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Kept alive with tubes for nearly 17 years

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Re: Kept alive with tubes for nearly 17 years

#81

Post by roywiggins »

dsfyu404ed wrote: post #76
roywiggins wrote: post #68

Earlier quoted context omitted.

It seems like a case of motivated reasoning. Doctors needed to operate on babies; anesthetizing them would be hard. So they decided that babies can't feel pain and never investigated methods of anesthesia on babies.

More like anesthetizing them would be risky and they're not gonna remember it so it's not worth the increased risk to their life since infants are already fairly fragile and saving their life is the primary goal. It's not just "it's hard and we're lazy so lets make up an excuse" like you seem to be implying. Edit: Since apparently it wasn't clear, we're talking about the timeline when this issue was hashed out, so th…

We anesthetize infants fairly often now[1]. It's still a bit risky, but it's fairly common. It's gotten less risky because we do it a lot and have gotten quite good at it. If we'd never revised the science on infant pain, we never would have even bothered to try. Turns out, it's possible to do it fairly safely.

It's one thing to say, we're not going to use anesthesia because it's too much risk, it's another to say that they don't feel pain at all so let's not worry about it.

[1] http://europepmc.org/abstract/med/26958696

Re: Kept alive with tubes for nearly 17 years

#82

Post by lucian1900 »

Benjamin_Dobell wrote: post #35
chillfox wrote: post #19

Earlier quoted context omitted.

That 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.

Even 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.

How 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.

Re: Kept alive with tubes for nearly 17 years

#83

Post by asidiali »

jtr_47 wrote: post #60
scotty79 wrote: post #42

My 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 befor…

All the love to you my friend. I have stage 4 colon cancer + it made its way into my liver. I've been alive for a year now and I have no idea how much longer I have. I know what you are both going through. I know what myson & wife is going through, seeing me on my bad days during treatment. Knowing that one day I will leave them sooner than we had originally planned. No matter how bad things are or appear to be I'm a…

Your perspective is inspiring. Wishing you the best. Thank you for sharing your experience dealing with this.

Re: Kept alive with tubes for nearly 17 years

#84

Post by rconti »

efa wrote: post #67

...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 som…

Agreed. 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.

Re: Kept alive with tubes for nearly 17 years

#85

Post by mlcrypto »

scotty79 wrote: post #47
gekkeboom wrote: post #43

Earlier quoted context omitted.

I 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.

My 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.

That can be disproven easily. Imagine a life in a constant state of pain and torture

To me this proves there exists a threshold at which no life is better

Re: Kept alive with tubes for nearly 17 years

#86

Post by scotty79 »

b_tterc_p wrote: post #64
scotty79 wrote: post #42

My 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 befor…

> 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. I find this to not be self consistent. you would trade two boring work days for one awesome day right? Two bad weeks for a happy one? There has to be some long tail of uncomfortable days that you would rather enjoy on a shorter time frame, even if the l…

> you would trade two boring work days for one awesome day right

In principle you are correct, but in practice you rarely can make such choices because you can't possibly know the future.

You can think you are choosing better life by foregoing the treatment, but it turns out that severe symptoms set in sooner than expected and your life's bad anyways. Or you can think you are choosing longer but worse life but the side effects of the treatment don't seem to affect you much, therapy works way better than expected and you get to experience some joy you couldn't wish for, like holding your newborn grandchild.

What people usually do is balance probabilities and go for longer non-horrible life and hope for the best, and when everything becomes horrible there's usually not much left to make decisions about, which are inherently flawed even then.

Re: Kept alive with tubes for nearly 17 years

#87

Post by Benjamin_Dobell »

lucian1900 wrote: post #82
Benjamin_Dobell wrote: post #35

Earlier quoted context omitted.

Even 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.

How 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.

At 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.

Re: Kept alive with tubes for nearly 17 years

#88

Post by scotty79 »

mlcrypto wrote: post #85
scotty79 wrote: post #47

Earlier quoted context omitted.

My 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.

That can be disproven easily. Imagine a life in a constant state of pain and torture To me this proves there exists a threshold at which no life is better

As a theoretical scenario you are right but brain is very flexible. If all you know is pain wouldn't you just get used to it and still didn't want to die because as I said, there's nothing else for you?

Re: Kept alive with tubes for nearly 17 years

#89

Post by scotty79 »

close04 wrote: post #52
scotty79 wrote: post #47

Earlier quoted context omitted.

My 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.

> life of any quality is infinitely better than no life From someone who's been on the other side of the story (albeit nowhere close in severity) I can tell you that this is a philosophical debate that you might have with yourself for years and not really reach a solid and stable conclusion. Because it will change depending on your state. Like promising never to drink again during the worst drunkenness or hangover. O…

> not really reach a solid and stable conclusion. Because it will change depending on your state.

I can clearly see with myself how my mood affects my train of thought. And how my mood comes from the state of my body. I think I can stay grounded pretty well even when my mind is in terrible physical condition and goes to the darkest places as a result of that. I can somewhat filter out the influence of mood on my thinking.

> On the other hand we have no idea what lies on the other side - nothing or something that may be better or worse.

We can be pretty sure that there's no other side. All of neuroscience, medicine, biology and what we know about neural networks point to it being that way. The only thing that points to there being some other side is uneducated* people's fantasies and wishful thinking.

* (at least in neuroscience and medicine)

Re: Kept alive with tubes for nearly 17 years

#90

Post by salgernon »

jtr_47 wrote: post #60
scotty79 wrote: post #42

My 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 befor…

All the love to you my friend. I have stage 4 colon cancer + it made its way into my liver. I've been alive for a year now and I have no idea how much longer I have. I know what you are both going through. I know what myson & wife is going through, seeing me on my bad days during treatment. Knowing that one day I will leave them sooner than we had originally planned. No matter how bad things are or appear to be I'm a…

I was dx the same 5 years ago. After two years of treatments and surgery with what I thought was the best team in the country (UCSF) they decided that my liver mets were positioned such that surgery would be impossible. But my wife found a team at Sloan-Kettering in Manhattan that specialized in just this case. They resected 70% of my liver and followed up with one round of radiation - I’m now two years NED. Feel free to contact me username at me.com if you want more details.
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