said baby Israel could make a complete recovery.
ReplyDeleteThere is another tragic case I have been following on Facebook. Knox Stine was 2 months old when he stopped breathing. They think SIDS, father did cpr until emts arrived. He had the apnea test but because he could take 1-2 breaths a minute he wasn't brain dead. Doctors believe he is PVS. Has a trach and feeding tube and sent home because the parents didn't want to turn off ventilator. They post pictures of him with his 3 older siblings. So stiff looking. So tragic.
Mary
The little one exactly who drowned enclosed by means of persons freaked everyone available in addition to manufactured everyone know the way darn happy My business is for being living. When i leaped amazingly in a pool area as i seemed to be 3 in addition to wouldn't move. The older brother promptly rescued everyone in addition to When i seemed to be very good although holy buds.
ReplyDeleteI think we need more Paul Byrne in this world. Fighting for what's right. He's a maverick just like Shewmon. My heroes.
ReplyDeleteYes indeed, we definitely need more ultra-right wing lunatics who deny the science they were taught.
DeleteIn Shewmon's view brain death doesn't equate to death of the organism. Regardless, he still doesn't think it is morally or ethically necessary to maintain these bodies artificially for extended periods of time just because we can.
DeleteI remember when we thought Shewmon was the extreme crackpot. its scary that he is now the reasonable one.
DeleteThis comment has been removed by the author.
ReplyDeleteIt's all about the organ stealing with Byrne. He posted this today. http://www.renewamerica.com/columns/byrne/160615
ReplyDeleteYes, Byrne is comparing the declaration of death by neurological criteria to the massacre in Orlando:
ReplyDelete"Yes, we hear about killing of many innocent people in Orlando. It is absolutely awful that these actions occur. But is it any more awful than that the medical and legal system has a way to impose death on beautiful 2-year-old Mirranda Lawson?
Yes, the killing in Orlando was absolutely terrible, but what happens in our medical and legal system that is designed to get organs from patients who are unconscious and on a ventilator, especially when the patients are young? When the parents say no, you cannot do an apnea test that can be only harmful and possibly kill their child, they plead with the doctors to help and they even go to court for help. Yet there is no help because it is a medical and legal system designed to get organs for transplantation from unconscious comatose persons on a ventilator."
The man is unhinged.
I am beginning to wonder if that might be able to be medically proven.
DeleteMore often than not, it is the family who initiates the donation of a patient's organs after brain death. In fact, in the US the physician(s) caring for the patients before/during the determination of brain death are prohibited from initiating the conversation. In my experience it has almost always been the family to request donor services.
DeleteI will never forget one mother's words to me as I was discussing her 9yo's imminent brain death with her; "If I cannot bring my baby home, I want another mother to be able to."
in case you missed it on earlier threads, this is my state's own case of a child suffering a catastrophic medical event and being diagnosed as brain dead.
Deletehttp://www.oregonlive.com/living/index.ssf/2016/05/a_childs_spirit_lives_on.html
much different end to the story.
Thanks, Ken. I do believe that most people are fundamentally compassionate beings. From one US coast to another (it's no secret that I am from Newtown, CT) these stories are common among the grief-stricken and medical communities, but apparently are not often deemed sensational enough to be newsworthy.
Deletehysterical overblown drama sells more newspapers/TV ads.
DeleteMirranda Lawson's parents filed a $30K bond yesterday to appeal the lower court judge's ruling. http://wtvr.com/2016/06/15/mirranda-lawson-legal-battle-continues/
ReplyDeleteThanks for the link Cleo. The $30K bought them an additional 3 months to file a petition to request a hearing before the VA Supreme Court.
ReplyDeleteAnd I suppose VCU has to continue her care. Those poor people. All of them really, I feel for the deluded family too. And Byrne supporting/encouraging it all. Can he not be censured by the AMA or something, or is this just free speech?
DeleteWhat incenses me about the media coverage surrounding these cases is the misinformation they spread by quoting people like Byrne with no fact-checking or rebuttal from more qualified sources.
DeleteThe endless court pleadings surrounding the Lawson and Pierce cases are just a stalling tactic to avoid the necessary diagnostic testing because it might lead to a brain death determination.
Both families are seeking transfer to another facility that is willing to continue artificial maintenance indefinitely while they wait for miraculous intervention.
The Pierce family is pleading for a doctor and hospital willing to provide a "second opinion" when they won't even allow their son's current doctors to conduct testing that would offer a fuller understanding of his condition.
The recent court interference in these latest disputes has set a ridiculous precedent which essentially allows families to refuse diagnostic testing that is standard medical practice.
Via legal intervention and judicial fiat, parents and family surrogates with no medical training are also compelling healthcare providers to render unnecessary therapies and theoretical treatment protocols.
Now that the courts have opened this can of worms where does it end?
Alex Pierce is being transfered to a Navel hospital in San Diego, California. Read this on a post on the Life Legal Defence Facebook page.
DeleteI also read on a post there that he is moving his arms. I still wonder why nobody at that pool gave him CPR? There were life guards, parents and teachers there. So sad.
Mary
absolutely on the lack of CPR. there is no excuse. we teach CPR EVERYWHERE, and drownings are one case where it has an above average success record.
DeleteProbably because it is very effective in drowning situations, I have found that everything I have ever done relating to water (scuba training, swimming personal survival, beginning lifeguard training that I never finished) all had CPR as one of the key modules.
DeleteIn view of that, it seems impossible that there was nobody there who was able to attempt CPR, so I wonder why they did not. Fear of being blamed/sued if it all went wrong? The lifeguards at least must surely see that as part of their job.
Ugi
I can't imagine anywhere that does not include CPR certification as part of the prerequisites to be a lifeguard. and ALL CPR training includes the information that under good samaritan laws, you CANNOT be sued for acting within your training in an attempt to save a life.
DeleteAs an LVN I have to take a CPR class every two years. You would think teachers would since they are around children. They had high school life guards there that not have been hired without taking a CPR class.
DeleteMary
I am a teacher and we have to take classes in CPR and first aid every other year.
Delete@ Anonymous 17 June 2016 at 15:49, who said,
Delete"What incenses me about the media coverage surrounding these cases is the misinformation they spread by quoting people like Byrne with no fact-checking or rebuttal from more qualified sources."
I share your frustration whenever I see this. IMHO, it's grossly unfair that the doctors actually involved with these patients are functionally under a legal "gag order" that *prevents* their making any kind of comment that's specific to the situation, because of HIPAA and other potential legal exposure, related to the court cases and potential malpractice suits. Yet people like Byrne are given free rein by the media, to blather on with whatever misinformation and personal subjective opinions they care to promote.
So, we end up with a story that portrays the real doctors as heartless villains who want to "kill" someone's innocent child, to harvest organs, bury alleged medical mistakes, or whatever, with no way to either refute this slander, or give *accurate* medical information to the public. This does *nothing* to educate or inform the public about the real issues associated with DDNC. It only contributes to the confusion that causes mistrust of *any* diagnosis of irreversible neurological damage.
I read on a Facebook page "pray for Alex Pierce" that Alex is now at the Navy Hospital in San Diego. He had failed an EEG and blood flow test. Mom just wants more time. She says she wouldn't want him in a long term facility.
DeleteThe story also states that CPR wasn't given because the "lifeguards" didn't want to cause a spinal injury. Didn't get CPR till paramedics arrived.
Mary
This site has the most complete timeline yet of what happened and Alex's current condition:
Deletehttps://www.facebook.com/lovesongeventsandphotography/?fref=photo
Mary, I wondered about the spinal cord injury statement too. Still, according to the pictures it appears the child has some sort of neck brace on.
DocB and Ken, any ideas why there would be a neck brace? Does that mean there was some sort of spinal injury?
The girl who helped pull Alex to the surface gave a very detailed description of the way she found him at the bottom of the pool. She noted that there appeared to be blood around his face.
What a horrific situation. According to the two children who pulled Alex from the bottom the nearest lifeguard was told a child was in distress and maybe drowning but she just stood there as if she didn't believe them. When the two youngsters pulled him to the surface they said that same female lifeguard was 5 feet away and still did nothing. Unbelievable!
The cervical collar is placed as a precaution on pretty much everyone unless there is a less than 0% chance of a neck injury, and even then the medics sometimes put on one anyway. You know, Just In Case.
DeleteIt's been two weeks since Alex Pierce's injury and he still has the collar. Is it impossible to discern whether someone has such an injury if they are unconscious?
DeleteIt is not uncommon to put a C-collar on an intubated patient. it helps keep things from shifting around.
Deletemary;
Deletethere is a possibility that he dove into a too-shallow section of the pool, and hit his head. still no excuse to NOT do CPR on a drowning victim in cardiac arrest.
"yeah, we let him die, but at least he's not paralyzed" is a piss-poor tradeoff.
Reports said surveillance footage showed him perhaps inadvertently drifting into the deeper end of the pool.
DeleteThe pool went up to 14 feet but he was found in 6 feet of water. The mother also said on Facebook that he knew how to swim.
of course none of that excuses those who didn't offer any aid once he was discovered.
On Alex Pierce FB page it said he is being treated for pneumonia and on Tuesday is having an EEG to see if the new movements are other then spinal cord spasms. I think parents will not keep him on support if he is brain dead like Jahi. They just want to be 100% sure.
DeleteMary
if he has pneumonia, it will likely become a moot point sooner rather than later.
DeleteI'm guessing that pneumonia, since it affects the lungs, may also provide the parents with a further argument for refusing the apnea test. (If the EEG and brain blood flow scans show little or no activity, the naval hospital may want to move toward exploring a DDNC also).
Deleteexcept he is already significantly weakened, so it may end the debate.
DeleteSome interesting reading on Prof. Pope's blog:
ReplyDeletehttp://medicalfutility.blogspot.com/2016/06/brain-death-two-false-assumptions.html
Dr. Truog's point restates the need to re-evaluate the existing criteria, which are primarily based on the Harvard Committee's recommendations, just because times have changed since then. Additional testing which might give us a more accurate measure of that often-disputed "cessation of ALL brain functions" is now available, and it's now possible to somatically maintain a body for a very long period of time *after* brain function ceases.
I also found Dr. Yang's entire presentation insightful.
http://bioethics.hms.harvard.edu/sites/g/files/mcu336/f/Bioethics_Forum20150120.pdf
Though her major point was highlighting some of the different cultural and religious dynamics that factor into different attitudes in China and the USA, these human factors point to the fact that the concept of brain death still needs further clarification everywhere.
There is a new update on Israel Stinson go fund me page (don't know how to do a link on my tablet) states they will coming back to the states soon since he is no longer brain dead. Mom states he is moving his fingers and toes and his eyes are dilating. I wonder about how can 3 doctors here say brain dead and now he is not. But will be ever be " awake"?
ReplyDeleteMary
It's amazing how much better he is doing now that there is no way to independently verify his condition.
DeleteI think it says a hospital here in USA was found to take him. Maybe where Jahi went? There is a new picture of him with trach. No video though.
DeleteMary
I believe Israel's attorneys already tried to get a transfer to St. Peter's in NJ where Jahi was for a time, but that hospital turned them down. They've stated in court documents that they want him back in CA, so they may go the route that Jahi's attorneys are attempting - getting the death certificate rescinded. This is madness.
DeleteI believe it says they found a hospital that is taking him in the USA. Must've found a doctor to admit him. Mom says soon.
DeleteMary
I've got a few contacts who want to open a care center for the brain dead. they think it sounds like a good way to make a lot of money.
Deleteof course, it probably won't pan out, because they will expect the families to actually PAY for the process.
addendum: why does he have a trach if he is breathing on his own, now?
DeleteMom says takes a few breaths on his own but still on vent. Must be all Dr Byrne's hormone treatment. They also ask for more money. Soon as an update is posted more people donate. I haven't found anything from the doctors saying anything.
DeleteMary
Here's the link Mary mentioned:
Deletehttps://www.gofundme.com/saveisraelstinson
"As you all may know we are still outside of the country but will be returning shortly to the States with a brand new hospital willing to accept us now that he is considered "not brain dead".
People like Paul Byrne use quotes around brain death since they considers it "fake death" but why include the "not" unless it's a fake diagnosis?
It was stated earlier that a doctor in Pennsylvania had offered to care for him. I'm pretty sure that the doctors at Kaiser declared him dead so it will be interesting to see how they work around that. PA doesn't have the religious exemption either.
Regarding Israel Stinson, I just read the court testimony of his attending while at Kaiser's and he was pronounced dead at noon on April 14th, at which time a death certificate was issued.
DeleteI think this family will face the same hurdles as Jahi's. She also had doctors who alleged that she was no longer brain dead yet her death certificate has yet to be rescinded.
Wouldn't it take more than the word of some as yet unnamed foreign doctor to overturn Israel's declaration?
As we've already seen in Jahi's case, having a death certificate issued in one state doesn't necessarily preclude finding a doctor somewhere else who chooses to accept that individual as a "live patient." If this new doctor that the family has found in Pennsylvania has already agreed to treat Israel as "not brain dead," he can be admitted to a hospital, receive whatever "treatment" that doctor approves, and even get Medicaid to pay for it, if the doctor who orders and signs off on it is qualified in that state. They wouldn't even *need* to address a religious exemption to do this, so it wouldn't be an issue.
DeleteI still can't completely wrap my mind around the fact that a person can be considered legally dead in one location and treated, even at public expense, as a live patient in another, but we've seen it happen.
Latest update on Alex Pierce:
Deletehttps://www.facebook.com/search/top/?q=pray%20for%20alex%20pierce
She said today they will redo all of the testing Loma Linda did weeks ago.
"Spontaneous pupillary activity has been described as a preterminal event produced by intermittent discharges of dying neurones along the efferent arc, similar to Cheyne‐Stokes respiration seen in terminal brainstem damage"
DeleteMary, I found that in a medical journal. Time will tell if it applies to Israel Stinson. The changes his mother describes aren't necessarily a good thing.
I think doctors such as Paul Brynes is giving Israel's mom false hopes. He had posted on one site that this baby can have a partial to full recovery. All this with all the damage to his brain stem and not breathing.
DeleteThere is another case, Baby Knox Stine, was 2 months old when he stopped breathing. SIDS they said. Dad did cpr. In the hospital they didn't pronounce brain death because he has a breath of two a minute. Gave him a trach and GT and sent home. They know he won't wake up. Might be PVS. But parents are Christian and wouldn't just let him pass on. Think he is 8 months old now.
Mary
the stupid continues.
ReplyDeletehttps://www.blogger.com/comment.g?blogID=8568419039847692717&postID=816587285133790858&page=1&token=1466370733710
If your new friend is waiting for the Catholic Church's confirmation of Paul Byrne's sainthood after his passing, she'll be waiting a while. Note that he is a *past* president of the Catholic Medical Association, but no longer affiliated. The public position that he's chosen to adopt - believing that brain death isn't real, and is a hoax perpetrated by the evil cabal of the murdering organ harvesters - is actually in direct *conflict* with the Catholic Church's position on both brain death and organ donation.
Deleteoh, that's priceless. you should bring it up, there.
DeleteKen, as Doc B. has already demonstrated with his attempts to refute the antivax argument, there's no real point in trying to reason with the unreasonable.
DeleteOn that point, notice that this writer's more recent posts include jumping on the antivax bandwagon by claiming that multiple vaccines cause fatal reactions, and accusing Pope Francis of undermining the faith. As is the case with any other organized religion, there are no guarantees that self-identifying as "Catholic" means that the individual actually understands the teachings of the church, or that the person has the cognitive ability to process factual information.
yeah, I've crossed paths with a few catholics who pick and choose what doctrines they want to follow.
DeleteListening to Dr. Truog's lecture (he has cited some our stuff on DNR in the OR before), you can hear him say without actually saying it, that we have been working around a fifty year old brain death diagnosis and we clearly need more imaging fMRI and PET (though he didn't cite it specifically) in brain death and coma.
ReplyDeleteIt's as if we said for the diagnosis of appendicitis we don't need CT and ultrasound, we were doing quite well before they came along.
Cory F.
Dr. Cory, did you listen to the question and answer session after the lecture? Dr. Truog had some interesting thoughts regarding offering an additional option to families facing a brain death diagnosis, that of keeping the body on support like the family of Jahi McMath have.
ReplyDeleteIf I'm understanding him correctly he said that we've already had that experiment in New Jersey because of their religious exemption and it hasn't changed things much. There are still organ transplants in NJ and there isn't an abundance of brain dead people languishing at home on ventilators or in LTC facilities.
How feasible would it be to use fMRI imaging to gauge if awareness remains in an unconscious patient? Is this type of imaging widely available?
I've read about the studies being done on people who were thought to be in a vegetative state yet fMRI imaging showed their brains reacting as a normal brain would to certain kinds of questioning.
It would be interesting, if this research proves to be valid and means what we think it means, to ask the unconscious person if this is how they want to live.
@ Anonymous
ReplyDeleteI don't know if we are ready to communicate with coma patients via fMRI yet, but the technology is definitely underused. As best as I can understand, this is primarily due to questions of cost.
This has never made sense to me, since theoretically the costs of the technology should come down with greater use. So it is more likely a question of charges. Payers don't want to pay for this technology.
This is where the medical community must step in - what si the price of knowledge. I've always smiled when a doctor tells me he doesn't want to order an fMRI or PET because "what will it show in this patient?" or "how will it change management?". Th point is we don't know that because we don't have enough experience with the technology. You will never learn if you don't use this technology. This is not a popular attitude. I saw this in ICU with blood gases and pulmonary artery catheters - and both were used badly by people who didn't understand their strengths and weaknesses. I also saw this with CT scans which took nearly a decade to gain ready acceptance when they were introduced - again, primarily on the basis of cost.
There are gaping holes in our knowledge in these areas - and the brain imaging technology will help fill them.
Cory F.
Cory,
DeleteFrom what I've seen in research, the cost range between 400$ and 1000$ USD per scan session, not including analysis.
A session can last between 20 and 50 minutes depending on the research topic & stimuli.
I don't know the cost of a DTI session but a guesstimate out of my posterior would be twice the cost. That said, no patients want to undergo a DTI scan for more than 20 minutes because it feel like the multi-ton magnet is shaking very badly...
Alain
Never heard of DTI so I looked it up. This was the first hit:
Deletehttp://www.neurography.com/about-mr-neurography/84-diffusion-tensor-imaging-now-available
One of the lead inventors, Dr. Filler, is available as an expert witness to prove brain injury with his technology. He's also a lawyer and can represent the brain injured. He's one stop shopping for all your malpractice needs!
I wonder what this kind of imaging would show on Jahi McMath. If it reveals the nerve tracts in the brain it should theoretically prove whether or not Jahi has enough remaining connections to account for her alleged "intermittent response to commands".
which, of course, the scamfam will completely ignore when it shows what they don't want to see.
Delete@Alain
ReplyDeleteThanks for the info. Not that much money in perspective.
And in the patients we're talking about that shaking may be the least of our problems.
Cory F.
In case of clinical patients, I'd recommend putting them out to sleep if you're going to do a DTI scan but I have to admit, such scans are useless in case of cerebral death as DTI is a structural scan, not a functional one and you may be more interested into brain functioning.
DeleteStroke patients would be more indicated for DTI but please, do take it with the appropriate grain of salt given that, I'm a scientist (http://www.ncbi.nlm.nih.gov/m/pubmed/21833294/), not a medical doctor, who, as of now, have drank 600ml of 8% beer after a day of work which was after a short 3 hours sleep night :D
Al
the argument in favor of the DTI would be that if it more accurately shows dissolution of the brain then it might more clearly show there is nothing left in there - but then two years ago, Dolan waved a copy of a CT scan that was so bad even people with no experience immediately saw it looked bad, even without a comparison image of a healthy brain. - and said it proved Jahi was alive.
DeleteWait, you mean that Jahi has had life sustaining measures since 2 years ago?!?!
DeleteIf you ask, yes, I tend to live under a rock...
Alain: Jahi has been on somatic support for 2.5 years. She was declared dead on December 12, 2013.
DeleteAlain the fact DTI is a structural scan as opposed to a functional one wouldn't deter McMath's lawyers. After all they did offer an MRI image and pointed to "ribbons" of preserved brain tissue and claimed it proved that Jahi was alive.
DeleteWhether or not and to what degree she functions is another story entirely
I do agree, I was thinking about SBM (science based medicine) use. That said, there's too many lunatics in this world to abuse whatever medical modalities to support their predestined conclusion (I look at you Mr Wakefield).
DeleteAl
May I put Dr Byrne in that basket too?
DeleteAl
* "Dr" Byrne
DeleteThis presentation rounds up all the usual suspects: Dr. Paul Byrne, Bobby Schindler and Angela Clemente.
ReplyDeleteThey mention Shewmon's research on brain dead subjects whose bodies are maintained long term but fail to note that not one of these people recovered.
Byrne uses a specific number, 175, when he alleges the number of documented patients who "recovered" from brain death. I wonder if it's any coincidence that Shewmon researched 175 cases of long term somatic support.
https://www.lifesitenews.com/opinion/watch-shocking-realities-of-brain-death-and-organ-donation
and how many of those 175 are ones we've already debunked as either being not properly diagnosed, or not diagnosed at all?
DeleteI found something interesting in the Stinson court documents about this alleged PA medical facility that Life Legal Defense says is taking Israel. In the Fed appellate case, the family's atty (from Pacific Justice Institute) said this on May 1: "We could get him transferred to a number of facilities across the nation, including a specialized facility in Pennsylvania that had agreed to take him; but then we found out that Pennsylvania has a statute that prohibits taking patients who have a brain death declaration from another state. But in New Jersey the parents can petition the court to have the brain death revoked and that would also open the door for long term treatment at a facility like, for example, St. Christopher's in Pennsylvania that specializes in cases like this. I spoke to a doctor there, Dr. Frank Nesby, and he said they have many patients that are in Israel's condition. They don't do a brain death exam there. They just care for those patients according to the wishes of the family. " The doctor they speak of is Francis McNesby. I found him at St. Christopher's Hospital for Children in Philadelphia, a Catholic hospital. Dr. McNesby specializes in treating children who are "technology-dependent" according to the hospital's website. Here's a link to a Catholic Medical Association magazine, The Pulse, where he writes about developing homes for children with special needs (p. 6). http://cathmed.org/assets/files/ThePulse-SEPT2015-Final-WebResolution.pdf
ReplyDeleteI don't understand how parents can put their brain dead child in a hospital like this. Day after day, month after month. Ventilators pumping, feeding machines pumping formula. Never to wake up. I guess eventually infection stops their heart. I wonder how many parents would want that happening to them.
DeleteJust read an update on Alex Pierce. EEG showed no brain activity.
Mary
Such sad news. If only someone had done CPR sooner Alex Pierce might have had a better outcome.
DeleteI was reading through the comments and a great many people are still encouraging the family to keep fighting and praying for a miracle. Some are including anecdotes about how their family members recovered from the same thing. It just highlights how much misinformation is out there.
I have a question for DocB. In an earlier update regarding Alex Pierce they said he had the EEG done and was receiving a blood transfusion as well. Israel Stinson's mother also said that he received a blood transfusion when he arrived at the foreign hospital.
I'm confused about the need for it in an anoxic brain injury. It was understandable in Jahi's case because she lost so much blood but is there some other therapeutic purpose?
the facebook pages denying alex's condition aren't showing much sign of brain activity, either...
DeleteThat life legal defense Facebook page deletes post that says EEG shows no sign of activity. I saw a new post about but I am sure will be gone soon. Alex's update said they are repeating Mri and blood flow study.
DeleteI don't know if Paul Byrne's has visited yet.
Mary
Regardless of the isoelectric EEG, it looks like the family has decided to continue care. He is receiving plasma because his blood is no longer clotting properly and he's getting a longer feeding tube since his stomach isn't digesting either.
DeleteThey posted a new photo of Alex with his hair gelled up because they said he is obsessed with his hair. Jahi's mom has truly started a trend.
I haven't seen any posts mentioning a repeat MRI or blood flow study Mary. It wasn't on the Life Legal Facebook page.
Paul Byrne has done enough damage. He needs to stay far, far away from this family.
https://www.facebook.com/hashtag/prayforalex?source=feed_text&story_id=1365916193424738
I found it on the GoFundMe page Mary:
Deletehttps://www.gofundme.com/27vh258
This part of the attorney's statement confuses me:
Delete"we found out that Pennsylvania has a statute that prohibits taking patients who have a brain death declaration from another state. But in New Jersey the parents can petition the court to have the brain death revoked."
OK. So it seems that Israel's death certificate, issued in CA, would currently preclude his admission to any PA hospital. But is the attorney suggesting that the parents *can* just go ahead and initiate a legal action in NJ, petitioning to have the CA death certificate revoked because it was based on a brain death diagnosis? Or is he saying that they need to get Israel and parents to NJ, so this will just become a non-issue?
It doesn't make sense that anyone could petition a court in one state to revoke a death certificate issued elsewhere, otherwise Jahi's family could have done that. It also wasn't necessary, since she was treated as a "live person" *without* requiring any revocation of the CA death certificate.
Scarab: As I said above, it seems the family advocates are either completely unaware of the law, or they were deliberately lying to the judge in the Stinson hearings. One of them told the judge she honestly believed Dr. Byrne was a pediatric neurologist when he was engaged to evaluate Israel. I don't buy that at all.
DeleteIf Jahi could petition the NJ court to revoke her CA death certificate and we follow this attorney's absurd logic, she could then return to CA and be considered a living person entitled to a restoration of her MedCal benefits lost due to her death.
DeleteJust writing that lowered my IQ several percentage points.
Speaking of absurd logic you really must read CHO and Rosen's Reply in Support of Motion to Dismiss which Professor Pope added today. Their counsel really takes Dolan to task for his pretzel logic:
http://thaddeuspope.com/images/Reply_in_support_motion_dismiss_06-10-16.pdf
Cleo, her argument was that she truly didn't know what Byrne's medical specialty was yet she engaged his services as a medical specialist. Wouldn't a competent attorney thoroughly vet that kind of thing before going to court?
DeleteShe got her law degree at Trinity which ranks number one as most devout American university. They even beat out Liberty.
It would appear her main criteria in vetting expert witnesses is how devout they are.
It also appears that there are some serious deficits in the reading/writing/proofreading skills of this legal team. Some of the filings reference "Alexander Snyder" instead of the correct name, "Alexandra Snyder." Sure, we can all make a typo. Still, letting documents get filed that not only misstate the attorney's name, but suggest the opposite gender, isn't too professional. Could be that she wasn't paying attention to, or actually didn't understand, the difference between a "pediatric neonatologist" and a "pediatric neurologist."
DeleteYou give her too much credit. A simple google search would've sufficed.
DeleteLet's not fool ourselves, what Ms. Snyder actually meant to say was, Paul Byrne is the only "expert" witness we could get to agree with our exercise in futility.
I'm sure you're correct in that assumption too...just saying that someone who can't seem to pay attention to spelling her own name correctly in court filings probably can't sort out accurate medical information either.
DeleteRemember that we're not exactly seeing the brightest stars in the sky here. This is the same team that had no problem organizing the mission to ship Israel and family off to a secret location in a foreign country, apparently without figuring out how to arrange funding either the extended treatment, or the arrangements to bring them back.
What I find most interesting is the lawyer's suggestion that Shewmon and Byrne cannot be used as experts in this case since they both reject the concept of brain death.
DeleteThe legal wrangling is fascinating but tedious.
Tedious is an understatement. The Jahi McMath case management conference scheduled for June 27th was just continued until October 3 to allow time for the Appellate court to rule on the Petition of Mandate regarding Rosen and CHO's demurrers and the Superior Court to rule on Dr. Herrara's demurrer scheduled for August 2.
DeleteOf course there is still a federal case pending. They have yet to schedule a court date in that one.
I hope eventually the court orders some current testing. It would be interesting to see what a new MRI might show.
DocB, I was looking over some old court filings and found Exhibit D, which was a picture of Jahi's MRA from September of 2014:
http://thaddeuspope.com/images/CBDs_Declaration.pdf
I've seen pictures illustrating the hollow skull phenomenon and other that a couple of squiggles this looks pretty close.
There's a hearing on the motion to dismiss in the federal case on August 4.
DeleteMy favourite part is where Dolan says "I, from a layman' perspective, surely see brain structure."
DeleteIt takes years to learn to read MRIs, and Dolan apparently fancies himself a novice radiologist. Fascinating. I note he also doesn't include a radiologist's reading verifying his "layman's perspective".
Shewmon and Machado differed greatly in their interpretation of the MRI. Machado saw "ribbons at the level of the cortex" while Shewmon saw "vast areas of structurally preserved brain".
DeleteShewmon said her brainstem was severely damaged but found her "cerebral hemispheres to be relatively grossly preserved although by no means normal..."
Yet he couldn't explain "How the auditory signals of the verbal commands pass from her ears to her cerebral hemispheres through the damaged brainstem..."
It seems he uses a lot of qualifiers in his statements yet he feels certain that the brief videos demonstrate voluntary movement even though he can't explain the mechanism by which this is possible.
I, from a layman's perspective, look at the picture and see some kind of stuff inside the skull. Whether or not it serves any functional purpose isn't something I could figure out from one fuzzy scan, since I haven't been trained to interpret these things.
DeleteThere are several references in various court documents to the fact that Jahi's brain matter hasn't yet "liquefied" and totally rotted, so this apparently "proves" that the brain isn't "dead." This assumption conveniently ignores the fact that the extraordinary somatic support given to the body has resulted in lots of *other* body tissue that has been reasonably preserved also...so why would seeing some remnants of intact brain tissue be such a big deal?
I think their argument goes something like this: Some intact brain tissue=some cerebral blood flow=no total necrosis=not technically brain dead.
DeleteShewman figured that since she had preserved brain structure there was never a time she was totally without cerebral blood flow. He guessed that the current radionuclide tests aren't sensitive enough to distinguish low flow from no flow. He goes on to say that low flow means just enough to preserve tissue but not enough to support function.
And therein lies the rub. Tissue without function is pretty meaningless.
They can argue all they want over the semantics of strictly interpreting the UDDA but the fact remains that these patients are still, in the words of Robert Truog legally "dead enough".
An interesting claim for sure but I'm not buying it. If all one has to do is petition the New Jersey court to revoke the death certificate why hasn't that been done for Jahi?
ReplyDeleteI've never heard such a thing have you?
The only reason one can work around that technicality in NJ is due to their religious exemption which PA does not have.
It makes no sense at all. The family advocates do not appear to know what they're talking about. Jahi's mother wants her death certificate revoked in CA and that issue is now before the 9th circuit court of appeals. She want to return to CA and can't do so without getting the death declaration rescinded. It's always been about being able to get Jahi back here without risking medical personnel "killing her." Dolan has used those words in his court filings.
DeleteIsn't the NJ "religious exemption" that allows a rejection of a DDNC meant to apply only to patients who are hospitalized *in* NJ *when* the DDNC is made by the treating physicians? I can't imagine the NJ courts just allowing anyone who doesn't agree with the laws of their home state to come to NJ to have death certificates revoked.
DeleteIf Israel Stinson's parents want to rescind his death certificate they are also going to have to petition the CA courts.
ReplyDeleteCleo, I was going through the Stinson documents trying to find the one containing the statements you mentioned. Although I didn't get to that one I did read where the attorney from the Pacific Justice Institute seems to be arguing that the death certificate is incomplete or somehow not valid because his parents refused to sign the part about disposition of the body.
Dolan argued that Jahi's wasn't valid due to cause of death saying "pending". I watched a video that was linked on one of the RTL sites that was warning people about donating organs, brain death doesn't exist, etc.
Paul Byrne was spreading his usual nonsense and he made the same remark about Jahi's death certificate and the interviewer raised his eyebrows in disbelief like wow, that's incredible. The insinuation, obviously being that the death certificate is invalid therefore proving brain death is "fake death".
Here's the latest fundraising plea from the Life Legal Defense lawyer representing the Stinson family:
ReplyDeletehttp://cal-catholic.com/?p=24411
They need $35,000 by the end of June to air lift him to that special clinic for technology dependent children in PA.
According to her:
Lots of medical professionals have tossed the Hippocratic tradition aside...These people have appointed themselves to determine who is deemed worthy of life — and would rather terminate a life by mistake than expend resources on human they find unworthy to live….
The real reasons may be even more sinister….
◾Remember that the hospital that first tried to declare Israel brain-dead is also the one that failed to treat his asthma attack in a successful fashion. They may have a lot to cover up!
◾Remember also that freshly-dead toddlers have plentiful organs — just like the prenatal babies peddled like meat by Planned Parenthood.
Again, what's the real deal here?
DeleteWhat about that PA statute that was cited in the statement to the court, regarding the prohibition against accepting a patient into hospital care in PA if that person had already been declared dead in another state?
So, what does the statement about the PA facility agreeing to accept Israel really mean? Maybe Dr. McNesby communicated with them by phone or e-mail and agreed to do an *assessment* of Israel, and consult with the family, just to see if he *might* improve a bit under longer-term specialized care. But will St. Christopher's agree to *keep* Israel, if it's determined that he is indeed brain-dead, and not just "technology-dependent," especially if he isn't Medicaid eligible because of the death declaration?
Point being...does it make sense to ask for $35,000 to airlift the family from "wherever" to PA, without even knowing for sure if Israel will be able to get the "care" there that his family is requesting?
We already know that *something* went wrong in the first phase of their "planning" process, since she says that the reason the family is now stranded is because funds that were supposedly committed didn't come through. Will this current crisis be any different?
Judging by the slow trickle of donations on Israel Stinson's GoFundMe page, it will be a long time before another $35,000 is raised. It just passed $25,000 but that wasn't that already spent just getting him to the foreign hospital?
DeleteIt appears that the "comment" option on the GFM page has now disappeared. When I last looked at it a few days ago, there were several persons who expressed willingness to send a donation, but asked that they be given a postal address to do so, since they preferred not to send money online. (I specifically remember that one of those persons was Mary Ann Kreitzer, of the Les Femmes blog). Several others expressed concern about the lack of updates, both on Israel's present condition and the family's future plans. (Maybe that was the reason for the more recent update posted 6 days ago). Just my speculation, but perhaps people interested in helping are having some concerns about whether or not any of this even makes sense, without more information and a longer-term plan.
DeleteAlso, remember that Ms. Snyder, per her recent posting on the California Catholic Daily site, has set up a donation link directly through the Life Legal Defense Foundation, so maybe some money is coming in that way.
Still, the concern I raised in my previous post remains.
I noticed that too about the comment section being gone. Also there hasn't been any updates on the 3 cases ( Israel, Mirranda and Alex) no update on the Facebook page for Alex since they posted his blood isn't clotting.
DeleteMary
They must have done what Jahi McMath's family did, disable comments unless you make a donation. The comments from people who donate are still there. They want to weed out people who ask too many questions without contributing to the cause.
ReplyDeleteFor whatever it's worth, St. Christopher's is a non-sectarian hospital, not a Catholic one. It is the major Pediatric academic teaching hospital of Temple University's Heath system. I would be more than surprised if this hospital accepted a patient such as Stinson.
ReplyDeleteI attended a Catholic medical school (the bishop who confirmed me in 8th grade was on stage at Carnegie Hall when I received my degrees), but we did not learn or practice medicine any differently than a non-sectarian one. Our system consisted of hospitals with "St" in their name as well as county medical centers
I think the families and organizations supporting them in these brain death disputes are less than forthcoming with the facilities they contact regarding possible transfers. They most likely characterize the patients as severely brain injured and vent dependent and conveniently leave out the brain death diagnosis. Once the hospitals realize what they are really dealing with they back out.
DeleteIf what you say is true about St. Christopher's, that they would be unlikely to accept a transfer of a patient who is legally deceased in CA, then it is highly unethical for the Life Legal Defense Foundation to seek donations under false pretenses.
The Stinson family's best bet is trying to find a willing doctor in New Jersey, maybe Jahi's family practice physician, Alieta Eck would accept another patient. They could then establish residency and file for Medicaid benefits such as Jahi McMath's family has done.
This trip to Pennsylvania might be a big dead end, no pun intended.
I totally agree, as stated in my earlier post. There's no purpose served by raising many thousands of dollars for these medical air transfers without having a realistic longer-term plan in place for what's going to happen once the family *arrives.*
DeleteOne recurring theme that we've observed in several of the recent brain death dispute cases that we've followed seems to be the fact that these families, and their attorneys, seem to lack a basic understanding of what hospitals, and doctors, actually can and will provide, in terms of the delivery of care. They are subject to regulations, both at the state level, and through the various policies set by the respective hospital's leadership. You can't just show up at a hospital and demand whatever "treatment" you want, when it's in conflict with those policies and doesn't even make sense medically.
Alex is having an MRI tomorrow morning, according to the FB page. "It is to show how much brain damage he has and the structure of the brain."
ReplyDelete@Cleo. I just read that on the FB page. It didn't say if he had the blood flow test.
DeleteI have been reading online about drowning,there are many deaths each year. If Alex has immediate CPR he had a chance at surviving.
Mary
I wonder who is advising them regarding what testing to have done. As we saw with Jahi structure does not equal function.
ReplyDeleteThere was an update on the FB page for Alex Pierce. They say the results from the MRI were not good. Think they knew that since his EEG showed no brain activity. They state the only test left is the apnea test. Poor boy, too long without CPR being done.
ReplyDeleteMary
I read on Life legal defense Facebook page a link they posted that Alex Pierce will have the apnea test on July 5th. Also in the news link that the Mri showed no blood or brain cells.
DeleteMary
This is the link:
ReplyDeletehttp://www.pe.com/articles/one-807104-doctors-perform.html
If after a month there is still no blood flow and no discernible brain tissue is an apnea test even necessary?
In terms of discerning whether or not Alex's spirit/personhood continues to reside in his body, probably not. But, as his mother said, if the test fails, Alex will then be considered legally dead. Hopefully, this will bring some closure to the family, so that the process of grieving and healing can proceed.
DeleteRegarding other possible pending legal actions, a declaration of death will also determine the direction that will be taken by the family, once those investigations that are now in process through the school district and police department are concluded. IMHO, it is totally unconscionable that no one immediately attempted to administer CPR at a school pool where lifeguards were required to be on duty.
Posted on the "Pray for Alex Pierce" Facebook page today:
Delete"Alex failed the first brain death test. The second one will be on Thursday. Two days left for a miracle."
The family doesn't specifically say that this was the apnea test. Might be that it was, and they asked that it be repeated after a reasonable interval just to see if there might be any change.
I found it kind of odd too. It doesn't take an entire week to do the bedside exam so they must be referring to just the apnea test.
DeleteIn a bid to delay what folks like "Dr." Byrne convinced them was so dangerous, they had what I thought counted as confirmatory tests done first.
There is an update in the Mirranda Lawson case on the Life legal Defence facebookpage. Being supported my life legal attorney. They want to get her on home care with a 12 hour a day nurse. They say Mirrandas blood pressure rises when mom reads "scriptures" from the bible. So they know more then her doctors. No mention if she ever had an MRI done.
ReplyDeleteMary
I meant "by" a life legal attorney. Not my. A typo
DeleteMary
Looks like once again, as with Jahi's and Aden's families, the situation ends up with the Lawsons wanting the the tracheostomy and gastrostomy that will make long-term somatic support easier, while the hospital considers these surgeries as futile medical treatment.
Deletehttp://www.wusa9.com/mb/news/local/virginia/parents-of-va-2-year-old-on-life-support-fight-to-bring-her-home/261017850
Still, without knowing all the specifics of Mirranda's physical condition, I wonder if "taking her home" or placing her in a LTC facility is even an option. According to the hospital spokesperson quoted in the article:
“In the nearly two months Mirranda Lawson has been in the VCU Medical Center pediatric critical care unit, her expert and compassionate medical team has provided around-the- clock, highly-specialized critical care that cannot be given in a home setting,” a hospital spokesperson wrote. “Other agencies and hospitals have reviewed her case and are either not able to support her intensive care needs or they indicated they would not do anything different than what is already being done.”
Apparently this family thinks they can handle half of her daily care with a nurse on duty for only 12 hours per day.
DeleteThe family issued another update regarding Israel Stinson. He's still at the foreign hospital and $15,000 shy of paying for the air ambulance. Supposedly they still have a facility which is offering to continue his "treatment".
ReplyDeleteThey said he is still gaining weight, moving more and taking breaths over the vent. His folks believe it's only a matter of time before he opens his eyes.
With the update came another flurry of donations to the GoFundMe account:
https://www.gofundme.com/saveisraelstinson
Another "update" on Israel Stinson:
ReplyDeletehttps://www.gofundme.com/saveisraelstinson
They need another $15,000 for an air ambulance and just repeat the same claims made in the last update along with the same picture.
I read that last night. I am thinking how can two hospitals and I think three doctors here say he was brain dead and now he is not brain dead? If he gets to this hospital will be just be on somatic support for years like poor Jahi?
DeleteMary
I'm thinking they never told this new doctor/facility in PA that he was diagnosed as brain dead by two different US hospitals.
ReplyDeleteI still don't see how they get around the fact he was issued a death certificate in CA. In an earlier comment doctorem922 said:
"For whatever it's worth, St. Christopher's is a non-sectarian hospital, not a Catholic one. It is the major Pediatric academic teaching hospital of Temple University's Heath system. I would be more than surprised if this hospital accepted a patient such as Stinson."
If they manage to raise the money and transfer him back to the US but have misrepresented his condition and are denied care as a result then what will they do?
I've been wondering the same thing. Just because someone on the family's legal/advocacy team *talked to* a doctor on staff doesn't automatically guarantee that they can just land there, check in, and get whatever "treatment" they desire.
DeleteBesides the obvious legal and policy issues we've already identified (the CA death declaration, and the request for what may be considered futile medical procedures if performed on the body of a deceased person) there's the practical aspect too...the *cost* of ICU-level care. Without having established residency in PA, I don't see how the family could arrange Medicaid coverage for Israel.
Seems on Israel's go fund me page they have a hospital set to take care off him. All they need is more money to get him there. Mom said the EEG he had said not brain dead. Wonder if he still has the brain stem herniation?
DeleteOn Alex Pierce face book page they said he failed the brain dead test and it will be repeated on Thursday.
Mary
The Pierce family has allowed Alex's body to pass. May he rest in peace.
ReplyDeletehttps://www.facebook.com/prayforalexpierce/
condolences to the family. nobody should have to bury their child.
DeleteSending my positive thoughts and prayers to the family too, as they begin the process of grieving, healing, and celebrating Alex's life.
DeleteUnlike some of the other families who seem to be stuck in denial, I honestly think that they just wanted to "be sure" that they weren't giving up too soon.
I was sad to read this on Facebook. They just wanted to be 100% sure. I still wonder what the outcome would've been if someone did CPR on this poor child.
DeleteMary
According to an update:
ReplyDelete"An air ambulance return trip to the U.S. was scheduled Friday morning for 2-year-old Israel Stinson, “but there were administrative hiccups with the (U.S.) hospital,” said Alexandra Snyder, an attorney with the Life Legal Justice Foundation, one of two nonprofit legal groups handling Israel’s case."
They hope to reschedule for next week even though they have yet to take care of the little matter of Israel's CA death certificate:
"His attorneys are seeking a jury trial in the U.S. Eastern District of California federal court to overturn the child’s death certificate, which was signed April 14 at Kaiser Permanente Roseville Medical Center. In court documents, the attorneys state that the death certificate was issued prematurely, given his current condition."
It says Israel has been in a Central American hospital. From the description of the US hospital it appears as though they are talking about the one affiliated with St. Christopher's in Philadelphia.
I think the organizations helping this family are putting the cart before the horse again trying to get him back in this country while he still has a legal death certificate. Waiting on a jury trial could take a couple or few years as we've seen with Jahi's case which is still winding its way through the courts.
Read more here: http://www.sacbee.com/news/local/health-and-medicine/article88599767.html#storylink=cpy
http://www.sacbee.com/news/local/health-and-medicine/article88599767.html
"Administrative hiccups" is that what they are calling death certificates these days?
DeleteWhile the death certificate itself is a major issue, that may not be the only "administrative hiccup" in play here.
DeleteThe hospital administration may have, since that initial brief conversation with just one doctor, gotten some additional pertinent information about Israel's actual medical condition. Israel isn't just a "technology-dependent" child with special needs, like a child who might require full-time use of supplemental oxygen, daily dialysis, use of a motorized wheelchair, or any number of other medical devices that can support a person with an otherwise life-limiting illness or disability. Whether or not anyone chooses to "recognize" the death certificate, the fact remains that he has been determined by two sets of qualified doctors, at two different hospitals, to have suffered irrecoverable brain damage. Medical maintenance of his body will require the equivalent of full-time, permanent ICU-level care. The hospital's policies, which are, assumably, focused on treating the living, may make the administration reluctant to allow their facility to be used as a permanent long-term-care facility to accommodate a family's personal preference.
For that reason, they may be reluctant to accept Israel because they don't want to be put into a situation in which *they* will end up in a legal battle if they allow Israel to be admitted, their own doctors end up concurring with the previous DDNC, and then the family objects to *their* decision to discontinue futile medical care.
He has been found by two sets of qualified doctors at two different hospitals, to be dead. Not brain damaged, not technology dependent, dead.
DeleteThe following is actually a part of their court petition:
ReplyDeleteAccording to the July 1 filing, the pending death certificate “causes actual injury,” including the loss of medical insurance coverage and government benefits for Israel and his family.
The filing adds: “In the future, he will be unable to enroll in school, meet the identity requirements for employment, marry, obtain a driver license, register to vote, qualify for a credit card, or secure a home loan if he remains officially deceased.”
Unbelievable.
Read more here: http://www.sacbee.com/news/local/health-and-medicine/article88599767.html#storylink=cpy
well, dang it, and I've been looking for an employee that lays in a hospital bed on a ventilator 24 hours a day.
DeleteThe legal minds behind the Stinson case make Dolan's arguments look reasonable, as in brain death is merely a disability.
DeleteProfessor Pope posted an update on the Mirranda Grace Lawson case along with a link to recent court filings:
ReplyDeletehttp://medicalfutility.blogspot.com/2016/07/two-brain-death-cases-consent-for-apnea.html
The VCU health system is asking the court to allow them to conduct an apnea test now instead of waiting for the VA Supreme Court to schedule a hearing.
Their argument:
VCU Medical Center's Pediatric Intensive Care Unit, or PICU, has just 14 beds and providing care for Mirranda Lawson costs nearly $10,000 a day, the hospital says.
"Having one of the PICU beds and all the human resources that entails, occupied by Mirranda, who has likely been dead for weeks, jeopardizes the care of critically ill children that VCU Health System is being forced to turn away."
I'm glad that *someone* is finally raising this issue. Resources are finite, and hospitals exist to serve *living* patients.
DeleteIf everyone who chose to believe that their brain-dead family member was still "alive" took them home and cared for them as they saw fit, at their own expense, I wouldn't be so troubled by it. Lots of people do things that I personally wouldn't choose to do, but as long as their choices don't interfere with *my* life, or the public good of society as a whole, I let it be.
But that isn't happening in these brain death dispute cases. Unless families are multimillionaires, it's just not possible to continue to deliver the somatic support they demand without using public resources. That becomes a problem for *all* of us.
There is a new update on the Go Fund Me for Mirranda Grace. To me is sounds like it is written by the same person that wrote Israel's. Probably the lawyer at Life Legal Defence.
ReplyDeleteI also follow the Facebook page for baby Knox Stine. The mother posts how hard it is to take care of her vent depentant baby. He stopped breathing at 2months of age, had CPR. He passed the brain death test because he takes 1-2 breaths a minute. They know he will never wake up.
These cases are so very sad.
Mary
From Thaddeus Pope's Futility Blog, some of the allegations in the amended complaint filed in the Israel Stinson matter. http://medicalfutility.blogspot.com/2016/07/california-attack-on-brain-death-law.html
ReplyDeleteThey make some interesting arguments regarding CUDDA and UDDA by inference. Also, as in the McMath case they offer an alternative pleading just in case:
ReplyDelete"The enactment and enforcement of CUDDA deprives Israel Stinson of his right to life without due process of law. The Act defines death and requires that physicians declare a person as dead when the conditions found in the definition are met. But because a patient is declared dead by California does not make the patient become biologically dead. Death is the cessation of biological functioning. By
State action, the Act requires a declaration that a person is deceased at a point in time earlier than the cessation of biological functioning. This is what happened to Israel Stinson. Such a premature official certification of death deprives an
individual of the liberty interest in life in a manner that is inconsistent with the Fifth
and Fourteenth Amendments.
Plaintiff is informed and believes and thereon alleges that the definition of death is fallacious.
In the alternative, Plaintiff alleges that the definition of death under CUDDA is correct but that Ms. Fonseca’s child was misdiagnosed as being brain
dead when he was not."
I would be very interested in DocB's opinion regarding their medical claims. Specifically these ones:
Ms. Fonseca has knowledge of other patients who had been diagnosed as brain dead, using the same criteria as in her son’s case. In some of those cases, where the decision makers were encouraged to consent to the withdrawal of life support, the patients emerged from legal brain death to where they had cognitive ability and some even fully recovering. Such cases are fully medically documented.
An electroencephalogram (“EEG”) was performed on the child. The EEG revealed that he has brain waves. Physicians have informed the parents that he is not dead, but is in a persistent vegetative state.
Ms. Fonseca is a devout Christian and believes in the
healing power of God. She also believes that life does not end until the cessation of biological functioning.
Notwithstanding her belief in the "healing power of God", if the legal definition of death were actually amended to read as she suggests, "the cessation of biological functioning", what exactly would this mean medically and scientifically speaking?
http://www.thaddeuspope.com/images/Fonseca_v_Smith_ED_Cal_July_1,_2016_2d_am_compl.pdf
I thought if a person was in a persistent vegetative state they were unaware of their surroundings. Did not respond to verbal stimuli. But the mom states he responds to music and voice.
DeleteI have read they move and make sounds and have sleep and wake cycles. Just not aware of anything.
Mary
What's conspicuous by its absence from this filing is any actual *statement* from any of the medical professionals who treated Israel in that hospital "outside the country." Sure, it's likely that a doctor practicing someplace in Central America or wherever might not be licensed to practice in CA or anywhere else in the USA. So, she/he may not be *legally* qualified as a medical expert in CA.
DeleteStill, if plaintiffs want to tell the court "this child was wrongfully pronounced dead, he's actually gotten much better since leaving Kaiser, and doctors say he's not dead but in a persistent vegetative state," they need to present some *evidence* besides what mom says she's noticed. Something. A declaration from one of the doctors. A summary of test results. Something. Even Jahi's family's attorneys did *that* much.
We keep hearing that the family has to keep their location and the identity of the foreign medical facility confidential for safety reasons. But they need to give the court something to consider. If they request confidentiality, the names of the doctors and the facility could be redacted before the filing is publicly posted.
The named defendant in the action is the CA Director of Public Health. As an administrator, she doesn't "decide" whether a person is dead or alive...she relies on doctors actually involved with the patient to figure that out. Why would the plaintiffs think she could/would order a death certificate expunged, without *any* actual medical evidence being presented?
And, as with Jahi, we have the Catch-22 dynamic of no one on behalf of the CA courts being able to personally examine the subject to actually assess his present condition.
So...what's the real legal argument here? Seems like the plaintiffs are asking the state of CA to revoke the death certificate just because they don't happen to agree with it. No attempt at presenting any kind of meaningful evidence is being made.
@Mary - re: Israel's mom reports of responsiveness...hard to say whether this is any different than what's been reported in Jahi's case. We need to remember that a grieving mom who's probably spending most of her waking hours at her child's bedside is *not* objective.
DeleteLife Legal Defense might want to rethink their attempt to get Israel Stinson admitted to St. Christopher's Hospital's Center for Children and Youth with Special Health Care Needs:
ReplyDeletehttps://www.facebook.com/notes/st-christophers-hospital-for-children/st-christophers-recognized-for-organ-donation-work/10150390020123403
The VA Supreme Court denied VCU's petition to expedite the appeals process and allow them to perform an immediate apnea test on the toddler who inhaled a popcorn kernel. No reason was given by the court.
ReplyDeleteVCU must continue providing Mirranda Grace Lawson ICU level somatic support. The next hearing isn't until sometime in September.
http://wric.com/2016/07/11/supreme-court-denies-vcus-bid-to-expedite-appeals-process-in-mirranda-grace-case/
Very confounding and disappointing. The hospital wasn't even asking to be allowed to discontinue somatic support; they just wanted to perform the apnea test to determine *if* the DDNC would be the correct conclusion.
ReplyDeleteI understand that the family is trying to avoid the apnea test because they fear the results, and finalization of the DDNC would provide the hospital with a basis for making that next move. But what they're *not* considering is the possibility that the apnea test *may* turn out like the one given to Knox Stine, or the reports (admittedly unsubstantiated, for now) from Israel Stinson's mother. In these cases, each was able to take a *few* breaths without the vent, though vent support is still essential for proper oxygenation. This isn't considered full brain death, but PVS, so Mirranda might still be "alive" and therefore eligible to receive the tracheostomy and gastrostomy, and related nutritional and medical support that could perhaps improve her body's condition a bit.
By refusing to allow the hospital to provide the testing required to accurately assess Mirranda's true condition, her family may be missing the opportunity to achieve what they *really* want (home care with skilled nursing support).