Brain death: Hot nose sign. This occurs because there is no blood flow to the internal carotid artery, blood flow is increased to the nasal region, which is supplied by the external carotid. Please note: I do not know if Jahi's imaging scans have a hot nose sign. I have included this image as an illustration of brain death. Note no blood flow to the cerebral cortex.
Prior & New Stories:
01/01/14 Jahi's Legacy - by CaliGirl9
01/01/14 Jahi's Legacy - by CaliGirl9
UPDATE 1/5/14: 10PM
The San Jose Mercury News has posted a timeline of events.
UPDATE 1/5/14: 9:15 PM
The San Jose Mercury News reports:
Jahi McMath was quickly and quietly moved from Children's Hospital of Oakland Sunday evening, the hospital confirmed.snip
David Durand, chief of pediatrics at the hospital, sent a news release just after 8:30 p.m. confirming she was moved.
UPDATE 1/5/14: HIPPA - US Dept. Health Website
"A short while ago, the body of JahiMcMath was released by Children's Hospital & Research Center Oakland to the coroner," he wrote. "The coroner has released her body to the custody of her mother, Latasha Winkfield, as per court order, for a destination unknown.
Previous story: Jahi's Legacy
Latest story: Jahi McMath: Merely Dead, or Really Most Sincerely Dead?
The family of brain-dead/brain-stem dead teenager Jahi McMath had their day in court. I’ve been enjoying local media reports that characterize the decision as a “victory” for the family. My reading comprehension tells me that CHO now doesn’t “need” or require speaking to the transporting or receiving facility. All they need to do is show up, and the hospital will let their critical care team move Jahi from a bed to a gurney. Jahi’s “critical care staff” will disconnect CHO’s ventilator from her endotracheal tube and attach to theirs, take her IVs or central lines as they are, her urinary catheter, EKG leads to their own monitor, and pulse oximeter finger sensor. CHO will give a report on her conditions, copy of the medical treatments; go over most recent labs, and that’s that. CHO’s responsibility ends and it is now on the mother of the deceased teen.
CHO is NOT being compelled by the court to insert a tracheostomy or a gastric feeding tube, and it is not compelled to let an outside critical care do it. In other words, they make take the body and whatever is attached to the body, save the devices that belong to the hospital.
The family’s lawyer, who shall go unnamed because I do not want to contribute to his publicity, makes the dual claim that the family is still looking for a physician to do the tracheotomy and gastrostomy, and then states there are unnamed doctors willing to do the procedures, and then concludes with the remark that the procedures will not be done in the critical care ambulance that supposedly will pick up Jahi’s remains.
Anticipating for the absurd here, because this case has told me anything can happen. The medical devices necessary—a ventilator with oxygen, cardiac monitor, probably IV pump—can be rented, with a doctor’s prescription. I seriously doubt any reputable doctor would write such a ‘script. Additionally, renting medical devices is very pricey, and because there is no insurance, any medical supply will no doubt ask for lots of cash up front. She will need IV fluids, a peripheral IV catheter changed at least weekly, if not more often, and if the vasopressin is still in use, a prescription needs to be written and amounts prescribed.
The temporary restraining order in effect until 5 p.m. January 7 is still in place and according to Superior Court Judge Grillo will not be renewed or revised.
In other words, the family has until Tuesday, January 7 at 5 p.m. to move the body.
In other words, the family has until Tuesday, January 7 at 5 p.m. to move the body.
If the New Jersey “facility” is real, there’s a huge storm heading to the Northeastern United States. I’m pretty sure a medevac jet will not risk a crew by flying into that sort of weather on a non-emergency flight of a deceased body.
In the hospital’s attorney’s brief, the statement was made that CHO staff is “demoralized” by the court’s forcing them to care for a dead girl, and that the family’s demanding of the surgical procedures “grotesque and unprecedented.”
Doing my usual perusal of the Internet and message boards, it was revealed in a television report (a local SF station) by the teen’s uncle that she’d had two other surgeries to correct sleep apnea, and that she had nocturnal enuresis (bedwetting) because of the obstructive apnea.
Message board comments have said family court documents reveal that Jahi’s body has diabetes insipidus, which is a known complication of brain death.
There are also remarks that Jahi’s mother, grandmother and stepfather all suctioned her oropharynx when bleeding started, before summoning an ICU nurse. Hearsay, yes, but remember, families and visitors of other patients are not bound to silence by HIPAA. Did they worsen the bleeding by too-aggressive suctioning?
The nurses’ notes are going to be critical. Any student RNs out there, learn from this case now, before it happens to you.
The nurses’ notes are going to be critical. Any student RNs out there, learn from this case now, before it happens to you.
For those asking how long a body can be sustained on a ventilator, I am trying to find bona-fide medical data. Most of the standardized research is on baboons and pigs, and it is hard to find a study where every body received the same treatments at code, and are receiving the same medications. I did leave a couple of long comments with my previous post. Suffice it to say, a brain-dead body identified as an organ donor receives a great deal of treatment, because of hormonal and electrolyte imbalances. The pituitary gland provides feedback for all of the hormone-producing body parts such as the thyroid, pancreas and adrenal glands. Those electrolyte imbalances result in cardiac failure. Jahi’s body is not being treated to preserve the organs, and the courts have not ordered the hospital to treat her body as such. I encourage any critical care RNs (KZ where are you?) or physicians who would like to explain the physiology. My brain is sleep-deprived and it’s not disseminating information very well. I am honestly having nightmares over those Lazarus effect videos, and not much grosses me out.
As far as I can tell, there is still a federal court hearing on Tuesday regarding Jahi’s civil rights and ADA rights being violated. I have not heard of results of federal mediation results as I write this.
I will continue to look for the completed briefs, but in the meantime, the new agreement is posted here.
Thank you for your intelligent, (for the most part) adult commentary. T&T readers are the best!
Twitter Pic of alleged agreement between family and hospital
CBS San Francisco - Death Certificate Issued for Jahi McMath
CNN Video - Legal Battle over Jahi McMath
San Francisco Gate - Hospital Agrees to let Family take Jahi
NBC Bay Area - Family Cleared to take Teen from Hospital
Thank you for your intelligent, (for the most part) adult commentary. T&T readers are the best!
Twitter Pic of alleged agreement between family and hospital
CBS San Francisco - Death Certificate Issued for Jahi McMath
CNN Video - Legal Battle over Jahi McMath
San Francisco Gate - Hospital Agrees to let Family take Jahi
NBC Bay Area - Family Cleared to take Teen from Hospital
Posts
159 comments:
Thank you for this excellent post. Could you tell me the link to the hospital's brief on this? I have been following the court filings here but did not see the part you quote below:
http://www.thaddeuspope.com/futilitycases.html
In the hospital’s attorney’s brief, the statement was made that CHO staff is “demoralized” by the court’s forcing them to care for a dead girl, and that the family’s demanding of the surgical procedures “grotesque and unprecedented.”
Thank you!
CaliGirl9 is quite tired tonight. I'm sure she will answer all questions in the morning after she's had some rest.
Hi Anon @10:22
Before I go to bed, I'll answer your question. I have not yet found that brief with the hospital's attorney's claim. The statements were part of a newspaper story, either from SFGate or InsideBayArea. Generally I am not keeping local links because the coverage quality has been very poor, with reporters failing to ask the hard questions, and taking the family and attorney's statements as be-all, end-all facts. Thus far, none of the claims of a facility ready to take Jahi's body is other than the anecdotal things in the press and as claimed by the "facility" in NY.
If my brain kicks back in, I will try to write up something about what happens to a brain dead body. It's complex and gross... and it still won't answer the question "How long can a brain-dead body still function before it stops on its own."
Thank you and good night!
I think it's really hard to predict exactly how long it will take for a body to "die". As a nurse I see people die all the time and it's different for everyone. They all pick their own time in a manner of speaking. However, metabolically the kidneys start to shut down, toxins are no longer excreted from the blood, urine production decreases. The fluids are still there, as we all know things take the path of least resistance. In osmosis fluids move in and out of cells. When the balance is off everything is off. Levels too low create others that are too high. Some of the common things seen include puffiness and swelling of the limbs, which can lead to bedsores from pressure points. Oozing skin from no expansion room of the tissue, Congestive heart failure as the body can't remove the excess fluid. As the body works harder to breath under the strain of the fluid, the metabolism gets further acidotic (I belive) We see neck veins distend, the patiens sweats profusely from all their respiratory effort, eventually the balance gets so off if leads to cardiac arrythmias, which eventually leads to death. I have seen patients die quickly at this point I have also seen them take a week. It truly is an individual situation. So many factors to take in. For a truly brain dead body to die without intervention i.e.. respirator, I can't see it taking more than a few hours hours at the very outmost tops. More like minutes realistically, without breathing expelling CO2, it builds u quickly and the heart may have it's own electrical charge but at that point it's not a true beat. ZIt may have a little electrical conductivity, but not enough to actually generate a beat just a little fibrillation.
I really wish you could post about the cost this judge has just laid on society for setting this dangerous precedence of allowing a medically-ignorant parent demand a dead body remain on life support indefinitely. If this girl had been White, this never would have happened because there never would have been the threat of a riot by a PC protected group at the hospital. It is a sad day for decent society that the judge did not demand the vent be shut off immediately.
Very insightful blog and answers. Thank you and get some rest, we need you ;)
Thank you for your intelligent writing about this case. I hope you will continue to update. I also wanted to let you know about an interesting interview I saw with Jahi's Grandmother Sandra Chatman. I don't know if you allow links, so I will say that it is at YouTube and titled: Grandma: Just pray for Jahi, Please. At 1:43 into the video, Ms. Chatman says: "...Jahi and I were both trying to suction, out of, you know...Jahi was spitting the blood out." Basically, she admitted on video that she and Jahi were using the suctioning device and then tried cover what she said. This unauthorized use certainly could have caused the wounds to reopen and bleed out, in my opinion. Either way, it is tragic that this little girl has lost her life.
Thank you for the informative update. In practice pts that are transferred to long term acute care with pegs and vents can last an indeterminate amount of time. The causes of body death come from infections from bed sores that will not heal. Sepsis that wont respond to usual antibiotics.
Brain death is brain death. I do not understand this family and their inability to grasp this. Is this out of guilt or a mis guided sense of love and care? They need help navigating these emotions. Apparently the press, attorneys ets have fed into some sort of false hope and feeling that fighting her body death = love for this girl. Maybe the family just wants their 15 minutes of fame and her name in the press as a memorial? Kind of like a Munchausen's By Proxy situation. I work with families navigating this situation all the time. There is something not quite right with their reactions. More than normal grief or they are delaying their grief by staying in the anger/denial phase. Just my opinon, Betsy. -Ginger
Since she has been declared dead by the coroner, no insurance company nor Medi-Cal will continue paying for care. So, no facility will accept her. Tuesday, the family will be asking the courts for another restraining order. She'll have been brain dead for a month by then. Hopefully, no court will intercede. The family should use the donations they received to pay for her a burial.
Here is some data on "chronic" brain death: http://www.ncbi.nlm.nih.gov/pubmed/9855499
Thank you for the informative articles...this perspective has been lacking from mainstream coverage. Thank you Thank you Thank you!
OK - this is something that confused me - maybe it's just bad wording? (That would be shocking!)
"The Alameda County Coroner will have to sign a document accepting Jahi's body before she is moved from Children's . "
http://www.cbsnews.com/news/jahi-mcmaths-family-hospital-reach-agreement-to-move-teens-body/
What about the Coroner? What is his / her legal obligation in all this? "Accepting" a body by a Coroner, means to me - an average citizen - that the Coroner will cart it off to the morgue! What is going on?? Or possibly, just bad reporting?????
simply thank you for the information and the constructive, neutral tone with which it is conveyed.
Thanks for the update.
I know how much research goes into your work here and have the utmost respect for what you post.
Thank you for educating me. This is such a medical quagmire. CHO does everything by the rules and, so far, the judges have agreed.
My prayer is that Jahi's mother can come to an understanding of the situation. Unfortunately, I think she will have to see her daughter deteriorate day by day and will learn the hard way. I doubt anyone close to her has spelled it out in the way you have due to her fragile emotional condition and their own agenda.
To Anonymous above me here: Thanks for your input. To my unscientific bent, I appreciate any added information.
CaliGirl, I await your next post and hope you don't wear yourself down. Make sure to get rest!
@CaliGirl9 appreciate the info you have provided here. Am curious as to your take on this opinion piece,
http://www.cnn.com/2014/01/02/opinion/veatch-defining-death/index.html
Thanks all for the info. Caligirl9 I appreciate you laying it out in understandable terms. A bad situation all around.
ugh
Yet Another excellent article from CaliGirl on a heartbreaking case. One has to wonder just how deteriorated that poor child's remains will have to be before her mother accepts the truth.
Thanks for the great articles. They were very informative.
Rather than surgery, Jahi needed to be on some type of CPAP (continuous positive air pressure) machine. It is the simplest, easiest and surest correction for obstructive sleep apnea (OSA).
I have severe OSA, which means that I stop breathing for at least 20 seconds at least 30 times an hour. To control my OSA, I am on an Auto BiPAP machine. I'll be honest, it took me 4+ months to get used to the mask. But the key was getting a sleep technician that got me fitted with the right mask. Don't let them bully you into their preferred mask.
Finding the right mask is not easy. It is partially determined by your face & head shape and whether or not you are a mouth breather. But with trial & error, it can be done. I am claustrophobic and all those big masks just freaked me out. Luckily, I am not a mouth breather, so I use a mask type called nasal pillows.
No, the mask is not pretty. Yes, the machine & mask are inconvenient. When you travel, you have to take them along, and as your carry-on if you fly. If you like to camp, you need an expensive battery to run the thing. But, I GET A GREAT NIGHTS SLEEP! This is so important to your overall well being. Now, I can't sleep without the thing.
Keep up your great articles.
As a medical professional specializing in critical care I wanted to write and contribute to this and CaliGirl9's previous piece about Jahi's situation and the sequelae of brain death. Both pieces are very informative and have collated a lot of information in an unemotional way which is helpful for those trying to understand the timeline of events. There are a couple of clinical inaccuracies in both pieces and also in some of the comments that have been stated to be by RNs. I wonder if perhaps your specialities are not emergency medicine or intensive care. Some of the descriptions of disseminated intravascular coagulation, progressive 'patient swelling', oozing skin, liquifying internal organs (apart from the brain which does in fact necrose and become liquid after approximately seven days without blood flow), sweating from respiratory effort (this cannot happen in a brain dead person because they are not breathing for themselves) and other descriptions of Jahi's body decomposing are inaccurate.
Firstly, without a documented medical history the only thing we can truly know about Jahi's background with respect to this incident is that she was obese and suffered from obstructive sleep apnoea. This in itself is no minor medical condition especially in someone Jahi's age. First line management for obstructive sleep apnoea is always weight loss and trial of non-invasive positive pressure ventilation. Untreated obstructive sleep apnoea causes progressive heart complications and eventual heart failure. If Jahi had OSA for some time (which is plausible given that she had two previous surgeries to address it) then her heart could already have been affected, making her more susceptible to further cardiac problems for example in the setting of cardiac arrest.
I don't think that it is helpful to add in possible history of asthma, diabetes mellitus and possible bleeding disorder without clear evidence of these as it only makes the article seem to be biased against Jahi and her family. Even if Jahi's family have made mention of these other illnesses there is no way of confirming them as diagnoses without access to Jahi's medical record and I have encountered many people who don't understand their own medical histories very well. Jahi might have suffered from 'pre-diabetes' or have had problems with wheeze in the past that was misinterpreted by her family. So it is best to simply stick to the obvious and documented facts.
Secondly, I just wanted to correct the description of Vasopressin - it is a medication used to increase blood pressure in patients with low blood pressure but it is not used to restart the heart or for cardiac arrhythmias. Jahi is most certainly on some type of medication to bring her blood pressure up because within a week of whole brain death the patient's blood pressure drops significantly as the heart and blood vessels are no longer receiving any hormonal input from the pituitary gland in the brain. Without this auto regulation the body is unable to maintain blood flow and therefore perfusion to important organ systems in the body, specifically the kidneys, liver, lungs and endocrine system. As long as blood flow is maintained to these organs they continue to function relatively normally although eventually the lack of hormones begins to take effect.
- Artefact
Diabetes Insipidus is a condition completely unrelated to Diabetes Mellitus and is a result of loss of hormonal input from Jahi's hypothalamus and pituitary gland (as the these are both situated in the brain and have lost blood supply together with the rest of her brain it is no longer able to release appropriate hormones to Jahi's endocrine system and her kidneys). It results in her kidneys not re absorbing water properly and therefore allowing her to urinate large volumes of very dilute urine. Without replacement with intravenous fluids Jahi would dehydrate very quickly. This also indicates that Jahi is receiving IV fluids to treat her DI and also as maintenance for her inability to take in food and fluids orally.
Jahi must also have invasive monitoring devices present to allow regular measurement of her blood pressure and regular blood tests to monitor her electrolytes and organ function. This is usually performed via an intra-arterial catheter that is placed into an artery (usually the radial artery in the wrist) and allows her blood pressure medication to be titrated minute by minute to maintain her blood pressure and organ perfusion. The medication used to maintain her blood pressure is a dangerous medication that has the potential to cause damage to peripheral tissues so it must be infused through a 'long line' which is an intravenous catheter placed in a large central vein - either the subclavian vein under the clavicle or the internal jugular vein in the neck. She will also have an intra-urinary catheter in situ which is placed in her bladder to drain urine and allow her fluid balance to be monitored and replaced appropriately.
These are the most basic 'lines' that are inserted in a resuscitation situation and maintained in ICU to allow ongoing monitoring and maintenance medications and fluids. Jahi would also have her oxygen saturations and heart rate monitored continuously and blood gases to monitor her respiratory gas exchange intermittently. The question of Jahi's airway is a challenging one. She has had an endotracheal tube since the day of her initial cardiac arrest and it is located in an area that underwent surgery meaning those tissues are already injured and inflamed even without a plastic tube putting pressure on them. Once an endotracheal tube has been in situ for more than 15 days it begins to cause pressure sores on the vocal cords. If these tissues are already inflamed from surgery then the likelihood of those sores is increased because of the swelling and decreased blood supply to allow adequate healing. Even if Jahi's family find a doctor willing to convert her endotracheal tube to a tracheostomy (which is when the tube is inserted directly into the trachea and sits underneath the vocal cord thereby no longer irritating them), the procedure comes with major risks in the setting of a difficult airway, laryngeal inflammation and further exposure to lung infection for Jahi.
Finally I wanted to address the issue of what happens to a body once the brain has lost circulation. We now know that Jahi is in fact brain dead as certified by at least five doctors. Whole brain death includes brain stem death and is a result of loss of blood circulation to the brain as previously described by CaliGirl9. In ICU we do not routinely deal with patients maintained on ventilators for prolonged periods once a family comes to grips with the diagnosis of brain death. I find that a brain blood flow scan is usually the most convincing for my patients as they can see definitively that the brain is not receiving blood and is obviously dead. The other clinical tests that we do to confirm brain death are part of the legal and medical criteria to make the diagnosis but families don't always understand what we are doing, what it all means or what we are looking for. The apnoea test is also very helpful for people to understand the lack of functions with brain death. Spinal cord reflexes may persist and are explained.
- Artefact
I get that it is IMPLIED that the Coroner is to act as a "go-between" and sign off on this transfer. But is the Coroner legally impelled to do this?
If a patient and family wish for organ donation there are strict procedures that we follow to preserve organ system functions. The most important of these is to maintain blood pressure and keeping the lungs well oxygenated and well ventilated so that all organs are optimized. Organ harvest is conducted as soon as possible once the family has said their goodbyes and many family members are permitted to accompany the patient right up to the theatre doors. If the patient is not an organ donor then efforts to maintain blood pressure are not as rigorous because doing so does still out the body under stress and carries the risk of causing ischaemia to the GIT system. The patient's body is maintained passively with IV fluids and and minimal invasive treatments or procedures until we turn off the ventilator with the family (unless they choose not to be present). In every unit that I have worked in we always handle both of these situations with as much respect as possible for the families.
I have been involved in a single case where a pregnant female patient with a catastrophic intracerebral bleed was maintained in ICU until her baby had achieved foetal lung maturity and could be delivered with less neonatal complications. We did a comprehensive literature review at the time to anticipate complications for the patient and to make appropriate clinical decisions for her. Her management was very intensive and very expensive. The longest that a pregnant female body has been maintained with whole brain death was 135 days although there was a case of a patient lasting until 185 days but on further reading she turned out to be in a PVS rather than having brain death. Pregnant women have been the most extensively studied because intensive somatic therapy regimens have been devised to optimize the outcomes of the babies. There are some publicly available journal articles on PubMed for anyone who is interested.
The most common problems encountered are:
1. thermovariability - the body regulates its temperature in areas in the brain and when the brain dies it is no longer able to regulate the core temperature of the body. Our patient experienced cyclical fevers that were difficult to control.
2. hormone dysregulation - I have previously written about this above but essentially it results in electrolyte imbalances, cardiac instability and fluid imbalances.
3. sepsis - patients who cannot move themselves and who require several invasive 'lines' for monitoring and treatment are at very high risk of bed sores, line infection and Ventilator Acquired Pneumonia that occurs in any long-term ventilated patient even when they are alive. VAP is very serious and required daily respiratory physiotherapy to prevent. Bed sores become increasingly difficult to prevent even with vigilant nursing.
4. hypotension/cardiac failure - even when using all of the right medications at some point most patients develop dysrhythmias and dangerous swings in blood pressure. In our patient's case we eventually opted for a c-section for her baby as her blood pressure became increasingly difficult to control and we were concerned about uterine perfusion and foetal compromise.
When Jahi finally succumbs to cardiac death it will not be a painful death for her. If it happens sooner rather than later she may look no different. Her body isn't a corpse because her organ systems are still functioning and even probably desperately trying to compensate for the lack of neuro-endocrine input. If Jahi is maintained for several months it will be a very expensive and futile exercise with round the clock nursing, physiotherapy and dietetics work. We at least knew the reason that we were maintaining our patient and had a very good outcome for the baby but in this situation I do not see the same.
- Artefact
Sprocket here.
I just want to add that there are several excellent comments pending, some appearing to come from knowledgeable medical professionals.
T&T is not ignoring your thoughtful and informative contributions. Just waiting for CaliGirl9 to get some much needed rest and has a chance to review them before a decision is made on approving them.
Thank you everyone for your comments and patience.
One more comment: blaming the parents for the obesity, without full knowledge of the child's medical condition isn't correct either. We have NO idea if they tried to address her weight and as a 13 year old child, did not comply, snuck food, etc. I think, as a country, we need to look at obesity, childhood and adult, as an illness as well. While I'm within the parameters of normal weight for my height and age, I've noticed how many people and children could be considered morbidly obese or just regular obese when out to some of the popular restaurant chains. Frightening scarey and medical dramas and care waiting to happen.
Sorry for my slight digression, but while I believe the family has gone down the wrong path in their grief and their attorney should be disbarred and ashamed of himself, folks blaming the parents for the obesity alone, is incorrect. I'm sure there's enough blame, regret and grief they are feeling and maybe Jahi's weight was a contributory factor in this sad saga, that isn't ending well.
Again, not defending the family, at all. Just focusing on the facts and this blogger needs to be commended for the great job she is doing with the facts. Many major news outlets aren't even properly investigating this story or even reading the court docs. If they did, they couldn't say she was in for a routine tonsillectomy.
I believe under the law that the hospital can only release a dead body to the coroner or a funeral home or to a college. So, the hospital complies by releasing the body to the the coroner who will then release it to the transport team.
Bronzi,
Regardless of what Jahi's medical file would reveal, it is my own personal opinion that a parent is responsible for taking all steps necessary to improve the health of an obese child. Especially when that obesity is a factor in a health issue.
CaliGirl9 stated in her first article that the information about Jahi taking the bus to get a snicker-doodle came from a media news story.
It's my understanding from this post, that the child's uncle stated Jahi had two prior surgeries before the fatal surgery for sleep apena.
I'm sorry, but when a child needs multiple procedures in a third surgery for a health issue (sleep apena & bedwetting) where her weight is a significant factor, indulging that child in a sugar treat is not, in my opinion, responsible parenting.
CaliGirl9... thank you for all of your hard work and for the well written article!
I am a proud parent of a cancer patient who continues her battle at Oakland. Our experience has been nothing short than amazing and I pray this media circus and bad talks of the hospital doesnt prevent other families seeking care for their child to seek help elsewhere because CHIRO have been nothing but amazing to us.
Hello Artefact
Thank you so very much for your comments! I invited commentary from any health care professional who could speculate better than I, and here you are! And you are correct, my specialty areas were L&D and ER in a small rural hospital. We’d routinely ship out anyone who was ventilator-dependent, and we did not have the radiological capabilities for any specialized imaging, nor did we have a neurologist on staff or even the machinery to do serial EEGs. You must remember that I would honestly prefer to have had proper medical sources, but they are pretty slim. Much of what I wrote was gleaned from one hospital attorney filing—that was where I learned about the vasopressin—and physician statements regarding brain death, but written for legal papers, and not what they wrote in the chart, speaking our language, if you will. I also was able to guess what probably happened during her code, unfortunately having participated in a few of those.
I was very up-front regarding speculations of possible co-morbidities. However, at least as far as the possibility of Jahi having Type 2 diabetes, it’s a legit possibility, given her weight. Many African American children have asthma. Jahi’s uncle himself made the comment on one of the local outlets that one of the reasons Jahi had the surgery was because of nocturia, which I understand can indeed happen with obstructive sleep apnea.
May I ask you a few sincere questions? I’ve read that routine tonsillectomies have a complication rate of 2-1/2%. Those complications vary from bleeding to respiratory complications to death from hemorrhage or compromised respiratory function. So, because she had three separate procedures done on her upper airway, how risky was this surgery? We can deduce the co-morbidity of obesity by photographs. If we add the speculated co-morbidities, how risky was this surgery? And if this was her third surgery to treat sleep apnea (a remark made by her uncle to a local radio/television station yesterday), what could the previous two procedures have been?
And finally, apparently somewhere in the family’s attorney’s filings (and stories there constantly change, those filings have not become public, and because I don’t have nurses’ notes, I don’t know the truth), via media accounts, the teen was suctioned by her mother and her grandmother. Is it possible that erroneous suctioning, presuming with a Yankauer tip, which is what we used on post-op pediatric tonsillectomies, broke open one of the operative sites and caused the catastrophic hemorrhage? If this teen’s mom or LVN grandmother chose to do this procedure independent from physician or nurse training/oversight, aren’t they at fault, and might that be why the hospital is muzzled?
Again, I very much appreciate your input, and will use what you wrote to help me write up something about what happens to the body after brain death—which has been hard to do, because I keep finding animal studies, and because I am fairly certain Jahi is not receiving any treatment other than the vasopressin. She is not being treated as a donor body, which does receive treatment.
This is a hard, sad story to follow, and it’s made harder by having the local media swallow the story as told by the family lawyer, media’s unwillingness to do any investigative reporting, and the dearth of information that has to appear in court filings.
Anon @2:09 Thank you for your post!
Hi Trish! I too have wondered if/why CPAP wasn't used, or if it was, why it "failed." Yeah, it takes a bit of getting used to, the device certainly doesn't "look cool," but I understand that those people who use the therapy describe it as a miracle. Like you!
I hope what comes out of this is that treatment for obstructive sleep apnea needs to be weight loss and exercise, and use of a CPAP. Remodeling the entire upper airway needs to be for those who have already done—not tried, done and succeeded—weight loss and for whom CPAP has failed after being used properly.
Thanks for stopping by!
Hello Ginger
I thought about Munchhausen’s Syndrome by Proxy as well! Of course we need lots more information, so I can't even begin to speculate, but this was the third surgery to “correct” sleep apnea on a 13-year old? Did this family understand the importance of a normal weight for Jahi? Did they try really, REALLY hard to get her to lose weight? Ice cream outings as a reward didn’t help her lose weight—every calorie counts.
Here is a link to the “ice cream store.” http://www.creamnation.com/
Did they make an effort for the CPAP treatment to work? It’s all going to come out in court, because I am certain there will be a malpractice claim filed soon, if it’s not already. Nurses’ notes are going to be critical. I’m glad I wasn’t working there!
I'd take a guess that Jahi didn't 'like' the CPAP mask and didn't want to wear it to bed. I have patients in my ICU that won't wear their BiPAP masks so I doubt this 13 yr old girl didn't want to wear it either. Her mom probably told her that if she didn't like it, that the Dr said we could do another surgery. Just taking a guess as I know how kids are. It's just easier NOT to fight with them than make them do what we know is best for them.
My niece was supposed to wear a back brace to help her scoliosis. Didn't want to wear it the required 23 hrs a day. So she didn't. My sister didn't want to argue with her and I imagine Jahi's mom didn't want to argue with Jahi either.
Jahi is dead. Brain death=legal death in California. No facility will care for Jahi as she is. Her care will be expensive and without insurance to pay for her care, it can't be arranged at any facility. She'll need 24-7 specialized nursing care. I feel really bad for her parents but they need to accept the fact that their daughter is gone. This isn't a case of her being in a vegetative state.like Teri Schiavo as Teri wasn't brain dead. Jahi is. BIG difference.
I'll be surprised if Jahi's family gets a facility to agree to care for Jahi's body by the Tuesday deadline seeing has how she has been declared legally dead.
It's a shame all the way around but I feel there will be more details to the story that isn't being released until the lawsuit that is inevitable at this point and which were mentioned in Cali-girls original article....vigorous suctioning can rupture a new surgical wound, especially with an yankauer as it's a hard piece of plastic. And for all the student nurses out there..document document document!
It's unlikely insurance would approve the surgeries unless CPAP had been tried, and had failed. Why it failed is a matter of speculation, which I'm unwilling to engage in.
I'm fascinated by the medico-legal aspects of this case, and have read all the legal documents available online. The findings of the court in granting the TRO were interesting from a legal perspective.
Will you be blogging the inevitable malpractice, wrongful death, intentional infliction of emotional distress case? The issues of whether contributory negligence existed, and whether any actions taken by the family are deemed to be the proximate cause of the resulting brain death are likely to be fascinating.
Sure, let the family take her home to die.
I hope they're aware that since a death certificate has been issued there's no legal duty for EMS to treat or transport her - in other words, don't bother calling 911 when her heart stops.
I am a critical care RN, and we deal with families all the time who refuse to accept that their loved one will not recover. The difference in our hospital, however, is that unless the family is indicating receptiveness to organ donation, a diagnosis of brain death is rarely pursued.. Patients are trached and peg'd and sent to LTAC. In a couple of months they come back, septic, and usually die in a day or so. Rinse and repeat. I guess our hospital doesn't bother trying to reason with families and risk a media firestorm that has affected Children's in Oakland.
Caligirl: What a joy to finally read things that are medically accurate, informative and necessary! As a former ER nurse, I have worn myself out trying to explain vents, vasopressin, brain death, etc. We are all luck to have your skills and willingness to share available. I feel sad for this little girl, but always wondered if there were any cormorbidities not mentioned at the outset. They seem to exist and are coming out. I think you have truly earned a nice spa treatment!!
Thank you everyone for your intelligent comments! I am especially grateful for health care professionals who have offered comments, and those who understand the legal & insurance system better than I do!
I will try my best to stay abreast of this story. I'd LOVE to be able to attend any court proceedings, but I live a couple of hours from Oakland, and if you know anything about public transport or the highways in the SF Bay area, getting that far north is a problem.
I also suspect that this case will probably go to some sort of mediation before it goes to court, because I'm pretty sure that the requirement to go to mediation is somewhere in hospital admission papers, if I am remembering my own hospital admission papers correctly. Yes, I read them.
It's an unfortunate and increasing prevalence of some medical professionals to do what their patients ask for rather than what is medically best. If the physician indicates it's an urgent need to have the surgery, in lieu of therapy with a CPAP and she has a documented history with sleep apnea, they will pay. Even with the CPAP, let's say, the child received no lifestyle and behavioral interventions. I am thoroughly disgusted by this family's repeated requests to "feed" the corpse of Jahi by the insertion of a feeding tube. I realize this request is in line with the transfer of patients to another facility, but it just seems like they are so-very-concerned with her wanting to eat. From a psychological perspective this shows the mindset of the mother and how Jahi was treated while alive: if she wanted to eat, regardless of how much she had eaten previously, mom fed her. No governance.
Just my two cents, but would aggressive and panicked suctioning by non-professionals who may well be unqualified to use such a device have stimulated the vagus nerve as well as damaging the surgical site? This may well have lead to bradycardia and cardiac arrythmias. Just a thought.
Could one of Jahi's prior surgeries been a lap band to try to deal with the weight problem?
Interesting comments regarding the hard-tipped suction device. I read on CNNs initial report that when jahi was bleeding for her mouth, according to the family, the nurses "did nothing" etc. I wonder if that is because the nurses were either aware that her throat had already been further harmed by excessive auctioning, or that it could easily be. I don't want to speculate per se as I feel terrible for the family... They may be in denial but they are suffering. What a tragedy all around. This whole thing has helped me understand why a legal medial directive in case of incapacity is so important for all of us to have, regardless of curren thealth. You just never know and can do your family a huge favor and avoid a tragedy like this is your own family by being clear with your loved ones, in writing.
Anon @ 1/4/14 3:23 PM
Do you mean, would she have been a candidate for this surgery, or do you mean one of her prior surgeries actually have been a lap band?
I believe her prior two surgeries were specifically for sleep apnea.
I'm speculating here, but I can't think of a surgeon who would perform lap band surgery on a child. I don't know if that's considered acceptable surgery for obesity in children.
Hello Sprocket and Caligirl9,
I just wanted to right a note to you and the other contributors for your excellent breakdown and explanation of everything that has happened in this case, I am Canadian LPN who works primarily in palliative care, while I was aware of many of the complications and procedures, I have never worked in any area that I would have learned the breakdown of these processes in a critical care situation.
My heart does go out to this family, I have dealt with sudden loss in my own life and deal with loss daily, it is never easy, although I am sure there are great differences dealing with it in an icu where it is sudden and in my field where I am time to help the family cope with what is coming, I hope you continue to keep us updated as things occur as I would rather use your site to keep updated then read the multiple articles that are clearly attempting to create more drama and outrage then offer facts and reality.
BINGO anon -granny and stepdad used the suction. CHO cannot comment on it, but the nurses notes will tell the story. as a retired RN I sympathize and empathize with the poor staff having to deal with this nightmare. peace.
health care providers always get blamed by the ignorant.
Hello Anon @ 2:55
You make an excellent point—why the worry about "food?" Couple that with the mother's widely reported remark about how she tells Jahi that she's "looking good" and that she was a "thick" girl to begin with, says much about the mindset we are dealing with.
Hello Anon @3:13
I believe there is/can a point physiologically during the "code" process that bradycardia manifests. I would love for anyone who works in critical care to confirm the possibly physiology that could occur with erroneous suctioning of an operative site in the post-op period.
I volunteer in the UK as a Community First Responder (kind of Diet EMT for rural areas) and I've just found this in our training manual with regards to suction, bearing in mind I don't claim to be nearly as qualified as an RN or an EMT:
"Limit oral and endotracheal suctioning to 10 seconds or less to reduce the risks of hypoxemia. Monitor for changes in heart rate as oropharyngeal suctioning can cause vagal stimulation resulting in bradycardia."
If the relatives were in a bit of flap, what with all the blood, vagal stimulation may have occurred, thus exacerbating the onset of cardiac issues?
Look at every press image of the mother. LOOK. She has her hands and fingers folded over her face, as if she is either preying or crying. But zero tears, ever. Never any red swollen eyes from crying. Yet she pretends to cry.
Why would a mother in this situation not cry? Why would a mother go through the motions as if she is crying, but never shed a tear? Everybody else can believe what they want, but I personally believe it is something like Munchhausen's by Proxy; that she is needing sympathy to a degree which is pathological. Have you seen the family's Facebook page? The mom's picture takes up most of the space while the two photo's of Jahi are off to the side and both very small. Whoever made that page, was more concerned with focusing attention on the emotional status of the mother rather than Jahi.
Mother is doing something weird, similar to what that Susan woman did, when she pretended to cry about her sons that she murdered by locking them in her car and letting them drown in a lake while blaming the whole thing on a "black gangsta". What first caught my attention while watching publicized interviews of her, was that the muscles of her mouth crinkled upwards as if she was smiling, instead of crinkling downwards -- which is what happens during a genuine expression of anguish.
Anyway, Jahi knew or suspected that her mother had issues, she expressed reservations about the surgery. And then immediately after the surgery while Jahi was still in the ICU, they did absolutely everything they had been (most likely) told NOT to do by the doctors. They paraded extended family members into the ICU, they kept her talking, they fed her bits of a hamburger sandwich, they suctioned her.
I personally suspect that on a *very* subconsciousness level, they wanted her to die. They wanted a social justice cause for everyone to rally around, which would give them sympathy. Maybe I'm wrong. Yet the possibility does exist that my assessment is correct. Why do everything to a high-risk patient immediately after surgery, that you've been told not to do by the doctors?
Anyway. CaliGirl9, thank you most profusely for your informative articles on this situation, you have been more informative than any news outlet. I'm also now wondering if you've written about that other brain-dead lady, the one who's pregnant. I'm wondering what kind of condition we can realistically expect the fetus to be in, and I'm totally creeped out that they're using the dead woman's body as an incubator. Thank you for reading. ~mA
Cali-girl! Thanks for the informative and cogent review. I missed your bi line on this one. Was too busy diving into the very well written material. Lots of good comments from other folks on the front lines of ICU/Palliative/end of life care. Look forward to reading more from you as this will play itself out. ( The comments are correct about LTACs not accepting patients with proven brain death and no payer source.)
Thisbe-aka Ginger
@CaliGirl9:
Anon from 2:55 here. Yes, I agree. This mindset is what's ruining the health of millions across the globe. The idea that a person can be obese and still be healthy is a fallacy. Jahi wasn't just obese, she was morbidly obese; the distinction should be made. Her family, mother in particular, are vastly preoccupied with feeding the girl. In psychological studies with parents of morbidly obese children, parents report that they feed their children excessively because a) they enjoy the joy the child expresses when eating and/or b) they show reluctance to deal with any behavior tantrums the child might display when refused food. Even more disturbing is the evidence that parents, especially in mother-daughter relationships, are in denial about their own body self-image and will therefore be completely oblivious to the unhealthiness of their children. I'm not suggesting that Jahi needed weight loss only. Perhaps medication might have helped, such as a metformin -- along with rigorous, daily exercise -- and a CPAP would have been my go-to for treatment had she been my daughter. I would have exercised right along side her for encouragement. Electing for not one, not two, but three surgeries to treat facets of her sleep apnea is the height of folly, exposing her to ever-increasing dangers mingled with co-morbidities until finally she died.
Nowhere in the media has any comment been made regarding the fact that brain death determinations are made all over the nation and the world. For the past 40 years, every single person who has received a heart transplant has received their new heart from a brain dead person whose heart continues to best. This has not been a controvery. This is so well known that I believe the lawyer for the family and every news team knows it. Therefore they are choosing to appear as crusaders for the benefit of only themselves. For the lawyer, he gets 1/3 of any malpractice settlement. Whether or not there is malpractice we can't know- the family has forbidden the hospital from commenting.But if she is considered dead and removed from life support the potential settlement is much less than if she is maintained. This is because the family will receive monies for her medical support. Even though this is the intent of money, the lawyer gets his cut first. Its a bit of a scandal in malpractice- when lawyer gets his share and insurance companies are reimbursed there is often little left for the family. The media get to take the side of the "little guy".
Hello Anon @ 4:57
Wow, your post brings up oodles of points for discussion! Unfortunately we can’t be positive of anything that comes from the family’s mouth or mouthpiece. They may well be self-serving, guarded remarks.
There was a clip from one of the local stations where the mother as much as said she understood Jahi’s brain was dead, but because she was warm and her heart beat, she could not accept Jahi was dead. Unfortunately psychology is not something I majored in, and I took only three psych classes as an undergrad, and had a psych rotation in nursing school that I hated. How do you get through someone in denial? Tell and show them the truth, over and over, with a consistent message. Unfortunately the family is listening to that small but vocal minority that claims “Jahi lives!”
I am especially thinking of your statement “Jahi knew her mother had issues” —you may have a point. Two prior surgeries to correct this? I am sure the teen had a memory of post-op pain. Other than the bedwetting (which is nothing to joke about), what other disabilities had the sleep apnea caused? Was she falling asleep at school? Was she tired all of the time? Unfortunately, these are questions that we can’t answer.
I firmly believe that some of the comments made on message boards may contain truths. I’d read the hamburger comment, but didn’t want to run with it simply because I thought it was so preposterous. But then I see a statement in one of the local papers that says Jahi was suctioning herself, under the LVN grandmother’s direction. Just how non-compliant was this family, and the teen herself, in the immediate post-op period?
Thank you for your intelligent comments! I am humbled by how much my words, and many excellent comments, have helped foster an understanding of what is going on in this confusing case that has received mostly juvenile and uninformed media coverage.
There is no aspect of this case and situation that is not tragic; I ache for this child and her family. Thanks for outlining coherent points and encouraging reasoned discussion which is missing from mainstream coverage. Not a medical professional, but I've spent most my life in proximity to healthcare and how this has escalated is nearly beyond comprehension...
I hadn't followed this case until the last few days because as an RN of 17 years with 12 being in ICU nursing, I get upset when the uneducated public IMMEDIATELY place blame on the medical staff. Yes, sometimes it IS the fault of the medical staff but it isn't ALWAYS the fault of the medical/nursing staff of the hospital. It sounds like that it could be a case where this girl's family wasn't following directions of the nursing staff and I've had plenty of family blatantly IGNORE medical directions..like visiting hours, which are more like suggestions because with the new HCAHPS scores where reimbursement is based on patient satisfaction scores, we must do what the patient and their family WANTS not what's in their best interest which means kissing their butts.
So, visiting hours have gone by the wayside at many hospital ICU's and it's now bring in as many people as you want, stay as long as you want. let the patient eat whatever they want, MD/DO orders be DAMNED because we don't want the patient/family to be unhappy and thus giving us a lower score on that dang Press-Ganey Survey!!
So that might be why this family was allowed the numerous visitors...because the nursing staff wanted to please the family and keep them happy as patient satisfaction and customer service is the name of the game in healthcare these days....little did the nursing staff know how it was going to turn out it the Jahi McMath case :/
Hi Anon @5:18
What’s really disingenuous, but I think totally lawyer-like, is for the family’s attorney to claim “I am doing this for free,” but in papers he filed in preparation of yesterday’s hearing, he’s now asking CHO to pay his fees.
Because he cares so much …
Anon @3:52
Lap band… excellent idea. I wish I knew. I don’t know if bariatric surgery is contraindicated in children, but if one shops around enough, one can usually find a doctor willing to do something like that.
Thank you all for your thought-provoking commentary. I think all of us who are nurses knew from the hop that there was more to this story… I’d like to think that we are all professionals and not so callous as to simply hand the mother a “bucket” and then abandon her to deal with the problem.
I’ll say it again: Nurses’ notes are going to be critical. Student RNs—learn from this! Even the most mundane factoid may be meaningful, eg. Who was suctioning the teen, and what kind of food, if any, was brought in against doctor’s orders?
KELLYICURN
Word! In one of the hospital filings, the brief outlined just what the hospital was doing to help facilitate them in their grief process. CHO went above and beyond its duty, IMO.
Oh, to be a fly on the wall to read those nurses' notes. I know exactly what I would have written... teen talking despite my instructions to keep quiet, a conga line of family passing through, encouraging her to talk, grandma and mom and the kid herself with the Yankauer in hand, what food was brought in, etc. Yes, it would have been a boring read, but if we health care professionals learn nothing from this case, CYA is sadly job one. We have to save our own asses so we can live to deliver excellent patient care another day.
Thank you for your intelligent comment.
Since these comments go through moderation, I include full link for your convenience (just on the off chance you haven't seen this quote):
http://www.nbcbayarea.com/news/local/Oakland-8th-Grader-Brain-Dead-After-236015681.html
"He said the scene was gruesome. “She was coughing up buckets of blood,” he said.
At the same time, Sealey said it appeared to the family as though the nursing staff had vanished during what seemed to be a shift change. In the family's minds, there didn't seem to be enough hospital staff in the room to help. The family started suctioning blood themselves; Jahi's grandmother, Sandra Chatman, is a nurse at another hospital.
“A 13-year-old should not have to suction herself,” Sealey said. “She had to use a suction machine to suction her own blood. Her mother and stepfather had to suction out her blood at points. None of them work for this hospital.”
end quote. Egads. Just because the doctor leaves a scalpel in my room, doesn't mean I should start operating on myself. Hindsight is 20/20 I guess, and I feel sorry for the family, because it looks to me like they contributed -- a number of times -- in the final outcome.
Hello Anon @ 7:00
Your link, and the quotes you pulled, show why the reporting has been one-sided. Sealey is the family’s attorney’s PI. She was not there, so she is taking the family’s words as the be-all, end-all statement of absolute fact. The local news, for the most part, has accepted everything the family says as fact. Of course CHO has its HIPAA muzzle still in place.
In her statement, she admits that the family suctioned the teenager. What exactly was the timing of this “suctioning?” Was the family told to do so by nursing staff or instructed to do so, and under what circumstances? What they admitted to is four untrained people suctioning a post-op major rebuild of the teen’s upper airway within hours of that surgery taking place.
As I was able to determine from a court document, she started to bleed in the early evening. I don’t know if CHO has 12-hour shifts, so I have no idea about the change of shift charges brought by the PI. Usual shift changes are 7 a.m., 3 p.m. and 11 p.m. Twelve-hours shifts are usually 7 or 8 a.m. and 7 or 8 p.m., but it certainly varies by hospital and its staffing needs.
If you have a Google account, and you think CaliGirl9's posts on Jahi McMath are informative and relevant, please consider recommending T&T and/or the specific post on Google.
If you scroll down the right side of the page, you will see a link to click to recommend on Google, as long as you are logged into Google.
Thank you!
Sprocket
Omari Sealy is the uncle.
I appreciate this forum and its sharing of information but I'm finding a fair amount of rampant speculation that is not supported by fact. You'd all be quite a bit more credible if you cited primary sources. Just a suggestion.
Hi CaliGirl9, it's Artefact here again. Thank you for posting my comments and I understand that the medical information that you have provided has been gleaned from different reports and that your interpretation is based on your own background in health. I think that you have done a really great job bringing all of the information together and explaining it for non-medical people to understand and there has obviously been a lot of research behind both of your pieces. I have stuck to the medical information and facts acknowledged by both Jahi's family and CHO as much as possible as well as simply giving a background approach to how ICU patients are managed. ICU is an incredibly complex area to work in and there are multiple protocols for management of resuscitation, haemorrhage, cardiac arrest and hypoxia brain injury. Knowing this it is important not to speculate too much on what could have happened or what may happen to Jahi but to do our best to simply present facts about the case.
I understand that people are trying to understand what happened between Jahi's surgery and her hypoxic brain injury but at this point there really is no proper way to know. Not every resuscitation goes the same, we don't know if respiratory arrest preceded Jahi's cardiac arrest, we don't know how much she bled. We still do not know for a fact whether Jahi had Diabetes Mellitus or asthma which might have complicated her resuscitation. Those are not the pertinent issues of this case. They contribute towards risk but none of them are verifiable and at the moment they are simply stirring up the public further. In the interest of fair reporting and blogging I would encourage you to include the possibility of these issues in your writing but not to encourage speculation in comments. This is also the reason I wanted to clarify what happens to the body when it is maintained with ventilation and vasopressors after brain death - images of oozing lines, impacted faeces and diarrhoea, cavitation pressure sores and liquifying organs are not a fair representation of the situation. We must strive to maintain a clear understanding of the available facts, sequence of events and prognosis.
With regards to your question about risks of upper airway surgery (tonsillectomy, turbinectomy, uvulopalatopharyngoplasty), this is not an easy question to answer without knowing more about Jahi's medical history from a verifiable source. We know about her weight, her sleep apnoea and her previous surgeries. Based on these three her risk would definitely be higher. But without knowing how well she recovered from previous surgeries, if she had gained more weight following previous surgeries and what post-operative care and instructions she was given I cannot comment further other than to say that her risk would be higher but is not quantifiable with a number. It is important to remember that surgical risks are very difficult to quantify. The number that you have quoted is a number that applies to all tonsillectomies, not controlling for surgeon experience, patient co-morbidities and specific anaesthetics risks related to Jahi's cardiac and respiratory fitness for surgery. All of these risks would have been discussed with Jahi's family by the surgeon and the anaesthetist prior to the operation.
Anon @ 8:26 PM:
CaliGirl9's computer is acting up and she asked me to post this response.
"I misspoke about Sealey being the PI. He is indeed the uncle, the family spokesperson. Thank you for your correction! Dolan does have a PI sniffing about, but right now I cannot recall her name.
Regardless, Omari Sealy would not be an unbiased source of information."
CaliGirl9
@ Anon 7:22, regarding the uncle Omari Sealey's story witnessing all the blood, etc - he was not even there it seems - a quick look at his Twitter timeline shows Dec 9 was his last day in Cabo and he was getting a massage. At best he is repeating what the grandma said, and we know how these things can get exaggerated.
Does anyone know if there is a circumstance in which HIPPA would not apply any longer and the hospital can disclose some information without having the family's permission? It is just so unfair to hear the slander against CHO without them having a chance to say something.
i'm not a healthcare professional, as many of you are but i assume that if i go to a hospital,the doctors and nurses are responsible for my care until i leave.. they should have monitored her closer, when she started bleeding a doctor should have been notified immediately, there shouldn't have been any need for the family to suction her at all because the nurses and doctors should have already been doing so, and instead of giving bigger items to collect the blood,it should have been taken more seriously.. regardless of what the family did, its about what they didn't do in my eyes.i'm a parent.and when i had a c-section,the annoying nurses checked on me constantly throughout the night while i tried to sleep,and i was fine.why did they put the child's family in charge of her care??since they were too busy to attend to her then,they should damn well be sued and fired and have their licenses revoked.. it enrages me how none of you moderately intelligent people have an excuse for why the medical professionals didn't follow up correctly or rush her back into the operating room to find out why she was bleeding heavily yet you have such an opinion on what the family allegedly did do,and should do now.. i bet if it were any of you,you would have been attended to immediately,not left to do the work the doctors and nurses are paid for!
With regards to obstructive sleep apnoea - first line management is weight loss and trial of continuous positive airway pressure ventilation at night. CPAP is a small ventilator used with a mask at home and provides continuous air blown into the nose and or mouth to maintain an open airway to prevent obstruction and thus apnoeas for people who suffer OSA. If sufficient weight is lost and the patient is compliant with CPAP surgery is often unnecessary. However, in some instances weight loss and CPAP are not adequately improving the patient's situation or the family specifically requests surgical intervention. The treatment of OSA may sometimes fall to surgery to avoid worsening of the patient's cardiac complications. We currently have little information on whether Jahi had previously attempted weight loss or trialled CPAP prior to her surgeries. Comments about bariatric surgery for this girl are absurd and shouldn't be encouraged. Bariatric surgery is not recommended for adolescents as it can result in significant nutritional deficiencies and has mortality risks as well. Reports about her enjoyment of snickerdoodles and burgers are suggestive but not conclusive of her diet or weight problems.
Weight gain is a result of multiple factors including genetic factors, illness, education, and social exposure and whilst Jahi's weight is a factor in her medical history it shouldn't be used to vilify her or her family without knowing more about her background. I am also appalled at some comments that are suggesting that Jahi's mother and family are evidencing Munchausen's By Proxy including some comments by administrators. MBP is a very serious disorder and a hearsay statement by Jahi that she was afraid of not waking up after the surgery (every single patient that I anaesthetize vocalizes this same fear to me, does this mean that they or their families 'subconsciously' want them to die?) in no way indicates that her mother was forcing her to have surgeries, wishing for her to die or using her for 'the limelight'. This exaggeration of the family behaviour and criticism of how they express their grief in interviews lacks compassion and is very sad to hear from other health professionals. It is possible to be firm in our beliefs and statements to this family whilst disagreeing with them but remain fair in recognizing the emotional complexity of their situation.
I teach clinical and communication skills in intensive care to nurses and junior doctors. The psych literature actually demonstrates that empathy in the face of extreme denial or emotional family behaviour is crucial in helping them deal with the situation and improving communication. We have to ask ourselves the question: do we want to simply do what we believe is right or do we want to problem solve with this family and allow them to see the right thing to do? Continuously re-stating the facts to them is often unhelpful. We teach our staff to ask the family questions, to ask them what they think is happening, to ask them why they think their loved one is not waking, what will happen if they let go, how they can honour their loved one differently. I often see guilt in family members who believe that it is their fault for encouraging the patient to undergo surgery which has major complications or for helping them get their motorbike license just before a fatal accident or for not trying harder to help them with their drug addiction just before an overdose. Guilt is common and does not necessarily reflect culpability but simply pain at not doing more. Whatever blame we try to lay at the door of Jahi's family for her health and co-morbidities, it is not our place to do so. It is our place only to try to understand better.
- Artefact
I cannot comment further or the medico-legal aspects of the case as there are different legal precedents across states. I simply would like to state again that we should do our best not to speculate or vilify this situation. If there is a malpractice lawsuit filed the evidence will be presented at that time. Comments that increasingly exaggerate the family's behaviour in the peri-operative period, paint Jahi's mother as an MBP sufferer, criticize her mother for wanting to feed her (this is a very natural request even for patients that are not obese) and cynicism at the family's grief response are clouding the real issues at hand. A large number of nurses and medics have read and commented on these pieces and we would do well to remember that our patients come in all shapes, sizes, dispositions, educations and situations. We have chosen our professions because we want to help those that are sick and we recognize that illness places people in a state of great vulnerability and is often linked with poor education and longitudinal socioeconomic problems. We are not here to judge, we are hear to provide what help is available, appropriate and compassionate to the best of our abilities even on the days when we are exhausted (as I am tonight on night shift) and frustrated.
- Artefact
Anon @ 10:14 PM:
Thank you for the information. A link to the uncle's twitter feed would help.
Anon @ 10:16 PM:
Unless someone more knowledgeable tells me different, the hospital is bound by HIPPA laws. Cannot release any information about Jahi's care/complications without family consent. Information CaliGirl9 has obtained has been from court documents, except where she has clearly stated it came from message board comments/speculation.
Anon @ 10:21 PM:
You are assuming the information the family has given the press has been truthful. The family, the family's attorney and the attorney's private investigator are not unbiased sources for information.
Hopefully, other knowledgeable health care professionals will chime in with more information.
Posting for CaliGirl9, who is having computer problems:
"We all know that the hospital and its personnel are bound by HIPAA laws not to reveal any confidential medical information. But hospital visitors are not bound by this law. It is entirely possible that a visitor saw this whole thing unfold.
Apparently CHO's ICU is a single large room, with curtains for "privacy," so there isn't much privacy, and visitors certainly could hear and see a lot during a code. For discussion's sake, let's say the statements in this message (link below) are true. Discuss if you wish!"
CaliGirl9
@iseeyou_nurse twitter post of a GoFundMe donation
I just want to thank you for the informative articles. There is so much case misinformation out there, & total confusion between brain dead, coma, & vegitative states.
I've posted your link, or search instructions to find it, wherever I could.
I also appreciate the insightful comments contributed by many.
The family has far surpassed any reasonable realm of denial. Either they're hiding something, or they are milking this for some legal and/or financial gain. The worst part- at the expense of desecrating Jahi's body & memory.
I find it most sad that no one is truly protecting her best interests as the deceased. The judge is a wimp. And the attorney is a disgrace, instigating much of by advising the family against multi Drs' same prognosis, & filing repeated motions.
COPY OF MINUTES
https://twitter.com/mgafni/status/419267737525813248
COPY OF AGREEMENT
https://twitter.com/mgafni/status/419236734476378112
https://twitter.com/BorensteinDan/status/419499374415077376
JAHI UNCLE TWITTER
https://twitter.com/_iamOMARI
This article states that Jahi's family was *given* a suction device by the ICU nursing staff.
http://www.contracostatimes.com/daniel-borenstein/ci_24835770/daniel-borenstein-mischaracterizations-jahi-mcmaths-condition-have-helped
To all the people who think that she should be given "a chance" to wake up or more time for the parents to come to terms with this diagnosis, you are not looking at the big picture. This deceased child is taking up a much needed pediatric ICU bed and the valuable time of both doctors and nurses who could be devoting their efforts towards children who can be saved. How many children are being harmed so that this circus can continue? Shame on the judge for extending the first stay. Also, who is going to pay for those extended days in the ICU? I guarantee you that the hospital is going to have to absorb the cost and further limit their ability to help other children, who can be saved. What a waste. Want to know what's wrong with medical care in this country? It's letting uneducated lay people dictate medical care. Ridiculous.
I am an ICU doc.
This entire episode is disgraceful.
We are way past any compassion we may have had for the family at this point.
About all we can hope from all this is a forthright discussion of the perils of magical thinking in real world situations. That and I earnestly hope ways can be found to prevent ANYONE involved in this farce to realize any profit from it.
That family played Doctor & suctioned this poor child?That is crazy!
They did the child harm & then point fingers at the hospital!There will never be any quality of life for her ! Let her go & spread her wings
Peace be with you child of God
Like Anon @ 1/5 12:42 am posted,
ContraCosta Times reporter Daniel Borenstein's article dated 1/3 is the most accurate article I've seen to date.
Here is a direct link:
Mischaracterizations of Jahi's condition ignites insane legal fight
Thank you so much for this. I'm a healthcare professional and I find myself screaming at the computer when I'm reading articles about this. So much ignorance and misrepresentation. It's maddening.
Hello I have a few questions regarding this case, as well as the protocol for rendering brain death in all 50 states. As it pertains to this case: I read a comment here where a dx of brain death is rarely pursued when the family isn't receptive to organ donation. In those cases, the patient is normally transferred to LTCF and within a few months he/she is re-admitted to the hospital with sepsis or related complications and subsequently dies. It does seem odd to me that if organ donation wasn't an option, the official diagnosis of brain death came rather quickly (considering the fact it's been less than a month since she had surgery). While I'm in no expert on policy it appears as though the hospital chose a pretty aggressive route and one that could have easily been avoided had they not been so eager to pursue brain death. Their steadfast insistence on calling the child a "corpse" and reiterating that she is "dead, dead dead" is fairly appalling even if what they say is of undisputed medical fact. It lacks responsible PR and doesn't do much for their public image. Just because a physician/hospital retains the legal right to cease life support in cases of total brain death doesn't mean it's always appropriate to do so, especially when involving cases dealing with difficult family members. A situation like this isn't rare (meaning unexpected child death arising from xxx complications) yet, we rarely hear about it. One can conclude it is because there is more than one way to deal with these types of situations. This child will shortly succumb to cardiac death regardless. The reason it is an issue is due to the official diagnosis of brain death. Once the dx was made, the hospital was forced to act in a manner consistent with their policy. Being of a logical mind and careful not to allow my emotions to get the best of me, I was stunned to learn that all 50 states essentially allow a hospital to cease life support against the wishes of the family. Humans are flawed by design and mistakes are made, as in the Zack Dunlap case. His case isn't an isolated one and I am convinced his diagnosis of brain death was made in haste solely due to the fact he was an organ donor. Secondly, logic stands to reason that if you're a religious person (or even slightly spiritual), the human psyche transcends beyond that of material substance. Just because an MRI fails to demonstrate activity of "life" it certainly doesn't mean "nothing" exists. It is always wise to err on the side of caution in such cases. With the implementation of Obamacare & the restrains imposed on insurance companies, this story will probably become commonplace in the very near future. We apparently learned nothing from the Terri Schiavo case other than how to circumvent common sense & moral responsibility.
Sara Tonen,
I hope CaliGirl9 gets her computer going again so she can give a better answer to some of your questions.
However, I will address what I can.
You said: "it appears as though the hospital chose a pretty aggressive route"
You have to understand that we don't know what happened, minute by minute, in the pediatric ICU. The only information we have is limited from the court documents, and statements the family has made to the media.
You have to weigh the statements the family has made to the media, and the statements the family attorney has made because these are NOT unbiased reports. The family and their attorney have an agenda. The hospital cannot address the media because of HIPPA laws.
You also have to understand that there are many unsubstantiated statements that have been made in comments on news stories and in comments here.
CaliGirl9 has mentioned some of those comments, but has clearly identified in her story that's what they are. Unsubstantiated means, we don't have an independent source to verify the comment, such as an eye witness who identifies themselves, or say, by a court document.
The family has stated they called and called for nurses to come but no one came. A certified RN I know, has emailed me that the CHO pediatric ICU, is one big room, with beds separated by curtains. So, this statement by the family to me, doesn't correspond with what I believe to be true about the ped. ICU.
So just with this one family accusation that they called for a nurse and no one came, I have to question the accuracy of that statement.
Hopefully, others with more medical knowledge will chime in with some answers for you.
Thank you for reading and participating in this very tragic topic.
"I read a comment here where a dx of brain death is rarely pursued when the family isn't receptive to organ donation. In those cases, the patient is normally transferred to LTCF and within a few months he/she is re-admitted to the hospital with sepsis or related complications and subsequently dies."
With regard to the above comment, I believe that was one persons perspective of how the hospital they work at handled things. I do not think it was meant to represent standard procedure.
With regard to "procedure", is it suffice it to say each hospital has their own? This means some kids in Jahi's situation would have been transferred to LTC absent an official dx of brain death and others are not afforded the same "option"?
Actually I have no idea, the comment was posted by an individual that just said that is they way they handle it. All I wanted was to say it was an individual comment, not necessarily a consensus.
http://www.rawstory.com/rs/2014/01/05/mike-huckabee-links-brain-dead-california-girl-to-nazi-death-camps-forced-abortions/
@ Sara Tonen: based on the court documents I've read, the hospital followed CA law and their standard procedures in regards to wanting to give the family "reasonable time" between informing them of the brain death diagnosis and the intent to disconnect the ventilator.
I disagree with your characterization of the hospital "pursuing" brain death and doing it so "aggressively". I am not in the medical field but I believe doctors diagnose facts, not "pursue" such conditions.
If it is true that Jahi had two prior surgeries related to sleep apnea, as it has been attributed to the uncle stating this, I am curious where they would have been performed - CHO?
Also, can someone with medical knowledge comment on what could be potentially done during two prior surgeries related to the same issue (i.e. it is not like they can take the tonsils out again)? It seems too much for me for a teen to undergo so many surgical procedures for the same issue, and though entirely possible, the uncle might be misinformed with stating that.
"I’d love for you to post just how difficult it was to maintain homeostasis in the sad case you worked on. "
I've been on the laboratory end of trying to maintain viability of a fetus when the mother was brain-dead, and maintaining some patients whose brain was just fine but Guillan-Barre or a spinal injury had paralysed their breathing.
You have to continually monitor (by lab tests and bedside instruments) and adjust all the things that the autonomic nervous system does to maintain homeostasis ... electrolyte balance, pH balance, fluid balance, O2 and CO2 levels, blood pressure, blood protein levels, sometimes even clotting factors.
And if you adjust one thing, you can throw something else out of balance ... so you fix that and something else shifts.
Also, you have to artificially provide for the things that just moving around does for your body: clearing mucus out of lungs, stimulating intestinal activity, preventing blood pooling and clotting.
========
Sometimes we were successful, sometimes we weren't.
But it is not as easy as sticking in a feeding tube and keeping power to the respirator.
One thing that bothers me is the inflammatory language of the uncle against the hospital in some of the videos. He seems to believe that it is a business just in it for the money rather that a non-profit with a mission to help children. Shame on him for not educating himself on the difference.
Hi Sprocket & thank you for your thoughtful reply. I just want to say that I am not relying on what the family has said and I really don't care to speculate as to the what/where/when/how. My focus of interest is on the fact her family objected to removal of life support and I am sure this isn't uncommon in situations involving children. That being said, obtaining a death certificate while still on artificial life support doesn't appear to be standard procedure either. My opinion of the hospital is based on what they have said, not on what they haven't. I really haven't paid any attention at all to the family. I do not hold this family to any sort of standard but I do hold a hospital to a high standard and it appears (from what I've seen so far) they could of handled this a bit more effectively than they did.
"Does anyone know if there is a circumstance in which HIPPA would not apply any longer and the hospital can disclose some information without having the family's permission?"
During a lawsuit. If CHO is sued for malpractice or wrongful death, the medical records become evidence and staff become witnesses.
I would be OK with amending privacy statutes and policies so that the required privacy can be ended by the medical staff after the first media conference is called by the patient or patient's family.
Sara Tonen,
From what other medical experts who have posted here (and news reports have indicated), you said
"while still on artificial life support..."
Jahi is "not" on artificial life support as I understand it and as how the medical community understands it.
I don't see how we can definitively give an evaluation as to "how" the hospital handled this, since we don't know what they did minute by minute. We only have court documents and family statements to rely on. Can you tell me, for certain, what the hospital did minute by minute, to say, that they did not follow hospital policy?
Thanks again for your comment.
The hospital is bound by HIPPA. They are prohibited by law, from releasing any information on Jahi's care/status, without a release from the family.
The only situation that would get around that is a lawsuit where information is released via subpoena/ court order.
That's my understanding.
Thank you everyone for your thoughtful, respectful comments and for participating in the conversation.
I believe the family filed a motion to prevent CHO from saying ANYTHING regarding Jahi's case despite HIPAA laws.
I also read in the Daniel Borenstein article that the Family's Attorney is planning to pursue further legal action to see if they can get the Judge to extend Tuesday's deadline? Gosh I hope not. this mess has gone on long enough.
Em,
After a time of reflection, I published your comment with a link to the FOX story, the interview with Mike Huckabee.
It's clear from the first few sentences in the article that Mr. Huckabee is completely clueless as to Jahi's real condition. I believe his statements are made to inflame public opinion. They are not objective and they are not factual.
The story does not state the numerous procedures she had and calls the ventilator she is on as "life support."
We've had other medical experts chime in here, and there have been a few other media reports, that have explained that what Jahi is on (ventilator) is nothing close to life support.
Thanks again everyone, for reading and adding to the discussion.
I've worked in 2 hospitals that were large trauma centers.
Maintaining someone in a long-term care ward on a respirator with a feeding tube was not the way they handled death. This was after the Quinlan case, and unless someone had enough brain stem activity to maintain breathing and heart rate, they would do the testing and scans twice, at intervals of 24 hours or so, and declare death.
Very rarely would a family refuse to accept that "mechanical respiration" (we seldom called it life support, because often it wasn't) meant their family member was still alive.
That doesn't mean we were "jn a hurry to pull the plug" ... but the brain can't survive days with no blood supply.
My memory might be a little fuzzy, but I was in CHO visiting a friend of ours whose baby was born with complications and was admitted to the CHO ICU. It is a big room. What I remember is that none of the beds were actually that far from the nurses station. Now, that could be because we were in a section with all infants but there was tons of nurses around the whole room. There was a waiting room outside the room for family and you had to get gowns on, scrub yourself down to even enter the room. This was about six years ago though so things could have changed in that time.
Sara,
The Affordable Care Act has nothing to do with this situation. Insurance companies have nothing to do with this situation. Religious beliefs have nothing to do with this. There are no reported cases of recovery from brain-stem death; especially not after three weeks. The clinical diagnosis of brain death was given because for two days post-resuscitation doctors had been battling the swelling in her brain. They were monitoring her and attempting to save her life. Meanwhile, her family is most certainly pressing the physicians for assurances that she is going to recover. Eventually they were forced to deliver, after careful examination by two hospital doctors, the clinical diagnosis of whole brain death. You quote Zack's case, good. He was declared brain dead for two days; Jahi has been wholly brain dead for three weeks. For three weeks her brain has been deprived of oxygen. Do you understand the difference? You keep using the term "life support." There is no life to support, only the absence of life. The heart does not require input from the brain to fundamentally function, only oxygen, which the mechanical ventilator is providing. She is not "alive." She will never be "alive" again. Her brain cells are presently liquefying and have been for the last three weeks. Terri Schiavo's circumstances were vastly different given the fact that she was in a persistent vegetative state; she had brain function. Your ignorance of science and the facts and that of other people like you is why this case continues to gain a disgusting amount media attention.
Sprocket, I have never contented the hospital didn't follow their policy. I am saying matters involving life and death aren't always black & white. Policy is there, sure, but you can't tell me policy can't be tweaked or creatively bent to accommodate certain situations and/or thwart a media circus such as this. Surely you don't think this is the only family who has lost a child and was hesitant to remove them from "mechanical respiration/ventilation" or whatever term you feel comfortable using. And it is my understanding this child is currently hooked up to a machine which is sustaining her beating heart. Brain death and cardiac death are two separate issues. After permanent cardiac death there is no machine that will sustain or preserve brain function, no?
Sara, I realize your compassion and desire to circumvent such an outcome as this. Realize though that emotions are hard to assay, death of a child is a traumatic experience that everyone experiences differently. If the hospitals of the world were to tweak their policies to appease every grief stricken family then they would spend most of their time trying to do that and possibly other familes with memebers who are living patients would fail to be accomodated.
Sara,
The brain is the seat of life. If the brain dies it's a matter of time before the heart fail. This is because the brain is no longer offering hormonal support. Her brain is irrefutably dead and it's only a matter of time before the rest of her body begins rapidly deteriorating. It appears as though you're suggesting that since there aren't machines to keep brains a live, as is the case with the mechanical ventilator, cardiac death is therefore more of a "permanent" death and takes a higher precedence. No. Death is death. One does not supersede the other based on speed. Lastly, please don't patronize Sprocket with your comment with comments like "whatever term you feel comfortable using." Sprocket isn't tailoring comments for comfort. Sprocket is imparting facts. Life support. Life. Jahi is not alive. Her life does not need supporting.
I just would like to remind everyone to please try to be respectful. There is a real person behind the words being posted anonymously.
Below is T&T's comment policy that appears on the web site:
All comments are moderated. T&T is not obligated to publish your comment. All we ask is that you be respectful.
Thank you everyone, for joining the conversation and sharing your thoughts.
Again, please be respectful to each other.
Individuals posting as Anonymous can be many different people. You never know.
Written communication does not contain 90% of the communication cues we are used to receiving when speaking with a real person. Eye contact, facial expression, tone, etc.
T&T will not publish comments it feels are not respectful.
Thank you.
Sprocket.
Update: http://www.mercurynews.com/breaking-news/ci_24850098/jahi-mcmath-attorney-tells-tv-station-child-will
Sara Tonen, I wanted to address some points for you. I am an ICU specialist and Anaesthetist and I have worked in four major hospitals in different states. I have never encountered an ICU that has placed tracheostomies and PEG tubes in patients with whole brain death nor have I read about any other hospitals doing so. I believe that the person who wrote in stating this has a false understanding of which patients were having these procedures done in their unit and assumed that all of these patients were brain dead. I do know of some hospitals who would do this for patients in PVS or forms of partial brain stem death because these patients do not receive a diagnosis of whole brain death which is the gold standard in the US. It is reasonable to provide a trache and PEG for patients with PVS but not for whole brain death. The reason that testing and policies exist for the diagnosis of whole brain death is to allow the health system to recognize when procedures become futile and cease support. It is also an important diagnosis to make in order to proceed with organ donation in appropriate patients. Once the brain has lost blood supply from severe swelling (either through trauma or through hypoxia) it is possible to demonstrate this with EEG and scans that show lack of blood flow to the brain.
Here is one thing that differs from state to state and from hospital to hospital. Not all hospitals are required to do the brain flow scans. Currently, for a diagnosis of whole brain death doctors have only to perform a minimum of two separate clinical evaluations of brain stem responses - these must be carried out by two independent medical specialists trained in performing these evaluations. The patient also requires two EEGs carried out with a suitable interval period, usually 12 or 24 hours. But a hospital or a doctor is not compelled to show lack of blood flow with imaging. Going through medical literature (I tend not to trust 'articles' written by people with agendas and without factual evidence demonstrating how testing was performed or what the actual results are) there has never been a single case of a patient waking up after a proper finding of brain death. I encourage others to do research on PubMed.
I understand your distinction between brain death and cardiac death and doctors do make this distinction as well - it is what allows us to proceed with organ harvest in a patient who still has a beating heart. If you are struggling to understand whole brain death and why this is termed death (therefore no life support is being provided) look at it this way: a human can have mechanical equipment replace their heart, we use dialysis machines for kidny failure, we use insulin in pancreatic failure, we can transplant most other organs in the human body including the heart and the lungs and still be who we are and still be alive. But we do not have any device that can replace the function of the brain, we can't do brain transplants and once the brain is physiologically dead a person cannot 'return' regardless of our spiritual beliefs. I believe that more people would have a better understanding of this if they came and spent some time in hospitals and see what we encounter every day.
- Artefact
Sara Tonen, I think that CHO followed protocol and I am certainly not getting the feeling that they were aggressive or hasty in their actions. Jahi's family present a particularly difficult case (they have been emotional and vocal and are being condemned for their interpretation of what happened - I keep urging everyone to remember that this is simply their version and not necessarily the truth but they have the right to speak it) and I see hear that many people are writing in about their frustration with the family's 'magical thinking', involving a 'media circus' and they are becoming defensive of the hospital. As a doctor that was my first response too. But I know that it will not change the outcome, it will only reinforce negative emotions in all involved. I understand that your comment is not about what the hospital did per se (it followed policy) but how they did it. I think that is a very difficult question to answer when we are only hearing the family's side right now. However, before we get angry about this we should remember that this is their legal right afforded to them by our laws and even if we disagree with it we must still defend their options. In my opinion it is the judge who made a bad call, disregarding the laws already in place for brain death and allowed this 'circus' to continue and allowed it to gain momentum by providing an arena for it.
- Artefact
Ira S. Pastor,
I'm republishing your comment without the links back to your personal web site and email addy.
Sprocket
Quote:
Actually, there are a few cases in the literature over the last several decades of supposed brain death reversal - mainly in infants and fetuses (where you may still have an active neurogenesis niche) - none ever had positive long term outcome, but the papers do exists in PubMed if you look for them - and they are hotly contested amongst thought leaders - like this one - http://www.ncbi.nlm.nih.gov/pubmed/19818943 - And do keep in mind, the brain death diagnosis does NOT constitute zero cerebral activity as is commonly mentioned in the press - it is "no cerebral activity greater than 2 microvolts" - most thought leaders in the space acknowledge residual "nests" of neuronal activity and residual blood flow do indeed exist in the brain dead - just not enough to support an "integrated whole person" - Since 1968 and the Harvard Ad Hoc Committee on Brain Death, the definition of death has remained static, in spite of 1) the major thought leaders in the space acknowledging that brain death is a process, not an event, and 2) the continued development of new technologies, including those of regenerative medicine - and on top of that, even in the year 2014 we really have no widely accepted idea on how memories are truly stored in the brain, and how much of the brain can be destroyed while maintaining identity -"
I am not a medical professional. But it seems some truly aren't grasping the finality of Jahi's condition. So in relaying how I understand it in layman terms, maybe it might help? By all means, correct me where wrong.
Jahi went into cardiac arrest soon following the post-op bleeding. I.e., her heart stopped beating. Depriving the brain of oxygen, likely causing initial severe brain damage.
Her heart was restarted by manual means (CPR?) & with medication. It has been kept beating by use of the respirator, which simulates breathing (artificially). Thus supplying oxygen to the lungs. This oxygen is needed to keep the heart beating.
There was mention of a heart medication in court docs, her body may or may not be still receiving to chemically induce/regulate beating.
Following the incident the brain began swelling, denying any further oxygen reaching it. Ultimately causing the brain & stem death of Jahi.
During the multiple tests for brain death, the respirator is shut off for a brief period to see if the patient can breathe on their own. Obviously she could not, per multi drs' prognosis. The heart would soon follow by ceasing to beat without a source of oxygen to it.
So in these terms she is not only brain dead, but her heart is only beating bc of artificial means.
If you think of it in terms of heart transplants. A deceased persons heart can be maintained & then transplanted into another body, & hopefully not rejected. So if a heart beating by artificial means were considered actual "life," any heart donor would essentially have been murdered. This is not the case of course.
The heart is a powerful muscle, not dependent on the brain to beat with medical intervention. But it is the brain that is the ultimate determinate of life or death. And a brain cannot heal itself. This is why any sort of brain damage is permanent.
In Jahi's case, blood completely stopped circulating to the brain 3 wks ago. It only takes minutes for severe damage to occur, & not much longer to cause complete death of… as is the case here.- Anon @ 11:20pm 1/4
Question: if the nurses witnessed the family administering suction to Jahi. Potentially causing the hemorrhaging, & then cardiac arrest. Would they have refrained (on assumption only per family claims) from taking over suctioning bc of medical liability in existing damage caused by the family? Although staff did resort to other life saving measures the code called for. Including, I believe, 4 transfusions.
Just a thought.
I have been following this case for over a week now and I find it incredibly frustrating that the media is not providing more questions regarding what whole brain death is and whatnit is not. Thank you so much to everyone for the excellent coverage. I do hope this ends soon and Jahi Mcmath is given the funeral she desperately needs and deserves. Such an emotionally charged case all the way around.
Following the incident the brain began swelling, denying any further oxygen reaching it. Ultimately causing the brain & stem death of Jahi.
As I understand how whole brain death can occur your above description is very key because swelling of the brain can be severe enough to cause the brain stem to be pushed downward.
That point right there is KEY in this case and is not being pointed out at all ( At least not in anything I have read online so far. The"right to life" arguments that invariably occur in these cases always get made without important distinctions and you then hear about these other cases that were never diagnosed correctly in the first place or the famous Schrivos case.
This case is beyond GRIM yet those like Huckabee will exploit it because distinctions do not get nailed down by the lazy media.
Artefact, thank you for your invaluable contribution to this thread. You are obviously well trained in matters of diplomacy and compassion and I find your professionalism nothing short of inspiring. Based on what you know, do you think anything could have been done to mitigate this unfortunate situation, or is it a case where the hospital had no other choice regarding their iron clad policy and despite all efforts, the parents simply could not be reasoned with? Or, did the judge contribute the most? I would also like to know if it is law that a death certificate be obtained within a certain number of days post dx of brain death despite the continuance of mechanical support. Please understand I do not believe there is any recovery from brain death and my concern regarding this case has nothing to do with that fantasy. In the event mechanical support is started, my religion requires that support stay in place until cardiac death. This doesn't mean providing a level of care consistent with that of a pregnant person but I'm sure it requires basic hydration & nutrition. Of course, there are many variables and each case is evaluated on its own merits but that's the general rule of thumb. And because my religion is very common, I'm wondering why cases like this aren't headlines on a daily basis? Also, the legal requirements for brain death seem rather lax. I know I'd want at least a few weeks of "no change" coupled by numerous scans & at least two opinions. In other words, the Zack Dunlap case should have taught us 36 hrs isn't always quite long enough to write someone off as brain dead and scans can be misread and/or faulty. I think my state only requires six hours. I am not making a comparison between Dunlap & McMath, I realize my concerns are all over the place and in no particular order, so for that I apologize. I could very well be in the same position of that of the McMath family but for very different reasons so I am interested in this case not because I think there's hope of recovery, but because I would like to avoid such a conflict if at all possible should tragedy strike my family.
Artefact said; 'If you are struggling to understand whole brain death and why this is termed death (therefore no life support is being provided) look at it this way: a human can have mechanical equipment replace their heart, we use dialysis machines for kidney failure, we use insulin in pancreatic failure, we can transplant most other organs in the human body including the heart and the lungs and still be who we are and still be alive. But we do not have any device that can replace the function of the brain, we can't do brain transplants and once the brain is physiologically dead a person cannot 'return' regardless of our spiritual beliefs.' This is the best explanation I have read so far on the importance and fragility of the brain to human life and character. As you said todate there is no mechanical intervention on earth that can replace the function of the brain once it has experience trauma. Rest in peace in the arms of our heavenly Father Jahi.
I am not a medical professional but I do have a very basic question for those contributing to this thread who are.
From everything I read, this child was not a good candidate for this risky procedure. And it seems that previous surgeries had failed. If these procedures weren't included in her records, why? I am assuming she had some form of insurance (private, Medicaid, whatever) and records were kept.
If CPAP is an effective and safe alternative why would a surgeon resort to risky surgery and jeopardize himself and his hospital?
Wow! Way to break it down folks! Boy do people need to read this! I commend you caligirl on getting these fact s out here to a confused and misinformed public. I have learned tons from reading your article and informative replies from posters with medical knowledge. I am just a curious soul who has been watching the events unfold in the media with dismay. I have no trouble grasping the utter finality of Jahis sad situation, and feel like something is fishy about this family. But thats just my impression, I could be wrong about them. I have a hard time understanding how they can justify their denial at this point. I understand they must be devastated over losing this child, but how can they aggressively ignore sething as black and white as what death is? Surely the medical personnel are well versed in breaking bad news to families like this, and I'm sure they left little room for misunderstanding when explaining this childs true condition.
Here is an interesting article about brain-dead patients kept on ventilators for years. I believe they also had feeding/medication but we're sustained for years and years, mostly at home. I think it's unethical and morbid, particularly the case of a 4 yr old who was artificially sustained for more than a decade (even grew at a normal rate) all the while without a brain.. The article gives some insight as to what happens to the brain following brain death as well as to the body- I am referring this as FYI only and do not support the route this family is taking.. But I do feel it is their right to do so, since they cannot hurt her further. I think this whole thing is a sad shame, and hate myself for getting sucked into this to the point that I am reading medical journals.. I do appreciate this forum, particularly Artefact.
http://robertaconnor.blogspot.com/2011/02/shewmon-brain-or-no-brain-person-is.html
Thank you so much for this very informative blog and which has also helped me understand why my sister's life support was disconnected after the diagnosis of brain death. My thoughts go to Jahi and hope she may RIP soon!
I am not an American but I do have some (legal) questions to ask...
Does the agreement for the removal of the body not risk leading to jurisprudence, meaning can relatives now take legally dead peoples body's anywhere they want and "store" (don't mean to sound disrespectful here) however they want?
How can an "outpatient" care centre accept and offer "care" for a body which is accompanied by a death certificate? Would they not need a different license/certificate, either as a funeral home or private health care facility needing to meet certain standards?
On the New Beginnings website it is stated that the family lawyer is now working together with, I think, a self professed "forensic analyst", is that the normal practice in a "TBI" centre?
Thank you again for all the incredible information!
I have a big problem with the judge (Grillo) in this case. My understanding is that CA statutes are very clear on brain death - 2 independant evaluations by MDs knowledgeable in the criteria of brain death, lack of electrical brain activity, lack of blood flow, absence of response to stimuli. Once brain death is declared, call the coroner. Withdrawal of support is sometimes delayed by the facility out of compassion so that the family may assemble to say their last goodbyes, or delayed if the pt/family has agreed to organ donation. rarely beyond 48 hrs. In this case, the family wanted 3 additional evaluations, and the hospital complied. All 3 agreed that brain death criteria were met. By then the family had an attorney and went to court to get another independant evaluation, and the judge agreed, arranged for the evaluation by the Stanford MD and issued a TRO so it could be completed. When the Stanford MD agreed with brain death (the 6th evaluation), the judge declared her legally dead and set a date for expiration of the TRO to give the family more time to adjust to it. Then the family demanded ANOTHER extension in order to make arrangements for transfer to another facility.
So here is the problem - the CA law was enacted by an elected legislature and signed by the governor. There is no allowance for delays to accomodate families who are in emotional distress, delays for additional evaluations at tax payer expense, or delays to arrange for transfer to a vent-capable SNF. So why does Grillo believe that he can legislate from the bench, and alter the CA statutes at will? It seems to me that he is issuing his rulings based on his own emotions or to placate an emotional family, rather than ruling according to the law. In doing so, he has ignored the psychological ramifications of forcing dedicated and highly skilled critical care nurses, MDs and respiratory therapists to bathe, clothe, and care for a corpse day and night. He needs to rule by the law, or face recall.
The NY facility is not licensed for inpatient care. Nor do they have facilities to provide 'acute' care. As was well described in comments from Artefact, it takes a whole lot to care for a ventillator-dependent body/patient.
Questions: Is it *legal* for them to accept the body? Would NY dept of health object? Can they get a license if they hire the right personnel? Is it even remotely feasible that they are able to accept the body?
@ anon JANUARY 5, 2014 AT 6:30 PM -- it's because lower level judges don't want to be held responsible for 'pulling the plug'. Especially in high-profile cases, it's pretty standard to see this kind of 'pass the buck' mentality. I know, I know, you would take the high road...but really think about it...you would probably pass the buck too if in Grillo's shoes. I know I would, and history supports me.
A lot of thoughtful comments on this thread, and wanted to ask two questions below, especially to those medically qualified to answer (Artefact and Tsu Dho Nimh and a number of others--thanks for the great info!).
Personally, it makes no difference to me if a family wants to privately fund the ventilation of a person considered legally dead -- to each there own. I am curious, though, about the questions below which to me address 1) the validity of some of the claims that defend the legal definition of dead by brain death (which sidesteps the many other defenses for why it's best as a society to define brain dead people as legally dead), and 2) how long in theory a brain dead person can be kept in homeostasis (I believe this is the correct term?)
1) Do those correctly diagnosed as brain dead (not comatose, and not in a persistent vegetative state, but brain dead to the point of being considered legally dead) ever 'come back'? On the one side, people point out Zach Dunlap or pubmed 19818943 (about the infant and a number of other cases), and on the other side are people like David Magnus (Director of the Stanford Center for Biomedical Ethics) making statements like “There’s no reported case of a correct diagnosis of brain death where anybody comes back”
2) In those correctly diagnosed as brain dead (again not comatose, and not in a persistent vegetative state, but brain dead to the point of being considered legally dead), theoretically could these brain dead people be kept 'alive looking' internally and externally (not quasi-decomposing flesh or organs, which I believe in medical terms is called homeostasis) to the extent of the usual limits of human life (~100 years)? Sounds like the best studied examples are of brain pregnant women, who existed in this state for up to 135 days. Why not longer? If the somatic regimens and technology already exist, why not years or decades? Could I be reading about Jahi in 2050? If so, would she grow from a 13 year old to a young woman, then progress in age until cardiac failure caused by clogged arteries (or something like that)? If not, why not?
Thanks.
Unfortunately, people with the 'right to life' agenda, like Huckabee, plus the anti-Affordable Care Act crowd (fearing fictitious 'death panels'), are using this tragic situation to inflame those prone to magical thinking & who eschew science. I even have a family member who, when her fetus died, refused to allow doctors to remove it, in the belief it would spontaneously spring back to life. She risked her life, potentially leaving her born children motherless, rather than be viewed as defying her religiously political community. While I recoil from these superstitions, I realize people are trapped by their beliefs, & manipulated by powerful advocates who are without conscience as they force others to enforce those beliefs & values. It is unconstitutional & it is ugly.
I'm afraid there are folks who have a political & financial interest in causing this poor child, surely now into an organ & fleshy decomposition process, to be a pawn in their selfish pursuits. Children's Hospital saved my son... there were times I wanted to scream, & even staff who were not sensitive. But I know the one thing that unites their every move, & that's the care of the patient. Maybe families don't get as much support… esp. if they are belligerent… but the patient gets every benefit science can offer there… w/o concern for 'who pays'… they do the best they can. Attorney Dolan needs to face ethics charges… inflaming this grotesque situation, pandering to a misinformed public… he should lose his license.
This video shows how preoccupied with money the uncle is. He calls two hundred and fifty thousand dollars "chump change." His goal is money. He is influencing the mother and using her grief and/or guilt to facilitate his very obvious desire for money. He doesn't discuss his love for his niece. He doesn't discuss medical treatment during week one, which is when this video was taken. Instead, he talks about money.
http://www.ktvu.com/videos/news/mcmath-vigil-raw-video-of-jahi-mcmaths-mothers/vCLZHH/
Someone asked about the death certificate earlier. Our nephew was admitted for hypoxic traumatic brain injury due to a sudden onset asthma attack. As in Zach's case, tests were run after about 36 hours. Our nephew was an organ donor (barely 16, yet made a decision that would ultimately be the one thing that helped us all find comfort in the most tragic situation.) Due to that fact, the tests were performed again before the transplant team could take over his body. Secondary tests are performed by an independent team for ethical reasons. The hospital was sympathetic, yet completely clear with the family that after the first set of tests, his care changed from "life support" to organ preservation and what changes to expect with his body- including "twitches and movement". They explained that once declared brain dead, the sedatives that were used to keep him in a coma (propyfol) and anti-seizure medications would be discontinued. The second tests would be completed after those meds were out of his system. He was in the hospital for 6 days. He was only a hospital patient for 3. Once they declared a time of death, an independent team came in, ran all the tests again to confirm, and then his body was released by the coroner to the transplant team. His death certificate reads 3 days prior to his transplant date. Our sweet nephew saved 4 lives, and his heart continues to beat. I pray daily for Jahi's family, and for the up to 7 people who could have lived and honored her memory. Rest in Peace sweet girl.
@ Anon 7:38: I perused the uncle's FB and twitter pages, and did not find one single pic of him with the niece he purports so much to love and never to stop fighting for. Mostly (semi-nude) photos of himself showing offa dn patting himself on the back. To me he seems opportunistic and possessed with the desire for fame and money.
https://www.facebook.com/MrGoFresh/photos
https://twitter.com/_iamOMARI
While I'm aware this is an extremely sad situation, the mothers body language (constantly covering mouth, face) is very, very off. Covering mouths is one of the easiest ways to tell someone is being dishonest. The lack of tears is a little odd too but some people just plain do not cry in public so I don't think that's suspicious. It's just ominous.
JAHI UNCLE JUST POSTED THIS!!! DID THEY MOVE HER?? https://twitter.com/_iamOMARI/status/420048959365586944
ALSO JUST NOW POSTED THIS PRESS CONF!
https://twitter.com/_iamOMARI/status/420051286877147136
Dear CaliGirl9,
I am so glad I came across this message board. I have been commenting on other message boards, and I just cannot believe how rude and nasty people have been. I haven't read all of the comments here, so I may be a little "out of the loop" so to speak, but I do want to ask you something regarding this sad situation.
I have read comments on other boards that stated the girl's grandmother had been suctioning her airways and that may have caused damage. I also read that they gave her a popsicle and she may have pushed it too far down into the stitches and caused damage as well. I just cannot believe that a hospital would allow this to have taken place, because there must be strict rules in place especially in a ICU. It has been alleged there was a "parade" of family members visiting Jahi. What is your opinion of this?
Also, if Jahi is brain dead, would her lungs expell carbon dioxide? For how long?
The dedicated nurses at Children's Hospital Oakland are no longer caring for a dead body.
For that I'm thankful.
https://twitter.com/mgafni/status/420052228045426689
Matthias Gafni@mgafni
#BREAKING: Body of #JahiMcMath released to coroner who gave to her mother, per @Hospital4Kids #PrayersForJahi
One case I don't hear people talking about, that informs the Jahi case, is that of Dutch Prince Friso. Friso was not brain dead, rather severely brain damaged (somewhere between a coma and a persistent vegetative state), so he was legally alive as opposed to Jahi who is legally dead. But from a 'belief' standpoint -- the families were very similar, hoping against hope for the person to 'come back'.
Of course, being European aristocracy gave him unlimited funds to hire expertise, facilities, technology, etc. After about a year of what was undoubtedly the best-of-the-best medical treatment, the Royal family decided to 'pull the plug' and he passed away.
Granted, Jahi has some powerful interests behind her. Perhaps even in the financial realm of the Dutch Royal family? Probably not.
However, Jahi's situation is much more dire medically (being legally dead), and probably significantly disadvantaged financially as well.
My point is this: take a note from those Royals who know how to do one thing well, if nothing else. Be dignified.
Die with dignity. What memories do you leave behind? What stories do people tell of you after you're gone?
Even though she or her body has been moved, are we still welcome to fire off some questions?
If yes, I saw on the uncle's twitter account that he was "screaming" for a CA licensed pediatrician, prob to insert the tubes. Now that she has first been handed over to the coroner's office, meaning confirmed and certified as being dead I presume, is it allowed for a doctor to perform an operation or such a procedure on a dead body?
I expect it won't be long before the media finds out where Jahi's body was taken. Just have to sit back and be patient.
It will be interesting to see what develops from here.
NewsBreaker@NewsBreaker
NEW DETAILS: Jahi McMath, 13, left a Calif. hospital while attached to a ventilator but without a feeding tube http://bit.ly/19YKRll - @AP
The Alameda County Coroner issued a death certificate, but the death certificate has to be accepted by the health department (is this a state institution, or federal?) to be considered final. However, the health department will not accept the death certificate because it's incomplete. Death certificates need a cause of death, as determined in an autopsy!
I'm no lawyer, but what all this seems to mean is that Jahi fits the legal definition of death, and there is a paper trail documenting her death, but she is not as of yet considered dead by the state of CA?
It's like a legal representation of theological limbo.
Perhaps when Jahi was released from the hospital to the coroner (then in turn to the Mother), the coroner could complete cause of death in some way other than autopsy?
The death certificate seems important for two reasons: 1 insurance most likely does not cover people who have completed death certificates, and 2) any lawsuits for non-dead people have much higher settlements than for dead people (which in the state of CA has a cap of 250k).
I am really curious about if this death certificate was completed and the health dept. accepted it, if anyone has any info?
Thanks.
Rectification on Friso...
Friso was not on a ventilator and after spending 15 months in a London hospital (there is no long term care facility for PVS-coma patients over 25 yrs of age in The Netherlands) and his wife and children live in London, he was discretely transferred to his mother's palace in The Hague in June or July to "pass the summer. By that time he showed signs of minimal consciousness but died from "complications as a result of the brain damage," as it was worded by the royal family's press office.
They did not pull the plug, which was evident by the fact that the king (his brother) and queen were away on holiday in Greece the day he passed away.
You are right though that it all went in a dignified manner
and must have been horrid for the family and the then queen Beatrix
I know a friend passed away, death cerf issued, and after autopsy, it was revised with cause of death later. I am curious about the diff in laws in NY compared to CA about caring for a dead person. What kind of hoops there. Facility not lic other than owners HairStylist and real estate lic and cemetery owner lic. Are they going to use those? sarc. When heart stops, who has jurisdiction? lots of questions
@Jacqueline W. excellent point & seems like common sense to me.
It is disgraceful, yet not surprising, how MSM has distorted the facts in this case. Anything to play on sympathy & create drama to keep a story generating interest.
If I see "life support" one more time, I will scream! Worse, used in conjunction with "death certificate," & "coroner" details. Really?!
The latest attorney statement accuses the hospital of denying her food for 26 days! Essentially depriving the brain of needed nutrients to heal. < either this is the most medically ignorant attorney on the planet, or he is lying knowingly through his teeth! Despicable! -anon 1/4 @ 11:20pm & 1/5 (CT)
The unscrupulous attorney Dolan stated at his 'press conference' on tonite's news... that while the family is sure Jahi will recover, it has been made 'more difficult' because "she has been treated as a dead person medically" for these weeks... i.e. when she doesn't 'wake up' it will be Children's fault. It is exactly clear they are planning a huge lawsuit & building in language to preempt interpretation of the eventual outcome.
I cannot understand the elation, jubilation of the uncle & crowd outside the hospital... they must believe fantasy; that only thing keeping her non-responsive has been the care at CHO. Like movies or scary scenes of raising the dead with potions, or old Frankenstein flicks... such an air of horror movie non-reality... while uncle talks about $350 million settlements. Jahi is gone, tonite I am feeling for the good folks at Children's right now... they'll need counseling. They fight to save lives & keep families together... this is macabre, dark & totally discouraging.
Sorry for the long breaks between my posts and that I haven't had a chance to reply to some questions - some heavy shifts and family commitments take precedence sometimes (most of the other medical people here know that it's hard to maintain a work life balance in the health system). I'm very glad that my comments have allowed some people to understand the process of brain death and ICU care a little better and I wish that I could talk through it with some of you because exchanging comments seems to be tricky and may not always convey concepts well. I feel a sense of relief that Jahi has been moved from CHO and that for now at least the media firestorm might settle down somewhat. Some of the deeply racist, uneducated and unfeeling comments I have read on other articles have been very disheartening. This tragic situation has revealed a lot about the public's understanding of brain death, the intricacies of medical resuscitation, the process of grief, how we look for someone to blame (the hospital versus Jahi's family) and also key legal issues with regards to medical services, hospital policy and the power of the courts to override legal precedents.
Those of us who work regularly in ICU know that our specialty more than others is on the frontier of ethical issues because we often have to evaluate situations that pertain to life and death. We deal with some of the sickest people in the hospital, we deal with complicated equipment, we deal with lives that are constantly hanging in the balance where we measure changes minute to minute and have to put it all together to interpret the bigger picture and make the right decisions for patients in the context of the limited resources of a health system already under strain. We have the highest mortality rate in our specialty, we deal with death daily (if we are a moderate sized unit that accepts trauma patients). We also consume the most money out of all the specialties in the hospital because, as you can imagine, our equipment and medicines do not come cheap.
- Artefact
We are also the specialty that must cultivate our communication skills because we deal with families more than patients. Each of my thirty two patients in my current unit, excluding the high-dependency unit, are sedated and on ventilators so I don't get to speak to them or ask them questions. Instead I communicate with their families. I have to help these families understand what is happening to their loved one, help them deal with the shock of seeing them hooked up to multiple machines, help them understand our decision making and the risks and benefits of every intervention that we initiate. It's a lot to take in, especially when things have happened suddenly. It requires me (and all of the wonderful nurses, physiotherapists and technicians that I work with) to practice compassion every day. This situation with Jahi's family is a stark example of our calling to be compassionate whilst still being clear in our clinical decisions and medical therapies. It is an example of why and how we must engage with families to help them understand the incredible complexities of the human body, the extreme challenges of trauma and severe illness, the myriad details that we know, document and address every day in the treatment of our patients. ICU is a specialty that is so many shades of grey.
I guess this is what has frustrated me about some of the comments even on this site. This situation is not one of blaming the hospital (for the surgery, for the resuscitation, for the diagnosis of brain death, for their supposed treatment of Jahi and her family after her diagnosis of brain death) or of blaming Jahi's family (for her weight, for not trying CPAP, for giving her something to eat, for suctioning her, for not expressing grief the way we expect them to, for not understanding, for not accepting, for going through legal channels and fighting the system in a way that we have interpreted as selfish). This has been a complex and difficult case and simply can't be characterized in such a black and white way. The only thing that has been definite about the case is that Jahi is most certainly brain dead and therefore her situation is irreversible rendering her legally deceased. I can see that the situation has left people with strong feelings and beliefs that they have spoken up about and I respect that everyone has the right to their opinions. However, I still believe that it is important on sites like this one, that promote fair and accurate reporting of events and situations, it is vital that the site administrators remain unbiased in their discussion of facts. It is not easy to do and I am grateful to see many people who are defending the work of the hospital and it's medical staff. Integrity can only be maintained if we are aware of our own biases and if we acknowledge them and do our best to work with and around them.
-Artefact
A friend of mine (who happens to be an ICU Doctor and has been for 5 years) said something to me tonight. It may seem a little crude but here we go:
"Whole brain and brain stem death with no circulation is the equivalent of being decapitated. The body, as long as there is ventilation to the nodes of the heart and perfusion to the visceral organs, will continue to function to a degreee but no recovery of life is possible. Jahi is basically a Frankenstein-esque headless corpse, animated by machines."
Now, to address several questions. Given that there has been a change in the situation and Jahi has been removed from CHO the people who previously posted these questions may no longer be looking for answers but I will briefly address some of them. Firstly, with respect to Jahi's obstructive sleep apnoa - I have discussed paediatric OSA with a paediatric specialist colleague of mine who states that the treatment options are different compared with adult OSA. While weight loss is still encouraged it is more common to proceed to surgery because hereditary large adenoids are far more common in paediatric OSA than in adult OSA and these can only be fixed surgically. Therefore Jahi's surgeries were not unreasonable and sometimes several procedures are necessary until a good outcome is achieved. This should put to rest the comments stating that Jahi's family were irresponsible in opting for surgery for her or questioning the reason that doctors advised surgery in a child.
Secondly, many people have been asking about suctioning in the post operative period. Once again this is speculative including no clear information on the type of suction device used. Jahi's family have stated that they suctioned her when she began bleeding but I have read at least two articles that state that Jahi's mother was given the suction device by a nurse to use. Suctioning performed aggressively or using a hard tipped suction device can in fact exacerbate bleeding. Usually we attempt to pack the mouth, nose and throat region to tamponade bleeding following a mouth, nose or throat surgical procedure. This helps to settle bleeding better but can be difficult to do without compromising the patient's airway. In very complicated or risky patients we keep them intubated post-operatively for twelve hours with packs in their throats and mouth to stabilize all bleeding sites and maintain a secure airway. We then extubate them the next day and monitor their haemostasis.
There have been conflicting comments regarding the family being irresponsible to encourage Jahi to eat post-op and suctioning her without supervision and also comments stating that the CHO ICU is an open unit with only curtains between bays allowing nurses to observe all bays so therefore the family's claims that they called for nurses and received no help is inaccurate. ICU is an area of one-to-one nursing. This means that there should be nursing staff present all of the time and if so they should have re-directed Jahi's family not to feed her or suction her. If they were absent then Jahi's family are accurate in stating that they didn't respond to her deterioration. This is the danger in speculation - which of these things occurred? Were the staff present or absent? We cannot know and we can't blame either group of people without clear evidence.
- Artefact
It was stated in a recent Mail Online article, the body was released to the mother by coroner. Then transported by ambulance to the mother's "HOME"!?! There was also mention of intent for some long term facility to care for.
But as I understood it to mean, the family has essentially drug a corpse home with them in the interim bc they didn't like the Drs' prognosis. Horrifying! Those poor siblings will have nightmares for life.
-CT
According to this article, the family has already removed her body from Children's.
http://www.cnn.com/2014/01/06/health/jahi-mcmath-girl-brain-dead
Reading the comments on this blog reveals that people are under the impression that Jahi had three separate surgeries to correct her apnea. She had the three surgeries in tandem, NOT separately.
People keep mentioning the Zack Dunlap case as an example of "someone coming back from brain death".
Actually, the Dunlap case is a textbook of how NOT to do a diagnosis of brain death.
1. They initiated the tests WAY too soon. 36 hours after trauma is too soon. But, we are talking _days_, not _weeks_ in how long you should wait. Drugs, hypothermia, and head trauma can all cause TEMPORARY (and reverseable) loss of measureable blood flow and significant measureable electrical activity.
2. They ran ONE PET scan. The standard is TWO PET scans, at significant intervals (I have seen 6, 12, and 24 hour intervals, depending on jurisdiction).
3. The patient was apparantly exhibiting textbook responses to physical stimuli that indicated that he had NOT suffered whole brain death.
i.e., Zack Dunlap was misdiagnosed in an egregious breach of the medical standards of practice. He did NOT "recover after being brain dead".
Jahi doesn't fall into ANY of the issues that confuse the Dunlap case. She is dead, and has been dead since at least 12 Dec 2013.
The only reason a death certificate has been issued while the heart still beats is that the family has insisted on keeping the heart beating through artifical means (yes - the heart beat is ENTIRELY sustained by artifical means - i.e., if you turned the ventilator off, it would stop in about a minute, beacue it wouldnt; be getting the artifical support of oxygen ventilation) more than three weeks after the girl _died_. Yet they insist that according to their medical beliefs, she isn't dead until the heart THEY ORDERED BE KEPT BEATING ARTIFICALLY stops "on its own".
Of course, the longer her body is allowed to degrade while kept artifically and incompletely preserved via medical "support", the less the chance that an autopsy will be able to determine whether the cause of death was ultimately malpractice by the hospital or noncompliance by the family.
That DOES affect the payoff. If there is NO malpractice, the family and lawyer get _nothing_, AND the family will be (theoretically, not that I expect them to EVER pay) on teh hook for the cost of treatments, certainly for teh use of resources after 12 Dec 2013.
If there _was_ malpractice, there is a reasonable chance they can get the hospital to eat the costs, even for the post-mortem resources.
I'd like to know how this New Beginnings Outpatient Faciity can be licensed to care for Jahi. They are NOT licensed to care for someone who is on a ventilator. They cannot get that licensing overnight.
Plus, there's the fact that the East coast is in the midst of another blizzard right now with high winds. below freezing temps. No medical helicopter is going to fly a non-emergent transport anywhere. Any doctor who would perform a trach and a feeding tube on a dead person ought to have their license revoked.
The judge who kept granting the family the TRO's ought to be permanently disbarred from ever practicing LAW again.
I hope the truth comes out how the family kept parading visitors in and out, fed Jahi ice cream and a hamburger(as I've read this on more than one website in the comment section) in the immediate post-op period..so I believe that they had something to do with the post-op hemorrhage and cardiac arrest that lead to the brain death of their daughter. I
feel they are fighting for her life because they feel a tremendous amount of guilt. But enough is enough! This circus has gone on 3 weeks too long!
@Anon JANUARY 5, 2014 AT 11:58 PM - "uncle talks about $350 million settlements" - where was this reported?
A follow on question, would the family sue CHO for the money to keep Jahi's body on support? What is the likelihood of that?
The attorney for the family is now stating that Jahi's body is in such poor condition that she might not survive. See this article:
http://www.contracostatimes.com/news/ci_24853880/jahi-mcmath-brain-dead-girl-moved-undisclosed-care
"He also said the girl's body had "deteriorated so badly" during her treatment at the hospital that the long-term prognosis for survival is not an optimistic one.
"She's in very bad shape," he said. "Right now, we don't know if she's going to make it."
I just want to say that as an attorney who works primarily on health care-related cases, who serves as legal guardian for several severely disabled individuals who can't make their own decisions, and who has done numerous investigations for the local family court on when to remove life sustaining apparatus, I find this attorney's behavior and comments to be reprehensible. I understand the need to zealously represent a client. I certainly understand how difficult it is to deal with people suffering from extreme grief and denial. But I cannot understand, no matter how hard I try, how he can make such blatant misstatements of fact.
This person is allegedly a personal injury attorney. He must have some experience with looking at a medical record, and certainly must operate his practice on the basic premise that doctors have expertise which non-medical personnel do not. (I'm sure he has relied on plenty of doctors' evaluations to support a claim of injury when it suits his client's purposes. Yet in this case he acts like not one expert who has opined that this child is dead is entitled to even the slightest acknowledgement.)
I would not be surprised if the family finally gave up and removed the body because the clock was ticking down, and it serves them better to announce that Jahi "died" away from the hospital so that no one will be able to say exactly what happened in the end. Had they waited until Tuesday, when CHO could have removed the ventilator, everything that happened would have been well-documented. Now that they have Jahi's body, they can claim anything they like, including that she was becoming more responsive but, as the attorney seems to be suggesting in the press statement I just quoted, they can claim that CHO took such bad care of her body that she was too weak to heal.
My heart breaks for the family, in that I am from a family that lost a child. I know what it is like to touch a deceased child who is still warm. There are no words to express that grief, and my sympathies go out to them on the loss of Jahi. From the pictues she looks to have been a lovely girl with a beautiful smile.
But this attorney's behavior in terms of his statements to the press is still reprehensible.
I live near by CHO, and - for purely selfish reasons - I'm glad that the media circus will be moving on elsewhere.
As for where that is... as has been mentioned, someone at the destination (be it a funeral home or a "clinic") is bound to leak information to the media, and it'll start again...
It's a horrific situation and I really hope the family can finally get past this strange state of denial that they're in. Jahi needs a funeral, not a feeding tube.
Thank you all who have created and contributed to this blog. It's been very insightful and has cleared up a lot of confusion I had with Jahi's very sad situation. There is one question that burns in my mind though. Where is this sweet girl's soul?" To me, when a person is absolutely dead, that person's soul has permanently left their physical body. As I understand Jahi is brain dead, but not cardiac dead. I've read accounts where Doctors have said things like, "when the life machines are turned off, Jahi will likely die within 10 minutes" and that "her death will be painless." That tells me that technically Jahi is not 100% completely dead, right? I worry that this girl's soul hasn't left her physical body permanently and is sadly stuck in limbo (so-to-speak).
I have a legal question - In the brief filed Dec 30, page 3 of 16 right under the headline of "Facts" Mr Dolan writes...
"On Dec 9, 2013 Jahi McMath underwent a routine tonsillectomy...."
Is this not at minimum contempt of court? Or defrauding the court? Can someone put in any inaccurate language they want to in court documents?
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Jahi McMath: Merely Dead, or Really Most Sincerely Dead?
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