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Kept alive with tubes for nearly 17 years

latimes.com

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Re: Kept alive with tubes for nearly 17 years

#61

Post by lifesahack »

gekkeboom wrote: post #43
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 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.

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.

Re: Kept alive with tubes for nearly 17 years

#63

Post by b_tterc_p »

asdfasgasdgasdg wrote: post #16
ggm wrote: post #3

As 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 t…

Hard 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.

The comparison to solitary is an interesting one I hadn’t considered.

Re: Kept alive with tubes for nearly 17 years

#64

Post by b_tterc_p »

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 long tail is unknown length. Might a warm send off not be preferable to difficult times ahead?

Sorry for your situation.

Re: Kept alive with tubes for nearly 17 years

#65

Post by b_tterc_p »

nonbel wrote: post #24
adrianN wrote: post #22

Earlier quoted context omitted.

I 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.

So? 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

I would rather suffer pain as a baby than permanent brain damage from anesthesia. It’s not a simple choice.

Re: Kept alive with tubes for nearly 17 years

#66

Post by mattkrause »

adrianN wrote: post #41
scotty79 wrote: post #40

Earlier quoted context omitted.

You are in an accident and have to be operated on, but using anesthesia would drop probability of survival from 90% to 10%. They can give you instead a drug that will prevent you from remembering pain that has no influence on probability of success operation. What would you chose? I'm not saying that this is the exact case with infants. Just trying to illustrate there might be valid reasons to inflict temporary pain…

Technically we don't know whether general anesthesia actually prevents you from feeling pain, or whether it just prevents you from forming memories. As far as I know at least.

I guess that's technically correct, in that it's difficult-to-impossible to "know" about someone else's subjective experiences.

On the other hand, painful stimuli tend to (e.g.) increase a person's heart rate and blood pressure, and that the proper anesthetic plane blocks those responses, so it's clearly doing something in the moment. What we don't know every well is the mechanism of action for general anesthetics.

Re: Kept alive with tubes for nearly 17 years

#67

Post by efa »

...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.

Re: Kept alive with tubes for nearly 17 years

#68

Post by roywiggins »

adrianN wrote: post #22
nonbel wrote: post #21

Earlier quoted context omitted.

This 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. Me…

I 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.

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.

Re: Kept alive with tubes for nearly 17 years

#69

Post by Nasrudith »

sysbin wrote: post #28

Insane! 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..

Why is a matter of agency and fear of death and ability to give non-impaired consent. People fear "getting written off" by other's judgement.

It is one thing when it is readily apparent neccessity -medics can only give you morphine while your guts are hanging out and getting you potentially barely saveable would cost say ten other lives of people who only need the bleeding stopped. It is another thing entirely when they have all of the time in the world and it involves tough decisions nobody wants to make until the conclusion is utterly foregone like total brain death.

Re: Kept alive with tubes for nearly 17 years

#70

Post by vageli »

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…

> 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 me, if she still recognized me. I often explained that that was a meaningless question. For me, it was far more important, whether I still recognized her. And I did. Luckily for her and us, her death came rather swift. She died within one and half week after developing a high fever (possibly due to dehydration) spending the last five days under palliative sedation.

I am so sorry for your loss. I need you to know that your words moved me deeply. Particularly

> People often asked me, if she still recognized me. I often explained that that was a meaningless question. For me, it was far more important, whether I still recognized her. And I did.

One of the hardest parts on me was seeing my father suffer a similar decline, but it was the moments of lucidity or idle chat or little things that showed me he was still there to some extent. Thank you so much for saying what I have long felt in my heart.

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