
When A Daughter Dies - jvilalta
http://www.freakonomics.com/2012/10/16/when-a-daughter-dies/
======
enduser
I lost my sister to cancer 9 years ago when she was in her early 20s and I was
in my teens. Her experience with the medical system was humiliating, futile,
and expensive. My parents have never fully recovered emotionally. It has taken
me years to integrate the experience, and I still have ghastly memories of the
pains she endured recovering from unnecessary surgeries. When I read something
like this i feel how much I would like to see a change. It's only partly a
techological change--it is also imporant for us as a people to let go when
nothing can be done, not to make things worse out of a need to be seen doing
something. Unfortunately when a panicked parent is demanding that something be
done to save their child, someone will be willing to do something even if the
first person knows that nothing can be done.

When it is my time to die I intend to fully engage with the experience of
dying, and not to numb the experience with knife wounds, drugs, and over-
stimulating hospitals. Until then I intend every day to live fully, with great
sensitivity, and to remember that each day I live is one my sister did not
have. There is no entitlement to health or longevity; some things cannot be
predicted nor controlled.

~~~
guylhem
> _"it is also imporant for us as a people to let go when nothing can be done,
> not to make things worse out of a need to be seen doing something"_

In the case of cancer, universal care unfortunately seems like running in the
opposite direction. Sometimes admitting that nothing can be done is the right
thing.

Look at the case description - I wouldn't be surprised if the total bill was
at least between 100k and 200k - for 20 days of useless care which ultimately
resulted in the patient death.

There are some good economical analysis showing yearly cost that'll make you
cry, especially if you consider the alternative uses of that money and how
many lives could be saved - say in other countries.

With our current technology, universal healthcare for fighting cancer seems
like trying to stop a fire with gasoline.

~~~
lubos
Universal care is not running in the opposite direction.

I live in a country with universal healthcare.

I have several relatives who were diagnosed with terminal cancer. In this
case, the hospital simply told them, the cancer is terminal and they've been
given doses of morphine until they passed away. In USA, hospitals are facing
conflict of interest. On one hand, they shouldn't be providing unnecessary
expensive care but then they wouldn't be making as much money. No hospital
should be ever put in this position.

Honestly, I'm shocked at how many people in US are against universal health
care.

~~~
crusso
How does this:

> I have several relatives who were diagnosed with terminal cancer. In this
> case, > the hospital simply told them, the cancer is terminal and they've
> been given > doses of morphine until they passed away.

Go with this?

> Honestly, I'm shocked at how many people in US are against universal health
> care.

You can ask for palliative care from US doctors any time you like. You tell
them you don't want to be treated and they'll send you home to die. Morphine
prescriptions at that point aren't tough to obtain.

The shocking thing to me is that anyone would want universal health care that
leaves them with palliative care as their only option.

If I'm diagnosed with cancer that may be terminal, I might choose to go out in
a blaze of money desperately looking for a cure... or I might choose to give
up and die quietly. It should be my choice, though.

When you look beyond the political demagoguery for obvious power grab reasons,
you see that the US healthcare system produces just about the best results in
the world:

[http://www.forbes.com/sites/aroy/2011/11/23/the-myth-of-
amer...](http://www.forbes.com/sites/aroy/2011/11/23/the-myth-of-americans-
poor-life-expectancy/)

I'm shocked at how quickly people would give away their Freedoms for the
illusion of being cared for.

~~~
lubos
If you are lucky to be rich, nothing is stopping you getting better health
care and trying to add 1 or 2 years of life at extraordinary cost.

It just won't be covered by your insurance. To me, universal healthcare is a
tradeoff. Everybody will get at least some care and nobody will go bankrupt
because of medical bills.

Rich people will be still able to get whatever care money can buy. I don't
understand how this is a question of freedom. Nobody is giving up freedom.

~~~
crusso
> If you are lucky to be rich

What if you work hard to be rich, and then you choose to use your money to pay
for expensive treatments for you or your children? What if spending a bunch
more money buys you a great deal more than a couple of years? What if the
discoveries made at your great expense helps others who aren't so rich?

> Nobody is giving up freedom.

That's the justification of every little bit of thrown-away freedom we've made
over the last hundred years in America. Ah, the smell of boiling frogs!

By being forced to put taxes into a least-common denominator system out of
your control, you can't help but to give up freedom.

~~~
jtheory
> then you choose to use your money to pay for expensive treatments for you or
> your children?

That's fine in any country with universal healthcare.

> What if spending a bunch more money buys you a great deal more than a couple
> of years?

It's possible, of course, but generally you'll have the best health outcomes
with decent (cheap!) preventative health measures. The current insurance-based
care system in the US doesn't gain anything from preventative care. Universal
healthcare systems have a strong incentive to take this cheap route to a
healthy population, fortunately.

> What if the discoveries made at your great expense helps others who aren't
> so rich?

Um; you can be proud of that, then? Of course, you _can_ be a rich person who
pays for treatments to be developed which you can then deny to poor people;
that's called "the pharma industry".

> Ah, the smell of boiling frogs!

That's a myth; look it up. The frogs jump out when it gets uncomfortable. The
same thing applies to most slippery slope arguments -- you have to prove each
step would force the next. Most systems actually have forces pushing as well
in the opposite direction.

Personally, I see how getting reasonable universal healthcare working in the
US will be a difficult course, but I'm also convinced we have to fight our way
through the problems (mainly: the corporations currently earning enormous
profits from the current system...) and get it working. I grew up in the US,
sometimes without medical insurance; I've also spent much of my life with a
sometimes-expensive "preexisting condition".

Obviously, it's not "fair" if I'm bankrupted simply because I had the bad luck
to have this condition -- hey, not everything in life is fair -- but I'm
pretty sure that on balance, I'd be a more profitable economic unit/taxpayer
to the US if I simply didn't have to worry about that.

How many people don't launch startups because they can't risk it?

~~~
crusso
>> Ah, the smell of boiling frogs!

>That's a myth; look it up.

Uh, yeah, I know that it's not biologically true. It's a metaphor. It doesn't
matter that it's not biologically true just like it wouldn't matter if I used
the allegory of the Frog and the Scorpion or the Ant and the Grasshopper.

> How many people don't launch startups because they can't risk it?

How many people don't launch startups because they don't have the disposable
income needed to take risks?

You could compare US startup rates per capita with other countries featuring
Universal Healthcare systems. Wanna guess what that graph would look like?

~~~
jtheory
> Uh, yeah, I know that it's not biologically true.

You're skipping over my actual point; "slippery slope" is a logical fallacy by
itself.

>How many people don't launch startups because they don't have the disposable
income needed to take risks?

That's my point. You need to have _much more_ disposable income if you're
going to pay for medical insurance while you're hacking away in a garage. If
you're keen on cutting down your life expenses, you can get then down really
very low, even for a family... but expensive medical insurance doesn't play
along.

> Wanna guess what that graph would look like?

Hard to say -- how would you make it apples to apples? Obviously "has
universal healthcare" isn't the most significant variable in a straight
comparison.

~~~
crusso
> "slippery slope" is a logical fallacy by itself.

Not necessarily. I wasn't making a fallacious slippery slope argument of the
form A leads to B leads to C : B, therefore C.

I was simply pointing out that we are CURRENTLY in a state of greatly reduced
Liberty and we got here slowly, step by step. I wasn't positing an inevitable
terminal stage which would indicate a slippery slope argument. The stage we're
in regarding Liberty sucks plenty enough as it is.

> Hard to say -- how would you make it apples to apples? Obviously "has
> universal healthcare" isn't the most significant variable in a straight
> comparison.

Right you are. Since I'm not looking for a PhD in the area, I'll go with my
impression that the US has a great deal more entrepreneurial opportunities
than any other country on earth, especially when you put it against reasonably
comparable countries with universal healthcare. Add to that impression my
experience in starting up companies here in the US (in the Bay Area) where I
had plenty of disposable income because I wasn't paying high taxes to go to
large socialist programs for healthcare, housing, food, etc.

------
mcmatterson
This hits close to home. I came within a hair's breadth of losing my infant
daughter to cancer just over a year ago, and a few things come up in my
thoughts:

\- Not all medical systems are the disaster described here. We elected to move
back from the US to our native Canada to undergo treatment, and our experience
in ward (pre and post-op as well as on the oncology floor) was a dream (at
least given the circumstances). We experienced nothing but exemplary inter-
disciplinary cooperation, compassion for the patient (and family) experience,
and a professionalism driven by clinical need rather than liti-mitigation.
These qualities were exhibited even more strongly during the initial phases of
treatment post-discovery, which unfolded along a timeline similar to the one
discussed here.

\- Academic hospitals _are_ exhausting. My spouse ended up being the real hero
in this story (she was still breastfeeding at the time, and only one parent
was allowed to overnight in the room). My job was to make sure she and our
daughter had recovered enough each day to make it through a night of vitals,
endless beeping, and the occasional overnight chemo administration (don't even
get me started about that).

\- The need for patients and their families to drive the narrative of their
hospital experience and be their own champion is critical. I had worked in
healthcare for many years before this nightmare began (my old office was at
the hospital across the street from her room) and knew the system very, very
well. We divided up responsibilities so 'I looked outward, and [my spouse]
looked inward', meaning that I spent my time making sure that the relevant
referrals happened, that medications were administered on time and on dose,
and so on. My wife looked inwards towards our daughter, making sure she was
fed, entertained, and comfortable. This setup worked very well for us, and was
a likely contributor to our level of care.

\- The power of parents to be strong in the face of terrible (often
inevitable) odds is truly inspiring. We were lucky enough to know with
reasonable certainty fairly early on that we would one day be leaving the
hospital and resuming a normal life. Many, many families we met were not so
lucky. To see a parent express joy and love in the face of such long and
terrible odds is a truly unique experience. I myself am a measurably better
parent for having witnessed it.

~~~
aculver
Great thoughts. Very happy for your family that you came through this
successfully. Lots to be thankful for there.

So, I've seen a couple of your comments on HN in the past, and just wanted to
mention it would be helpful if you had some contact information (e.g. Twitter,
URL, etc.) in your HN profile so people can follow-up one-on-one when it makes
sense to do so. Unless, of course, you're trying to avoid people. :-)

~~~
mcmatterson
Heh, I never actually noticed there wasn't anything there (I don't think I've
been back to my profile page since I filled it out 866 days ago). Updated;
feel free to follow-up as desired :)

------
dandrews
I was struck by the amount of care that was seemingly influenced by fear of
litigation. An ambulance driver diverted to a closer e/r despite having a
physician onboard. A nurse wouldn't sanction ice chips without the admitting
physician's chop. Exhausting and time-consuming tests needlessly repeated.

I once asked a veterinarian acquaintance of mine why he hadn't become a
physician. "Wouldn't you rather drive something fancier than that pickup
truck?" I needled, gesturing out the window at his old F150. "Yeah" he
replied, "but those guys spend most of _their_ time doing paperwork. _I_ get
to practice medicine."

~~~
tibbon
I've had several conversations with my vet about how his practice is so much
smoother because he doesn't have to deal with an insurance industry (both from
the sides of patients and a huge malpractice insurance cost) that essentially
is just there to screw up everything. Few people attempt multimillion dollar
lawsuits against vets because fluffy died from something that was
unpreventable, but that's what happens daily in the US.

As a patient individually, health insurance is great. But as a system is so
horridly broken that it slows stuff down.

Also, for anyone reading, getting into Vet school doesn't mean that you're not
competitive enough for standard med school; quite the opposite. Getting into
vet school is damn hard.

~~~
jamesjguthrie
> Also, for anyone reading, getting into Vet school doesn't mean that you're
> not competitive enough for standard med school; quite the opposite. Getting
> into vet school is damn hard.

We were always taught in school that becoming an animal doctor requires better
qualifications/grades and is harder than becoming a human doctor - presumably
as there is more than 2 anatomies one must become an expert of.

~~~
13hours
Over here in South Africa, you actually go to med school for a year, and then
apply for veterinary medicine. So you have to be the best of the med school
applicants to get a place. Hardest course to get admission to of any.

------
javajosh
>The purpose of this brief chronicle is not to criticize the practice of
medicine.

Perhaps that wasn't his purpose, but that was the result. And it is a
scathing, justified criticism, especially coming from an experienced doctor.

My father died of lung cancer, and we went through similar experiences with
the health care system.

Before claiming that something is not a criticism, we have to ask whether or
not we can imagine a better outcome, ask what is getting in the way of that
outcome, and then make a change. This could be something small, like moving
patients around less, and with less resistance. (The purely _informational_
resistance in medical care is appalling, and this story shows it's real human
cost. Electronic patient records is not about assuaging "people who can't be
bothered to fill out forms".) Or it could be something huge, like
revolutionizing what late-stage cancer patients, and their families, expect,
and how they will be treated.

If you get late-stage cancer, the health insurance company should hand you
$100,000 in cash, a large supply of morphine that can be easily self-
administered, and a ticket to Hawaii. Huge bag of weed optional. The message
is clear: you're going to die soon, so make your peace with it. Talk to your
family.

My father fought until he fell unconscious, his personality ravaged by whole-
brain radiation and chemo, in complete denial. He never got a change to face
his sentence with courage, and he never really talked to me before he died.

So yes, the practice of medicine needs to be criticized.

~~~
jaggederest
I also tend to think that the word 'criticism' is linked with a negative
aspect that is undeserved.

Consider a glowing movie review that is thorough and thoughtful - certainly
criticism, but in no way negative.

------
VBprogrammer
I don't want to de-rail the conversation too much but this line brought home
to me one of the most sickening injustices of the civilised world - “When the
chemotherapy does not work, you will have to finish the job.”

No one should have to plead with their father to end their life early, this
should be a choice that anyone can make without fear of consequence to their
loved ones. This should be a well established and regulated part of terminal
illness.

------
noonespecial
In the thankfully few times I've had to endure hospitals, I've always been
struck by how unbelievable primitive what they're doing actually is. Sure
there are some genuine technical miracles (dialasys, pacemakers, etc) but I
always get the distinct impression that most of it is window dressing; a kind
of theatre to make it seem like they're more in control and much less helpless
than they really are.

~~~
justinph
I've come to the same conclusion. "Modern" medicine is just marginal
assistance to your body's own healing mechanisms.

~~~
majorlazer
I sometimes begin to think the same way, and then I remember about these:

[http://futurity.org/wp-content/uploads/2009/11/oscar-
pistori...](http://futurity.org/wp-content/uploads/2009/11/oscar-
pistorius2.jpg)

[http://static.ddmcdn.com/gif/artificial-heart-abiocor-
hand.j...](http://static.ddmcdn.com/gif/artificial-heart-abiocor-hand.jpg)

<https://www.23andme.com/>

<http://www.guadalupemed.com/images/xray.jpg>

<http://www.eyeclinicpc.com/lasik/lasik%20steps1.jpg>

[http://www.piersondental.com/Portals/22078/images/rootcanal%...](http://www.piersondental.com/Portals/22078/images/rootcanal%20\(1\).jpg)

[http://www.bismarckfamilydental.com/dental-implants-
bismarck...](http://www.bismarckfamilydental.com/dental-implants-bismarck-
north-dakota-nd/images/dentalimplants.jpg)

[http://www.nidcd.nih.gov/staticresources/health/images/ear_c...](http://www.nidcd.nih.gov/staticresources/health/images/ear_coch.jpg)

[http://emedtravel.files.wordpress.com/2012/04/brain-
mri-1.jp...](http://emedtravel.files.wordpress.com/2012/04/brain-mri-1.jpg)

And that's just off the top of my head. I think modern medicine has advanced a
lot more than we give it credit for. I know a lot of hackers tend to compare
other industries to the tech field, and expect everything to advance at a rate
like Moore's law, but that just isn't feasible in most fields.

------
citricsquid
He described her as a "previously healthy 50 year-old daughter" and then she
went from feeling weird to death in a month? I had no idea cancer could be so
aggressive, is it 1 in a million that it can be this aggressive (from showing
symptoms to death) or is this something common? This would explain why early
diagnosis is so emphasised, I still didn't understand how much it could
matter.

~~~
jaggederest
Cancer can absolutely be that aggressive, and many of your internal organs
don't have the sorts of pain and proprioception sensors we think of from our
experience interacting with the world through our skin.

It's possible to have twenty small tumors throughout your body, causing no
real issue, and then shortly thereafter they continue growing enough to
impinge nerves, blood vessels, airways... And you're suddenly diagnosed with
stage IV cancer.

------
brudgers
Stage four cancer? These are things I've learned from almost twenty years as a
"hospice spouse."

It's probably time to call hospice, not the "We can beat this oncologist."
It's probably time to write a living will and a sign the DNR. It's probably
time to decide how and where you want to die.

It's most assuredly time to decide how you want to live the rest of your life.

~~~
SoftwareMaven
Not always. I know a guy who has been living with stage four colon cancer for
four years who, recently, has seen his tumors contracting for the first time
ever.

So while I agree that you need to identify a point where you say, "Let me die
in peace", I don't think that point is always the day you've been told you
have stage 4 cancer. I'm not sure that the 20 days reference in the article is
really time to come to terms with that.

~~~
refurb
This is truly the problem with evidence based medicine. You can say how a
given treatment will impact a population (i.e. 1 out of 100 patients with
stage 4 colon cancer will survive past 6 months) and say it's not worth it,
but when you're talking to a single patient, you don't know what the outcome
will be. Maybe the treatment will be in vain or maybe he or she will be the
one patient that goes into complete remission.

What do you do then?

------
nnq
Not to be insensitive (I've had a few encounters with cancer myself, from both
the p.o.v. of a healthcare professional and from that of a relative/friend of
a patient), but WHY is this on the front page of HN?! The story is
(unfortunately) very typical and repeats time and time again in all parts of
the world... but this type of description really brings no new information to
"the anti-cancer game"... I know it touches everybody's emotions and stuff,
but is this really the place to have these conversations?

------
lostlogin
Your point number one occurred in New Zealand too. And the US is pressuring
the NZ government to abandon its very successful drug purchasing agency as
part of a free trade agreement. Having one agency purchase drugs for 4 million
people creates a fair bit of bargaining power, which US companies do not like.

------
tokenadult
Steven D. Levitt's father Michael Levitt

<http://www.med.umn.edu/gi/faculty/vamc/home.html>

<http://www.mayoclinic.org/news2009-rst/5207.html>

is a medical doctor and academic researcher in medicine at the University of
Minnesota. I used to file his grant applications into the office file drawers
as a duty of my part-time job while pursuing my undergraduate degree. Michael
Levitt is perhaps the world's leading authority on intestinal gas and still
has an active research program in diseases of the human bowel. He indeed has
seen many patients at a research hospital over the years, the same hospital
where my mother worked as a nurse for most of her career.

Dr. Levitt writes in the submitted article, "Overnight admission to the
hospital is recommended for 'observation' and rest prior to the trip home.
Fifty years of experience have taught me that admission to an academic
hospital is not restful. I have stopped counting the patients who want to be
discharged to get some rest." I have an immediate family member who was given
excellent care at the same academic hospital Dr. Levitt knows so well. My
relative is in excellent health now decades after that treatment. But indeed,
even with best care, the patient experience at a research hospital is not
restful, as world experts on the patient's case vie with medical students and
a variety of other health science trainees and practitioners to learn from the
patient. When a case is puzzling, as was the case of my relative, research-
oriented practitioners are curious about how to understand the case, trying to
find established, verified practice to help the patient, and otherwise working
"empirically" (an ominous word--to me--used by my relative's main doctor to
describe a procedure he attempted when he wasn't sure what to do next) to do
whatever they can to help.

As the father of a daughter, I can hardly imagine a rougher kind of news to
hear. Another immediate relative lost a fiancee to cancer years ago, and that
relative's memories of that time are full of frustration. The various kinds of
cancer are still so varied--as mentioned in the article--that there is
essentially NIL prospect of ever having a general treatment that will be an
effective first-line treatment for most forms of cancer. Instead, there will
continue to be surgical treatment for come cancers, a growing variety of
chemotherapies for a variety of cancers, in the best luck genome-matched to
vulnerable cancer cell strains, and radiation treatment for other cancers.

Ultimately, though, we will all have to learn to die better,

[http://zocalopublicsquare.org/thepublicsquare/2011/11/30/how...](http://zocalopublicsquare.org/thepublicsquare/2011/11/30/how-
doctors-die/read/nexus/)

because we will all eventually die of something. Meanwhile, if you are a
parent, this submission is a reminder to cherish your children while they are
here, and if you are a medical researcher, as Michael Levitt is, this is a
reminder to continue to strive for better understanding of health and disease,
while remembering the patient experience as new tests and treatments are
devised.

------
philwelch
My father spent much of his last year of life in hospitals. It was a
frustrating experience as well.

As far as the expenses went, he had Medicare in addition to supplemental
insurance as a retired Marine. So he paid nothing out of pocket. I can
definitely understand how this would add to the frustration of the experience.

A huge problem is that no one is actually in charge of a patient's treatment.
The individual doctors were quite good, with maybe one or two exceptions, but
there was never enough evidence of actual coordination between them for me to
feel very confident. I saw him on a daily basis, but much of my time was spent
staying on top of what half a dozen doctors and nurses were doing or planning
to do at any given time and keeping everything coordinated. I worry about
people who end up in the hospital without anyone else around to watch over
them.

Hospitalization can be a very frustrating and disorienting experience,
especially for older patients. The thing about hospitalization is that it's
essentially a form of captivity. You could write a good psychological horror
story that took place in a hospital, and it wouldn't be too far from reality.

~~~
Spooky23
I hate to say it, but hospitals need medical project managers.

My wife had some minor complications after a C-Section. We must have recited
our name, address, insurance provider, drug allergies, first pet's name, etc
about 250 times during the 8 day stay.

The older nurses rocked. The attending physician was someone we know well and
rocked.

Everyone else, from resident down to tech were not to be trusted. An
incompetent tech burned my wife's arm by putting a blood pressure cuff wet
with bleach. A resident waited until I went to grab breakfast to try to
pressure her into a procedure that she didn't want.

~~~
wisty
> I hate to say it, but hospitals need medical project managers.

They are called GPs, or internal physicians. Dr Cox (Scrubs) is an example.
The new name is Hospitalist, I think (actually, there's a push to have this as
a distinct specialty, so experienced non-specialists have a better development
path). If you didn't have a doctor competently managing your case, it wasn't
because no-one was responsible, but the doctor who should have been managing
the case wasn't.

~~~
Spooky23
Physicians are always at arm's length. Nurses rule the roost in the hospital
-- within each unit, there is a senior RN who is really the person managing
your care.

The problem is, nowadays you often move from unit to unit -- the MRI machine
or w/e is an enterprise resource. So when you move from Labor & Delivery to
Post-Partum, or from the ER to Imaging, etc, there needs to be some sort of
liason/hand-off process between two qualified individuals. Right now that's
done via clipboard and a $9/hr orderly.

------
VMG
Very sad, very scary.

What is the cost-benefit ratio for a routine MRI scan every six months?

~~~
mdonahoe
This.

This is the cure for cancer we need: affordable routine scans.

Though more scans means more results for doctors to analyze. Hopefully
algorithms can make that part cheaper too.

~~~
tisme
No.

Affordable routine scans will result in massive overloading of the health
system with unnecessary procedures, and the complications arising from those
procedures will kill more people than would have died otherwise from whatever
shows up on those scans.

There is no such thing as an intervention without risk, and that starts with
the risks associated with general anaesthesia.

Scanning is one thing, interpreting a scan and deciding when and where to
intervene is something that does not scale well at our current level of
technology. Basically it needs a human to sit down and spend time analysing
the scan to make sure that what is there warrants intervention. So even if the
scan costs would drop to 0 you'd still have the component of the
interpretation to deal with.

The end result of overloading the system like this is that those with symptoms
that need care are less likely to receive it or receive it timely, and that
those that didn't need the care will suffer from complications.

Knowing when to scan and when not to scan is a crucial ingredient in giving
good care.

~~~
mdonahoe
Ok. What if no one looks at the scans?

What if I get scanned every month and no one looks at them until I start
showing symptoms?

My aunt got breast cancer recently. She got mammograms every year but the
doctors never saw anything. Finally there was a mass discovered, and a when
they went back to look at the old images, they could see it growing.

------
jostmey
An awesome book titled "The lives of a cell" by "Thomas Lewis" delved into the
problems of Medicine (among other things) in the later 70s. He was amazingly
prescient about the problems that Medicine faces today. He also offered some
wonderful solutions for fixing Medicine.

~~~
aaronharnly
Just to note, I think you mean Lewis Thomas, namesake of Princeton's Lewis
Thomas Laboratory.

------
jeffehobbs
Heartbreaking. I hope for a cure for cancer in our lifetimes.

~~~
sciurus
There will never be a cure for cancer. There will be cures for cancers.

~~~
ams6110
I would even say there will never be cures for cancers. There will be
treatments.

------
akg_67
Very sad and heart-breaking. While reading the story, I couldn't stop
imagining myself in his daughter's shoes and wondering "what would I do if I
was in her place?"

Would I struggle and suffer in the hopes of living a few months longer or
accept the fate and go in peace sooner. This reminded me of discussion with my
wife during will preparation about how long should I be kept alive before plug
is pulled.

------
newbie12
We are all working on the wrong things. How can society not be spending far
greater percentages of GDP on health care research? Yet the medical
establishment, supported by Congress, operates as a guild that keeps
people/innovation out, and the system wastes billions of dollars a year on
futile treatments in the last year late in life, instead of finding cures.

------
sireat
Selfish question here: can one actually screen reliably for most cancers from
age 40 to say 60 and actually do something about it?

That is say, do as complete as possible cancer screening every 3 months?

The worst seem to be the ones like pancreatic cancer, you have a very little
chance of catching it before it has spread.

I just want to see my daughters grow up that is all.

------
platz
I suffered a mini-panic-attack halfway through reading this, and had put my
head on the floor until the nausea passed.

------
gbeeson
Great read and for myself, someone who is not part of the medical community
though who is a father of a daughter, I can imagine the professional and
personal frustration that must have been felt. Thanks for the write up - could
not have been easy (even clinically) to put together.

------
fabiandesimone
Oh wow, this brought back some painful memories. My mom died of lung cancer 3
years ago (in a third world country)

I can't begin to tell you the things my family and me had to put up with.

------
velar
Effective treatment against cancer can be found outside the USA, not inside.
Eg: See
[http://www.lef.org/magazine/mag2012/nov2012_Innovative_Laser...](http://www.lef.org/magazine/mag2012/nov2012_Innovative_Laser_Therapy_01.htm)

------
maskedinvader
very touching and heartbreaking read..

------
johnx123-up
FWIW, my Indian friend says there's a medicine for cancer in South India with
Siddha. When I searched <http://en.wikipedia.org/wiki/Siddha_medicine> some
editors seem to have removed references to cancer from the article.

~~~
confluence
Yeah, because it's complete bullshit. Leave your pseudoscience clap trap away
from vulnerable people.

~~~
johnx123-up
I'll be happy to get more details on your reasoning. Do you have any bad
experience with it?

~~~
matthewowen
We know how cancers work to a pretty good level of detail. This means that it
can be fairly straightforward to classify many treatments as ineffective.

The other point is that cancer research is incredibly well funded by non-
partisan, non-commerical organisations (charities like Cancer Research UK
don't have an active stake in one approach over another). The notion that
these alternative remedies are being wilfully ignored doesn't stand up to any
remotely rigorous evaluation.

~~~
johnx123-up
> We know how cancers work to a pretty good level of detail.

IIRC, Steve Jobs was survived with alternative medicine for sometime than
surgery. So, I'm more interested to know any research conducted on alternative
medicines (to prove that they're wrong and ineffective). As it seems to work
for Indians this can better be tried like yoga

------
thrwaway1
This reminds me of the story of Dr. Ben Carson, a famous neurosurgeon who also
teaches oncology at John Hopkins. In 2002, he was diagnosed with prostate
cancer and successfully underwent traditional treatment.

However, Dr. Carson has stated publicly, both at conferences and on radio
interviews, that he believes he was largely cured by a controversial holistic
treatment called glyconutrients.

However, due to legal liabilities on the company's part, they banned all
testimonials and would threaten lawsuits to anyone who publicized this
information.

20/20 did a story on glyconutrients, disproving them based on glycobiologist
Dr. Ronald Schnaar from John Hopkins School of Medicine. Dr. Schnaar said,
"All of the sugar building blocks that we need in our body are made from the
most common foods we eat."

Contrary to this, Dr. Carson says we do not get these simple sugars from our
natural diet and said that his family, his employees and everyone he knows
uses glyconutrients with great results.

He said he considered not having traditional surgery but he didn't want others
mistakenly following his path to the detriment of their health.

Dr. Carson is not a glycobiologist. However, he is the Director of Pediatric
Neurosurgery at John Hopkins and a colleague of Dr. Schanaar. He's been
awarded the Presidential Medal of Freedom and had a film made about his life
story starring Cuba Gooding Jr.

But none of this information about his alternative cancer treatment is widely
known. Not one word on his Wikipedia page
(<http://en.wikipedia.org/wiki/Ben_Carson>) nor on the page about
glyconutrients.

It's disappointing there's no unbiased scientific research to explain what is
factually true. And it's unbelievable that such a high profile cancer survivor
could make these claims with virtually no one knowing.

Dr. Carson's speech <http://www.youtube.com/watch?v=ROzftYwJihg>

Dr. Carson's Story in the Dallas Weekly
[http://glyconutrientsarevital.blogspot.com/2006/08/dr-ben-
ca...](http://glyconutrientsarevital.blogspot.com/2006/08/dr-ben-carson-
glyconutrients.html)

Related Local News story on Baby Hadley
<http://www.youtube.com/watch?v=oK3U4mrqslk>

~~~
jaggederest
Let me point out the logical flaws in your post:

1\. Post hoc, ergo propter hoc - "he tried a controversial holistic treatment,
therefore he was cured" - My father was cured of prostate cancer just after he
quit smoking. Therefore I advocate quitting smoking as a cure for prostate
cancer.

2\. Fallacy of the single cause - "he believes he was largely cured by" - it's
unlikely that any single cause is responsible for something as large as being
successfully treated for cancer. Many prostate cancers are simply left
untreated with no harm.

3\. Hasty generalization - "his family, his employees, and everyone he knows"
- We can know nothing about the effect on the general population from
anecdotal evidence.

4\. Red herring, subtype appeal to authority - "However, he is the Director of
Pediatric Neurosurgery" - entirely irrelevant to prostate cancer treatment.

5\. Ad populum, in reverse - "None of this information [...] is widely known"
- whether it is widely known or not, it should stand up to scrutiny on it's
own.

And of course, my post itself suffers from 'argument from fallacy' - something
need not be false just because it is argued for in a fallacious manner.

That said, you can roll your quackery up and take it with you.

~~~
lotsofpulp
Excellent post, saved me the trouble of pointing all of those out!

