What Does It Mean to Die?

January 29, 2018 11:33 AM

When Jahi McMath was declared brain-dead by the hospital, her family disagreed. Her case challenges the very nature of existence. (SLNY)
posted by BekahVee (69 comments total)

So, it's the Terri Schiavo case all over again, only without the President weighing in.

I feel for her mother, and what happened to her daughter is a clear-cut case of medical malpractice. She shouldn't be dead, but she is. Everything that makes us human is in the brain. When that's gone, we're gone. If it were someone I care about, they'd be legally dead and buried by this point.
posted by SansPoint at 11:49 AM on January 29, 2018 [18 favorites]

So, it's the Terri Schiavo case all over again, only without the President weighing in.

And a horrifying race and medical neglect angle.
posted by Artw at 12:03 PM on January 29, 2018 [44 favorites]

“No conceivable goal of medicine—preserving life, curing disease, restoring function, alleviating suffering—can be achieved by continuing to ventilate and artificially support a deceased patient,” they wrote.

Erm... it alleviates the suffering of the family.

My almost-first-husband (we lived together 7 years and had a child) died from complications of a tonsillectomy at Kaiser Oakland, 20 years ago. Watching the Jahi McMath case on the news was surreal.
posted by ErisLordFreedom at 12:05 PM on January 29, 2018 [15 favorites]

And a horrifying race and medical neglect angle.

Yeah. I'm not sure why this is a "what is existence, really?" piece when there's this big, thick slab of "another example of how black people get the short end of the stick in almost every aspect of their lives".
posted by Talez at 12:06 PM on January 29, 2018 [63 favorites]

Like if black people can't even get the NYT to give a shit about systemic injustices we're pretty fucked.
posted by Talez at 12:07 PM on January 29, 2018 [2 favorites]

It makes me feel like there is probably a predatory aspect to Shewmon's practice, taking advantage of families who so desperately want to believe.

Also, New Yorker, what the fuck was up with that throwaway line about the mom's position on abortion? Not even remotely related to the case at hand.
posted by graventy at 12:09 PM on January 29, 2018 [1 favorite]

Also, New Yorker, what the fuck was up with that throwaway line about the mom's position on abortion? Not even remotely related to the case at hand.

Given how Terri Schiavo's case (and others) were used/manipulated by anti-abortion zealots, I think it is related, at least parenthetically.
posted by the return of the thin white sock at 12:20 PM on January 29, 2018 [28 favorites]

I knew a family whose son went into a coma after a rare and scandalous episode of police brutality (I'm not in the US). He lived for about 20 years, and like Jahi, he would respond with tiny little movements but never more than that. No-one ever doubted that he was alive and needed to be protected, because apart from the police, no one had an economic interest in killing him off. (The police were sued and paid a huge compensation so the family could afford a private nursing home). Maybe it seems strange, if you don't know it, that a family will keep on loving and caring for a person who cannot speak or hardly moves. But love doesn't work "rationally". Love cares. The family I knew cried just as much when their boy died as had he been married and had two kids during those 20-ish years, as did the friends who had loyally visited him.

Reading this story was so horrifying I almost threw up, from the very outset, this is more than anything else about systemic racism. IMO it has nothing at all to do with the Schiavo case. Everything is wrong about it all the way, but the worst thing is that Jahi could have been saved from her current situation if the nurses and doctors had just done their goddam jobs. Normally I disapprove of the American culture of litigation, but the malpractice here is so damningly obvious, I feel the hospital should be sued to bankruptcy as an example. (If what the article says is true).
posted by mumimor at 12:26 PM on January 29, 2018 [35 favorites]

This is a sad story, but it has an easy solution: give the family resources to care for Jahi how they see fit. Trying to convince the family that Jahi is dead and thereby not valuable is impossible and cruel. Trying to convince everyone else that Jahi is alive and thereby valuable is not important. There's no reason to try to draw some tiny perfect line between life and death.
posted by value of information at 12:27 PM on January 29, 2018 [31 favorites]

So, it's the Terri Schiavo case all over again, only without the President weighing in.

I feel for her mother, and what happened to her daughter is a clear-cut case of medical malpractice. She shouldn't be dead, but she is. Everything that makes us human is in the brain. When that's gone, we're gone. If it were someone I care about, they'd be legally dead and buried by this point.

Did you read the article past the opening paragraphs? There's numerous medical, ethical, racial, economic; and, yes, spiritual issues discussed in this piece. Just from the medical angle alone, the author points out numerous differences with the Schiavo case, including Jahi's family going out of their way to not lie and deceptively edit footage like the Schiavos did.

Such a flip dismissal of it as just "the Terri Schiavo case all over again" does an incredible disservice to the people involved, and serves more to underline the horrors of this case than to refute them.
posted by zombieflanders at 12:30 PM on January 29, 2018 [61 favorites]

I remember reading about this when it first happened and it was around the time I was looking into getting my tonsils removed (mostly because of sleep apnea).

Also, although I don't really want to cause a derail, can anyone elaborate on this a bit?

The laws in both states were written to accommodate Orthodox Jews, some of whom believe, citing the Talmud, that the presence of breath signifies life.

Would this apply in instances where a ventilator/respirator was required? And how would you operate the machine on Shabbos? I'm assuming its for cases like Terri Schiavo, who breathed on her own but had a feeding tube, where the ultimate cause of bodily death is starvation?
posted by elsietheeel at 12:31 PM on January 29, 2018

Bioethicists also disparaged the family’s decision. In an op-ed in Newsday, Arthur Caplan, the founding director of N.Y.U.’s Division of Medical Ethics and perhaps the best-known bioethicist in the country, wrote, “Keeping her on a ventilator amounts to desecration of a body.” He told CNN, “There isn’t any likelihood that she’s gonna survive very long.” In an interview with USA Today, he said, “You can’t really feed a corpse” and “She is going to start to decompose.” Laurence McCullough, a professor of medical ethics at Cornell, criticized any hospital that would admit Jahi. “What could they be thinking?” he said to USA Today. “There is a word for this: crazy.”

I guess they don't teach tact, politeness, or kindness in ethics classes.
posted by elsietheeel at 12:37 PM on January 29, 2018 [38 favorites]

zombieflanders: There's more to it than Schaivo, including the egregious malpractice aspect. But the article paints the story as a case of is this girl alive or dead, and fundamentally, she's dead. Everything that is Jahi is gone, and while she may feel no pain, she feels nothing else either. I'm going to be stuck on that, because that really is the framing device for the entire, sad story.
posted by SansPoint at 12:38 PM on January 29, 2018 [2 favorites]

Sure. But If it provides comfort to the family and the hospital is paying for it then I hope they end up keeping the body on a ventilator for a long, long time.
posted by Artw at 12:39 PM on January 29, 2018

"Minimally conscious state" is a medical term.
posted by aniola at 12:47 PM on January 29, 2018 [2 favorites]

Everything that is Jahi is gone, and while she may feel no pain, she feels nothing else either.

I'm sorry - how is this clear?
posted by agregoli at 12:47 PM on January 29, 2018 [22 favorites]

And how would you operate the machine on Shabbos?

it is permitted and a mitzvah to violate Shabbat for life endangering concerns.
posted by ErisLordFreedom at 12:54 PM on January 29, 2018 [21 favorites]

I do not even want to imagine what it must be like to know I urged my daughter to have this surgery and They botched the surgery and my daughter died, with the transitive property making I killed my daughter ring in your ears forever. Unthinkable levels of pain and guilt and anguish. If Jahi's mother feels compelled to cling to every last possible tendril of denial and hope by any means necessary, I don't think anything in this world could dissuade her from doing that.

If you click on my profile you will see a picture of Mike the Headless Chicken, which has graced my profile since registration and which I stress that I refer to for its relevance here, not for humor value. Mike is another illustration of the idea that the brain is a complex and mysterious organ and one that we do not completely understand; if the stars align just right, even a tiny portion can be stubborn enough sometimes to forge new neural paths and allow a seemingly impossible semblance of life.

The key word, however, being semblance. From the article, I believe that the mother knows that how Jahi is now is as alive and functional as she will ever be. I had to make a decision on a family member once, whether to pursue treatment that was stressed as being futile or allowing a graceful exit, and that was nearly shattering for me; the mother is making that decision every day and whether or not I agree with it, I must boggle at her emotional strength.
posted by delfin at 1:00 PM on January 29, 2018 [12 favorites]

“including Jahi's family going out of their way to not lie and deceptively edit footage like the Schiavos did. ”
This isn’t remotely accurate. The family has released edited footage, doctored photos and numerous inaccurate statements.
Take a look at Doc Bastard’s posts.
Sept 2017
posted by Ideefixe at 1:02 PM on January 29, 2018 [8 favorites]

It seems like Jahi's brain is still functioning at a minimal level, unlike other people who are definitively brain-dead - the researchers cited in the article say that in the last instance, the brain physically deteriorates, and this has not happened with her. The one researcher who observed the extensive videos her mother made felt that the movements Jahi made were too coordinated to be chance. Jahi's mother says in the article that if they'd seen that Jahi's brain had physically deteriorated, they would have let her go. This isn't a "she's clearly dead and they are wrong" case; it's a "she seems to have some kind of minimal consciousness, how do we address that" case.

What a monstrous story - her family all tried so hard to advocate for her after the surgery when they could see that something was wrong and were just rebuffed and rebuffed.
posted by Frowner at 1:05 PM on January 29, 2018 [42 favorites]

In case anyone was as interested as I was in Kaiser Permanente's "Four Habits" model, here is a PDF.
posted by Miko at 1:09 PM on January 29, 2018 [5 favorites]

This isn’t remotely accurate. The family has released edited footage, doctored photos and numerous inaccurate statements.

I'm not seeing anything in those posts from a self-admitted arrogant jerk using the nom de plume "Docbastard" that says anything of the sort.
posted by zombieflanders at 1:18 PM on January 29, 2018 [15 favorites]

Whatever definition of death you adhere to, $150,000 a week is an insane amount to keep someone in that state.
posted by Lutoslawski at 1:21 PM on January 29, 2018 [15 favorites]

Whatever definition of death you adhere to, $150,000 a week is an insane amount to keep someone in that state.
What? Does that mean we should also kill off disabled people who are dependent on 24/7 help because they are expensive? Or elderly people who are dependent on care? That argument makes no sense at all.
I'm a registered organ donor, and if I am run over by a car or something I am happy to give my organs to someone who needs them. But I do not feel ready to make that decision for other people. Also, I have sat at the bedsides of critically ill and dying people and understood that for every single individual that decision is different, and also different over time. The person who says one year she loves life and wants to fight to live may say a few years later that she has lived her life to the fullest and she is ready to leave.
posted by mumimor at 1:31 PM on January 29, 2018 [36 favorites]

I doubt it costs that much in any other country.
posted by elsietheeel at 1:31 PM on January 29, 2018 [14 favorites]

I doubt it costs that much in any other country.
Yeah, that's another thing
posted by mumimor at 1:33 PM on January 29, 2018 [3 favorites]

Whatever definition of death you adhere to, $150,000 a week is an insane amount to keep someone in that state.
posted by Lutoslawski at 1:21 PM on January 29 [2 favorites +] [!]

I don't disagree in particular, but this is an odd thing for a doctor to say.
posted by klanawa at 1:47 PM on January 29, 2018 [3 favorites]

I thought this was a really good line

"African-Americans are twice as likely as whites to ask that their lives be prolonged as much as possible, even in cases of irreversible coma—a preference that likely stems from fears of neglect."

And in this case there was very clear neglect on the past of the hospital in the first place. Stigma, discrimination, and outright abuse are prevalent in our healthcare systems and everyone deserves equal and high end care.

That being said- this is not the decision I would make for myself. It isn't.

I can't and won't analyze this questions of is this child alive because I don't know. I just hope she's given the space and respect she should have to express her evidence and beliefs.
posted by AlexiaSky at 1:50 PM on January 29, 2018 [14 favorites]

I'm not ready right now to wade in to the discussion about Jahi's course after she was declared brain dead, but it seems the hospital (and probably others) completely mishandled their relationship with the family from the beginning. First of all, a tonsillectomy should take more like 30 minutes rather than 4 hours. Even if you include an inferior turbinate reduction and uvulopalatopharyngoplasty (as the Docbastard blog asserts) you are still looking at a surgery that should take about an hour, especially in a specialty hospital (ENT procedures make up a big portion of the OR schedule at any children's hospital so they are generally very experienced with those sorts of surgeries). Why did it take so long? Clearly something wasn't right; how well was the family kept updated during the procedure? Usually only higher risk patients are admitted after tonsillectomies; did they plan to admit her all along and if so was the family aware that she was at increased risk for problems postop? When she started bleeding, why was it not taken more seriously (don't answer; that's mostly a rhetorical question)? That's one of the reasons to watch these patients in the hospital in the first place. Then the author goes on to muddy the waters by simplifying the type of surgery (it was pretty clearly more than just a tonsillectomy) and throwing in the red herring that the surgeon mentioned her right carotid was close to her pharynx; that likely had nothing to do with her postop complications, as carotid bleeding is rapidly fatal (in any sense of the word) without an immediate trip to the OR and repair by a vascular surgeon. But the main thing to me is that the hospital lost the trust of the family pretty quickly, and instead of working to regain that trust moved too quickly to an adversarial relationship with the family.
posted by TedW at 1:56 PM on January 29, 2018 [64 favorites]

Yes TedW has it, in a way I'm not able to articulate. There is something wrong from the outset here, and the hospital is clearly covering over something. The article makes it clear that they have an economic interest in her death (Quote: In cases of wrongful death, California places a cap of two hundred and fifty thousand dollars on damages for pain and suffering. But there is no limit on the amount that can be recovered when a patient is still alive. )
Also, there seems to be a very emotional debate going on about what death is in the US that affects both the public discussion and the professional guidance in this case, which is tragic. Between the obvious malpractice, the economic interests and the polarized debate, the family is caught is a desperate situation where it must be very hard to trust anyone.
posted by mumimor at 2:04 PM on January 29, 2018 [19 favorites]

Indeed, $150,000 a week is an insane amount to keep someone in that state. Do you have some evidence that it costs that much? That seems orders of magnitude off.

This editorial throws out numbers like "hundreds of thousands of dollars per year" which is within the realm of reason, and which sounds like a totally acceptable amount to spend on such a case.
posted by value of information at 2:06 PM on January 29, 2018

She was in the hospital's ICU, so the cost probably includes charges for that.
posted by graventy at 2:09 PM on January 29, 2018

Between the obvious malpractice...

I hope no one takes my comment to suggest that there was malpractice; without a close review of her records I am not in a position to say one way or the other. But this clearly wasn't a routine case, and in those situations it is particularly important to build a good relationship with the family from the beginning.
posted by TedW at 2:11 PM on January 29, 2018 [5 favorites]

The $150,000/week cost comes from the article: "Nailah [Jahi's mom] said that the cost of care was roughly a hundred and fifty thousand dollars a week. " [Context: in intensive care in the New Jersey hospital]
posted by holyrood at 2:24 PM on January 29, 2018 [2 favorites]

I hope no one takes my comment to suggest that there was malpractice
Sorry, of course not.

She was in the hospital's ICU, so the cost probably includes charges for that.
She wasn't in the ICU for years, so that would only account for the time she was in Oakland. Anyway, that was the first thing that caught my attention. Why was she in the ICU, and why wasn't the nurse doing her job there? It's already not normal to go to the ICU after a tonsillectomy, and if the patient starts bleeding as reported in the article, at least in this country, the doctors would come running.

This part is for me the most terrifying part of the article:
Sandra, who is warm and calm and often wears a flower tucked into her hair, arrived at the hospital at ten o’clock. When she saw that Jahi had already filled a two-hundred-millilitre basin with blood, she told a nurse, “I don’t find this to be normal. Do you find this to be normal?” A nurse wrote in her notes that the physicians on duty were “notified several times over course of shift” that Jahi was bleeding. Another nurse wrote that the doctors were “aware of this post op bleeding” but said “there would be no immediate intervention from ENT or Surgery.” Rosen had left the hospital for the day. In his medical records, he had written that Jahi’s right carotid artery appeared abnormally close to the pharynx, a congenital condition that can potentially raise the risk of hemorrhaging. But the nurses responsible for her recovery seemed unaware of the condition and didn’t mention it in their notes. (Rosen’s attorney said that Rosen could not speak about Jahi; the hospital couldn’t comment, either, because of medical-privacy laws, but a lawyer said that the hospital is satisfied that Jahi’s nursing care was appropriate.)

There were twenty-three beds in the intensive-care unit, spread over three rooms. A doctor was standing on the other side of Jahi’s room, and Sandra asked him, “Why aren’t you guys seeing about my granddaughter?” The doctor instructed the nurse on duty not to change Jahi’s hospital gown, so that he could assess how much blood she was losing, and to spray Afrin in her nose. Sandra, who teaches a workshop at Kaiser Permanente on the “four-habits model,” a method for improving empathy with patients, told me she was surprised that the doctor never introduced himself. “He was all frowned up with his arms crossed,” she said. “It was like he thought we were dirt.”

At twelve-thirty in the morning, Sandra saw on Jahi’s monitor that her oxygen-saturation levels had fallen to seventy-nine per cent. She yelled to the medical staff, and several nurses and doctors ran toward Jahi and began working to intubate her. Sandra said that she heard one doctor say, “Oh, shit, her heart stopped.” It took two and a half hours to restore Jahi’s heartbeat and to stabilize her breathing. Sandra said that when she saw Rosen early the next morning he looked as if he’d been crying.
I can literally not imagine that ever happening to me in a hospital. I am not a healthcare worker, but I spend a lot of time in hospitals both for work and for family reasons, and this is not what I would describe as normal. Obviously, we don't know if the family is telling the truth about what happened, or if they misunderstood something. But I can't see a young girl bleeding 200 ml after a tonsillectomy in the ICU and no-one reacting, I just can't. It's grotesque.
posted by mumimor at 2:26 PM on January 29, 2018 [19 favorites]

The $150,000/week cost comes from the article: "Nailah [Jahi's mom] said that the cost of care was roughly a hundred and fifty thousand dollars a week. " [Context: in intensive care in the New Jersey hospital]

Oops, sorry -- when I searched it I searched for the numerals so I didn't see this.
posted by value of information at 2:33 PM on January 29, 2018

But the article paints the story as a case of is this girl alive or dead, and fundamentally, she's dead

That's really easy distinction to make when you're not the black mother being said of this your black child by white doctors. Or even worse when they send in a black doctor to condescend with 'she wouldn’t look good for the funeral, adding, “You know how we are.”.' and it was clearly stated that african-americans receive less care regardless of insurance and education. She sees her role as fighting for her daughter when White America says she worthless. You and the doctors might think its futile while she sees it as her duty as a mother.

There are a lot of living patients who will grasp for the more remote possibility of treatment regards of standard of living fleeting extension of life given, or cost to themselves or the system. Are whole vernacular connotes struggle, 'fighting cancer' 'survivor'.

Would you expect anything less of a loved or yourself if you thought there was a chance?
posted by MiltonRandKalman at 2:37 PM on January 29, 2018 [26 favorites]

Make them pay and keep paying for their effective genocide. Never let it be far from their minds, catch them in parking lots and scream at them for their mortal neglect, caused by the racism, and narcissism of medical elites.
posted by Oyéah at 2:41 PM on January 29, 2018 [5 favorites]

A nurse wrote in her notes that the physicians on duty were “notified several times over course of shift” that Jahi was bleeding. Another nurse wrote that the doctors were “aware of this post op bleeding” but said “there would be no immediate intervention from ENT or Surgery.”

I’m a nurse. I didn’t provide care for Jahi McMath, nor do I work in any of the hospitals in which she received care. I have no knowledge of her operative course or her postoperative recovery beyond what has been made public.

All that said, I have called lots of providers to report unexpected findings based on my nursing assessments and I have had my concerns dismissed or minimized more times than I can count. And I have written LOTS of nursing notes that say some variation of “I have done everything possible within my scope of practice to escalate these unusual findings and mitigate their dangers but have received no new provider orders to change the plan of care. I will continue to monitor and readdress as needed.”

[...] why wasn't the nurse doing her job there?

I would be willing to bet a lot of money that the nurses who wrote those notes were keenly aware that something was wrong. They probably documented the way they did to provide a written record that they were, in fact, doing their jobs.
posted by jesourie at 3:08 PM on January 29, 2018 [62 favorites]

Yeah, I always find these articles really tough.

I've made this decision for my daughter. She didn't get enough oxygen during a mismanaged delivery (we are white, but we know that women of colour are even more likely to have the kind of lack of competent care that I did), and she was intubated, extubated, and re-intubated. Somewhere in there (probably the first incident, because her blood gasses were so bad) she suffered catastrophic damage to her brain and other organs. We had 79 hours with her while we got a picture of how bad the situation was, and we took her off the ventilator, and she died about 10 hours after that.

I can tell you that my daughter was definitely alive during those ten hours, though, she fought for her life even though she didn't really know how to breathe that well, and although she could not move, speak, hear, see, or demonstrate any reflexes including swallowing her own saliva, when she actually passed away we could tell the difference.

I think any of the experts who were referring to this family's daughter as a corpse should really think about their lack of compassion.

In my daughter's case, her father and I did believe all the evidence we had that she did not have enough brain activity to have any quality of life that we could recognize and we removed the artificial supports. We had a compassionate and highly competent medical team that answered all our questions and presented their findings very clearly, and also made recommendations based on their experience - experience we did not have. We, however, were the parents and it was clear that we were the decision makers.

We didn't have a huge amount of time, or at least felt we didn't, horrifically, because the hospital staff believed that she was learning to breathe on her own, and if she did, we would have been in a very different situation where we would have had to decide about withholding food rather than removing artificial supports. We felt very differently about those two possibilities. (We didn't know what would happen until the direction became clear a few hours after we did have them take her off the respirator.) We had to examine, that whole period of time, as things were unfolding, whether we were concerned about her quality of life, or just our own. I was also in a bad way.

I guess what I most want to say is that you may think it's a clear decision and...it may be, and it may not be. For my husband and I at the time, and I am not really religious, I will say that we were graced with enough clarity to choose. But I know that when I look at my sons, whom I know much better than from months in the womb, I might not feel the same way, even with the same evidence.

With stem cell research and stories like these, I do actually sit with the idea that we may have given up too early. It's painful. That's okay. When you make a decision like this you live with that choice for the rest of your life. For us, that's what we chose.

I support Nailah in her journey too. I'm not there. She is.

If we think the costs of this kind of ongoing medical support are too high for the small percentage of people who will want to pursue them, then maybe that is motivation for hospitals to work harder to reduce medical error. I say this as someone who dropped the lawsuit, especially as my daughter didn't need any care.
posted by warriorqueen at 3:08 PM on January 29, 2018 [112 favorites]

I would be willing to bet a lot of money that the nurses who wrote those notes were keenly aware that something was wrong. They probably documented the way they did to provide a written record that they were, in fact, doing their jobs.
jesourie, I realized this after the edit window closed, and I think you are exactly right. Sorry for the injustice of my comment.

warriorqueen, what a terrible choice for you. I trust you have made the right decision and hope you have found peace with it. Many hugs from a distant place
posted by mumimor at 3:15 PM on January 29, 2018 [3 favorites]

But the article paints the story as a case of is this girl alive or dead, and fundamentally, she's dead

Where exactly is that line, though? That's what makes this so completely different from Terry Schiavo.


I remember when this family was fighting Oakland Children's Hospital and I never knew what happened afterwards. I do Oakland Children's Hospital coming across really uncompassionately in their statements, but I can't remember more details.
posted by small_ruminant at 3:20 PM on January 29, 2018 [1 favorite]

They probably documented the way they did to provide a written record that they were, in fact, doing their jobs.

That's exactly what I assumed when I saw the lines about their notes.
posted by small_ruminant at 3:22 PM on January 29, 2018

I wasn't even sure if I was going to come in here and say anything, or read the article, as this sort of thing tends to be highly triggering to me - My mother was in a horrific auto accident, and after a week in the hospital, it was decision time - and I chose to withdraw support. So when I came across this, I thought it was going to be one of those things that made me doubt the decision I made and why I made it. This is not that sort of article or issue - there are some very different things in play here, and the amount of neglect shown to the family here on so many levels is horrifying.

It's notable that in my own experience, an MRI was performed for both diagnostic reasons as well as to inform our decisions rather quickly into this, followed by a second MRI come decision time. It was very very clear that there was literally no brain activity whatsoever, and we didn't have the same responses that this family experienced - No change in heart beat, no lifted fingers or similar... just the occasional random jerky nightmarish motion - one that if you saw, would immediately put you at unease due to how unnatural it was.

Throughout all of it, the doctors were professional, were caring, and went out of their way to give us the attention and answers we desired. We were treated with compassion by everyone involved. And when it came to decision time, they gave us their opinion of the situation (bleak) and the reasons for it, but made it clear that the decision as to what to do was up to us, and they would continue support and care if that was our desire.

In short - everything that happened to us played out about the opposite of how it did here. As a white guy, I have become more and more aware of my own racial privilege for some time, but it had never occurred to me that how we were treated in this situation was any different than how someone else would be. It's clear upon reading this that what I experienced is not necessarily the experience that others would have.

There was much that made the decision easier for us - one of which being, my mother literally saying that if she was ever at a point where she was effectively "brain-dead" that we ABSOLUTELY should NOT maintain support, as she did not want to be in that state. I have no idea what experiences she went through that informed these feelings, but she stated it multiple times - could not be more clear. Even with that, even with the medical evidence - it is a decision that haunts me to this day.

The sort of experience this family went through brings so much more reason to doubt - from how the staff treated them, to what they were seeing, to - well, all of it. If I had gone through the same experiences as them, my decision wouldn't have been as clear. The treatment and care that I thought was the norm should absolutely BE the norm -
It's a traumatic experience for everyone involved, no matter how it plays out, no matter the outcome
posted by MysticMCJ at 3:23 PM on January 29, 2018 [24 favorites]

As I recall Oakland Childrens Hospital went out of their way to portray the family as uneducated, superstitious, didn't understand science and hysterical. I also got the impression that all the other parties involved (attorneys, media etc) felt free to also make up their own portrayal of the family as they saw fit. Which I agree would not happen to a prominent or wealthy family at all.

While I don't personally agree with keeping someone with little to no quality of life alive in this state and would not want it for myself, that is a decision for the family. And it was pretty clear, I thought, that the hospital did not feel they were qualified to make it and had no problem saying that publicly and rudely. It was pretty shocking.

One major problem with care seems to be that patients in a hospital have to wait for orders from a doctor who does not work for the hospital and may not be around. That's always seemed weird to me. Did this doctor have any action taken against him for not responding? I bet $10 he did not.
posted by fshgrl at 3:45 PM on January 29, 2018 [9 favorites]

This story is angering me in a way that is bad for my health and might get the mods on me any minute. So I will shut down my computer and meditate until I can relax. But before that there is one thing I need to comment on. When Jahi was bleeding to death, Sandra says to a fellow nurse: “I don’t find this to be normal. Do you find this to be normal?” This is so much the language of an African American in the face of authority. It makes my whole being hurt to read it. You know what I would say? I'd ask the head of the ICU, not the nurse, if he or she was fucking wrong in their head, and if they really needed me to call the head of the hospital privately for them to do something. And I'd easily get the number of that CEO, and I'd call them with no delay. But that would never happen because I'm a white lady in a country with socialist healthcare, and even though mistakes and malpractice and even racism happens, its just not ever on this scale.
The reason this gets me so angry is that I am a mother of two girls, and each and every time I have taken them to the hospital, I have thought of it as an immense act of trust. I trust the hospital and the healthcare system, but I also worry, because I know the doctors and nurses are overworked and underpaid, and I know I need to be engaged in every action to make sure they do right — not because they are incompetent, but because they are stressed out. Reading this article, I feel the helplessness of the family, and I just feel despair. They can't do what I do. They can't help Jahi at all.
posted by mumimor at 4:08 PM on January 29, 2018 [20 favorites]

Christ, that was a tough read.

“I’ve thought long and hard about that. In order to support public trust in the scientific enterprise, I guess I feel that the medical profession is always going to be better off, in the long run, if we speak honestly and truthfully about what we know.”

Quoting for emphasis. I wish more doctors felt this way.
posted by The Underpants Monster at 4:53 PM on January 29, 2018 [9 favorites]

I'm glad this followup story was written, but it was extremely painful to read. And as a Bay Area resident, I agree that the CHO did not do a good job at all to appear compassionate, and I think it has to do with the wrongful death cap. UGH!
posted by honey badger at 7:10 PM on January 29, 2018 [1 favorite]

For everyone reading this who is reliving a tragedy, I'm so sorry.

My driver's license tags me as an organ donor, and I recommend it. If I get hit by a bus, use what you can. But no one is required to donate organs, and the decision to terminate health care should not be done to provide organs; that would lead to horrors.

I am uneasy with embracing death. This whole story feels deeply wrong. How was a death certificate written for a breathing person? There must be standards for certification of death. And, of course, we have few legal options for choosing to terminate life support when we want to - in great pain and suffering, yet this family could not choose to have their child's life supported. The codification of terminating support seems so expedient.

Part of my flinching at reading this comes from reading Johnny Got His Gun, and I'm glad they sing to her, hug her, etc. If even a small part of her human self is present, the loneliness of being in a broken body would be profound. Being compassionate, caring for the profoundly disabled, caring for the dying, are not just about the person being cared for. They are about being caring and compassionate.
posted by theora55 at 7:24 PM on January 29, 2018 [4 favorites]

can anyone elaborate on this a bit?

The laws in both states were written to accommodate Orthodox Jews, some of whom believe, citing the Talmud, that the presence of breath signifies life.

I looked into this once and there's no more consensus in the Orthodox Jewish world than among non-Orthodox, or indeed secular Jews. This is the sort of thing that is extremely situationally dependant and hard to reason about from first principles. The only established principles that I'm aware of are: (a) nothing can be done that may hasten death; but (b) in extremity, impediments to death may be removed. Threading this philosophical needle is not easy.

As a practical matter, I don't think Orthodox Jewish caregivers are often inclined or encouraged to seek legalistic advice on these matters. Medical personnel, rightly or wrongly, avoid saying things like "the amount of morphine I'm dispensing for pain relief is going to stop him breathing". In my limited experience, the caregivers often don't know what they're consenting to - and since they're almost always overwrought and unqualified to make an informed decision at that time, that's possibly for the best. Things happen, people act with good intent, the responsibility is divided and no blame attaches to anyone.
posted by Joe in Australia at 7:32 PM on January 29, 2018

How was a death certificate written for a breathing person? There must be standards for certification of death.

This part stands out to me as wrong as well. I understand removing someone from life support when they are declared brain dead, but it was my impression that the time of death was declared only after the body stopped functioning. I am hugely, hugely not okay with a death certificate being issued for a body that was still alive.

And it’s also a problem when the girl has lived on for years past her “death date”, and it’s additionally a problem when the hospital making the determination of death is on the hook for less dollars if the girl is dead rather than if alive.

Also they are saying she has more brain functioning now than when she was declared dead, and I really, really feel like the amount the need for donor organs playing into how less privileged people are being declared dead is a huge fucking problem. Enormous.
posted by corb at 8:35 PM on January 29, 2018 [13 favorites]

Thank you for sharing your story warriorqueen.
posted by latkes at 8:49 PM on January 29, 2018 [1 favorite]

“I’ve thought long and hard about that. In order to support public trust in the scientific enterprise, I guess I feel that the medical profession is always going to be better off, in the long run, if we speak honestly and truthfully about what we know.”

Quoting for emphasis. I wish more doctors felt this way.

It won't happen any time soon, because doctors as a professional demographic aren't generally trained to think in the way academic scientists, philosophers, and researchers are. Truog's remarks come across as the sanest one out of the ones described in the piece, but he's exceptional exactly because he's the director of bioethics at Harvard. Again and again, it's how a person's environment exposes them to values and incentivizes their assumptions and worldviews and thus their social behaviors; in order for the regular doctors working "in the trenches", in hospitals, etc., to engender a more progressive (meaning: less racist, less dehumanizing, no "we're stretched thin" excusing) understanding, profound structural changes at the institutional and societal levels have to happen.

Those couple paragraphs are worth thinking about:

Truog, the director of the Center of Bioethics at Harvard, said that once, when he gave an academic talk on brain death, he described it as a catastrophic brain injury, rather than death. A transplant physician stood up and told him, “You should be ashamed of yourself. What you are doing is immoral: to put doubts in the minds of people about a practice that is saving countless lives.” Truog told me, “I’ve thought long and hard about that. In order to support public trust in the scientific enterprise, I guess I feel that the medical profession is always going to be better off, in the long run, if we speak honestly and truthfully about what we know.”

He continued, “I don’t think there’s anything morally wrong with the fact that we take organs from these people, even though there is no scientific reason for believing them to be dead. I believe it is a morally virtuous thing to do and we ought to facilitate it. We are doing the right thing for the wrong reasons.”

Reading this piece was so saddening for me. I hope there's something to be learned from it.
posted by polymodus at 8:58 PM on January 29, 2018 [7 favorites]

There's so much to this about racism, culture, philosophy. There is no 'correct' definition of death. And there are a range of human feelings about what level of intervention we want at what level of capacity. Letting a few white Harvard philosophers define what life is replicates and amplifies existing racial injustices. I find this story really important personally - I'm a nurse in Oakland and this all feels very familiar, so I find it really important that I think about it deeply. On one hand it's easy to just reinforce my beliefs, on another, it's an opportunity to examine my role in amplifying harms.

I do think one actionable intervention that doctors can take from this is, it's OK, important, to apologize.

Imagine if, when Dr Rosen came back to the hospital the next morning, instead of crying alone, he had come to the family, with his heart open, and acknowledged wrong-doing, apologized, and let the family speak without countering or arguing.

Then, what if the hospital had come to the family with a compensation package to acknowledge their role in Jahi's death?

Then, what if the hospital had used this accident as a teaching opportunity, and invited Jahi's family to participate in this teaching, to the extent that they cared to be involved, to help avoid such poor practices in the future?

There is limited but good evidence that apologizing can reduce litigation. Beyond that, it is simply the right and just thing to do, when you have killed someone's child, or caused her to be permanently and severely disabled.

I'm not sure the goal should be a universal definition of death. Even as I do think the default medical order should be not to resuscitate rather than to preserve life at any cost.
posted by latkes at 9:12 PM on January 29, 2018 [13 favorites]

Looking at some other cases, like the Martin Pistorius case, it does seem clear that at least in some cases, the brain is capable of recovering from Truog’s “catastrophic injuries” that leave people in vegetative states. It’s really worth asking how much of the “dead is dead” absolutism is more about making doctors feel comfortable harvesting organs. We don’t know much about why some people can recover from some vegetative states but not others, and we may never be able to get that information if the hospitals are encouraging pulling the plug early on.
posted by corb at 9:33 PM on January 29, 2018 [2 favorites]

How was a death certificate written for a breathing person?

Jahi was not a breathing person when the death certificate was issued. She's been on a ventilator, which in effect breathes for her. According to the article, "She was briefly disconnected from the ventilator, as a test, but her lungs filled with carbon dioxide." Did I miss something?

By the standards of brain death, she is dead. The question is whether we think brain death counts as death. Personally I think it should, and I hope that this case doesn't call that standard into legal question in the U.S. (because while the intersection of brain death and organ donation is kind of gray, I nevertheless believe that our interest in organ donation generally must take precedence over the preservation of people who are marginally alive).

However, before this article I was never in favor of Jahi being kept on the ventilator. But reading the details of what happened to her in the hospital - the evidence, that is, that her death was the result of racist neglect - I now think that the rightest thing here is to let her family have this. The thing is, Jahi can't suffer in a meaningful way, so it's not harmful to her to be on the machines. Her preservation also doesn't appear to be harming her family, although I suppose that the question of whether this is dealing them long-term psychological damage (or whether this damage is better/worse than the damage that would be caused by Jahi being taken off the machines before they're ready) is not for me to answer. The one "person" it is currently harming is the New Jersey taxpayer. But is the cost of keeping Jahi nursed and on the machines ever going to exceed to the theoretical cost, both economic and human, that American slavery/racism has extracted from this family over the course of centuries?

(That's a rhetorical question, but just to be clear: my answer is no. Not for a second.)
posted by desert outpost at 10:13 PM on January 29, 2018 [2 favorites]

I think what bothers me the most about stories like this is that we cannot know if people like this feel pain or discomfort. Do they itch unbearably? Are they afraid? We could essentially be torturing them for months or years and not know it. In many ways we already do that the elderly and terminally ill, prolonging their suffering for what? Is it the right thing to do? Is it fair to ask medical staff to do it? know I absolutely do not want to be kept alive under these conditions and I think the majority of people would agree (Having said that it's not an accident she ended up at a Catholic hospital).

It sounds like her family has struggle with this and have made some decisions which is good, better than the earlier media reports anyway. But she is still missing most of her brainstem, in the best case scenario what is her quality of life? Meanwhile her mother has upended her other (healthy) children's lives in a pretty dramatic way, especially the older teen son. None of this is easy but I'll never be convinced that quantity of life is more important than quality. Which is why I have a DNR and some pretty binding legal paperwork to keep my Dad's Catholic self out of my health care should it come to that. He'd totally do this.
posted by fshgrl at 10:41 PM on January 29, 2018 [8 favorites]

Jahi was not a breathing person when the death certificate was issued. She's been on a ventilator, which in effect breathes for her. According to the article, "She was briefly disconnected from the ventilator, as a test, but her lungs filled with carbon dioxide." Did I miss something?
Hi there, it's your friendly neighborhood ventilator-dependent quadriplegic here again. To me that sentence is fairly ambiguous, because we don't know what exactly they mean by "a brief time". Do they mean that they tried to wean her off the ventilator, but after, say, an hour of shallow breathing she had carbon dioxide buildup as measured by a blood gas test? Or do they mean that she had no spontaneous respiration at all? Honestly, I'm guessing the former, because if she had no spontaneous respiration surely the hospital would have unambiguously stated that in their list of reasons they considered her dead.
posted by Soliloquy at 1:16 AM on January 30, 2018 [21 favorites]

fshgrl, there's this part:

Nailah said that nearly every day she asks Jahi, “Are you O.K. with what I’m doing? Do you want to live? Are you suffering?” She said, “I know that things change—people change. If Jahi has given up and doesn’t want to be here anymore, I’m just going to go with what she wants.” (She now has a do-not-resuscitate order for Jahi.) She said that Jahi answers her questions by either squeezing her hand or pressing her own index finger toward her thumb, a signal for “yes” that Nailah taught her. “When I see that,” she said, “I think, Who am I to not want to live? Because many days I do want to die. But then I see her every day, trying her best.”

posted by aniola at 4:47 AM on January 30, 2018 [1 favorite]

Oh, and this:

Truog thought that the social context of the family’s decision had been ignored. African-Americans are twice as likely as whites to ask that their lives be prolonged as much as possible, even in cases of irreversible coma—a preference that likely stems from fears of neglect. A large body of research has shown that black patients are less likely to get appropriate medications and surgeries than white ones are, regardless of their insurance or education level, and more likely to receive undesirable medical interventions, like amputations.

posted by aniola at 4:51 AM on January 30, 2018 [2 favorites]

It’s really worth asking how much of the “dead is dead” absolutism is more about making doctors feel comfortable harvesting organs.

Indeed. From the article:

They proposed that the irreversible destruction of the brain should be defined as death, giving two reasons: to relieve the burden on families and hospitals, which were providing futile care to patients who would never recover, and to address the fact that “obsolete criteria for the definition of death can lead to controversy in obtaining organs for transplantation,” a field that had developed rapidly; in the previous five years, doctors had performed the world’s first transplant of a pancreas, a liver, a lung, and a heart. In an earlier draft, the second reason was stated more directly: “There is great need for the tissues and organs of the hopelessly comatose in order to restore to health those who are still salvageable.” (The sentence was revised after Harvard’s medical dean wrote that “the connotation of this statement is unfortunate.”)

and

Truog, the director of the Center of Bioethics at Harvard, said that once, when he gave an academic talk on brain death, he described it as a catastrophic brain injury, rather than death. A transplant physician stood up and told him, “You should be ashamed of yourself. What you are doing is immoral: to put doubts in the minds of people about a practice that is saving countless lives.”

posted by Halloween Jack at 6:17 AM on January 30, 2018 [3 favorites]

Whatever definition of death you adhere to, $150,000 a week is an insane amount to keep someone in that state.

What? Does that mean we should also kill off disabled people who are dependent on 24/7 help because they are expensive? Or elderly people who are dependent on care?

Of course it doesn't mean that, that's ridiculous. I can both feel that we should spend whatever we need to to provide excellent care for people, while at the same time being critical of healthcare costs, especially when we don't have a clear idea of what outcomes we are paying for. Furthermore, this case is not the same as a disabled or elderly person who requires round the clock help, and I think it's a bit disingenuous to suggest so.

But I do not feel ready to make that decision for other people. Also, I have sat at the bedsides of critically ill and dying people and understood that for every single individual that decision is different

Of course, I agree completely. The question in this case, however, and in many similar cases, is whether they can make that choice at all. If they cannot, then someone else must make the choice for them. While it is tempting to view keeping them alive, even artificially, as the 'default', it is in fact an active choice we are making for them. We decide for them either way. It's what makes these cases difficult.
posted by Lutoslawski at 6:48 AM on January 30, 2018 [3 favorites]

So—I'm a neurologist. I've "diagnosed" brain death a few dozen times. In my role as a clinical neurophysiologist, I interpret electrophysiologic tests that have either confirmed brain death or aided in family decisions to withdraw care in many more instances.

The electroencephalogram (EEG) is considered an optional adjunctive test for the determination of brain death; it is not required. To support the diagnosis of brain death, the EEG has to fail to show any spontaneous or stimulus-reactive excursions of voltage of two microvolts or more during a recording of at least 30 min.

This can actually be difficult to achieve. Consider a patient with complete destruction of the brainstem and widespread, but not complete, destruction of the cerebrum. There will be "irreversible apneic coma" in the sense that the patient will be profoundly unresponsive to the environment, unable to breathe on their own, and incapable of significantly recovering from that state. There may still be EEG from the patches of cerebrum not destroyed. It doesn't have to be much—certainly much less than any "normal" pattern of wakefulness—to thwart EEG criteria for brain death.

As a result, EEG is not used very often for brain death. At least not at the institutions I've worked nor at those of my friends and colleagues. There are therefore patients who satisfy clinical criteria for brain death (which legally suffice), who might have electrophysiologic evidence of minimal cerebral activity if they were only measured.

I don't write this because I find it abhorrent. Like most physicians, I believe that the concept of brain death has some real utility. Patients who are dead by brain criteria will not recover to a point of consciousness. They will not walk or talk. They do have precious organs inside them.

Even cessation of breathing or heartbeat are arbitrary criteria. Consider that this must be "irreversible" but that reversibility has depended on both technological achievement and intention. As an example of the latter, patients with profound and irreversible neurologic injury but who are not dead by brain criteria, whose families are desirous of donating their organs, may be allowed to "die" from circulatory arrest. They are brought to an OR, withdrawn from the ventilator, allowed to arrest, and after a period of minutes, their organs are harvested. The "irreversibility" in this example—as it is, more prosaically, in those of non-donors allowed to die by intentional and ethical withdrawal of futile medical care—comes from intention not to intervene.

Following irreversible cardiac arrest, many tissues of the body continue to be "alive"—to have live cells—for minutes or even hours. Complementarily, a self-evidently live human being may have a substantial portion of their body "die" in the sense of losing viability of all cells within it—this is the case in gangrene.

I do find it odd and slightly creepy how the ragged scientific and philosophical edges of "brain death" are automatically plastered square by most physicians, and how automatically the appeal to organ donation appears as the rationale.

I feel badly about the attitude I took to one family when I was still a trainee. They wanted to maintain their loved one on the ventilator for a day so that another member of the family, then traveling, could see them before withdrawing care. The patient was dead by brain criteria, dead legally and (so I supposed) morally. I inflexibly assumed it was not just senseless but silly and stupid to maintain the vent. I took their concerns to the attending, who pointed out we were not in need of the room nor of the vent, and that keeping the status quo for a number of hours was "reasonable."

I hope I'm not so inflexible in my thinking and judgment anymore.

I am fascinated that Jahi had seemingly retained cerebral tissue. The absence of necrosis after several months ought to be primary evidence that circulation was retained in some parts of the brain. (NB that some cultures have traditionally used the onset of decomposition as the determinative marker of death.) This doesn't mean that Jahi has any chance of significant neurologic recovery. My choice, if she were my daughter, would be to withdraw care. I empathize with Jahi's mother although I find her decision to prolong Jahi's life unpalatable personally.

Jahi's mother's heart is obviously hers to give in whatever way she chooses. Access to medical resources is more problematic. I do believe that medical care is a human right. I recognize that medical resources are finite and that they must be, and in fact are, rationed. In our current US system, care is rationed fairly inequitably. I have mixed feelings about this case in particular. If we think about a more equitable system of health care provision, how do we think about cases like Jahi's? Or—how does the equitable rationing of medical resources affect our thoughts on brain death?

Patients in "irreversible apneic coma without brainstem reflexes" might perhaps be deemed to be alive but not to merit the investment of resources required to maintain them. "Merit" and "worthiness" for life obviously gets prickly quite fast and this case in particular has issues with race and distrust. Maybe it's possible it's less thorny to treat brain death as in all respects equivalent to death. The observation from Truog in the article that honesty and forthrightness with patients and families may be the most advantageous position, however, conforms to my own thinking that withholding information from patients, even when believed to be "in their best interests," can systemically lead to distrust which overrides any individual benefits.
posted by adoarns at 6:51 AM on January 30, 2018 [44 favorites]

An incredibly tiny percentage of people who die become organ donors after death. On the order of 10-20k per year in the US. Only 1 in several thousand people who die are even able to be donors due to manner of death etc. I really doubt it's driving policy on a massive scale the way people here think.

Aniola, yes I read the article. I still wonder. I know I would bit want to be kept alive that way and I wouldn't choose it for a family member either.
posted by fshgrl at 6:52 AM on January 30, 2018 [1 favorite]

Access to medical resources is more problematic. I do believe that medical care is a human right. I recognize that medical resources are finite and that they must be, and in fact are, rationed. In our current US system, care is rationed fairly inequitably. I have mixed feelings about this case in particular. If we think about a more equitable system of health care provision, how do we think about cases like Jahi's? Or—how does the equitable rationing of medical resources affect our thoughts on brain death?

There are many situations where it would be meaningful to ration care, both for economic reasons and for charity. IMO, this is not that.
Some time ago I read this famous, thoughtful, and in my view wise article by Atul Gawande on end of life care. It resonates with my personal experience and of those of many people I have met either during my research or privately. It describes the many dilemmas of letting go, both as a patient, a family member and as medical staff. Right when I was reading it, my own dad had recently died, and also, there was a huge scandal at the largest hospital where I was working about what the tabloids called "a secret code" on some patients' journals, saying they should not be resuscitated if they passed during surgery. Long story, obviously there was no secret code but there was bad management. Right then I went to a big town hall about healthcare, with 1000 attendees seated at round tables, and at each table there were politicians, healthcare staff and ordinary citizens. At my table was one of those patients who would have had that "secret code" on his papers if he were admitted to a hospital. And during the morning, we were all explained about the costs of care and medications, about end of life consultation, and also, we had a very frank discussion about what had happened at the big hospital. After that, the vulnerable old man said to everyone that if he ever was in that situation, he wouldn't want to be resuscitated. In other words, he accepted that his healthcare was cut down - both for him to have a better end of life, and to make way for a younger person who could be helped by expensive medication. He accepted because the people at that round table were honest with him, and a poll showed that this had resonated through the great hall we were in: a large majority of the people there voted for improved end of life counseling, more funding for hospices and palliative care, and better information during difficult surgery or other procedures, like chemo therapy. I experienced the consequences of that vote a few years later when another family member became ill.
In the case of Jahi, and that of the young man whose family I described above, there are entirely different aspects in play, but most importantly, the families of those young people did not want to turn off the respirators. Period. I cannot see why that should not be respected.
In both cases, a feeling of injustice and anger combined with the obvious grief probably contributed to their decision. But their motivations are not relevant. First of all, I think that the families have the last word here, and should not be argued with. Second, if one would ever want to persuade these families that the reality they were experiencing — of little signs of cognizance and recognition — were imagined, the first thing to do would be to hear them and respect them. The family I knew would never have changed their mind, regardless of what was said or done, and we are fortunate to live in a country where that was and is respected, regardless of costs. Ours is not a religious country, but there is a strong belief that one cannot value one person's life against another's, that it must be the choice of the patient or their families, not the doctors' or the government's.

I guess this is a very long answer to your question: in a more equitable system, there is room for a family to make a choice that goes against the economy and rationality of the system. I think one reason is that the system belongs to us all, not to any hospital owners. If "my" family had been badly treated, it would have been a political and democratic problem, not only an issue of rights and wrongs on either side of a relation between provider and consumer.
posted by mumimor at 7:52 AM on January 30, 2018 [8 favorites]

Stanford Encyclopedia of Philosophy on the allocation of organs
posted by aniola at 8:23 AM on January 30, 2018

to say more about the systemic racism angle esp when it concerns black Americans and their interactions with the medical system, there is a really horrifying and cynicism inducing book called Medical Apartheid: The Dark History of Medical Experimentation on Black Americans from Colonial Times to the Present by Harriet A. Washington. one of her points is touched in brief by a bioethicist who notes that the media coverage ignores the family's social context. the medical research community, for the most part, is aware of the historical trauma when it comes to medicine and black folks in the US. but I think the issue arises when we get to the messy business of medical practice, where decision-making and prioritizing express much more the ideology and frames of the practitioner than of some evidence-based understanding of best practice, especially considering that the research perspective is almost always written for a broad audience, covering millions of outcomes, and individual decisions within a clinical setting are almost never made with that in mind

whether or not there's a case for medical malpractice, Jahi and her family seem to consistently experience abuse and a diminishing of their perspective and opinion in nearly every one of their contacts with the medical institution in the ways that black folks have been experiencing discrimination and dehumanization by the medical institution for centuries. they say one thing and the doctors, the ethics boards, the hospital management, and even busybody academics who know nothing about the issue, living thousands of miles away, have the audacity to not only make absurdly cruel statements directly to the family but also feel the need to characterize them to a major paper as lesser, irrational beings. and their only real 'failing', as far as I can tell, is not having faith in an institution that has abused them immediately, abused them in the past, and seem willing and able to abuse them in the future

I don't know anything about the line dividing medical life and medical death - but I do know that a just world would see industry wide policies reflecting a critical understanding of systemic racism and how that affects PoC's expectations when they come in for treatment. we'd see training workshops on cultural sensitivity and anti-oppressive practice, we'd have higher standards for older practitioners and their continuing education particularly when it comes to patient care, and we'd see so much more. why we're not there, I think, is as much due to our own apathy towards standing up and defending, as citizen advocates, the people who suffer the worst, as it is due to individual doctors, large corporate hospitals, and the medical institutions as a whole
posted by runt at 9:10 AM on January 30, 2018 [24 favorites]

As I recall Oakland Childrens Hospital went out of their way to portray the family as uneducated, superstitious, didn't understand science and hysterical. I also got the impression that all the other parties involved (attorneys, media etc) felt free to also make up their own portrayal of the family as they saw fit.

fshgrl, that is absolutely my recollection, too. I spent a couple of minutes googling to see if I could find something in writing that supported that, but I couldn't. I did mostly hear about this on the news (verbally), though. I'm glad to have my recollection supported by you. At the time, I remember thinking that even if the hospital was correct, which they turns out they weren't, imo, it was a pretty appalling narrative to put out their about a family whose lives they destroyed.
posted by small_ruminant at 1:14 PM on February 1, 2018 [2 favorites]

Mumimor: you say,

You know what I would say? I'd ask the head of the ICU, not the nurse, if he or she was fucking wrong in their head, and if they really needed me to call the head of the hospital privately for them to do something. And I'd easily get the number of that CEO, and I'd call them with no delay. But that would never happen because I'm a white lady in a country with socialist healthcare, and even though mistakes and malpractice and even racism happens, its just not ever on this scale.

I'm also a white lady in a country with 'socialized' health care. And I can tell you that in New Zealand, no, you would not get the number of that CEO. When my husband was in hospital after a massive heart attack, the nurses *would not* put on his records that he should receive low sodium meals. Seriously, he was on the cardiac care unit, where everyone should have low sodium meals, and they simply would not take the time to note that on his record. Every single day, every single meal, I would beg to talk to the head nurse and she would glare at me as she sat at her desk with a big sign behind her reminding me that she would have the police escort me out if she thought that I was creating a problem, and she would say that she would try to note the low sodium meal down on his records. I could actually see the file on her desk, and it never happened.

So sadly, even White Privilege doesn't even work sometimes.
posted by tumbling at 2:39 AM on February 6, 2018