
Looking for a Place to Die - JacobAldridge
http://www.nytimes.com/2011/12/22/opinion/looking-for-a-place-to-die.html
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edw519
Sorry to say, I've been through a very similar situation 3 separate times in 3
different cities as the primary caregiver. The least intuitive and most
important thing I learned each time was that there are many wonderful options
available but you have to find them. Once you do, it's amazing how much easier
things get for everybody involved.

There are many levels of care available between intensive care and hospice and
plenty of funding available to pay for almost all of them if you look hard
enough. Sadly, OP mentions none of this. What an unhelpful article.

There is part-time home health care, full-time home health care, assisted
living, nursing homes with multiple levels of appropriate care, and multiple
levels of hospice care. (Six days to live or you're not accepted? Shame on
them. What kind of thing is that to put caregivers through?)

There is also tons of "care for the caregiver" which is indispensable. I don't
how I would have made it without that.

Most importantly, I can't say enough for all of the wonderful people who cared
for my loved ones, in many ways much better than I ever could have. They're
out there, dedicating their lives to make this inevitable transition better
for everyone.

Theresa Brown, I suggest a follow-up "how to" article for caregivers. Unlike
this piece, that would take a little research, but could be your contribution
to this difficult, but easily addressed problem. You could make it the piece I
wish I had read instead of figuring it out myself at the worst moment of my
life. Please use the resources of the New York Times to finish the work you've
barely started here.

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jstsch
If you let an animal die like this, it would be called animal cruelty. I'm
happy we have the option here in The Netherlands for a less painful and
dignified death.

~~~
wpietri
I would also prefer the option of assisted suicide, but hospice is a
reasonable option.

Hospice doctors and nurses are trained in palliative medicine, and the
hospices themselves are peaceful places, very different then hospitals. I have
unfortunately spent significant time at two hospices this year, and had an old
friend choose hospice care at home. It was a very humane way to go, with no
suffering.

I think self-euthenasia should be allowed, but letting nature take its course
has a certain clarity to it. Especially in cases like these, where disease
progression impairs decision-making faculties.

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wpietri
Put this on your holiday to-do list: discuss with your family when you want to
the doctors to give up.

I know that doesn't sound fun, and I know the holidays seem like the wrong
time, but there's never a right time. Do it now.

I just went through the cancer-to-hospital-to-hospice transition this fall
with my mom, and I am immensely grateful that we had all talked about what we
wanted. And then put it in writing, with a living will and a durable power of
attorney.

At some point a team of doctors may turn to the person you love best and say
"What should we do?" Don't make them guess.

~~~
melling
...or this holiday season ask yourself if there's anything more you can help
to do to solve this problem. Give money, research, tools, engineering, etc.
The War on Cancer started in 1971. 40 years later we should not be reading
these types of stories. There are a lot of smart people who read HN. I saw
this TED talk last week. There's a lot of inspirational research going on.

[http://www.ted.com/talks/yoav_medan_ultrasound_surgery_heali...](http://www.ted.com/talks/yoav_medan_ultrasound_surgery_healing_without_cuts.html)

~~~
wpietri
I entirely support more cancer research, but I wouldn't want people to be
disappointed in our progress so far. There will never be a single cure for
cancer, because "cancer" isn't a single kind of thing:

<http://www.phdcomics.com/comics.php?f=1162>

Great strides have been made. E.g., one friend with leukemia just takes a
daily pill. 40 years ago we would have buried him by now, but since he got
cancer he's taken up doing triathlons. Go science!

~~~
melling
Yes, I understand cancers is plural and there won't be a single cure.. It's
not have far we've come, it's how far we have to go. Easy early detection
would really help more people. We need to solve a lot of problems, which gets
back to my original request. A lot of really smart HN'ers looking for problems
to solve.

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nixle
That's so sad, but so real and common. Where I'm from, the law (kind of)
allows for euthanasia. People can decide when to die, and have the option of
leaving this place in a dignified manner, whit friends and relative in the
room.

~~~
shakesbeard
I'm proud that my country does not prohibit assisted suicide. If a person is
lucid and has the will to die it's their own decision. It's not like you go to
one of these organizations and 2 hours later you're dead.

"Switzerland's laws that prohibit killing continue to apply in full. Direct,
active euthanasia (deliberate killing in order to end the suffering of another
person) is therefore also forbidden. By contrast, both indirect, active
euthanasia (the use of means having side-effects that may shorten life) and
passive euthanasia (rejecting or discontinuing life-prolonging measures) –
while not governed by any specific statutory provisions – are not treated as
criminal offences provided certain conditions are fulfilled."

Source:
[http://www.bj.admin.ch/content/bj/en/home/themen/gesellschaf...](http://www.bj.admin.ch/content/bj/en/home/themen/gesellschaft/gesetzgebung/sterbehilfe.html)

~~~
wpietri
For what it's worth, I believe that it's the same in the US. Direct euthanasia
is definitely illegal. But palliative care that shortens life (e.g.,
narcotics) is fine, as is passive euthanasia.

The biggest problem I see here is that unless the patient expresses a clear
desire to end treatment (either in the moment or via legal documents prepared
in advance) then medical professionals must continue to treat. I think the
that's a fine way to run things, but it means Americans _must_ be very clear
about what they want if they are to avoid dramatic interventions that may do
very little to help them and certainly are scarring for the family.

~~~
philwelch
Some US states explicitly allow assisted suicide: Washington, Oregon, and
Montana.

~~~
davidw
Oregon,for one.

------
mahrain
I get very angry when I read articles on all the heartless injustice people in
the USA have to go through with their terrible medical system. Putting
patients in deep debt, going uninsured, people dying because they can't pay
for treatments, and now this. I won't give you the primal response I wrote
here first and just leave it at "I hope things will improve and become humane
again."

~~~
anamax
> Putting patients in deep debt,

The bankruptcies are from living expenses, not medical expenses. Sick people
can't work, so housing and so on become a problem. Free unlimited heathcare
can't solve that problem.

> going uninsured,

All poor people in the US are eligible for medicaid. Many don't bother to sign
up until they get sick. While they're technically uninsured until then,
they're not actually uninsured.

> people dying because they can't pay for treatments,

Feel free to list any place that will do every possible treatment "for free".
(And no "every approved procedure is free" isn't anywhere near "every possible
procedure".)If you can't, we're merely arguing about where "for free" stops.

There's always a point where it comes out of your pocket. Yes, even under the
nationalized system.

~~~
knz
The financial burden is not just for those without insurance or the “poor”.

My wife was given a 30% chance in an ICU room earlier this year. Since then we
have been through a month in hospital, multiple surgeries, and many doctors
appointments. The total cost to date has been over $250,000. Even with
insurance we have still paid $10,000 and covered another $10,000 while waiting
for reimbursement. The new insurance calendar year starts on January 1st – so
we will be paying another $10,000 for a surgery planned in early 2012.

Our household income is $30-40k above the US median and we have savings, but
it’s amazing how quickly your savings start shrinking when your partner is
unable to work and you need to take months of unpaid leave to attend
appointments and sit in surgery waiting rooms.

Any politician that talks about fostering innovation and entrepreneurship but
continues to support the status quo is a fraud. Surely removing the financial
and administrative burden of healthcare for business is better than any tax
cut congress could come up with?

~~~
anamax
> Our household income is $30-40k above the US median and we have savings, but
> it’s amazing how quickly your savings start shrinking when your partner is
> unable to work and you need to take months of unpaid leave to attend
> appointments and sit in surgery waiting rooms.

Bingo. Heath insurance doesn't address those costs.

> Surely removing the financial and administrative burden of healthcare for
> business is better than any tax cut congress could come up with?

And you think that Congress knows how to do this?

Medicare fraud is probably close to $100B/year. How are you going to do better
AND reduce costs?

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auxbuss
Good piece. It's well worth watching Terry Pratchett's "Choosing To Die",
about assisted suicide, for an argument of one solution to this dilemma. I'm
not sure there's currently a better way to hack death.

~~~
corin_
I've never been a fan of his work, but I have used his driver a few times in
London and from conversations with him I suspect I'd like Pratchett as a
person a great deal more than his writing. So, thanks for the suggestion, will
make sure to watch it some time soon.

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quizotic
This was my story, 13 years ago. I did all the care with two kids, 4 and 7. It
would have been great to have help.

But the thing that the article misses is the proportion. If the suckiness of
death and dying is normalized to -100, then having the hospice care feels
somewhere south of 20, moving the experience from a -100 to at best -80.

As much as I dislike our insurance system, I'm not sure it's worth a lot of
money for end-of-life help.

~~~
wpietri
My understanding is that offering hospice is very cost-effective. For a lot of
people the only reasonable alternative is staying in a hospital, which is very
expensive.

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erkin_unlu
No one should be put in a dilemma like that, human life&death is not something
that can be processed by insurance companies as logical/profitable. Our govts
must be able to provide free health care at least for the dying. And no family
should be seperated like that they cannot get together when one of them is
dying and needs all the attention.

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karpdpu
nobody ever wants to die, but given the choice, I think most would prefer
their home over a hospital, I know my dad did

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davidw
Well that was a cheery, uplifting article. I'm not quite sure it's in keeping
with the Festivus spirit.

~~~
fennecfoxen
Cope.

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richf
Wow.. moving piece.

