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Kept alive with tubes for nearly 17 years
- deleted 7y ago[deleted]
- ggm 7y agoAs a 58 year old, I think semi-constantly about my need for an advanced health directive. I also now suspect (reading this) that whilst no 15 or 16 year old is actually capable of processing the issues (amygdala) even young people need an AHD. I'm all in favour of the tubes. My partner is not. If you don't know, then your fate in the system is left to others. The AHD won't give you your wishes but it at least tries to address them.
- asdfasgasdgasdg 7y agoHard for me to imagine wanting this life. Imprisoned in a state worse than solitary confinement for more than a decade. Life is very good, most of the time, but there are states where less is more.
- chillfox 7y agoThat really depends upon how bright you think the future is. If you think the future will bring amazing medical breakthroughs and immortality, then tubes is only temporary and all you gotta do is hang on long enough.
- sysbin 7y agoWell the same can be thought about death.
- kiba 7y agoThe problem seems to me is hanging on long enough to reach the future.
- Benjamin_Dobell 7y agoEven if immortality were to become reality, what incentive could there be to cure the ill? Perhaps I'm just unimaginative, however I can't really fathom a world in which it would make economical sense to cure the ill rather than simply prevent people getting sick. Economically those with illnesses and/or genetic conditions (myself included) unfortunately seem like a bit of a lost cause.
- waterhouse 7y agoSurely restoring a skilled 58-year-old with decades of experience to full health is much faster and cheaper than making an entirely new human and training them to the same level. As for preventing people getting sick—well, from what I've heard, a significant reason older people are more likely to get cancer is that their immune system and their body's ability to repair itself are weaker (and one part of cancer is DNA damage), so it seems like the most likely approaches to preventing cancer are also going to help with curing other illnesses.
- leppr 7y agoI think more than an external incentive, it would provide an incentive for workers to be able to afford their own immortality, prior to debilitating diseases.
- lucian1900 7y agoHow about we just provide everyone with healthcare, regardless of their economic value? There is more to life than money. There is more to humanity than capitalism.
- Benjamin_Dobell 7y agoAt what point should hugely disproportionate healthcare be provided to select individuals at the expense of everyone else'e healthcare? I have Sarcoidosis, a genetic condition that means my immune system literally attacks my own body. It's extremely rare. Should I demand that a hugely disproportionate amount of money be spent to cure me so that I can enjoy this theoretical immortality? Seems a bit selfish. That money could presumably be spent to benefit many more lives beyond my own. This isn't pro-capatilism reasoning, it's just being realistic and reasonable. EDIT: To clarify I'm not advocating that we don't invest money in treating Sarcoidosis (or other rare conditions); right now it's much more realistic and more likely to cause immediate benefit than immortality moonshots! However, down the track perhaps the best investment would instead be prevention in newborns. In which case I'll miss out. A shame for me, but if that happens to be the approach that's going to have the best net positive outcome for society, then go for it.
- pantalaimon 7y agoBut what if your brain is so damaged, there isn't much left of 'you'? And until then your whole existence would be confined to perpetual pain. This is the stuff of nightmares.
- coldtea 7y ago>If you think the future will bring amazing medical breakthroughs and immortality, then tubes is only temporary and all you gotta do is hang on long enough. I'd say don't bet on it. The changes to life expectancy and quality of life from early low hanging fruits (most of which weren't even that advanced, like clean water, washing hands for surgeries, basic antibiotics, etc.) dwarf later developments such as heart surgery, bionic limbs, and advanced drugs (aside a few important breakthroughs for people affected with specific conditions). A more realistic outlook is whether you think you might eventually get out of the coma -- which does happen.
- pavel_lishin 7y agoRegardless of what can be done to cure our brain, can you mind adapt after twenty years of solitary confinement?
- b_tterc_p 7y agoThe comparison to solitary is an interesting one I hadn’t considered.
- mnw21cam 7y agoI think you mean "advance health directive", not "advanced..."
- hestipod 7y agoThis has to be a "worst nightmare" for most people. I came across a guy a very long time ago who had been in a long term care unit after an auto accident for something like 15 years at that point. The story I was told, and I don't know it's veracity, is that he was resuscitated against his stated wishes and the hospital was paying for his care forever. His eyes would open but he didn't respond in any way to any stimulus that I saw. He had a feeding tube if I recall, and breathed on his own without ventilator support. He was a swollen belly with stringy arms and legs as atrophy did it's thing. The nurses moved him around to prevent ulcerations and tended to his "survival". It was terribly disconcerting and I hope to god he wasn't aware because that sounds like hell. As @ggm mentioned the documents...everyone should get an advanced directive. Anyone can do it and you don't have to have a reason, unlike a DNR which has more restrictions and requires a doctor's approval. A living will/advanced directive is a 5min bit of paperwork you can get done free at hospitals and doctors offices in most places. Submt it for your medical record and keep a copy in your emergency papers. Unsure how much it would have helped the guy above as I don't know the full story, but it's easy to do and important to have. I've seen loads of cases where people were strung along barely or not even "alive" by any metric other than "technically". for months and years and families fought over care etc. Don't put it off as tomorrow might be the day you need it.
- erikpukinskis 7y agoI suspect after enough months of no stimulus you just go unconscious. Your brain learns to be conscious why wouldn’t your brain learn not to be. It’s normal mode is to stop caring about noise.
- jimmaswell 7y agoLearn morse code so you can communicate with any action you can do, like in Johnny Got His Gun (the basis for One by Metallica)
- baddox 7y agoThat only works if anyone is “listening.”
- maroonshifter 7y agoJuliana should speak Mixtec to him. She might speak Spanish more in the last 15 years, but Ignacio is more 17 year old kid than anything else.
- incomplete 7y agowow. this an incredibly moving story... so bittersweet.
- DoreenMichele 7y agoHe could hear, but he couldn’t understand language. English wasn't his first language. Or even second. That has to be complicating things.
- est31 7y agoRead a bit above the quote: > With the help of a video interpreter, Schnakers gave Ignacio a series of commands.
- DoreenMichele 7y agoAt home, the family spoke Mixtec, an indigenous language; at school, Ignacio learned to speak Spanish. He was the only one in his family who went to school past the primary grades. And he's spent about half his life in the US with extremely limited ability to interact at all and probably mostly hearing English. What language do you think he's supposed to be capable of responding to? One of the two he grew up with, but hasn't actually used in half a lifetime? There are documented cases of people with head injuries losing the use of one language they knew but not another. I have a serious medical condition and I grew up in a bilingual home. I've had incidents where I was exhausted and stressed out and could not speak English for an hour or more, only German, though I'm not especially fluent in it. I don't care what language you use with Ignacio. He's probably not mentally fluent in any of them anymore, having nothing to do per se with how impaired his brain is and everything to do with the fact that he's probably mostly not heard either Mixtec or Spanish for half his life and has instead been immersed an English-speaking environment with which he mostly couldn't interact.
- KibbutzDalia 7y agoWhat a sad story. I'm glad the reporter bothered to find out this man's name.
- duxup 7y agoI look at my family and I can't imagine the date of that family. 12 kids, mom and dad and 9 kids dead...the others scattered :(
- bronz 7y agoso he was mostly unresponsive but could still feel pain. they were doing stuff with his tubes with no pain meds for almost two decades. that has to be one of the most horrifying things ive ever imagined.
- elliekelly 7y agoThat was really surprising to me. I’m not a doctor but it seems easy enough to assume that patients in a vegetative stage can feel pain and medicate them accordingly. The risk of over medicating in that situation seems to be outweighed by the risk of someone having to suffer in silence. The assumption that someone who can’t communicate pain is unable to feel pain seems misguided at best.
- nonbel 7y agoThis type of thing is standard in healthcare. Doctors only began saying babies felt pain in the late 1980s, and only then because a mom made a big fuss in the media about it when she discovered on accident that her baby received open heart surgery without anesthesia. All of a sudden the decades of research that had been interpreted as showing babies didn't feel pain was overturned and new research showed they did. Medical research really is mostly a series of fads.
- adrianN 7y agoI can imagine that there are legitimate reasons not to use anesthesia on babies who show no signs of remembering the pain when they've become able to communicate. Anesthesia is not without risk, probably doubly so for a developing brain.
- nonbel 7y agoSo? Does that mean babies don't feel pain? Because that is what the medical profession concluded. Here is a good overview: http://nocirc.org/symposia/second/chamberlain.html http://nocirc.org/symposia/second/chamberlain.html
- lurker9000 7y agowhat an incredible waste of tax payer dollars for someone who will never contribute anything back to society.
- sysbin 7y agoInsane! Stories like this one make me question if it should be a requirement for every person to have on file his/her AMD for situations related to this outcome. People shouldn’t fear death or existence may be an extreme prison of torture. Why people continue to allow this is beyond me. Heck only till recently in all of humankind has this kind of torture become a thing. Geese..
- D_Alex 7y ago>Why people continue to allow this is beyond me. If, in the end, the patient recovers, what a happy ending that would be! And we might learn how to better assist others in this condition. The alternative is giving up forever on such cases. This is also partly why I lean "against" on euthanasia.
- gekkeboom 7y agoAnd I'm so happy I live in a country that permits Euthanasia. And the rules for it are clear: (some of them) 1. Intolerable suffering 2. No outlook on any improvement There are cases where people recover after years being in coma. However, there are many, many, many more people in the same state who never recover, who are just plants. Life is not sacred. Quality of life is.
- tremon 7y agoAnd the rules for it are clear 3. Patient's affirmative consent (antedated if need be) I too am happy to live in a country with a humane policy towards voluntary end-of-life, but this is not a clear cut case where euthanasia would apply: this is a patient with at least some consciousness left, but that no court would find competent to make decisions, and with no known relatives (up until the reporter found one). The question then becomes not only whether the required conditions for euthanasia apply, but also whether the state-appointed legal guardian has the mandate to make such a fundamental decision on behalf of the patient. Personally speaking, granting that kind of power to a government representative is not something I'm comfortable with.
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- NietTim 7y agoWhat an incredibly beautiful and humane article
- scotty79 7y agoMy SO is currently in hospice after 6 brain surgeries for brain cancer (4 over last year with her state gradually deteriorating). For the last year she was severly disabled and had to be help with sitting down, standing up, lying down and adjusting pillows and blankets as she had very limited use of her hands and general body coordination. She had to be kept safe while walking. It wasn't as good life as she had before but it was life. She was spending time with family, watching ton of netflix and movies, enjoying meals, especially when on steroids. She even managed, with a bit of help, to throw a party for my 40th birthday in march this year, that was cool enough to stave off my usual birthday downward mood swing. Now she's lying in hospice bed with only minor control of her eyes and even less of her mouth. Barely concious. At most minimally responsive. Feeding tube, oxygen, urinary catheterer, central venous catheter. She's kept alive and somewhat sedated. First reccurence she had after 5 years after initial treatment and diagnosis. Last recurrence happend in two months. It's already a month past last operation. I'm a bit torn because I'm firm realist and I believe no matter how bad life is, it is the only thing that has a value for you because it's the only thing you have. When your life ends, there's nothing else, no new game, not even admiring your high score. Your life has an ultimate value to you and you have to try to make the best of it even if it consists of sleeping on morphine all the time till your body just falls apart. On the other hand... she wished to die on an operating table under general anesthesia. Unfortunately she had too good surgeon for that to happen. If she were to spend 5 years like that I think she'd wish for her cancer to grow faster.
- gekkeboom 7y agoI don't think that life in and of itself is valuable even under terrible conditions. Especially if there is no positive outlook, that things will be better, no reason to hang on. I think only one thing really matters: QUALITY of life. Life is not intrinsically sacred. QUALITY of life is to me.
- scotty79 7y agoMy belief is that since there's nothing except for life, life of any quality is infinitely better than no life. However this belief of mine is currentlly being viscerally challenged.
- bregma 7y agoBefore it ever comes to that I want to be taken behind the barn and told about the rabbits.
- efa 7y ago...kept alive by a system that didn't care enough to learn his name While it is ridiculous to me that they didn't do a simple fingerprint check, it's kinda strange to use this language and then go on to tell how the "system" has provided round the clock care for over a decade costing millions of dollars. The system seems to care. I'm sure on the BP side they are just overwhelmed and don't have the manpower to run something like this down.
- rconti 7y agoAgreed. I'm proud of the "system" for choosing to keep him alive. My wife works in a county hospital here in CA, and I'm proud of the great work they do to save the lives, every day, of the 'illegal' immigrants, of the indigent, of the homeless, of prisoners.
- aquadrop 7y agoI'm not sure about system's motivation though. There are 2 "systems" - the one which pays and the other one, which receives the payment for the care, and this one probably wants him alive for as long as possible. They mentioned it cost 4 million, it's around 20k a month. For a person that takes up one bed in a corner of a room densely filled with people like him. Ignacio would be lucky to earn 2k per month from back-breaking labor if the incident didn't happen, and yet now he generates much larger amount for the system just laying on the bed.
- algaeontoast 7y agoI’ve signed legal documents to prevent this happening to me in the future. I have not signed a DNR, but I’m certain I would never want to be kept alive arguably against my own will and the will of the natural world. After watching my grandfather succumb to Alzheimer’s I’m relatively certain we’ve taken some forms of hospice and medical science too far. Albeit, extending the life of our bodies past the reasonable lifetime of our brains.
- david-gpu 7y ago> I would never want to be kept alive arguably against my own will and the will of the natural world. I get what you are saying, but let's not forget that "the will of the natural world" includes dying as an infant from diarrhea, an untreated fever, etc. There are plenty of diseases which are now easily treatable and yet killed millions until a century ago.
- Allower 7y agoTubes and tax payer dollars?