<p>I remember reading similar stuff: girl was in the ICU, could not talk because of “mucus” in here throat, mucus was actually blood, grandma started suctioning, they were given a bucket, could not find any staff because of the changing shift, etc. Very bizarre.</p>
<p>I am in complete agreement that the child has passed ( and should be removed from the ventilator) but find Kluge’s arguments thought provoking. When I googled the topic I found a group of people who refer to brain dead patients on a resperator as BHC (beating heart cadaver’s). They have stuff posted about retrieving organs when a patient wasn’t truly brain dead and the belief that some BHC’s might feel pain when their organs are harvested. </p>
<p>If the family is relying on stories such as these they might believe their daughter is still “alive.” I find this case fascinating (sorry to all those who find it obnoxious) and necessary as medical advances blur the lines (especially to those who don’t really understand the science).</p>
<p>Off topic, but I remember getting my tonsils out when I was barely six.
I was so p oed that it was done during my Xmas break that I refused the Popsicle.
I held out for ice cream.
;)</p>
<p>Wasn’t she out of the ICU by the time of the Popsicle?</p>
<p>
No, it’s not. All of the scientists (that I am referring to) agree on the scientific facts. But “dead” isn’t a scientific term when the majority of the person’s body is living tissue, which is the situation we face here. Equating “brain dead” with “dead” is a value judgment. The UCLA neurologist whose article I referenced earlier was discussing the medical theory underlying one aspect of the argument that “brain dead” means “dead” - the assertion that the brain was a “unifying” organ without which the rest of the body was just “tissue.” His study found that that simply wasn’t actually true; that all of the organs of the body are interrelated to an extent and independent to an extent. The articles I saw disagreeing with him did not dispute his scientific findings, but sort of argued around that - not unreasonably - by addressing the part he expressly did not dispute (or address, stating it was an issue for another day) the assertion that the brain is the seat of “personhood,” without which the “person” no longer has an existence.</p>
<p>But those are not scientific arguments; they are policy arguments, like arguing that the theory of evolution supports eugenics. Few would support that view these days (although many have in the past) but that’s due to policy analysis, not science.</p>
<p>Bleeding a lot afterwards is not that unusual when you’re older. Friend of D raced to the emergency room in the middle of night when her scabs came off a week or so later. She’s a singer so it was pretty traumatic.</p>
<p>[Document:</a> Appeal describes Jahi McMath’s post-surgical bleeding before heart attack, brain death - ContraCostaTimes.com](<a href=“http://www.contracostatimes.com/news/ci_24819771/document-appeal-describes-jahi-mcmaths-post-surgical-bleeding]Document:”>http://www.contracostatimes.com/news/ci_24819771/document-appeal-describes-jahi-mcmaths-post-surgical-bleeding)</p>
<p>I stand corrected, she asked for the popsicle in recovery. Bleeding occurred later while in the ICU.</p>
<p>Bleeding and expulsion of clots after oral surgery and sinus surgery is not uncommon. Now, if the grandmother panicked and began suctioning the surgical site on her own, she could have caused a massive hemorrhage (dislodging of clot and/or opening up of surgical site). I’m not saying this is what happened, but it could have happened. I do not believe that any ICU staff would hand off the medical care of an ICU newly post-op pediatric patient to a grandmother.</p>
<p>Right now, we’re only hearing Mom and Grandma’s version of the story. Their perspective as the loving mother and grandmother of a little girl who experienced complications from a not so routine surgery which combined three different procedures.</p>
<p>I’ve been thinking a lot about this tragic case since I started the thread last week, but have been out of town and didn’t have time to comment further. Some random thoughts:</p>
<p>The description of what happens to the brain after a prolonged lack of oxygen is horrific; how can the family not see this process happening as they sit by Jahi’s bedside? The girl’s brain can no longer regulate body temperature, blood pressure, electrolyte balance, and her heart is not pumping on its own. It’s unfathomable that this isn’t recognized by her mother and grandmother. The uncle initially seemed to understand that his niece had suffered an irreversible loss of blood to her brain and was in fact dead, but he changed his tune about a week after the surgery.</p>
<p>If death doesn’t come until the heart stops beating, this would preclude all of the heart transplants that have occurred over the past 47 years.</p>
<p>I had read that the family’s attorney has asked Children’s Hospital to pay his fee for taking the case to court. This was apparently in the court filing yesterday although I can’t find the original source. Meanwhile he continues to write self-serving columns in the SF Examiner:</p>
<p>[Behind</a> the scenes of fight over Jahi McMath?s life | Christopher Dolan | San Francisco | San Francisco Examiner](<a href=“http://www.sfexaminer.com/sanfrancisco/behind-the-scenes-of-fight-over-jahi-mcmaths-life/Content?oid=2663281]Behind”>http://www.sfexaminer.com/sanfrancisco/behind-the-scenes-of-fight-over-jahi-mcmaths-life/Content?oid=2663281)</p>
<p>Responding to the comment about suctioning above, here’s the original quote:</p>
<p>
</p>
<p>[Oakland</a> 8th Grader “Brain Dead” After Tonsillectomy | NBC Bay Area](<a href=“Oakland 8th Grader “Brain Dead” After Tonsillectomy – NBC Bay Area”>Oakland 8th Grader “Brain Dead” After Tonsillectomy – NBC Bay Area)</p>
<p>My S had jaw surgery this summer and was given a suction machine to suction his own blood.</p>
<p>“The description of what happens to the brain after a prolonged lack of oxygen is horrific; how can the family not see this process happening as they sit by Jahi’s bedside? The girl’s brain can no longer regulate body temperature, blood pressure, electrolyte balance, and her heart is not pumping on its own. It’s unfathomable that this isn’t recognized by her mother and grandmother.”</p>
<p>One quote from the mother is to the effect of “my baby’s alive because she’s warm to the touch and her kidneys produce urine and I see her chest rise and fall.” The mother doesn’t understand that this is all an artificial byproduct.</p>
<p>
</p>
<p>Yes, we keep “buckets” in the ICU to handle excessive bleeding, especially during shift change. Once the “bucket” is full, the families notify us and we start to pay attention. </p>
<p>I would be very interested to read the documentation which is part of the medical record, i.e. the other side of the story.</p>
<p>December 27 video:
[Raw</a> Video: McMath Lawyer, Hospital Spokesperson Confront Each Other « CBS San Francisco](<a href=“CBS Bay Area - Breaking Local News, First Alert Weather & Sports”>CBS Bay Area - Breaking Local News, First Alert Weather & Sports)</p>
<p>December 27 video (“Dr. Paul Byrne says Jahi McMath ‘is not truly dead’”):
<a href=“Videos – NBC Bay Area”>Videos – NBC Bay Area;
<p>
</p>
<p>Just affirming that your experience (although in hindsight, I shouldn’t have asked it as a question - that was confusing) is very common (for those on CC who may not have experienced what you’ve been through) - your family signed her up for hospice, which made it clear that you wanted no interventions which would prolong her suffering, but only to keep her comfortable. And if, God forbid, she did develop some other complication, it wouldn’t be treated aggressively because that would likely cause more suffering. I was trying to illustrate, via your MIL’s experience, that in many, many situations of dementia/Alzheimer’s, families make the kinds of decisions that yours did, which keeps a patient comfortable, but doesn’t do anything to either hasten death, or slow it down. Once a person has developed severe dementia/Alzheimer’s, almost every one of them ends up in some sort of facility or 24-hour care situation (at home with paid caregivers). Some people on CC are making comparisons between care for the elderly and this girl, that I don’t think are realistic. </p>
<p>And yes, I have seen many situations where a patient has not recognized any family members for months, but then someone sings a familiar song, or says a familiar prayer, and you see a glimmer in their eye or they say something that lets you know they know who you are. And people are very grateful for those moments.</p>
<p>Limewine,
Posters here seem to “understand science”. Some may have more direct experience with healthcare matters, but everyone seems to have a core understanding of the scientific principles here. What I think is at issue is the degree to which a person or family’s religious, spiritual, emotional or philosophical beliefs are considered in a healthcare facility. And while these issues intertwine (which is why clergy are often brought in by family or visit as matter of routine), they don’t direct the healthcare decisions. They are certainly an important component of the treatment process and should be considered part of the treatment team when so desired by patients and family, and of course ethics committees are a direct part of the treatment process in certain circumstances. But I don’t think religious or philosophical beliefs should direct or trump treatment or medical decisions in non religious based medical facilities. It should be a cooperative process, as I believe is done in religious affiliated facilities.</p>
<p>
</p>
<p>Yet that happens all the time. Just consider that screwy Texas law that forces women to be human/mechanical incubators for fetuses. That case is a lot more troubling to me than this one.</p>
<p>That is very disturbing to me also, because imo, it is abusive to force her family members into that macabre situation.</p>
<p>It is indeed very troubling. Apparently, 11 other states have similar laws limiting women’s rights to have DNR. This paragraph has the exact words of the TX law:</p>
<p>[Bioethicist:</a> Texas shouldn’t force life support on pregnant woman - NBC News.com](<a href=“http://m.nbcnews.com/health/bioethicist-texas-shouldnt-force-life-support-pregnant-woman-2D11792148]Bioethicist:”>Bioethicist: Texas shouldn't force life support on pregnant woman)</p>
<p>
</p>
<p>Personally, I would interpret this that any woman who dies of a brain injury needs to be checked for pregnancy prior to turning off her ventilator, or the doctors could be violating the law.</p>
<p>That’s terrifying.
I never, ever want to be hooked on to lifesupport and unresponsive. I want to die with some dignity and my parents and fiance are well aware of (and supporting of) my wishes.
To think that my and my family’s wishes could be overridden so that I can be a human incubator is absolutely revolting.</p>
<p>The religious issues in this case didn’t arise until the attorney showed up. I don’t believe it. Christianity is a mainstream religion in this country. This was simply an emotional grieving mother in a situation that somehow got horribly out of control. imho.</p>
<p>"VaBluebird, I think that, with this experience as a guideline, what the hospital should say is: “Based on our medical policies we cannot do anything more for your daughter, because in our professional opinion and under the law she is considered to have passed and we can’t bring her back. If you wish to make arrangements to have her taken elsewhere you may do so, but we do not believe that anything else can be done for her. If you wish to make other arrangements we will keep her here on the ventilator until (date). If you haven’t made other arrangements we will have to turn off the ventilator at that time.”</p>
<p>It seems obvious from reading all the background documents that the first sentence was said numerous times to the family by both medical and spiritual staff, and they just don’t (or didn’t) want to believe it. </p>
<p>But saying “if you wish to make arrangements to take her elsewhere you may do so” is sophistry when there ARE no other places that take this kind of patient.</p>