
Kept alive with tubes for nearly 17 years - elliekelly
https://www.latimes.com/california/story/2019-08-01/sixty-six-garage-unconscious-and-anonymous-for-17-years
======
scotty79
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 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.

~~~
jtr_47
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 firm believer that there's
more after this life and unfortunately we have trek through the good and bad
of this one to get to the end. Besides, where did we come from before we were
born?

I only live for today, because this is all I have.

Be strong if you can. It's tough and hard. What we are experiencing is apart
of life

Peace

~~~
salgernon
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.

------
ggm
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 to address them.

~~~
asdfasgasdgasdg
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.

~~~
chillfox
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.

~~~
Benjamin_Dobell
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.

~~~
lucian1900
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.

~~~
Benjamin_Dobell
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.

~~~
lucian1900
If scarcity was an actual issue, we could collectively decide what a fair
distribution of that scarce resource would be. Few things beyond a lottery
would be considered fair by most, but we can try.

However, we live under conditions of extreme supply for many things, including
most factors that would inhibit healthcare. We rarely need to choose.

------
hestipod
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 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
I 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
Learn morse code so you can communicate with any action you can do, like in
Johnny Got His Gun (the basis for One by Metallica)

~~~
hestipod
The guy in my story had no voluntary movements so Morse wouldn't have helped.
But memorizing:

.-.. . -

\-- .

-.. .. .

Could be useful.

*Cannot format it properly sorry.

------
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.

~~~
rconti
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.

~~~
aquadrop
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.

------
maroonshifter
Juliana 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.

------
bregma
Before it ever comes to that I want to be taken behind the barn and told about
the rabbits.

------
bronz
so 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
That 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
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.

Medical research really is mostly a series of fads.

~~~
adrianN
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.

~~~
nonbel
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](http://nocirc.org/symposia/second/chamberlain.html)

~~~
scotty79
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 to save
health.

~~~
adrianN
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.

~~~
falsedan
General anesthesia is usually a combination of multiple drugs. We know exactly
what each drug does, medical science isn’t so good at explaining why the drugs
have these actions. anesthetists combine these drugs to suit the requirements
of the procedure and the patient

Anesthesia usually includes drugs with distinct, separate actions, like an
analgesic (to block pain receptors), muscle relaxants (so patients can be
moved/organs accessed), CNS depressants (to prevent unexpected spasms
disturbing the surgeon), coma-inductors (so patients don’t chat with the staff
and freak them out after practicing on cadavers for years), and amnesia-
inductors (because surgery is kind of gross).

~~~
jdietrich
_> We know exactly what each drug does_

We know enough about them to use them safely, but most anaesthetic drugs are
somewhere on the spectrum from "not fully understood" to "a complete mystery".
Science knows how anaesthesia works in the same sense that I know how a car
works - I can push the pedals and turn the wheels with sufficient proficiency
to get to the grocery store in one piece, but I'll be damned if I can explain
what's happening under the hood.

[https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2778226/](https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2778226/)

~~~
falsedan
yes, if you quote the next part of my post:

> _medical science isn’t so good at explaining why the drugs have these
> actions_

you can see I'm in full agreement

------
sysbin
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..

~~~
D_Alex
>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
And 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
_And 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.

------
KibbutzDalia
What a sad story. I'm glad the reporter bothered to find out this man's name.

------
DoreenMichele
_He could hear, but he couldn’t understand language._

English wasn't his first language. Or even second.

That has to be complicating things.

~~~
est31
Read a bit above the quote:

> With the help of a video interpreter, Schnakers gave Ignacio a series of
> commands.

~~~
DoreenMichele
_At 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.

------
duxup
I 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 :(

------
NietTim
What an incredibly beautiful and humane article

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algaeontoast
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 lifetime of our brains.

~~~
david-gpu
> 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.

------
incomplete
wow. this an incredibly moving story... so bittersweet.

