<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>I would not say things such as were reported to have been said (and reiterated in this thread in various ways) such as “She’s dead, dead, dead!” (Neither volume nor repetition adds anything to this.)</p>
<p>Once again: I appreciate that people like simple rules and bright line distinctions, and “brain dead” is one such rule. It’s ascertainable to a relatively high degree of reliability and we are confident that a brain dead person will never recover any meaningful “life” even if her heart is kept beating, despite the fact that her body is, in fact, still alive. But that’s true of lots of people who are not “brain dead” as well, and it’s still an arbitrary line. Many people cannot live without a respirator. Many people have no meaningful intellectual capability. Many people cannot govern their physical bodies. Many people have a combination of those conditions. We don’t demand that their hearts be allowed to stop against their families’ will (despite the fact that I think that in many of those cases that is the right decision.)</p>
<p>Again: I don’t think the hospital should be required to provide care for the girl. But I don’t think the hospital should have stood in the way of the girl’s family taking her elsewhere without unplugging her first, and in fact should have facilitated that after clearly expressing its medical opinion that such action was futile. Society has no more overriding justification for making that decision for the family in this case than for the families of the infirm and senile elderly, IMHO.</p>
<p>
I doubt that that is actually 100% accurate. Did she feed herself? Bathe herself? Take her own medications? I doubt it; someone was undoubtedly paid to care for her 24 hours a day. Where do you draw the line at maintenance which is “artificial?” I’m not criticizing, just pointing out that a lot of money was spent on keeping a senile elderly person alive (since people have been vociferous on the cost issue with regard to the 13 year old) and that is a common choice in American families. Yet the vehemence with which people insist that this 13 year old - who’s prospects are unlikely to be significantly different from those of a 90 year old with Alzheimers, except of somewhat shorter duration - must have her heart stopped now - is what I find interesting. </p>
<p>Simply reciting “she’s brain dead” like it is a magical incantation isn’t really helpful. Her body is alive. With care, it will stay alive - at least for a few more days, weeks or months. Just like a 91 year old with Alzheimers. It’s really not that different.</p>
<p>Well, I’m not going to argue with you, kluge. You clearly have strong feelings about the care of the elderly. Yes, my MIL required help with feeding and bathing at the end but she never had a feeding tube,etc. She was in a continuing care community which included a memory unit . Started in independent living, moved to assisted and finally to memory care. Many elderly people even in assisted living need help, let alone in a memory care unit. Unless you advocate actively killing elderly people who you think are no longer useful, I don’t know or understand what your answer is. I do feel that your equating a brain dead 13 year old with a still living elderly person ( not pronounced brain dead or whose heart has stopped beating -no death certificate involved) is interesting. We’ll have to agree to disagree. I was with my MIL a little over a year ago when she was pronounced dead and was relieved as she would never have wanted to live that way. But we let nature take its course. No regrets.</p>
<p>Also, unlike an elderly parent having something like a major stroke (where something may happen quickly and maybe doctors are telling you there is massive brain damage), Alzheimers tends to be slow and insidious. My lovely , well educated MIL (whose father was a doctor), went from a very vibrant, active person to someone who could not feed herself over the course of about 6 years. Very painful to watch and no clear point to withhold care. Again, very different situations.</p>
<p>Sevmom, I’m not arguing with you about the elderly. I’m taking care of my 87 year old father in law, who has gone from in home assistance to assisted living to memory care within the past year. He can pay for it; cost is not an issue; although Medicare does pay for his occasional trips to the E.R. when he falls, medications and the like. But my late mother in law was prevailed upon by various physicians to undergo a variety of expensive (and unpleasant) treatments after she was diagnosed with lung cancer in her 80’s - even though none of them promise a “cure.” No one accused those doctors of being “unethical” even though they were encouraging (and being paid for) treatments I considered futile and inappropriate, which, as is not uncommon, caused the cost of her medical care in the last year of her life to outstrip all of the cost of care she had previously had. Why? </p>
<p>Where I’m not seeing the bright line of distinction is between expensive daily care for a person with Alzheimers - who will never “recover” - and a ventilator for a 13 year old who also will not recover. Remember, the scope of this discussion is the assertion that the parents of the teenager should not have the right to take their daughter out of the hospital until her heart has stopped beating.</p>
<p>Sorry to hear about your MIL. My mother was diagnosed at 87 with lymphoma and no physician pushed us to accept intensive treatment for her. Her physician actually encouraged us to not do anything extraordinary as any treatment would be very hard on her. She died at home in hospice care two months from diagnosis a couple of years ago. Of the 4 grandparents, my 81 year old FIL was the only one who did not require major decisions re: end of life care as he died at home of a heart attack. Unfortunately, for many elderly ( and we will be there someday), death is a long , drawn out process.</p>
<p>I see a big distinction between a person with Alzheimers, who is still alive even if mentally incapacitated, and someone who’s already been declared brain dead. </p>
<p>Our medical directives say that in the event of dementia/Alzheimers, we don’t want ventilators, feeding tubes, or other advanced medical services; just comfort care. And definitely a DNR. </p>
<p>I’m sorry this family has lost their daughter, but even more sorry that they can’t seem to listen to the medical advice and move forward with burying the poor girl. If the next family comes along and wants six months to watch a body deteriorate on a vent after brain death are we going to allow that? This is the precedent this is setting up to establish.</p>
<p>Exactly, arabrab. Big distinction. We would never have authorized a feeding tube, ventilator, DNR,etc. for my MIL. She had clear directives about all of that. She just had a strong constitution and her body did not give up easily.</p>
<p>But what about the people who don’t have such directives and whose families keep them alive even when they have little brain activity and no way to do anything without thousands of dollars a day in high-tech medical support? To question their choice about what constitutes “life” is to get into “death panel” territory.</p>
<p>Not sure if this link works, <a href=“http://media.nbcbayarea.com/documents/Fisher+-+Redacted+Rpt_1.pdf[/url]”>http://media.nbcbayarea.com/documents/Fisher+-+Redacted+Rpt_1.pdf</a> but it is the independent medical exam by the Stanford neurologist. In it he describes the previous CT (from Dec 11) as showing “strikingly decreased density throughout the brain, with prominence of vessels” and 2 cerebral blood flow studies showing NO (my emphasis) blood flow in the brain. EEGs were read as “electrical silence”… with “complete absence of cerebral function and complete absence of brainstem function”. The end reiterates the findings, including no cerebral blood flow. To me this is important, because without blood flow, the organ is dead. I hate to be crass, but I have to wonder if it is odiforous. When the brain dies, it necrotizes and (OK ANYONE WITH A WEAK STOMACH STOP READING HERE) in the case of a friend’s med school cadaver, when they opened his skull, the brain tissue oozed out like green slime.</p>
<p>The hospital can allow transport of Jahi to another facility willing to continue feeding her other organs and pushing oxygen into her lungs (which, IMO is different than “breathing”), but if they are not comfortable performing additional procedures on her, they should not be required to do so.</p>
<p>I think the hospital hoped the extra time would have allowed the family to come to grips with Jahi’s death. Unfortunately it served just the opposite. </p>
<p>If she had a hypertensive crisis or her body temp goes out of whack or she has a cardiac arrest before next Tuesday or before transport is secured, will they have to respond medically? I think not, but its a challenging situation…</p>
<p>Really? Where is that? That was not my experience 30 years ago. We didnt take short term or rehab patients. Those were completely separate facilities with entirely different populations and services.</p>
<p>I’ll say one more thing about early (my mom) and late (my MIL) stage Alzheimer’s/dementia. It can hit any family potentially and is very confusing and painful to witness the progression. In my MIL’s memory unit, there was a former psychiatrist, former linguistics professor,etc.(both younger than her). And even though toward the end, there was not much left of her, even toward the very end a tiny glimpse of her would sometimes still shine through. Totally different than someone being brain dead or in some kind of PVS.</p>
<p>FYI, I don’t know if it was already reported on this thread or not (did not read back that far), but I read in today’s SF Chron that county officials have issued a death certificate listing Dec 12 as the date of death. Also in the article it was stated that the family had received permission to take possession of “the body,” and move it to another facility, but had to sign a release stating that they took full responsibility. The family wanted hospital personnel to intubate before the move, but the hospital refused, saying that they could not authorize their staff to perform any medical procedure, such as an intubation, on a “deceased person.”</p>
<p>Both my mother and dad were on palliative care after poor medical care at their local dumpy hospital and botched surgery (mom) and incompetent care ( dad). But I digress. Letting an older adult go is easier than letting a child go. But neither are easy. Jahi’s mom said in one interview that if she didn’t fight for her daughter that people would think she is a bad mother. Wonder if that is still an issue for her. Hopefully not .</p>
<p>I have a MIL still in her home. She is getting hospice care now, but not terminal. She s increasingly violent but does not recognize a single family member. She is frail and has broken things more than once. i have no idea how she is still alive. The amount of money being spent on her care is big, but it could be so much more. It likely will be. </p>
<p>I agree with Kluge. There is one miracle, right there. </p>
<p>I see very little difference between my once lovely MIL and this case of this young girl. </p>
<p>There is no there, there. </p>
<p>It is no life. It is heartbreaking and sad, and as a former RN who spoke to me about not wanting to prolong her life in such a case, it is devastating, she never put her wishes in writing.</p>
<p>One point regarding reimbursement for inpatient stays - In most cases, the facility is reimbursed based on the MSDRG - a number that specifies what the treatment was about and is assigned a DRG weight. The hospital will then be paid that weight times the base rate for the hospital which would depend on whether it’s a teaching or community hospital, the wage rates and such. </p>
<p>In the majority of cases, the hospital would get the same amount for a given DRG from a specific insurer even if one patient stayed longer and had more tests done than another. The primary exception are cases designated as outliers where the facility can get an additional amount. I’m sure there’ll be arguments both ways on whether the hospital should only receive the fixed amount for this DRG and eat the rest of the costs (“contractual adjustments”) or if they can claim an extra outlier payment.</p>
<p>Sorry about your MIL and what your family is going through but what else would you propose to do? She is already in hospice care . Yes, “it is no life” but she is not dead.</p>
<p>The difference is that your MIL will be still be breathing with a beating heart in 15min all on her own. This girl, without the ventilator breathing for her, will not breath spontaneously and her heart will stop within few minutes. She continuously requires ongoing high tech medical procedures to keep her organs functioning.</p>
<p>Yes, Samurai,nature will take its’ course and her time will come. And I hope things will not be prolonged for your MIL or you and her family since the end seems inevitable since she is in hospice care. I think Jahi’s time has already come and I hope her family will put her to rest very soon.</p>