Since this was discussed at length several years ago, I thought people might be interested in this article, which sheds like on her current status and the journey of her family.
https://www.newyorker.com/magazine/2018/02/05/what-does-it-mean-to-die
Thank you for posting this.
I am continually amazed at the religious argument for this. If you truly believe that there is a soul inside of Jahi (or anyone in such a state), wouldn’t you want that soul to move on to eternal peace rather than being locked in a bodily prison?
I think that her family has come to a place of complex understanding that Aviv sensitively portrayed. Her mother now has a DNR on her. I think it would be a mercy to them all if her heart quietly stopped beating.
I think that her family would likely say that her soul will move on when it is ready to do so.
The problem is that she is young and has a healthy heart. There is another instance of a brain dead child living on “life support” for twenty years before he finally died. His mother also rejected the notion that he was brain dead. When they did an autopsy after his death, they found his brain was just a calcified little lump.
@Consolation, from the linked article:
As a side note, this really, really bugs me. It’s a common idea brought up by (primarily) religious people but it isn’t rooted in actual history.
There is a pretty thick line between brain death (as defined today) and the lives “unworthy of living” in the Nazi definition. The Nazis could not have conceived of “brain dead” patients as we think of them today because in the 1920s-40s, they would have just been dead. No need to think of euthanasia.
Yes, the US, Germany, and others “euthanized” disabled babies and children (almost exclusively) but they were not brain dead.
Invoking Nazism in these debates is a good way to shut down a reasonable discussion, especially when you’re using one term to mean 2 radically different things (brain death). That said, you CAN draw a comparison between Peter Singer & Nazism, but that’s outside of this thread/story.
@Nrdsb4 , thanks for pointing that out. I have only read the version of the article that appeared in the print magazine, to which I subscribe.
I’m sorry to hear that it isn’t true. I thought it represented progress towards acceptance on the part of her mother.
I feel very bad for the other children of the family whose lives were and continue to be derailed by this ongoing drama. Their lives are not allowed to have any normalcy. The parents can and have made choices—the kids are stuck. It’s just an awful situation, made worse by all the time that keeps ticking.
@consolation, I agree.
I was fascinated by this is article when i read it a couple days ago because it did show a complex, more unclear view of how we define brain death. A couple thoughts:
I did not know they’d ended up in NJ. When discussing this article with my H, a former NJ doc, who had not read it, he approached it from the point of view of always having known that type of situation from the very strict NJ definition (and I don’t think he had realized how different it was from most of the country); he made that point that despite that, he thought that in NJ, doctors were extremely willing to accede to family requests to end it, superseding official definition (not to make a point, just to say.)
My overall take is, if she is minimally aware, what a special hell on earth that must be, for her and for others locked into minimally conscious states. I just cant fathom the fact of that.
My H’s best friend’s wife is locked in her body. She hasn’t been able to talk in over 3 years and is completely bedbound and dependent on a feeding tube. The husband is now wondering if it would have been kinder to refuse the feeding tube 3 years ago. She breathes on her own and her heart pumps. She and her H are both quite depressed. There is no cure—a special hell with no end in sight. She can still think and see and recognize people. She does sleep a lot.
She has been in a private pay nursing home for > 5 yrs. It is over $10K/month.
Not to detract from Jahi, but these are among the others who are in twilight as well.
A relative of my H had a 20 yr old D who was badly injured in an auto accident, including a severe traumatic brain injury. Her parents went the whole 9 yards with life support. Eventually they brought her home, and the mother dropped her career and devoted herself to caring for her. There were minimal possible signs of recognition, etc. (Her grandmother told H that she thought they should have let her go early on.) Their house was such that the hospital bed was set up in the living room. The mother then decided to “homeschool” her younger D, circa age 10, who thus had no escape at all and even less normal interaction with other kids. Naturally she was expected to help care for her sister. (This is not a rap on homeschooling in general, just in this situation.)
I am not sure exactly what happened medically in the end, but they may have had a DNR on her. After 6 or 7 years of this, she died.
At least Jahi’s sister is going to school.
My dad’s living will stated specifically that he didn’t want a feeding tube. When he had a hemorrhagic stroke at age 91, I used his will to refuse a feeding tube (and was supported by the nurses and doctors and social workers at the hospital), and he died peacefully after a week. It must be so hard with a younger person. Such a big decision to make!
The more I learn about feeding tubes, the more I and H are deciding we don’t want them. Having H’s best friend’s wife trapped in her body for so long has taken a toll on her, the H and kids and is hard in everyone who loves them. I believe she was only about 65 when she was diagnosed.
" Sandra said she sometimes wonders, “If the hospital had been more compassionate, would we have fought so much?”
This really struck me as I read the article. The family wanted a real apology from the doctor who was afraid of a law suit if he admitted that mistakes were made. They already felt that their D wasn’t being improperly cared for (I tend to agree). It’s amazing how much an apology can be worth. In this case thousands and thousands of dollars and years. There is a huge chance that this would be a non-story if they’d gotten one. Most people are very forgiving even in the worst of circumstances.
I also believe that the alleged shabby treatment their daughter received from the hospital and doctor who performed the tonsillectomy had a lot to do with the decisions that were made. It is clear from that article that the family believes the hospital and doctor did not value their daughter’s life and the lack of intervention when she began to bleed cemented that belief. So to let her go with any evidence of life present was inconceivable to them after the experience at the hospital. I also think the mother is carrying a lot of unecessary guilt for insisting that the child get the operation in spite of her D’s protests that she didn’t want to do it.
Just a terrible situation all around but the article gave me a better understanding of how they got to where they are. My own feeling is that they are at the end of the road and probably know they need to let their daughter go.
I seem to recall that there was some controversy about the family having too many people there post-op talking to her when she was supposed to be strictly quiet, and also about them giving her solid food that may have caused the bleeding. Nothing about that appears in the article.
Were those details from another case? I know it happened somewhere.
Because of privacy laws, the hospital is not able to comment about any of this. So we have always only heard one side of the story.
Jahi has not been diagnosed as comatose or in “twighlight” or any such thing. A diagnosis of brain death is completely and totally different. No further tests have been done on her as far as I know that actually contradicts the tests done in CA. We are only told what the family wants us to be told.
“My overall take is, if she is minimally aware, what a special hell on earth that must be, for her and for others locked into minimally conscious states. I just cant fathom the fact of that.”
Jahi appears to have some brain function (outside the definition of brain-dead) and her mom appears to communicate according to outside doctor verification. Near the end of the article her mom says she asks her D if she’s ready to go–and if she gets a “yes” she’ll let her go.
They claim the “religious” angle because that is what allows the ventilator to be continued–and they had to go to NJ to do it. You must remember that definitions of what constitutes “life” and “death” are made by committees. And that definitions can and do change. And reasonable people can believe otherwise.