

What Broke My Father’s Heart - muriithi
http://www.nytimes.com/2010/06/20/magazine/20pacemaker-t.html?ref=magazine

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qeorge
Amazing story. Brought me to tears.

My step-grandfather found himself in a similar position about 5 years ago.
He'd been diagnosed with terminal cancer, and was in for a long decline. He
opted to refuse food, and died within a few weeks. Sadly, that's the only
option available to many who are ready to move on.

I remember him comforting his wife and daughters, telling them not to be
scared, even as he lay hallucinating and dying. He'd lived a good life to an
old age, and he was ready.

We owe our parents better. Death is a part of life.

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three14
I'm not responding to the specific story in the article, but -

Several of my grandparents had dementia of one sort or another. They clearly
could still enjoy life, but completely differently than when they had their
faculties. I wonder, if you could have gotten the question through to them, if
they would have felt their lives weren't worth living. It doesn't seem the
same question to ask a 30-year-old, "would you like to keep living at age 80
with no short term memory?" and to ask an 80-year-old with no short term
memory, "is your life worth living?"

~~~
carbocation
This is really insightful. There is actually a huge body of research that does
exactly what you suggest, and it largely supports your implied conclusion:
people prefer death in hypotheticals, and prefer life when the question is no
longer hypothetical.

~~~
dcx
I agree with the research, but that does sound oddly tautological. Of course
the people sampled preferr life! You can't sample the ones who didn't... (One
would hope that was controlled for though.)

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RiderOfGiraffes
Single page:

[http://www.nytimes.com/2010/06/20/magazine/20pacemaker-t.htm...](http://www.nytimes.com/2010/06/20/magazine/20pacemaker-t.html?ref=magazine&pagewanted=all)

~~~
moultano
Does anyone know why they split these into so many pages? Is it really just ad
impressions? I still don't understand that.

~~~
Kisil
I imagine it's also for tracking how far through the article readers get. That
would be useful feedback for the writer: "Katy, you lost 44% of the audience
after page three..."

~~~
moultano
At the risk of making that statistic _dramatically_ worse. . .

Heisen-audience-loss-tracking I suppose.

~~~
ek
Seriously. I skipped to page 6 simply because I didn't want to keep clicking
next, next, next.

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MikeCapone
This just made me donate an extra $100 to the SENS Foundation (sens.org),
which is working on curing the diseases of aging (many of which aren't
considered "diseases" by the regulators at the FDA, so many are dramatically
under-researchers despite the massive amount of suffering that they cause).

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Zarkonnen
Yeah, this made me cry. My grandfather has been bed-ridden with throat cancer
for months, unable to get better or die, unable to speak, losing his mind from
all the painkillers, his relationship with his wife breaking under the strain.

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robryan
It may end up only being a very short period of time in human history where we
are advanced enough to prolong life with these type of stopgap measures
without being able to treat the causes.

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michael_dorfman
Wow, what a beautifully written piece.

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DanielBMarkham
As somebody who has been in this spot and known many more who have been there,
it was a good article. But I had a hard time sorting out the political
bullshit. I eventually got overwhelmed by it and bailed out.

 _Doctors peddle their wares on a piecework basis; communication among them is
haphazard; thinking is often short term; nobody makes money when medical
interventions are declined; and nobody is in charge except the marketplace._

No. This is not true. If the marketplace were in charge, the people who got
the service would control and be responsible for paying for it by making free
and informed decisions. Instead, this is a case where regulation is in charge
-- payments are made based on arbitrary rules set forth by well-meaning
people. People who might read articles like this and think gee, if we only
made up a few more rules, or had some really smart guys in charge of the right
stuff, we could fix these other unintended consequences we made last time we
mucked around. There is no need for some uber-doctor who could somehow take
the place of the buyer. There is _nobody_ who can effectively take the place
of the buyer. That's one of the main structural problems of the system. It's
not that the marketplace is working -- it's that we've perverted and destroyed
the marketplace and instead we have a free-for-all for handouts based on
policies created by whatever gets votes. Which will continue to get worse.

Wonderful writing, though. I am always amazed at the capacity of folks to see
their entire life experience through their own filters (including me)
regardless of what the actual facts are. I hope writing this helped her reach
closure and say goodbye

~~~
dkarl
_It's not that the marketplace is working -- it's that we've perverted and
destroyed the marketplace and instead we have a free-for-all for handouts
based on policies created by whatever gets votes._

When did an efficient marketplace for medical services ever exist in the
United States? "Buyers" have always depended on the ethics and professionalism
of doctors; very few people have the education and sophistication necessary to
second-guess them. People have always tended to trust doctors, if only because
it was the least bad option, and when they don't trust doctors, the result is
a thriving market for superstition and quackery. So if the buyer's decision is
reduced to which doctor to trust, then you need a way to compare doctors'
performance. Creating a way to compare doctors' performance would be a big
undertaking requiring some kind of unified, centralized push for
standardization -- almost certainly by the government.

There may be other ways to _actively construct_ an efficient market, but
simply removing the perverting force of regulation will not restore a
previously existing efficient market, because the market for medical care has
never been efficient, regulation or no.

~~~
carbocation
Hi. Future doctor here. I agree with both of you (I don't think it's
paradoxical to do so). To augment your point, consider that if doctors are
left to regulate themselves, you run into the additional problems of self
regulation (or lack thereof, for both thoughtful and malicious reasons but
generally to bad effect).

Patients, even in the information age, cannot yet synthesize enough
information to generally be intelligent, independent consumers of medical
care. There is too much bogosity that has to be filtered out, and most people
aren't good at that. (What??? Drug X killed 1 person once??? Well _I'm_ not
taking it! [Nevermind that Drug X has saved hundreds of thousands of lives.])
I don't think I'm being elitist, because physicians suffer the same problems,
though perhaps to a lesser degree. While they might be more informed consumers
of health care generally, a cardiologist probably doesn't have any strong,
evidence-based opinions of which is the best treatment for their cancer. (I
mean, besides fearing doxorubicin.) Their training in understanding the
primary literature is probably their only advantage (and their training in
outdated chemotherapeutic agents from medical school is probably their major
disadvantage).

~~~
jquery
> Patients, even in the information age, cannot yet synthesize enough
> information to generally be intelligent, independent consumers of medical
> care

Most people don't know anything about cars, nor are even able to comprehend
the complexity of your average vehicle, yet through trusted 3rd-party sources
manage to find and purchase these extremely complex machines in a mostly-free
market. Maybe as a future doctor you can explain why trusted third-party
certifications would not emerge to protect the public if the government
stepped out of the process? (I am genuinely curious)

~~~
carbocation
Health care is like auto repair more than it is like purchasing an auto; you
were born with this vehicle. I don't understand enough about cars to decide if
I should buy Fuel Additive X that's being heavily marketed. Whether I buy it
or not is pretty unimportant, because it's just for my car.

If someone is trying to sell me an angioplasty, how am I supposed to decide
for myself if I need it? Unfortunately, guessing wrong about the necessity of
an invasive procedure is more risky than choosing the wrong fuel additive. No
consumer guide can answer that question - and if it can, it can just label
itself "medical school" and I'll respect that. Let's say that some guide says
"angioplasty does not reduce mortality except in the setting of unstable
angina or myocardial infarction, so don't get it." The doctor could come back
and say, "yeah, but you have diabetes and that guide didn't look at studies
with patients with diabetes." (Stuff like this is true and critically
important to understanding clinical trials.) Or maybe you have atypical
vascular architecture so the guides don't address that. I'm basically trying
to get at _clinical equipoise_. Clinical equipoise occurs more often than you
might think; it's a time where well-meaning doctors can disagree with one
another because there is not specific enough data (or none at all) to answer
the question at hand. I don't see a guide handling that.

(Note that I'm saying nothing about whether or not patients can choose
_physicians_ intelligently - I think they do it quite well via word of mouth -
but I'm referring specifically to the consumption of medical care like
medicines and procedures.)

~~~
jquery
First, thank you for your thoughtful and detailed reply.

> Note that I'm saying nothing about whether or not patients can choose
> physicians intelligently

I don't think I communicated very well... I was referring almost exclusively
to this. Even this might be too specific... picking a good "provider" (e.g., a
"brand", one level above a physician) might be the best an individual could do
(since evaluating an individual physician might be too difficult).

It's all academic, really. Since the government pays for medical services
directly (via Medicare and Medicaid) it's a given that the government has to
pay for a huge organization to vet the individuals and groups its reimbursing.
This means there's not as much of a "hole" for the private market to fill...

------
Sukotto
I sincerely hope that, if my ability to think and remember die, that my family
and friends will help my body follow.

~~~
dmm
If you really mean that, make sure you tell them what you want. Better yet,
put your wishes in writing too.

------
kiba
We don't have the proper tools to maintain and repair our bodies like we can
with our houses and cars, at least not completely. What we got is medicine too
imprecise to repair many parts of the human body.

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siculars
Story aside, a few days back there was an article,
<http://news.ycombinator.com/item?id=1424893>, on how the NYT would ban the
word "twitter" from usage by their writers. Nevertheless, the author uses the
word "googled" (page 3). And that is part of the beauty of the English
language - new words and new meanings. No doubt, the "ban" will be lifted
within a year or two.

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GrandMasterBirt
Great article. I have a similar outlook on life, I would rather die than lose
my mind, and I discussed this with my wife already.

I think the point is not the pacemaker. But the elongation of life and not
seeing death as a good thing. If we always chose to prolong life, under any
circumstance, then people profit (a dying person needs lots of medical care)
and their caretakers only suffer. The person, I don't know, is it better to
live with a half-working brain? Is it even living at that point?

I think while people want to live, people need to face death early, and tell
their loved onces what their wishes are. And hopefully this sort of situation
won't happen, or not for long.

~~~
protomyth
I have gone with the theory - if it is anything but my brain, use all the
machines / treatments (too paranoid that they'll find a cure / fix 10 seconds
after I die). If my brain is damaged, just let the body go, because what was I
has already left.

~~~
lifeisshort
I dont think you have any idea of how harsh treatments can be. I went through
radiations and invasive surgery to treat cancer. I am already wondering how
much more I will be willing to endure and permanently loose if the cancer
spread. I am scared to not even have a peaceful and descent way out if things
get too tough. I am under 30.

~~~
protomyth
No, I am well aware of how bad treatment can be. I am just not willing to go
quietly unless it is a problem with the brain. If it is mental impairment then
I am already gone.

