<p>Thank-you for post #197. People can disagree without being disagreeable.</p>
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<p>True. Most of Terri’s movements were simply reflexes; they certainly were not responses to voices/people. Her family interpreted these reflexes as cognitive responses to them. They did so because they were in denial and wanted so badly to believe she was still mentally viable. Even after the autopsy was performed and showed that her brain was so atrophied, it was 1/2 the normal size of a healthy female brain and therefore absolutely incapable of improvement and evidence that Terri was not capable of any cognitive function, her family denied an denied. Even after the autopsy vindicated her husband of any abuse whatsoever, supporters continued to accuse him of malfeasance. These are the kinds of complicated issues which arise with patients in a coma or PVS. </p>
<p>A brain death is even more hopeless. This child’s brain has been deprived of oxygen (via blood flow) for over 2 weeks. It only takes minutes of oxygen deprivation to cause death. This is why it is unethical to treat her. It gives false hope, it has no chance whatsoever of benefiting the patient, and it wastes valuable resources. Families see what they want to see. It’s understandable to a degree, but this is the reason why grieving families are generally not allowed to make medical diagnoses and prescribe treatment. They are not trained to do so, have no education to back up their claims, and are completely incapable of being objective. In this sense, I think the judge is failing the family. He has legally ruled that the child is dead, yet is facilitating continued denial, and setting a dangerous precedent in the process, apparently because he doesn’t want to further upset a very vocal family. It’s one of the strangest cases I’ve ever heard of. This exact scenario plays out every single day somewhere, but I’ve never heard of a court compelling treatment for a patient it has simultaneously ruled is legally dead.</p>
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Why continue some measures and not others? Everything they are doing at this point is artificial, so I don’t get the difference between one extraordinary measure and another. </p>
<p>It’s obvious that the parents don’t believe the doctors, so perhaps the court hopes that the inevitable end will come within the next week?</p>
<p>^^^Could be.</p>
<p>I once had a patient who had experienced symptoms of a stroke. A rural hospital gave him clot busting drugs before getting the CT scan, which would have shown that the man was having a hemorrhagic stroke vs. an ischemic stroke. So he proceeded to bleed out in his brain; the pressure from the bleeding caused the brain to herniate, meaning it “squashed” the brain down into the bottom of the skull. Now this was brain death to the max. However, the family refused to believe it and insisted on continued care.</p>
<p>The doctors at our hospital tried very hard to explain to the family the hopelessness of the situation, but they and their lawyer (shame on him) threatened to sue. The doctors decided to put the patient into my unit on a very old vent with minimal care prescribed in the hope that the patient would pass on his own. The family would sit in the room and talk about all the things they were going to do when he “woke up.” It was very sad. Meanwhile his brain began to decompose and he started to smell. All of the medical staff was so appalled by this-and you can be appalled at the same time as you have compassion-and disgusted by the circumstances which allowed this to continue. He finally did die, but it shouldn’t have happened that way. Keeping a body on life support while it rots from the inside is to me so completely unethical and one of the worst incidents of my career. This was allowed to happen because uneducated but very vocal people put pressure on an administration that didn’t have the guts to do the right thing.</p>
<p>If the brain is dead and there is no hope for recovery, why go through with keeping her alive? Sounds unethical to me and a little unfair to the kid.</p>
<p>When my son was seven, he was diagnosed with sleep apnea. He snored like a freight train, too! So he had a tonsillectomy, and they removed his adenoids at the same time. They told us that 1 or 2 percent of patients have post-operative hemorrhaging. Well, S was in that percentage! The next week, he started bleeding profusely from his throat. It was really scary. We rushed him to the ER and the triage nurse swept us right in. It turns out that he has Factor XI Deficiency, a mild bleeding disorder - it’s also called Hemophilia C. It’s not nearly as severe as regular hemophilia. He doesn’t bleed any easier, but if the bleeding starts, he doesn’t clot properly. It turns out that all three of my kids and my husband have it - H’s grandfather was an Ashkenazi Jew, and that population intermarried a lot and their descendants have about an 8% chance of getting it. Each of my kids had a 50% chance of getting it (since the disease was known to be in the family), so of course all three have it! My daughter hasn’t gone through puberty yet, so we’re not sure how things will go for her.</p>
<p>So the operation was good AND bad. S never snored again. He stopped wetting the bed immediately. We found out about a disease that affects my entire family - the diagnosis may well have saved one of their lives, because they will be treated for it if they are ever injured. But the bleeding was horrible.</p>
<p>This case is obviously a great tragedy for the family. Their reaction is in many ways understandable, and they have my sympathies.</p>
<p>The people who are really despicable are those in the media who are drumming up support for the family in the most exploitive way possible. Contrary to the suggestions of some in this thread, this case exemplifies a HUGE public policy problem. One of the main drivers of health care costs in this country is the unconscionable amount of money that we are spending on end of life care (actually, in this case, after end of life). The tone of the coverage in this case and others like it simply make it more difficult to come to grips with this problem.</p>
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<p>Again, “the kid” is gone, from her earthly body anyway, so, sadly, it can’t really have any effect on her . . . although a timely burial would arguably be more respectful.</p>
<p>Right now, the media only has one side of the story. And, yes, they are going for sympathy but they are not the drivers of this story. It was spoon-fed to them. I have also seen some pretty good coverage of the medical ethics issues involved but it’s certainly not as prevalent. No-one wants to be seen as attacking a grieving family which seems to be where this goes when you raise questions.</p>
<p>“The tone of the coverage in this case and others like it simply make it more difficult to come to grips with this problem.”</p>
<p>Do you mean that it’s too sympathetic to the family? Or what? Because the whole “tone” problem on this thread baffles me, honestly. Facts are facts. </p>
<p>I have never seen another case like this one. That’s why it’s so interesting. But some of that is getting lost in the confusion about terminology.</p>
<p>I heard a doctor on the radio this morning who explained things very well. He said it is very difficult to keep a brain dead body ‘alive’ even long enough for organ transplant. Without any autonomic brain function, the bodies blood pressure jumps around uncontrollably, the temperature spikes and fluctuates. To keep such a body ‘alive’ requires two full time critical care nurses to monitor all the systems and equipment. He also said that it would be almost impossible to keep such a body alive during transport to another facility. </p>
<p>Without any blood flow to the brain, a scan of the brain shows just a an empty black hole. He said it was macabre because the blood is still flowing to the skin of the head so that shows pink but inside the skull - nothing.</p>
<p>Sleep apnea may be rare, but it happens. A daughters friend, dear friend of S2, had this and had a tonsillectomy and adenoids out right after graduation. It’s not easy at 18. Another good friend in hs has a bad bleeding disorder (don’t know the name but sounds similar to previously mentioned). S2 has terrible reactions to general anesthesia (as do I). DH has a clotting disorder and doesn’t heal well, also a heart murmur. Any of these can complicate and add great risk to any ‘run of the mill’ surgery. Especially if you don’t know ahead of time. S2 and I have elected for local over general anesthesia when possible to avoid reactions or complications, despite the additional discomfort and ICK factor of being awake for these things (Drs prefer general in many cases for speed and keeping patients still). It’s entirely possible this young girl had another risk factor that contributed. No one knows (and now evidence via an autopsy will be less likely). Absolutely, question everything including appropriate care. The default assumption should not be ‘it must have been malpractice!’ but ‘let’s find out what caused her death’ and go wherever that leads. </p>
<p>I, like others, find this tragic and terribly sad. Extending ‘life support’ on the body for a young girl who has died, the court has done it’s job IMO in providing outside council to confirm this and all agree she is gone, irreversible, no activity. The statement from the mother reflecting her belief that she sees response equating life and hope is also tragic. She is grieving and in denial. The hospital, caregivers, are not talking so there’s no expert to refute, give context, etc. We know from previous cases (and medical science) once brain death occurs recovery of brain activity is impossible, response does not happen. Delaying the inevitable is cruel to the family and I blame those enabling this now. So terribly sad.</p>
<p>The family’s declaration to the court said that there was a facility in New York willing to take her, but they didn’t provide a specific name. The two California facilities they contacted declined presumably after reviewing the case. The doctor interviewed on the radio this morning said that it was likely that the unidentified New York facility would do likewise and that in any event, keeping the body ‘alive’ for a flight to New York would be extremely unlikely.</p>
<p>The family is holding out hope against hope that this is a coma and not a vegetative state. It doesn’t look good for the former. They need time to absorb the fact that their daughter went in for a routine operation and ended up dead, and all the articles you can google to find things like: “miraculous recovery from brain death minutes before they tried to pull the plug” feed that hope. Don’t think they haven’t already done that. What I worry about is the idea that an authoritative body may be granted the sole power determine and declare someone incontrovertibly “dead”, refuse requests for life support from the family and then proceed to pressure them to allow harvesting of the deceased’s organs, all, of course, for the greater good. It smacks of a dystopian society. I fear a time when they won’t even have to ask permission anymore.</p>
<p>Except that this happened weeks ago and the court has independently confirmed brain death. I don’t understand how they can at the same time agree to another week of “life support”. Meanwhile, people are marching in the streets. It’s disgraceful.</p>
<p>I really feel for the “caregivers” at that hospital. It’s too late for organ harvesting.</p>
<p>“The family is holding out hope against hope that this is a coma and not a vegetative state.”</p>
<p>Sadly, this appears to be neither coma nor vegetative state - it is brain death. The brain stem is completely dead, there is no blood flow to the organ which is slowly rotting away. So sad and tragic! I completely agree with the medical professionals posting in this thread - it is a sad day for their profession when lawyers and public opinion begin to dictate how they need to perform their job.</p>
<p>Of course we need “central people” to declare someone dead. They are called doctors.</p>
<p>I found this link very informative in explaining the difference between a coma, permanent vegetative state, and brain death. It talks about the diagnostic tests used when pronouncing someone brain dead, as well as special considerations (children). Many here are very knowledgable but I learned a few things. </p>
<p><a href=“http://neurology.about.com/od/Symptoms/a/Understanding-Brain-Death.htm[/url]”>http://neurology.about.com/od/Symptoms/a/Understanding-Brain-Death.htm</a></p>
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And we come around again to acollegestudent’s question of whether this is harming anyone. What about the nurses and doctors? They have to be professionals, but they are human too. I’m sure some of them are struggling with coping with what they are being forced to do.</p>
<p>You know, it’s really not healthy to let this family continue to live in denial for another week. Actually, it’s anything but compassionate or respectful. IMHO.</p>