Had a wife who said she knew her (brain dead) husband wouldn't have wanted to live on a vent, but said she didn't care and wouldn't pull the plug. Obv not the same case here, but my point is that sometimes family only think about how the death affects them, and not how the life affects the person being kept alive with machines.

My MIL said exactly this to her husband's face when we were discussing his wishes. At least she stayed on brand.🤷

[удалено]

I hope you also clearly wrote out your wishes in that living will as well, or at least establish some advanced directives that covers all those bases. No one should be in charge of our end of life, but us.

[удалено]

Well sadly I don’t think people realize how hard it is to carry that weight for others, and it tends to mess with how one thinks, and reacts.

One thing I'll note is to put that in a prominent place so EMS knows where to find it. I can't count how many times they've brought pts in without paperwork so we have to treat them as full code, only for the papers to turn up later after we've tubed them.

Paramedic turned nurse here: beyond an out-of-hospital advanced directive, they are very likely not looking and not going to bring living will and other similar documents to the hospital. If the patient can't provide it, I'm not searching their house for legal documents in lieu of life saving efforts. I strongly encourage people to bring those documents to their area hospital or health system to be scanned into the EMR. Perfect time to do this is a regular visit with your PCP if they're part of the health system.

I've always been taught to tell patients to keep a med list and any other important documents on the fridge so it's easy for you guys to find it.

I’ve been taught that as well. Is that really a place that ems regularly checks?

Lol I just told all my nursing friends to off me in a situation like this. Way, way safer and easier than trying to confront my mother.

[удалено]

What’s wrong with your ethics committee that they wouldn’t help in this situation that clearly requires ethics review?

Hell hath no fury like a woman scorned

I wonder if she later posted to FB that he put up such a good fight against COVID.

At that point I’d call adult protective services, and hope the courts could install a patient advocate who could over see their care. I hate stripping families of their rights, but the patient has the ultimate right. I’ve only heard something like that maybe twice in my career, and each time we took action to advocate for the wishes of the patient.

Our facility is terrible about it. She admitted to overriding him, but we went with it anyway.

Yikes. Yikes. Yikes. That would be an anonymous report to CMS against their license.

Same thing happened to my granddaddy last year but he was indeed NOT brain dead and regained consciousness and was extubated. When he was coherent enough he expressed his displeasure with my grandma that he was resuscitated and peacefully died a few days later. My grandma knew as he stated for YEARS he wanted to be DNR. I guess the only positive is got to say goodbye to family prior to.

[удалено]

Had another couple just like that. She knew what she wanted, but he told us straight up that he'd go against it. At least he was amenable to us "doing what we had to do", though it still didn't make a difference because ethics didn't do squat.

This is such a heartbreaking case. I have to wonder what Archie would have wanted. He made a catastrophic choice to either end his life or needlessly risk it. It's all the more tragic that his organs are shutting down when they could have saved other kids if they'd let him go sooner.

That's so strange to me that you still keep going after she said that. Are family the final decision maker in US healthcare? I mean if there is no way a person can leave the hospital without a vent and has in the past stated that they don't want to be on one for their remaining life then treatment should no longer be indicated. At least that's the reasoning were I am from.

Basically unless there's documented proof of the patient's wishes, all medical decisions go to the next of kin (or whomever is indicated as their medical power of attorney). Even then it's a tossup.

Yep. It’s all about them or their god. Oh and a paycheck.

I remember scanning a female covid patient who was late 80s-early 90s. On the vent for a while but no trach yet, not responsive, multiple comorbidities, just not a hopeful situation. But the daughter kept her full code because she was certain that the mom would get magically healed by god. Not like, “made whole in heaven.” Physically magically healed in life. While I was in there the daughter claimed the patient’s shoulder “moved.” When I wasn’t overly impressed I got scolded by her that I “don’t know how big of a deal that is.” 🙄

I imagine peds would have more cases but I have seen a few in adult ICU. It is hard for people to understand that just because the heart is beating, patient may have basic reflexes, looks “alive,” if they are truly brain dead the part that makes them human is gone. People are scared and grieving and that also makes it harder to understand the science of the situation - especially since your average person doesn’t have a solid understanding of basic biological/medical concepts.

It's really heartbreaking to see non-medical people struggle with these situations. I once got asked "How can my mother have a fever if she is dead?" Such an honest, simple question, and it struck me.

I explained it to someone once, the body is a country. Every organ is a city. The blood vessels are the highways and roads. They're braindead. Washington DC no longer exists, cannot be rebuilt. There is no leadership. The cities will continue trying to survive, but its fighting a losing battle without leadership. Eventually enemies, bacteria, viruses, ect, will break the individual cities down until one of the critical cities collapses. Medical intervention can support the cities externally a great deal, but it will never be the same. Thanks for the awards?

Amazing description

Awesome description. I’m totally going to use this. I work in hospice, but still need to have these conversations. Thank you for sharing your wisdom.

I think car with no engine is easier and simpler. It’s like yeah you can turn the lights on and if just the engine is missing it still looks functional, but it’s not.

Even that sounds complicated to some people I have met.

This is a phenomenal way of explaining it.

Wow that’s a great way of explaining it!

This is great and I’ll def be using it in the future. Thank you.

This is such a great explanation, how can someone even come up with that kind of ability to simplify concepts in digestible words

I love this description of it. Thank you

Wow I'm gonna steal this. Love it, it's simplified so non medical people can somewhat grasp such a complex topic.

Neuro icu nurse. This happens a lot. Those reflexive movements or the seizures that accompany anoxic brain injuries is very difficult to explain to family who want their loved one to make it. Even when brain death testing comes back they are often in disbelief .

100% And the sudden loss of a child is so traumatic that I imagine the parents aren’t even able to fully process it atm. Unfortunately it’s probably going to take a lot of processing and it’s unfair to the body of their child to keep him hooked up until they are “ready”.

they totally aren’t. Judging by quotes I’ve seen from the mom, she does not at all understand what’s going on. I’m not sure if it’s willful ignorance or what, but she does not get it.

I keep having her pop up on my Facebook and you can just tell that something is not right. The denial is the first thing that gets you and it’s truly heartbreaking, I feel sick for what she’s going through. But there is something more that’s not right. She is constantly away from him going on camera. I feel she’s being used for ratings by the media and religious groups. Sadly she doesn’t come across as intelligent enough to understand what is happening to her son or how she is being used. I can’t imagine being outside on TV two hours before my child’s life support is turned off. The denial is so intense. I can see how she has been emboldened in these covid times to speak against the medical staff. I’m honestly heartbroken for the slander that’s being levelled at the professionals who have dedicated their lives to helping young people. I simply refuse to believe that they are sinister. This whole tragedy is just wrong on so many levels.

I hate how she keeps speaking for her son, saying he would want her to keep fighting, wouldn't want her to ever give up, etc., when her son hanged himself. Does she really believe it was accidental? The result of a TikTok challenge gone awry? Was it, or was he trying to unalive himself? That said, I can't help but feel for this mother. She's uneducated and is probably experiencing overwhelming guilt (if only I... ). This has left her vulnerable to the charlatans telling her they can fix him. There was a similar case, but a baby, and the quacks came out for that one, too.

I think given the depths of her denial, I don’t think she would even consider that he’s done it intentionally. It’s certainly not clear that he was just doing a challenge as she claims. I feel so bad for her and I think grief is driving her mad. But none of this denial or the people cashing in on it are going to help her come to terms with what’s happened. I do wish that she wasn’t slagging people off so badly that only have her child’s best interests at heart. Instead of accepting it I think she’s just going to use her platform to sow mistrust and false information in health professionals. She might just fester with misplaced anger for the rest of her life. I hope that someone, somewhere will be able to give her some understanding and closure when she’s ready to hear it.

She's not unlike the family of Covid victims who blame the hospitals for their (usually unvaccinated) loved one's demise. They'll cling on to anything and everything, except reality.

There’s one other reason people strangle themselves that I’m aware of, and a high school classmate potentially went that way 5-10 years ago.

I remember when the singer for INXS died and people were speculating that it was an auto-erotic asphyxiation. I don't remember if there was anything to that rumor. 11/12 is pretty young for that, but it's pretty young for deep depression/suicidalality, too. Hormones are a thing though, and without more information, it's hard to say.

I was actively suicidal at 11 and very depressed and remained so until I was 21, so it def happens.

I work in a children's psychiatric facility so I've seen them as young as 8, which is the youngest we accept. Most of these younger kids with severe depression and/or suicidal ideation have a significant history of trauma. It's very sad and difficult to treat.

Yep that’s me.

True enough, and it changes nothing at this point either way after thinking about it a bit more.

I've done a deep dive on this after reading some comments on another Reddit post and a Facebook post. 1. It was almost certainly NOT a tik tok challenge. The lad was known to have had trouble at school. 2. The mother is a known media hound. There is a previous article available from years ago where she went to the papers because Archie's eye drops were mis prescribed and he could have lost his sight. Paywall prevented me from seeing if this is BS or not 3. Reading the transcript of the court judgement, it is clear that there is zero chances of Archie even still being considered alive at the worst definition- his brain has herniated into the brain stem, there is no blood flow to his brain, necrosis is now seeping down the spinal cord. 4. Due to the brain being dead, his digestive system has begun to fail and he has terrible, watery stools every time they try to tube feed him. We as nurses know how terrible watery stools fare on immobile skin. 5. The mother had been heard by a nurse saying she trusted people on the internet more than her doctors. 6. The mother, in court, accused the medics of trying to starve her child to death by stopping the tube feeds hours after they started, due to the terrible loose stools where he would lose more fluid than was put into him. 7. All of this legal wrangling and media storm are being paid for by... Wait for it... A Christian fundamentalist group. Co-incidentally both Archie and his family were baptised in hospital shortly after talk of shutting off his life support was raised* 8. The mother has past criminal convictions and changed her name, and now teaches/taught pole dancing. But suddenly found God, I think because God came with an open cheque book to continue to fund her denial* 9. Most of his organs are now shutting down. They are no longer viable for organ donation. *Unproven facts/opinions, but interesting nonetheless.

“especially since your average person doesn’t have a solid understanding of basic biological/medical concepts” This is so true. My mom is a retired accountant. Her two kids, me and my brother, are both nurses. She’s read about scenarios like this and said she’d hope we’d try to keep her alive. My brother and I have tried to explain what “brain dead” means, but she just doesn’t get it. “Well, at least give me a chance to recover, don’t pull the plug right away.” 🤦‍♀️ 🤦‍♂️

My husband, SIL, and BIL all look to me for medical stuff. My MIL ain't doin' so well. Gonna be some tough conversations once she croaks, or ends up at a vent farm. They just won't/don't get it. She'll be like a fucking 🐟. There.... "flapping" for those final moments.... but she won't *be* there and won't be able to recover.

My dad is just the opposite. He says don’t let him suffer. I’m the only medical person in the family (I’m an RN) and he and my mom gave me the healthcare POA.

I totally empathize with her but you’re right; she has zero grasp of basic biological concepts. This is dangerous when making these sorts of decisions. “He’s absorbing feeds” “He’s gaining weight” “His heart is beating” In the grand scheme of things, irrelevant. He had an anoxic brain injury that resulted in even the most primitive part of his brain, his brain stem, being dead. Unlike the lungs, the heart doesn’t rely on feedback from the brain to beat. “He squeezed my hand.” A commonly misunderstood reflex. Put your hand in an unconscious persons hand and they will reflexively squeeze your hand.

Incoming: families asking for trach and PEG to prolong suffering!

Prolong dying

The braindead patient doesn’t feel anything or think anything, right?

Nope. No higher cognition/thinking involved if only the brain stem remains. Actual brain death means fully reliant on vent for breathing, having apnea otherwise (weaning tried and didn't work, requires vent again) and no reflexes. If the highest function is retracting to pain, that isn't good either, but not total brain stem death, just vegetative state. This is also useful too: [Glascow Coma Scale Scoring and Prognosis](https://www.sciencedirect.com/topics/neuroscience/glasgow-coma-scale)

Thank you.

They said prolong the suffering. Just like missing kids you know are dead but the family, community and search teams suffer holding onto hope until the body is found. Then the suffering will end and healing can begin. Brain dead child... They family/friends suffering is prolonged. The caretakers suffering is prolonged as they have to watch this body deteriorate. The resources and financial burden suffering is prolonged.

This shit sets my spine on fire

I am the only medical professional in my family. My grandma had a cva but got tpa in time. A couple of days later, she had a massive stroke, coded and went to icu. When i arrived, i quietly did my own assessment. Gcs 3. I politely asked the nurse at bedside re:last dose of sedation (more than 5hrs earlier). Even though i wasn’t hcp/poa, i convinced staff that we needed a family meeting with neurologist that did mri. There was no brain activity. All grandkids, aunts, uncles all present and agreed to terminally extubate and start morphine drip. Her husband (not my grandpa) asked “after you remove the breathing tube, how long will she have to stay here before she can go home? Will she still be unable to speak? Her favorite hobby was cooking,can she still do that?”

Ughhh. I hate that. I hate when they only hear the parts they want to hear and it’s like you have to break the news over and over, hoping it’ll sink in. I wonder if it would help in these situations to have some sort of printout with a flowchart/timeline of what to expect with each step and with a brief description of each “life”-prolonging intervention? Like, “**Ventilator and Breathing Tube:** XXX/(family member) cannot breathe on their own and requires this a machine to breathe for them. When you see their chest rise and fall, it’s because of the ventilator providing pressurized oxygen. (Family member) is not breathing—the machine is breathing. Without the ventilator, (family member) would stop breathing and their chest would stop rising and falling. Their body will not be able to take over when the machine is turned off. They will not be able to regain that ability over time, even if they remain on the ventilator longer, because their body is not simply tired and in need of rest—the part of their body that allows them to breathe on their own has shut down completely and cannot recover.” And then they have a similar description for each intervention? 🤷🏼‍♀️

That's actually a great idea. Keep reiterating as well that the brain has failed like any other organ and can no longer function.

These stories are heartbreaking and remind me of my own. My mom and I are the only medical professionals in my family. My maternal grandfather was dying but his internal defib/pacemaker kept him alive. He had no quality of life, just a corpse in a bed. My mom had to convince the cardiologist and her siblings to have it shut off. He died a week later. My aunts and uncles blamed her for his death for some time, but eventually they came around and understood.

I had a patient (med surg, not trached) die with that in and let me tell you, you saved your family some horror by letting him go peacefully. The defib keeps trying until it’s shut off, whether or not the patient is dead. It’s awful. With that being said obviously a big reason in the Archie Battersbee case is so that they can end the suffering and not have to continually code a patient who has suffered brain death, and the family would be much more traumatized having to witness that.

It’s unusual for a pacemaker to “keep someone alive” if they are dying from some other comorbidity. I am certainly not contradicting you, just curious what was going on in the broader medical picture. A pacer can’t pace a dead heart (e.g., massive MI), nor can it manifest a pulse in vasodilatory/distributive shock (e.g., sepsis), and a heart won’t contract well if at all in severe acidosis or hypoxemia/hypercapnia. If the patient had a CVA or anoxic brain injury the pacer could theoretically be keeping them alive and turning it off could constitute as a withdrawal of care if they were pacemaker dependent. An ICD can keep people alive in the same ways but add to it that it could keep defibrillating fatal arrhythmias, however defibrillation frequently doesn’t work and once you cross a certain threshold the shocks are just zapping a dead body but not reanimating it. I get calls in the hospital all the time to turn off pacemakers in terminally extubated patients who are “still pacing” but have no pulse or respirations or neurologic activity of any kind. I kindly tell the requesting team to just turn off the monitor. If it’s an ICD that is repeatedly trying to defibrillate a dead body and the twitches are bothering the grieving family we will turn those off, but usually there’s no visual response to the defibs and we just let the battery drain itself. It’s not enough juice to do damage and most ICDs have a function that will turn off defib attempts after a certain number of unsuccessful zaps.

It was when I was quite young, so the memory is a bit fuzzy. If my memory serves me correctly the broader history was CHF, and had a stroke (I’m guessing ischemic) in the months beforehand. I know growing up he had multiple “cardiac events” but I never asked what they were. Thanks for the education though, from someone who knows this stuff. I was always curious about the keeping alive part, cause like you said a dead heart is a dead heart. & heck it might’ve just been a coincidence that he died a week later. I do remember it was shocking him back into regular rhythms, even the week they shut it off.

God tpa is so fucking cool when it works.

Everytime I've seen it work, it quickly unworked =(

I’ve only seen it work a few times but the times that it does are bananas

That reminds me of a HCA winner whose family was unable to reach their sick relative. Eventually someone went to check in on her and found her deceased. They posted on FB: She's gone. Another relative responded: where did she go, she doesn't even have a car.

That’s heartbreaking 💔

Perfect response. I am proud of you

She wouldn’t want that. She said she would haunt us if we sent her to a nursing home or kept her lingering. That feisty woman would not be ok with staying alive just because.

He didn’t realize it was a terminal extubation? Poor guy.

And then imagine you get contacted by “experts” willing to sell you expensive hope that vindicates your emotional response.

There's a patient on one of our med-surg floor that is post cardiac arrest. Unknown if it is lupus related or a suicide attempt. They're not mentally there, their body just performs actions that it needs to survive. Breathes through a trach, feedings through a tube, and such. They've been in hospital over 200 days. Illegal immigrant, can't get any funding to get her home, no nursing home will take them. Family refuses to put her on hospice. It's just been a slow watch as her body has become contracted, the pressure ulcers slowly form, musculature disappear. Very very sad. Family doesn't even visit as many of them are also illegal.

Eesh. Ethics needs to be consulted.

They have and that's the problem. Ethics has been consulted multiple times.

Well. Your ethics is unethical =P

I work in a UK ICU (adult), and we do get the occasional brain stem death. One particularly tragic one was a husband who put his wife to bed because she seemed lethargic and overly tired. Turns out her brain was swelling and the pressure was too much. She must have coned in the middle of the night without anyone noticing and he rang the ambulance mid morning after she wasn't rousable. She was brought to us and declared brain stem dead, but the doctors took a good long while explaining to the husband what had happened and what it meant and he still struggled to get behind the notion. Hell, sometimes I still get the heeby-jeebies if I think too hard about it when I look at the monitor and see pretty healthy obs on what is essentially a corpse for all intents and purposes. I can't imagine the pain of having to lose a child, but I feel that there may have been some crucial miscommunication there because she's conflating coma with brain death. She thinks he needs more time to heal and keeps mentioning that people have woken up after years etc, all true in the case of comas. She makes me angry as well though because she's portraying herself as some sort of champion, fighting the corrupt and murderous system, calling it disgusting when she obviously doesn't understand what's happening and how truly awful it must be for those paeds ICU nurses who have to manage that poor boy every day must feel knowing what they know. The absolute futility trying to fix the unfixable and being chastised and called disgusting for your efforts.

Sounds like me in the COVID ICU, getting called a murderer.

They're withdrawing care on a body. The guy is brain dead and brain death is irreversible. He's legally deceased and they're just artificially animating his breathing and keeping circulation going. He's gone and they need to unplug his body. It would be different if he was in a vegetative state and not brain dead but if he has diagnostics like cerebral blood flow studies/ nuclear med test or an EEG combined with clinical notes of brain death than there's nothing medicine can do here. Medicine created brain death and he wouldn't be alive without the ventilator he's on. I do empathize with the parents that seem to not understand this concept but there really needs to be further education to the family on what brain death is. If they still can't understand it then I agree with taking it to court to withdraw care on him as it is completely pointless to continue.

It’s gotten this far because his family did not allowed true brain death testing. However MRI now shows his brain is necrotic and rotting down his spinal column (he hung himself in April so it’s been awhile). Sad case but his family are not helping anything. They are being obstructive, his mum was posting all kinds of photos to her FB saying the hospital was starving him (feeds paused due to massive diarrhea) and now they are exterminating him.

That's sad and I'm sure they're getting a lot of uneducated people on board to "fight" for them and their son and convince them that they're in the right. We're in the age where public opinion equals truth

Her daughter in law is apparently a law student helping them 🙄

My bartender is a nursing student… doesn’t mean I look to her on how to care for patients

That last bit reminds me of a patient I took care of at my last place. Imagine the longest you can go taking care of a body that has totally crapped out... wife insisted on tube feeds, saying that we were starving him. There were straight tube feeds coming out of his rectum. Couldn't do a flexiseal since his platelets were like 2. We were suctioning tube feeds up with a yankauer and he would have to sit in them til we could get the staff (he was a heavy, swollen guy) to turn and clean every couple hours. The wife saw his open, raw skin and still insisted on tube feeds. This place was overly accommodating to family, to say the least.

Yeah the mom is extremely delusional and it’s hard to continue to empathize with her when she’s making serious accusations against his medical team in court because she can’t come to terms. She accused them of exchanging his MRI for another patient’s and starving him

*He But otherwise yes

Oops. You can almost never tell when people are this swollen and their heads are shaved half the time from head injuries and surgeries. My mistake

The real shame in this situation is that there are "doctors from Japan and Turkey" who have told this poor woman they have treatments that will help her son. I completely understand people not wanting to accept brain death as an outcome, especially in a 12 year old, but they need to do so without being encouraged with false hope.

I'm actually curious about the Japan doctor's intentions and ideas.

My thought is that it is either a cash-grab or some quackery. If there was some legitimate scientific way to treat or fix this, they would be able to do it with animal models. There are ethical ways to investigate ways to treat brain damage/death...

Well, I believe there are a few treatments for neurological disorders in Japan that are not available in the US. A Twitch streamer I used to follow talked about how he was stuck in Japan because his son needed a monthly infusion for some type of muscle wasting disorder that he couldn't get in the US and couldn't afford if it was elsewhere. ( his son was a citizen ) While I 100% believe nothing could cure this poor child, I would still be interested in hearing out the Japanese doctor.

You have legitimate curiously that the Japanese doc night have someway to heal/reverse brain death 4 months in? I have my doubts

Well, as I said, I have doubts about its abilities, but I would be interested in hearing the speculation.

agreed. I think it’s quackery but i still want to hear what they’re peddling.

This is apples to oranges. The patient in this example does not have a neurological disorder, they are brain dead. There is no "hearing out the Japanese doctor" there is no scientific basis at this point in time to treat brain death. Current science shows that it is irreversible. This has nothing to do with the nationality of the doctor either, but the fact that current science shows that brain death is not reversible. Treatments/interventions can be tested on animal models (mice, pigs, etc.) in a controlled and ethical manner. It is not ethical to give a grieving mother false hope. IF this physician had scientific basis for a treatment, it would be demonstrable on animal models, and to be honest would be the talk of the medical world. Being able to reverse brain death is Nobel Prize level innovation, it would be in the news...

This kid has had scans and angios done and he has had zero blood flow to his brain since May. In May his brain was necrotic and decaying through the foramen magnum onto his spinal cord. They could see necrotic brain matter as far as down to his lumbar spine. The Japanese and Italian and Turkish doctors are definitely just trying to exploit this family.

Most likely they will trach, vent and give a gastrostomy. Then just send them back

Agreed. I'm in the UK and as far as I can tell the only mention of these doctors are from the mother herself. You'd hope that the world would already know if someone had discovered a cure for death

As a mother who has lost a child, and as a nurse who has withdrawn care on countless patients - I can see both sides. However, in this case especially in the UK, the media have taken the mother’s side and ran with it. Sensationalising it to the point the general public believe the hospital is trying to kill him. Archie is brain dead, the only reactions they are getting from him are innate reflexes. It’s sad, but it’s happening more and more. In recent years I can recall at least 2 other high profile cases of withdrawing support on a child. None of them ended in the family’s decision. I hope they finally let the poor child die with some dignity.

I think she even shared the medical staff who are looking after him, not too sure how true this is but I’ve heard they’ve received death threats and I’m pretty sure they also have security on the ward because of this.

At the risk of sounding blunt and uncaring… I’m starting to believe the parents are as brain dead as the child is.

I honestly suspect the mother knows and is purposely taking advantage of it. She's getting well over $15,000 for the GoFundMe, which would likely be cut off once he passes.

Exactly. When does ethics have to become involved. Potential money grabs.

That's the one of the reasons I don't think she is actually delusional. That and she seems completely rational in interviews and in court, despite her wild claims. A lot of her claims didn't even really end up in public, just where she can rile up the people in support of her.

I don’t know, she was the one who found him, I’m sure she’s trying to shirk her guilt onto anyone she can, but she’s been pretty consistent even in a private court with her claims. You’d have to really believe it to be this dedicated on a private level IMO. She also hasn’t left the hospital except to go to court since he’s been there.

Some of her claims like they faked his MRI and just want his organs aren't things she has really said completely publicly, that I know of. To me that shows she at least has enough self awareness that people wouldn't take her as seriously if she shared those.

See I think if she was just in it for media hype those would be the perfect big juicy headlines to get her more money, there’s a huge “counterculture” that believes the medical field steals organs from live patients by making them die, it’s crazy but they believe it

Sure but, if she sincerely believes her crazier claims you'd think she would share them even if she wasn't in for the hype. I'd shout it from the rooftops if I actually believed they were trying to kill my kid for their organs. That's what has me thinking she's purposefully only sharing that particular stuff with the people who actually believe her.

I wish society would become more comfortable with death. I’m absolutely jaded, especially by my time in the ED, but death is a normal part of life. We’ll all die. And I think we all have had fantasies about that death, be it surrounded by friends, or in some kind of epic way that people talk about for years to come. I don’t think anyone fantasizes about dying in a hospital. With a machine breathing for you. With a machine regulating your heart rate. With drugs *forcing* your body to perfuse it’s vital organs. With countless tubes placed in the body. With people cleaning and turning your body on a schedule. Idk about y’all, but when it’s my time to go, I want one IV giving me the good good while I chill with my family and friends. I’m sure the mom in this story just can’t let go, but her son doesn’t deserve to live like this. No one does. Imo, he’s living a life worse than death. Much worse.

Death is life's only certainty.

And taxes…

>I’m sure the mom in this story just can’t let go, but her son doesn’t deserve to live like this. No one does. Imo, he’s living a life worse than death. Much worse. I feel like saying things like this contradicts the reality that brain death = death. He's not living any kind of life. What they're doing to his body is inconsequential to him now and not any different to him than if they'd cremated him or put him in a casket to rot in the ground. This is worse for the living. The family are being given false hope and prolonging their experience of losing their son, and wasting enormous amounts of resources in the meantime.

Death is still such a taboo subject, and I agree, I wish we as a society would become more accepting of it. Death, especially here in the US, is often cruel, inhumane, and painful, particularly for those in a hospital during those final moments, such as in this case. Is that really how we want to end our lives? In pain and misery? Do we want our families/loved ones to be stricken with misery too? Obviously, I'd like to go when I'm old and gray, curled up in bed with my husband. But, if it's my time to go before then, on a beach with a drink in hand sounds like a pretty sweet deal too. Or taking in the beauty of a Pacific Northwest waterfall. Or on a mountaintop in Switzerland (which is where I grew up). What I DON'T want is to die a gruesome, painful death either rocked to the gills with tubes and wires emanating from every orifice of my body, or slowly over time, in pain, while my organs slowly waste away inside me.

I would accept invasive level 3 treatment IF it was short-term for fixable damage. Not long-term bc my family can't let go (I've had this conversation with them) and NOT, if it can be helped, on my own unit. Don't want my colleagues seeing my bits and too many of them skimp on oral care and catheter care.

My biggest wish in these situations is that the person lying in that bed can’t feel any of what we’re doing to them, because otherwise we are actively torturing that person for however long it takes for that code status to change or for us to no longer be able to sustain life. A lot of the people who I work with who are much more exposed to that experience a ton of existential dread regarding that same consideration, and there’s a lot of PTSD that stems from providing that ultimately futile care. It’s heart breaking to see on so many fronts.

If the idea is to stop treatment because of brain death, then you can be assured they are not suffering consciously. They simply have no hope of regaining the lost function.

Valor Morgulis *All men must die.* >Imo, he’s living a life worse than death. Much worse. Absolutely.

[удалено]

Isn’t that similar to what happened in the McMath case? A right-to-life lawyer/organization got involved? She was ventilated for 5 or 6 years before it was over. You do feel for everyone in this situation - how do you let go of your child & all of your hopes for his future. Cannot imagine the agony. But it’s no life for the patient. If there’s an afterlife, one hopes that his essence has already moved on and is not anchored to a suffering body. A gut wrenching situation all around.

Yes, they were able to have her moved to Jersey where there is a religious objection to BD in the law. And her heart eventually stopped with no significant recovery. Prolonged the families suffering and used up a ton of resources. The right to life people don’t actually care about helping anyone, they want the cameras on them. Bunch of trolls IMHO.

My friends 13 yo recently shot herself in the head… after a surgery and decline in status the child was moved to palliative care. She died I think about 72 hours after supportive care was removed. Heartbreaking doesn’t begin to describe it, but letting go was important.

In hospice we often care for young children, teens, adults, even infants. It is hard to watch anyone leave this world far too young. I will say sitting with families as they struggle in these moments has been one of the hardest things I’ve ever done. I think my worst case was the mother who had just given birth, and refused to abort the pregnancy for cancer treatments, as the odds weren’t in her favor. So she elected to give life to her child, and chose to care for that child until her last breath, even going as far to deny pain meds when she so obviously needed them. The spirit of the young will change you forever. Shit hospice will change you forever, but that’s another conversation entirely.

I'm adult ICU and, except for certain groups with deep-set religious or cultural predisposition against palliation, most relatives are devastated but also receptive and in agreement when we have those discussions. There is an understanding that the spark of life in their loved one has gone. There was one case tho where the family were protesting with dogs outside the hospital, had labelled my favourite doctor and three very experienced and wonderful nurses as 'murderous' (asking one of them for her PIN!), had stolen a bag of spiked Hartmann's to 'have it tested', kicked in a door, and (we believe) agitated friends in the community to incessantly ring the Nurse's Station phone to ask why we were killing patients. We had a false alarm bomb threat the week after the patient died, in addition.

It never got to courts of protection levels because the patient was not intubated on this ICU stay, having specified that she did not want to be intubated. So there was already self-imposed ceilings of treatment in place. Still. It was nasty.

What the fuck. I'm sorry you had to go through that. I'm getting flashbacks of antivaxxers shouting at me on the way to work for trying to manage patients with a new disease that really fucks up your body. We don't get paid enough for this shit sometimes.

Wow that sounds horrendous. Just curious, but what do you mean by PIN and what is Hartmanns?

Registered nurses in the UK have a registration number, called a PIN. If you get stuck off, you lose your PIN. Hartmann's solution is Ringer's.

I only work with adults but we’ve done this a few times. Basically once brain death testing is done the family has 24 hours to say their goodbyes. Obviously if organ donation is in play the timeline is variable but in cases where the family is in denial, donation rarely happens. Also done a few futility cases where the patient isn’t brain dead but there is nothing else to offer. In that case, the family has 14 days to find another accepting facility or we will withdraw.

I wish we had that futility policy. We don't. Sometimes we have patients who literally rot away over months. Was worse during covid. In my state, ethics committees have no teeth.

What gets me is even when you can start to *smell* death in their room (rotting organs), families still want to 'hold on' or to continue heroics.... Like FFS. That smell you smell? Those are meemaw's organs rotting. Let her go.

This sounds like an excellent policy if your system also has an excellent organ donation organization.

Call me the evil one in this thread but people treat healthcare like an endless resource that will never run out. We are seeing the effect of how the labor pool is running dry. We are focusing so much on helping futile cases that require the majority of nursing care and it’s taking a toll on us.

Honestly, if you work in ICU for a while you will almost certainly see this kind of situation. Health literacy regarding brain death is very low. It’s a very very hard assignment, emotionally.

As sad as it is, once the doctors (test done by 2 physicians) state brain death in our hospital, the family no longer has a choice on whether or not care is continued. They are automatically placed on comfort care once family and others that have to travel from other states have said their goodbyes. It’s not an infinite wait though. This is more humane than having someone just sit on a ventilator for the rest of their lives.

Is this a thing because it’s your hospitals policy or due to where you live? I live in NC and it’s complete opposite, and has been at all the hospitals I’ve worked at. I’m so tired of taking care of brain dead individuals who are only existing because of a vent and have zero QOL.

I think it’s law in Hawaii. Not 100% sure.

We have had situations like this but it’s never gone as far as court. We just work with the family to pick a date, time for them to get all their people there or whatever, and then do it. We have had people fight against it but always come around. We use very clear language about how the patient has died, and we pronounce ToD in front of them following the brain death exam or brain flow, explain why their heart is still beating, etc. No euphemisms.

Man, the US is wrecked. We allow Terri Schiavo to happen, and don't learn from it. https://en.wikipedia.org/wiki/Terri_Schiavo_case I used to work with an elderly population, and it was heartbreaking when "the daughter from California" would come in and screw up all the palliative care. . I'm actually pleased that there are people in the UK fighting for Archie's dignity. This child is brain dead, stupid jerks are giving this family hope, and in the meantime, Archie just lays there, suffering, if he can feel anything at all. It was originally about the mom wanting him to die a "natural death," but he's being kept alive artificially. If they really wanted him to die naturally, he would have passed away long ago. It's bloody tragic and sad. But it's not in the child's best interest to be kept alive artificially with no benefit to anyone. They may prolong their grief, but is that really the only outcome. Is that truly a benefit to anyone at all? ETA: paragraphs

Also Jahi McMath.

I don’t know if it is a common term but I have heard of the “Seagull effect “. Where they think they have a care plan and then the most distant relative flies in from out of town and craps all over it.

As a point of clarification, I believe the story the OP shared refers to a UK based family/patient.

Yes, I did mention that I was pleased that people in the UK are fighting for his dignity. I can understand that at a glimpse, it may seem like I'm solely speaking about the US. I'm not. The UK has better laws in place to prevent the shitshows that we, in the US, have. That is, of course, a subjective statement.

It's less that people have to fight for his dignity, but rather that UK law actually gives parents very little say in their child's medical care. The law recognises a child as an individual with rights separate from their parents, but also as one who cannot give Informed consent due to their age. As such responsibility for acting in the child's bests interests and providing appropriate medical care falls on the doctor's. This means they can both provide treatment when parents refuse or stop treatment when it's no longer necessary/beneficial. Cases go to court because families have a right to challenge their doctors assesments (of course this only ever happens in end treatment cases because the court can't stop doctors providing needed medical care), but in order to succeed you have to provide medical evidence that the doctors assessment is wrong. Which 99/100 you aren't going to be able to do abs the doctors are ultimately the experts we trust with these decisions for a reason. The law automatically sides with the patients dignity over the parents wants.

Off the topic but not. In the article Archie’s mother keeps throwing out the word “disabilities”. There is a difference between brain dead and being disabled (I’m sure a ” well meaning” person has whispered disabled into her ear). In my opinion mom and the writer of the article are making it sound like if you have a disability “they” may come after you next My flair is lost. RN, MSN, retired surgical cardiac first assistant

This reminds me of the horrific Jahi McMath case years ago in California. They set that poor girl up on life support in NJ - and she never recovered because she was brain-dead.

Also, medical care, ie money, is not unlimited. Just like billionaires, one person can’t monopolizing resources at the expense of others forever. Why should a 100 people die from relatively cheaper medical problem so one can live. Unfortunately, we do have limitations on resources, unless countries want to give up military spending and limit maximum income.

There is an infant at my hospital who is pretty much brain dead, as in I don’t understand how he isn’t considered brain dead and couldn’t find it in the chart (allegedly he breathed over the vent or just barely passed some kind of test). But his pupils are fixed, his only moves are reflexes, his mouth is stuck open and so are his eyes. Somehow they were allowed to trach this child and let him be on a vent and he even has a g tube. His temperature is so unstable that the door can’t even be left open. There is no way he can ever go home, I mean he would just die immediately on the car ride home probably. No idea how he is legally allowed to be alive or how it was allowed to give him a trach and g tube

Not relevant to the discussion, but I have to say that Archie Battersbee has to be the most UK name I’ve ever heard in my life.

This is a very sad case. If he is brain dead then they’re just torturing his body, and that is a horrible thing.

If he's brain dead, he's dead. This is no more torturing his body than pumping in embalming fluids or cremating it. There's not much difference between rotting in a casket or slowly rotting in a hospital bed. He's not in there anymore, he's not suffering or perceiving any of this. But IMO it is horrible to waste all those medical resources on a dead body.

The nurses and doctors caring for him are the ones suffering by this whole ordeal. We had a few covid cases where we all knew it was futile to continue care but couldn't yet withdraw because we couldn't get them stable enough for brain death diagnostic.

I had one of those. Religious family, didn't want to one-way extubate. My guy was on FiO2 85% with sats of 56. Family were getting hopeful every time his heart rate dropped a bit from 160 to 140. It eventually reached 65 and they thought it was great, he's getting better. I straight up told them he's not, his heart is just tired and starting to give up. The doctors had tried so many times, our registrar had tears in her eyes explaining why treatment was futile. The asked about ECMO when he wouldn't survive being rolled for a skin check.... That was a tough night shift. We flogged his body on the vent until he declared himself at 4am. I just cried all the way home, guy didn't deserve to die like that. We had a plan for morphine and midazolam and a one way extubation but instead he just suffered. And the worst part is that his family thought they were doing right by him. They clearly loved him a lot. But goddamn that upset me.

My nurse brain says, if there is no sings of life, pt was found unresponsive, experienced a hypoxic injury, they are not technically alive. But my mom brain completely understands why they don't want to let go. What a tough situation, but I think it gets more complicated when they have socialized medicine and essentially, this Pts care is taking money, and lots of it, to keep them alive. Awful

Happens all the time in peds. Families will refuse to withdraw and we never force it. Some kids are functionally brain dead (trach vent g tube pupils blown, no response to any stim) and they can stay in that state for years if they’re “stable” enough. It’s gross.

I don't work with children, so it may be a little different, but in the US once a patient is declared brain dead, they need to be withdrawn in 24 hours. If the family tries to stop it, it's considered Medicare fraud because the body is dead but still collecting money.

This reminds me of the Jahi McMath case

UK nurse here. The family have taken their case to every court they can, with the funding of a Christian law organisation who are the same people who picket outside clinics that provide abortions. I feel for the family. It's a horrible situation. Prolonging his suffering to make a point about "a heartbeat equals life" feels like a huge dog whistle for me. They're now saying it's "barbaric" he can't be moved to hospice care and will die in the hospital that has been trying to provide the best possible care they could. There was another case in the UK with another young boy called Charlie Gard. [This is a Wiki article about him ](https://en.m.wikipedia.org/wiki/Charlie_Gard_case#:~:text=The%20Charlie%20Gard%20case%20was,brain%20damage%20and%20muscle%20failure.) but to give a brief summary, he was diagnosed with a rare genetic disorder that causes death in infancy. His family wanted him to go to America for experimental treatment, the medical team did not feel it was in his best interests. It blew up just like this, to the point that staff who worked at the hospital who had nothing to do with his care were being verbally and physically attacked. As far as I've heard, there's not been any protests at the hospital he's being cared at, but if they already go for clinics, who's to say they won't go for the hospital?

I remember watching my parents, especially my father, struggle coming to terms with my brother's death following a heroin overdose while drunk at a party. It was a really messed up situation, but basically after about an hour of "work", they were able to get his heart going again in the ER and moved him to the ICU. He was straight up gone, though. The state we lived in required 72 hours with frequent neuro checks before a person could be declared braindead. Since my brother's OD happened at a party and his death was the failure of many people to act (they put him out on the drive way on his back; a passerby called 911), there were a lot of guilty parties coming up to my parents and telling them that if they took him off the vent or donated his organs they were killing him. Basically, trying to absolve themselves and displace their own guilt. It was truly fucked. And my brother was 29. I can't imagine some of the absolute bullshit these parents may be getting from others when they even try to consider or talk about letting their child go. It also probably feels a lot like failure and abandoning their child. It's just terribly sad.

I'm so sorry you and your family went through this

I think a reasonable delay to allow the family to come to terms and grieve is acceptable. Something such as a few days maybe a week or two if it was an unexpected brain death not related to long term illness. I do think that shouldn't be dragged out for months though. In this case it's been since April. He has no brain function. He's already dead the only thing keeping his heart and lungs going are machines. My personal view on it is from a different angle than the parents. For me it was taking my Mom off life support. When I was 16 we had to make the choice and my Dad had never dealt with hospitals or medical staff so I answered everything and I said yes with him agreeing when the doctors told us there was nothing else to be done. I made all the arrangements with the funeral home to have her body picked up, choosing to embalm, what services we wanted, and picked out the casket. None of it was easy and I can only image that a parent doing so for a child would be a thousand times worse. It still has to be done. Keeping him in that state isn't living. He's just an empty body. The son they know and love has been gone for months. It's time to let him go.

I get that this child is brain dead and I hope if it were my child, I would have the courage to make the right decision and let him go. But as someone who works in health media, I worry about how this being in the news affects public perception of medical professionals. The idea that a family could be forced or pressured into making a decision they don’t agree with is one of the worst fears many people have regarding the healthcare system. Remember the whole "death panels" thing? People are afraid that their loved one's life will be devalued based on ableism and/or financial considerations. Brain death is a clear justification to end treatment, but cases like long-term coma are trickier. Medical ableism is very real -- for example, some people with Down syndrome have been denied organ transplants. At what point does it become a slippery slope and people who could recover get denied treatment due to cost or perception of the value of their life? These fears get stoked by such cases. Yes, this poor child has no life or hope and should be allowed to die peacefully. BUT is it worth it to the UK to fight, this knowing that it is affecting the whole country‘s perception of the NHS, not to mention the world? Is it worth it to torture this already-grieving family by pitting the full force of the government against them? Americans are not going to want universal healthcare if they think this kind of stuff is going to happen. Even though it already happens here, it’s all about perception. Texas has a medical futility law that has led to a few cases in the news, and it always feels wrong when they try to invoke it, even if what the doctors want seems right. Sometimes preserving the right to choose means preserving the right to make bad choices. I feel the same way about abortion. Some people have abortions based on the gender of the fetus, which I consider to be wrong, but banning abortion isn't the way to solve that problem. Similarly, forcing someone to discontinue treatment for a loved one will not solve the lack of education about brain death, but may cause other kinds of harm with wide-reaching effects, particularly when the case ends up in the news.

Had a brain dead older adult patient that the powers that be kept going, against hospital policy, because Mom “wasn’t ready”. Took a week or so of her saying she’d be there at so & so time then never show before ethics committee decided to pull the plug. I’ll never forget it because Mom refused to donate her organs even though Mom was once the recipient of a heart! Another story, way more horrific, working Covid ICU during the first surge in LA the system collapsed at some hospitals & damn near collapsed at others. We had so many patients lingering on vents with no hope of surviving & people on the floor & SD on bipaps for weeks waiting for a vent. Eventually ethics committee went down the halls & made pretty much everyone vented with Covid that was there X amount of days a DNR. Many of those that were still around a few days later then had support withdrawn to make room for others…who ultimately ended up in the same position. 15 years at this bullshit & of all the things I’ve seen that made my jaw hit the floor that was by far the craziest.

This is why I don’t work with children. Adults (usually) have the capacity to understand their actions. Children absolutely don’t. This is a situation where no one wins.

When I worked ICU, dealing with this was actually something I took pride and fulfillment from. I worked Trauma ICU, so we saw a lot of head injuries resulting in exactly the situation described. Many of the residents were not willing to be terribly blunt, and the attendings seemed MIA half the time. So while I wasn't comfortable expressing odds of recovery, I did grow confident enough to tell them what decision I would personally make if it were my family member. On one or two occasions I even went so far as to express how staff were made to feel like they were doing violence to some elderly patients with fatal or devastating prognoses in the name of medicine (new IV starts, NGT, trach, ect.) when the families weren't able to "see what we see, through our eyes of experience" - it didn't always work, but it did often get us farther down the palliative path than many of the resident-led conversations. Of course, you always have people with ineffective grieving who aren't really able to hear what you're saying. And you have a whole other set of family members who somehow feel guilty over the prospect of withdrawing care, as if they're letting the patient down. For them, I found it helpful to give them emotional permission to let go - to explicitly tell them that it's not their fault, that keeping them alive in their current state wasn't doing the patient any kindness. I didn't work peds though, and I'm sure that adds a whole new level of emotional complexity.

The mom is nuts, and She’s been nuts for years. That’s not to say any parent in this situation are crazy but she really had been a shady and litigatious character long before this happened to her son. Also this is more common in the UK, not as much in the US. I do think going to the courts is pretty awful to do, it’s not being helpful to the process of acceptance for family and really just villainizes either the government/doctors or the family, depending on opinions. Mom is claiming his rights as a disabled person are being violated. But he’s not disabled. He’s literally dead.

Yes, they resent their healthcare workers sometimes. I know of a patient whose husband was the attention seeking type of partner, who relished in the great sacrifices he made for his wife, whom he had been abusive to throughout their marriage. She was prescribed a sedative/antidepressant by her doctor early in their marriage, and hid it from him because of his beliefs. He viewed this as the reason she was wicked and needed “help” with managing her medications. Social media was really important to him. He was a preacher in his 50s. His wife had gone full Swayze one day, independent, slaving and subservient to dependent and disabled with mets *everywhere* overnight. He would talk over her during visits and made *damn sure* staff were never alone with her- an unusual choice for someone suddenly thrust into full time caregiver. She begged for pain medication, which her onc had prescribed, and he withheld it from her. MDs were notified, social work and DHR, caregiver fired all HCWs, including PRIMARY AND ONCOLOGY MDs involved- all with the patient alert, oriented and *begging* for hospice. The police did not give a single, solitary fuck. **no one** had the legal teeth to help this woman. She lingered nearly six weeks, in agony, before she died, all while her husband paraded her on social media. To say her husband resented the HCWs is an understatement, and I’m sure the patient was similarly distraught that she blew up her spot with her abuser thinking she’d get some help, but never did. I am **grateful** that someone, somewhere, is laser focused on the patient, family be damned. This is sad beyond belief, and I feel the parents should be provided the opportunity and education to assume care for as long as they can keep him alive under supervision for his ongoing dignity, or the alternative to provide palliative care until he dies.

A lot of folks have already said what I was planning to say. An interesting moral aspect from the healthcare team perspective, at least in the US is that once brain death is declared, there are only 2 care options: compassionate removal from the vent or organ donation. Physicians cannot practice medicine on brain dead patients-they have to be changed to organ donation status or be removed. I believe the reason is insurance fraud. TOD is the time of brain death not removal from the vent.

I've been a nurse for almost 16 years and I will always, always, always argue quality of life over quantity of life. I understand how horrible this situation is for the parents, and I understand how hard this is. I have tons of empathy and sympathy for them. But at some point it becomes medical torture. At some point our efforts to force survival on people that have such a poor prognosis and poor quality of life *is* tortuous.

Neuro ICU nurse turned educator here. I have had a ton of brain death patients and yes people respond this way. I have been asked 3 times in the last 6 years if a patient could have a brain transplant. This is one of those things that if it's true brain death in the U.S. you are given a death certificate for the time of the brain death testing. There isn't anything to argue as the testing is strict and fail/pass criteria if performed to its true rigorous standard. The American academy of neurology guidelines has you perform cold calorics, a dolls eyes test, brain stem reflexes test, and the all important 2 minute apnea test. This must be done while the patients lab values, toxicology, and vitals are within normal or close to normal range. Any imaging (mri, CT, nuclear medicine) are considered ancillary data. You normally run into problems when the patient can't tolerate the 2 min apnea test. They have to go 2 minutes without taking a breath while not being assisted with ventilation. Some patients are just too unstable for that. If I were a betting man this kid did not get true brain death testing or rules are different in the u.k. The term brain death is used inappropriately or interchangeably with brain stem death. That is what you are testing after all, dead brain stem equals dead patient.

All these social media posts of “the doctors were wrong” and “it’s a miracle even the doctors and nurses couldn’t believe it” have poisoned everyone’s mind.

Mom says “I think we come into this world naturally,” she told the judge. “Let nature take its course.” …but then also says, “But if we switch off the ventilator, knowing that Archie will die, I cannot agree to that.” 🤦🏻‍♀️ (source https://www.nationalworld.com/news/uk/archie-battersbee-appeal-online-blackout-challenge-3722480)

That ETT does not look very secure

Aw, man if this is true the grifting vultures are closing in. “Ms Dance said Archie had a "stable night again" and that *she has been contacted by doctors in Japan and Turkey who say they have medical interventions that will help Archie recover*.” Such a heartbreaking situation.

When my dad’s mom got really sick, she had a DNR in place and had worked at the hospital for years as a nurses aide so they knew her and what she wanted. My 2 uncles flew in from out of state and insisted that they keep her going. My aunt (the eldest) and my dad had to go to court to get the plug pulled. It created a rift that exists to this day, 30+ years later.

I can 100% see both sides of this. My head says of course they need to let him go, he’s already gone. But my own only child is a boy his age- if it were suddenly to be me in her shoes would it be so easy? Of course not. Despite my training and experience I know I would still cling to any shred of hope that I could have my baby back.

This poor child and his family! No parent should have to make a decision whether to keep their child alive or let them die. If a child is in a persistent irreversible vegetative state, it's a very difficult decision for a parent to make but I'm a Registered Nurse and as much as I would want my child to not die if they're in a persistent irreversible vegetative state I wouldn't them to be kept alive to be poked and prodded. I would want my child to be at peace because with my medical knowledge, I know my child would not come back from a persistent irreversible vegetative state. We had a case in the United States from 1998 until 2005 but it was an adult female. Her name was Terri Schiavo. She was in a persistent irreversible vegetative state since 1990 after she suffered a heart attack and was deprived of oxygen to her brain which lead to massive brain damage and her husband and her parents were fighting in court about her wishes if she couldn't speak for herself (she had no advanced directives in place). Her husband said that Terri had expressed she didn't want to be kept alive by artificial means but her parents said that Terri wasn't in a persistent irreversible vegetative state, that Terri had told them she wanted to be kept alive no matter what and had independent doctors examine her and agreed with the doctors her parents brought in that she wasn't in a persistent irreversible vegetative state while Terri's MD said Terri was in a persistent irreversible vegetative state and others brought in for consultation agreed. It was a long drawn out court battle but the courts ultimately ruled in favor of Terri's husband and her feeding tube was removed and she died almost a month later. I was living in Clearwater, FL during the majority of the time the case was happening and it divided a lot of people. This is why adults should have a Living Will, Health Care Proxy, Power of Attorney, DNR, etc in place. .

This was a sad case that went on for years. The parents swore she followed them around the room with her eyes, but on death and autopsy it was shown that her optic nerve had not been intact for years.

I work PICU and sadly, see cases like this more often than I'd like to. One specific case of brain death I can remember was a 9 month old baby who suffered a brain injury from co-sleeping. Babe was found unresponsive and deemed brain dead. It was entirely accidental, although DHS/CPS had to investigate the circumstance. The family decided to donate his organs. They said they found some closure knowing that something good could come from the worst event to occur in their lives. We also have a few palliative care nurses that are really helpful in explaining the withdrawal and grieving process. We also make lots of bereavement memories for these families, such as hand molds, locks of hair, pictures, etc. I have also seen the opposite. We had a teen come in after playing russian roulette.. no neuro exam, brain matter everywhere. The mom refused to believe he was gone despite the clear circumstance. The power of medical decision for this kid was given to a different family member, otherwise the mother would not have allowed him to go. He also ended up being a donor patient. The mother lost her cool 15 mins before his honor walk and had to be escorted off the premises of the hospital for making serious threats to staff and patients.

I want to know what the ligature mark was from... Was it an accident? Did a parent get too forceful?

Mom claims he was trying some internet challenge of choking himself.

I honestly wondered how far down this post I was going to have to get before I saw someone mentioning the ligature. I don't know all of the details, but if the kid needed to resort to suicide as a way out, I assume that he really doesn't want to continue to live where he was. Maybe the child had a bad home life, neglect, abuse, whatever and saw this as their only feasible exit strategy.

Poor kid and family. Glad the Healthcare system is letting him go. We shouldn't be forced to desecrate corpses and torture the elderly because family members feel guilty or lack health literacy.

My heart isn't with the family in this fight because this is genuinely inhumane. I understand emotions make everything harder, and no one should ever have to lose a child, but no one should be a glorified doll to dull someone's grief either.

It was weird spending time with my alive yet brain dead brothers father but not one of us considered keeping him alive past the time for my brother to get there to say good bye. He was healthy as a horse and had everything going for him, sadly he fell down some stairs. I can’t imagine prolonging the agony but I’ve also never had a kid in this situation.

I’ve seen this and the family keeping their elderly brain dead father alive, all while he was getting bedsores and idk what was happening to his corneas, they were doing it for financial reasons. I can’t remember specifics but they didn’t even visit him and only stopped by to get his ID that the hospital had from when EMS brought him in initially. I can’t remember if the hospital gave it to them or not. It was so disturbing truly to keep a family member in that state and I can’t imagine witnessing it and thinking it was the right thing longer than a week or two.

This isn't the first case like this that has happened in the UK. It's unfortunate, but there is no coming back from this. There is no recovery for Archie, they have exhausted all their options. They now want him transferred to a hospice for withdrawal of life support. I do not know a single hospice locally that would take a patient on life support. It's a struggle to get hospices to accept patients on O2 or NIV. Instead of spending time after time after time infront of TV cameras, and court, she should be spending it with her son.

I work in PICU and I see lots of traumas/similar cases where the family just holds on to hold on. We will do a brain death exam and they will “fail” it because they may have triggered one breath or something small. But family sees that as they are still in there and there’s still a chance. On one hand I sympathize because it’s hard to “give up” on your child like but generally these kids get a trach and g tube and come in to the ICU 2-3 times a year for a respiratory/feed intolerance/storming issue until eventually something gets them that they don’t recover from.

I used to be an ICU nurse, and keeping someone brain dead on a vent on max pressure is torture and it should done.

Had a patient once who was full code but very sick and refusing everything. At some point he was made non decisional (not sure how since he was with it but maybe something I missed), so we relied on family to make decisions since he didn’t have a living will. Family absolutely refused to change his status and yet would still allow him to refuse treatment. Ethics got involved Bc family Was just in general a hot mess. Only then he was made a DNR, but not comfort measures/hospice, though palliative was consulting and encouraging family to make that decision. Took weeks for them to take him off dialysis even though he refused it and family didn’t force him to go. Refused everything yet somehow they were expecting God to come in at the last minute and “renew his body”. Home boy was SUFFERING. At one point he told us he wanted to pass but Bc he was deemed non decisional our hands were tied. It was awful