Kept alive with tubes for nearly 17 years • Hacker News Board

Re: Kept alive with tubes for nearly 17 years

#101

Post by scotty79 » Fri, Aug 02, 2019, 4:12 PM UTC

fjfaase wrote: post #56

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 wish you much strength. The kinds of decisions you are facing (have faced) are the hardest you can imagine and can only be understood if you have been in the situation yourself. I believe that nobody has the right to judge them. Last October, I lost my then 61 year old wife to Early-Onset Alzheimers disease. I saw her slowly fade-away and losing all her abilities, returning to a baby-like state. People often asked…

> The kinds of decisions you are facing (have faced) are the hardest you can imagine

The thing is there are no decisions to make. She'll be kept alive as long as possible as law and religious morality requires. All the previous decisions that were made were the most reasonable we could take and there were barely any alternatives along the way.

The hard thing for us is just experiencing it all the way and beyond.

Re: Kept alive with tubes for nearly 17 years

#102

Post by scotty79 » Fri, Aug 02, 2019, 4:19 PM UTC

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…

Thank you. Keep strong. Nobody knows how long they will live. Even healthy people. You have a loving family and the little pleasures. You still have a lot of good ahead of you.

Re: Kept alive with tubes for nearly 17 years

#103

Post by jrnichols » Fri, Aug 02, 2019, 4:49 PM UTC

hestipod wrote: post #4

This 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 stimu…

> unlike a DNR which has more restrictions and requires a doctor's approval

this varies upon states. Definitely check with the state that you're in.

I'm a Paramedic and sadly, we experience these situations rather often. End of life issues are tricky and it's a conversation that people want to avoid, but it's a conversation that I believe they absolutely must have.

Re: Kept alive with tubes for nearly 17 years

#104

Post by david-gpu » Fri, Aug 02, 2019, 5:05 PM UTC

algaeontoast wrote: post #73

I’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 life…

> 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.

Re: Kept alive with tubes for nearly 17 years

#105

Post by EliRivers » Fri, Aug 02, 2019, 5:09 PM UTC

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…

... and you have to try to make the best of it

Is this built on anything, or is this your axiom?

Re: Kept alive with tubes for nearly 17 years

#106

Post by close04 » Fri, Aug 02, 2019, 5:14 PM UTC

scotty79 wrote: post #89

close04 wrote: post #52

Earlier quoted context omitted.

> 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 thin…

> I think I can stay grounded pretty well even when my mind is in terrible physical condition

Perhaps it's just like torture, given enough time and suffering things change. Every person has a breaking point. I can't imagine anyone taking torture as "keep doing it because it's still better than dying".

> We can be pretty sure that there's no other side.

Pretty sure. I'm not a spiritual person so this isn't about religion. I was just being thorough so until I get to see nothing on the other side I will at least give the option a passing mention.

And I don't think your mind hangs on to life just because once it's over there's only nothingness. The human mind probably can't even conceive what "nothing" means. You might hang on for more "practical" reasons, like "I spent years building this life, I can't waste it especially if there's a slim chance it gets better".

Re: Kept alive with tubes for nearly 17 years

#107

Post by lifesahack » Fri, Aug 02, 2019, 5:32 PM UTC

scotty79 wrote: post #96

lifesahack wrote: post #61

Earlier quoted context omitted.

Depression gives you a negative outlook, regardless of how good your quality of life is. An irrational thought loop that whispers to you (or screams at you) that things will not get better. It's easy to conflate negative thoughts into reality. If you do find a way out, the idea that life itself is sacred (regardless of quality of life) can help keep things in perspective for next time.

I deeply believe that depression is just physical brain damage and dark thoughts are just the symptom making harder for you to get treatment just like a pain in the knee might make it harder for you exercise it a bit or get to the doctor to get treatment. I don't think that dark thoughts by themselves cause depression or even directly contribute to it. Same way the feeling of pain doesn't make your knee worse. I thin…

Depression is a negative thought loop that in the moment feels impossible to escape. Irrational thoughts seem rational. In a clinical sense depression (as a disorder) may be the cause. It persists even when your quality of life is good. That said, depression can also be an effect (triggered by a traumatic experience).

Distancing yourself from your feelings may help temporarily, drugs do that.

Occupying your mind with activities that provide a positive reward loop and positive feeling (hobbies, exercise, social activities) likely makes the most difference.

Re: Kept alive with tubes for nearly 17 years

#108

Post by roywiggins » Fri, Aug 02, 2019, 6:19 PM UTC

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're better at anesthesia now, but would we have ever gotten good at anesthetizing babies if we kept believing that they didn't feel pain in the first place? Why bother working out how to do it if we think they don't feel pain?

Re: Kept alive with tubes for nearly 17 years

#109

Post by collyw » Fri, Aug 02, 2019, 7:16 PM UTC

felipemnoa wrote: post #10

baddox wrote: post #9

Earlier quoted context omitted.

That only works if anyone is “listening.”

SOS is pretty recognizable even by people that don't know morse code. It has a very distinctive pattern to it. You can use it to get someone's attention.

As someone who was in the boy scouts then the air cadets as a kid, this seems true. Is it the same for people who have not had an upbringing that involved outdoor activities?

Re: Kept alive with tubes for nearly 17 years

#110

Post by aquadrop » Fri, Aug 02, 2019, 7:59 PM UTC

rconti wrote: post #84

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.

I'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.