<p>Possible headlines…</p>
<p>Oakland Hospital Planning to End Life-Support for Child on Tuesday vs. Grieving Family Continues to Deny Daughter’s Tragic Death </p>
<p>Both are accurate.</p>
<p>I usually refer to it as “mechanical ventilation.”</p>
<p>I hate to be dumb here, but isn’t the usual purpose of temporarily (by which I mean a day or so) of mechanical ventilation in brain dead people is simply because it’s easier for families to say goodbye to a warm body that appears to be merely sleeping versus a cold dead one?</p>
<p>^^^Probably, but any time a family verbalizes resistance to cessation of mechanical support, most facilities are going to keep it going until either the family accepts it or a court allows it or mandates it. </p>
<p>I’ve seen families insist that mechanical support continue to be provided even when the patient’s living will explicitly forbids it. I’ve never seen a doctor stop mechanical support in the face of family resistance.</p>
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Nrdsb4, there have been two threads to the vehement opposition to allowing the family to have their daughter properly prepared for transport and allowing them to take her out of the hospital. One is the expense of keeping her there, even for a few more days. The other is the loud and repetitive insistence that “She’s DEAD!” </p>
<p>My point is, she’s as dead as an Alzheimer’s patient. That is, her body is alive but she can’t think for herself or care for herself, and the inevitable outcome is that her entire body will die with recovering sooner or later. That’s true in both situations. The senile nonagerians have to be fed and cared for, or they will die. The 13 year old has to have her ventilator and a feeding tube. Both are expensive. The expense of caring for the millions of senile elderly in this country dwarfs the expense of the handful of brain dead children. So I bring that up to put the cost issue in context. </p>
<p>And is turning off a ventilator with the knowledge that it will stop the girl’s heart from beating and in short order cause tissue death to the rest of her body really all that different from putting a pillow over her face and smothering her?</p>
<p>That’s where we get to the “She’s DEAD!” part. Not to be a broken record, but I understand those who like simple answers, and that’s a simple answer. But while I see it as a good simple answer to the question of whether the hospital or taxpayers should have a continuing obligation to pay for the care for the girl, I don’t see it as a good answer to the family’s request to have her prepped for transport and to take her wherever they find to take her - even if it’s her grandmother’s home.</p>
<p>Yeah - I understand. That’s complicated. But sometimes when dealing with ethics you need to go beyond simplistic formulas.</p>
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<p>There’s where I think the Alzheimer’s patient differs from Jahi’s body. An Alzheimer’s patient has some evidence of thinking. They react. They like sweet things. They might like familiar music. They’re not inertly lying there having air pushed into their chests like a braindead person on a ventilator. For me, there’s no comparison.</p>
<p>I have followed this thread from the beginning, all 70 pages. Less than a year ago, I had to make the decision to remove my ill 79-year-old mother from life support. I won’t expound on the details in this thread. Having to make that decision still haunts me to this day, even though I know I was giving Mom the gift of granting her final wish. With all of the medical technology available, families like mine are having to make these kinds of decisions every day. Not that many years ago, the means were not available to keep people alive like this, and the individuals would have died without family members having to make such a difficult decision. I can’t fathom having to make this decision about my child. That said, I have enough of a medical background to understand that Jahi is already dead, and has been since December 12.</p>
<p>I can understand Jahi’s mother’s initial disbelief when presented with the information that her daughter is brain dead. I wonder if she now ‘gets it’ but doesn’t know how to say that and take the next step, what with the legal and media involvement. I’ve worked with people and have in-laws who would NEVER admit that they had changed their mind about something.</p>
<p>For Nrdsb4, I suspect that you may feel as this nurse does:
[Diary</a> of an intensive-care nurse | New York Post](<a href=“http://nypost.com/2012/12/09/diary-of-an-intensive-care-nurse/]Diary”>Diary of an intensive-care nurse)</p>
<p>It must be difficult to be somebody with the intelligence to see the ethical complexities of a situation where everyone else sees the world in such simplistic terms. The reality is that there are some situations where bright line rules work well and this is one of them. This is a situation (unlike all of the others that you cite) where (if we can believe the scientific evidence) the relevant entity has none of the characteristics that we associate with sentience. Unless one has religious or quasi-religious beliefs to the contrary, it makes no sense to say that we should devote societal resources to the medical treatment of such an entity. BTW, the fact that we waste money on medical care in other circumstances, which you seem to have suggested earlier should have some bearing on the decision, is completely irrelevant.</p>
<p>This case presents a classic example of what happens when you don’t have bright line rules. Not only are there wasted medical costs while some (fill in the characterization) judges try to figure out the “right” thing to do, but the hospital itself has to waste the time of administrators and the resources to pay attorneys during drawn out legal proceedings.</p>
<p>I repeat, I have great sympathy for the family, although not for the associated hangers-on and publicity seekers. If they can provide the FULL cost of the procedures that maintain bodily functions, they should do so. Otherwise, we are well past the time when this drama should be over.</p>
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<p>That’s really, really not true.</p>
<p>Although I do actually agree with you to a point about the wisdom of care which is given or inflicted upon persons who really don’t benefit from it. I’ve seen essentially elective surgeries performed on very elderly people who are then exposed to a whole host of new complications and deterioration of the already iffy quality of life they had.</p>
<p>But many Alzheimer’s patients have moments of lucidity and the potential to feel joy or other normal human emotions. I disagree that they are the equivalent of a brain dead individual.</p>
<p>The intensive-care nurse diary is sobering. But she doesn’t tell us how to tell the difference between someone who is having a prolonged horrible death, and someone who is undergoing horrible treatment that will enable them to leave the ICU and go on in life. </p>
<p>I don’t want, for myself or anyone I love, the first one. But how do I tell the difference between the first and the second? Let’s say I’m sitting at the bedside of someone I love in the ICU. How can I tell if this person is on the slippery slope to horrible prolonged death, and if I decide they are, how can I get them off the slippery slope and allow them to die in peace? If you ask most people, they’d say they don’t want the prolonged horrible death, but a lot of people end up dying that way. How do we stop the treadmill?</p>
<p>My aunt died of Alzheimers. At one point, she wasn’t eating and we were asked if we wanted a feeding tube inserted. We said we didn’t. She was put in a hospice unit, with kind nurses, where she died in a week or so.</p>
<p>Kluge, I respect you, but I feel like you think you alone can see nuances. </p>
<p>The fact that much medical care is “wasted” on prolonging the life of elderly people with dementia isn’t really much of an argument since it may be true, but also irrelevant.<br>
No one says all lines are bright, but brain death is a pretty bright one.</p>
<p>cincy gal, I did identify with a lot of the things the nurse said in that journal. And CF, it’s often a really difficult line to draw. We can’t always give an unequivocal answer to those questions. Our technology has outpaced our ability to use it wisely much of the time.</p>
<p>One of our ICU pulmonologists would often pose this question during Grand Rounds or in conferences where the disciplines would meet to make a plan of care: “Just because we can, does it mean we should?”</p>
<p>It’s been said that you really can’t understand unless you’ve walking in someone’s shoes. Well, my wife and I have walked in Jahi’s parents’ shoes. Our oldest child went in for a tonsillectomy and the day after suffered a catastrophic hemorrhage leading to him aspirating a blood clot. Despite CPR, he was anoxic (without oxygen) long enough to be declared brain dead. He had no brain wave activity (note- brain dead- not coma and not PVS ) and while a ventilator was breathing for him, he was dead.
The next day we chose to donate his organs so at least there were some who could benefit from his tragedy and our son lived on in them. We were fortunate that we didn’t have to deal with the media circus as in this case and I can’t imagine trying to hold a press conference under those circumstances or dealing with all those “outside” people who injected themselves into the case. In my mind, it is between the family and the doctor to make medical decisions.
I don’t know about Jahi’s family but we had a relatively high medical IQ among family members and knew early on the devastating level of his condition. I shined the light in his eyes and his pupils were fixed and dilated, indicative of severe brain injury. Further testing showed no brain activity and we knew he was declared dead, despite the ventilator activity.
I wish I knew what information the family getting or if they truly believe that she will recover. It is a tragedy and I feel for the family but keeping her on the ventilator when she has no brain activity and has been declared dead, serves no one, least of all, Jahi.
I’m writing this, not for pity but to show that every family reacts differently to even similar tragedies…</p>
<p>I am so sorry for your loss,jandjdad. Thank you for posting your very sad experience. Your son does live on through your very generous organ donation.</p>
<p>I am so sorry JanJdad. Your post somewhat answers the question that has been bothering me (and forgive me if it has been brought up before on the thread).</p>
<p>Unfortunately I am sure this child is not the first one to have something go wrong and end up brain dead. It sounds as if in most cases, as jandjdad noted, within a day or so, machines were disconnected and organs donated if available.</p>
<p>What is different in Jahi’s case? Why was this not done? Has no other parent pleaded with a hospital not to disconnect his child - I would think we all would be in some sort of denial and if the hospital gave us a sliver of hope we would take it. So what went wrong in the communication here?</p>
<p>surfcity - No other parent that I’m aware of has called the press into the hospital lobby claiming that the hospital intended to kill their child. The next day they had the lawyer and here we are. We, of course, have no clue about their motivation.</p>
<p>jandjdad - I’m so sorry for your loss.</p>
<p>[Lawyer</a> For Jahi McMath Family Says Brain-Dead Teen Will Be Moved « CBS San Francisco](<a href=“http://sanfrancisco.cbslocal.com/2014/01/05/dolan-jahi-mcmath-interview/]Lawyer”>Lawyer For Jahi McMath Family Says Brain-Dead Teen Will Be Moved - CBS San Francisco)</p>
<p>Sincere condolences, jandjdad.</p>
<p>jandjdad, thank you for sharing your heartache with us. My prayer is that people will have serious discussions about end of life decisions and be informed about options and know enough to ask questions during an time of emotional crisis.</p>
<p>jandjdad, I am so sorry for your loss.</p>
<p>so very sorry, jandjdad</p>