
His Doctors Were Stumped, Then He Took Over - mhb
https://www.nytimes.com/2017/02/04/business/his-doctors-were-stumped-then-he-took-over.html
======
tominous
I wrote my thoughts about how to work with your doctor here:

[https://news.ycombinator.com/item?id=12266170](https://news.ycombinator.com/item?id=12266170)

My wife has since passed away unfortunately. I really need to write this all
up at some point to close it off.

Anyway, I've come to understand that most doctors look at the scientific
evidence _indirectly_.

They often have an excellent ability to follow a decision tree and work
through the differential diagnosis. However, that decision tree is based on
(a) observations and (b) what other doctors have tried. There's no attempt to
look at the underlying mechanism to find novel solutions. So new basic
research (e.g. on mTOR and VEGF as in the article) will have no effect on
practice until it is proven in trials or until enough mavericks (like the
patient in the article) have created a precedent.

It does make sense in terms of avoiding cost and harm -- biology is very
complicated -- but I do think this conservative bias goes too far in cases
where the treatments have been already proven safe in other contexts, or in
cases where the alternative is already bleak.

~~~
Obi_Juan_Kenobi
I think that many people don't understand that clinicians are not
investigators and generally do not have any research experience, despite
having the title of 'doctor' (a fairly recent appellation outside of
academia).

They are, as you say, trained to arrive at a diagnosis to the best of their
ability and provide treatment. A challenging diagnosis, however, is a fully-
fledged scientific investigation. This is where clinical researchers (MD PhD)
can really shine, but it's hard to apply this to individuals; the typical
direction follows funding first, which may not be of much help to any given
patient. At any rate, this approach ultimately does not scale.

My hope is that new tools (accessible databases, better data collection, and a
dash of ML) will get more patients in front of the right pair of eyes more
often. The situation with life-threatening diseases is bad enough, but there
are also huge opportunities for improved quality of life from vague, nagging,
or intermittent illness diagnosis.

~~~
Omniusaspirer
To contrast your first sentence, nearly every physician younger than 50 most
likely has some experience with research and a good percentage of those have
been published prior to even being accepted to medical school. Beyond that,
the numbers I'm finding state ~1.5% of current MDs primarily spend their days
doing research.

I think the issue here is not that physicians "are not investigators" but
more-so that the financial realities are in no way aligned with dedicating
massive amounts of time to any given patient. Physicians generally bill around
$300/hour in cash only clinics, so I think it's a poor allocation of resources
to expect them to dedicate 100s of hours to a more obscure patient. PhDs are
dirt cheap, better to hand the odd case study off to them and let those with
clinical skills focus on being clinicians to the more typical patient.

~~~
toomuchtodo
Can we replace physicians yet with expert systems? $300/hr seems egregious for
a decision tree expert system.

~~~
jt2190
300 USD per hour pays the medical assistants, support staff, rent,
electricity, taxes, etc. The number that employee physicians (a much more
typical case than private cash-only practices) gross is closer to USD 95 per
hour, assuming a 40 hour workweek and an annual salary of 200 000 USD. (Few
physicians work only 40 hours per week, so the real number is much, much
lower.)

~~~
toomuchtodo
Just give me a Watson iPhone app that kicks me out to a professional if it
can't confidently diagnose.

I am appreciative when medical staff is required. But when it's not, ruthless
automation must be out into place to contain costs.

------
karcass
My wife had a tumor on her pituitary gland. Four different MDs came up empty
on her symptoms. The fourth doctor ran the right endocrine system test, but
was only able to conclude "it's not [her] thyroid."

It took me about thirty minutes with the test results and Google to make the
diagnosis. I was lucky, in that I had a colleague who was acquainted with the
head of Stanford endocrinology, who confirmed the diagnosis and found us a
good surgeon. Wife is fine today.

It's anecdotal, but my experience with the medical system is that nearly all
doctors see the same handful of things day in and day out, and are not trained
to see beyond their expertise.

~~~
ClassyJacket
That's awful. I, too, have turned to Google M.D. before.

I went to five different doctors for throat discomfort and chest pain. The
first four didn't see anything in my mouth, so told me I can't be having any
symptoms if they don't see anything after a two second glance at my mouth and
refused to do anything further.

I was in enough discomfort I lost sleep, and after a few months of these
symptoms I couldn't stop thinking the worst.

I had to practically threaten the last doctor to do an infection test which
turned out a positive result for mono. Not my imagination after all.

As for my chest, I described my symptoms to my mother, who almost immediately
suggested acid reflux. Sure enough, as later confirmed by a throat specialist,
that's what it was, and the medication fixed my symptoms pretty much the next
day.

If you're a young male, doctors don't want anything to do with you. I usually
Google things and make my own decisions now. I've started to view GPs as
nothing but an unfortunate barrier on my way to a useful prescription or
specialist.

~~~
newprint
Mind you asking,but did you have a cough as well ? When I turned 31, I started
to have a cough, soon I found-out that I had acid-reflux.

~~~
kchoudhu
Especially in winter, after you get sick once with a cough? Doctor took one
look at me, and told me to take a Zantac twice a day for three days.

Cough was gone. It was miraculous!

------
carbocation
In this thread there is a fair amount of "Google, MD" talk, so I'll add my own
story.

In medical school we were tasked with identifying an unusual cause of a baby's
fussiness after eating.

For the first time, everyone got the right answer. My professor wasn't sure
whether to be proud of us for all doing deep reading into rare disease or to
be angry that we had collaborated.

But in fact, everyone had just popped the unusual findings into Google, which
spat back the diagnosis of ALCAPA (anomalous left coronary artery from the
pulmonary artery).

Your doctor's brain is not the world's best device for information retrieval.

~~~
shiven
_Your doctor 's brain is not the world's best device for information
retrieval._

As a former doctor, agree 100%. Still the medical profession seems to look
down upon "information aid"-like technology. Beyond accurate physical
examination and correctly entering the patient's history into a well-trained
pattern-matching AI engine, doctors really don't need to be doing much in a
first-world country. They need to be re-inserted into the workflow only if the
treatment recommended by the automated/AI approach does not help.

The brutal truth is that the vast majority of doctors, even specialists, will
be incapable of correctly diagnosing and treating the very uncommon, rare and
extremely rare medical conditions.

"The eyes see what the mind thinks" \- is absolutely applicable to 99% of
doctors, who, for various reasons, would be more concerned with helping the
95% of their patients with obvious/common/easily-identifiable conditions that
respond to their first or at most second line of treatment, than bother
spending an inordinate amount of time, effort and energy on the remaining 5%
who's death/suffering may well be considered the "cost of doing business".
Bitter truth, from experience.

~~~
ladytron
Yes, I believe this is what happened to my friend with the rare disease of
late pregnancy.

Even though she had a diagnosis, she was on a regular maternity ward.

None of the nurses / Drs. Seemed to really want to learn about her condition
or make sure she was being treated correctly for her disease. She "didn't
fit". Her death or the baby's death would have been "the cost of doing
business".

Her doctor said 2 or 3 babies died of Choleostasis every YEAR, yet the nurses
and doctors on the maternity ward were quite clueless.

------
tomohawk
I know many doctors are caring and well trained, but they work in systems that
often prevent them from seeing what they should or taking actions that they
would like to take.

You really need to take charge of your treatment. It can mean the difference
between life or death, or the difference between being a victim or living a
normal life.

In my own personal experience, I've unraveled medical mysteries affecting my
health that have stumped some pretty good docs, and in one case, a super
specialist. On the other hand, I've been greatly helped by docs.

All I can say is don't give up just because docs say they don't know or don't
seem to be making you better.

~~~
Nomentatus
I agree. Chances are your "specialist" has to cover an immense amount of
ground. Spend a couple weeks, or maybe a couple of months, grinding at
pubmed.com (with a good online medical dictionary at hand) and you can
certainly outread him or her on a narrow topic that affects you if it's
unusual, and have a lot of knowledge at hand he or she doesn't, if you grind
at it. Just be humble about all the context for that knowledge that you don't
simply don't have, and don't imply they should know everything. There isn't
time enough in the day for them to read everything useful to them clinically.
Watson and similar A.I. helpers are really needed, and coming.

Sadly, a lot of doctors just make shit up out of thin air to help gloss over
what they can't be expected to read, which is probably a good time to consider
switching doctors.

------
sametmax
This is a problem with our notion of "expertise".

We rely too much on them and delegate everything in our society to them.

But first, there are varying degree of quality among experts. The delta is
huge.

Secondly, they are only human, and make mistake all the time.

Thirdly, they have an agenda too. It may not be to help you the best they can,
but to make a living with the least problem possible.

Now another problem is that a lot of people reject expertise in a such a way
that any honest attempt will look terrible after them. The typical anti-vaxer
speech has no credibility at all, preventing any sane debate on vaccines. The
pro consider it "not even a question". But everybody should always raise
questions about any medical act before deciding to got for it or not. This
include vaccines, band aids, whatever.

The notion or "expert" also tends to remove responsibility from the people.
But your health is YOUR concern, you choose take great responsibility in it.

In the end, we should all learn to not ask experts to solve our problems, but
to use them so we can solve our problems.

------
leesalminen
A couple years back I started seeing a "hippy" doctor in my town (Boulder).

He's a licensed MD and doesn't accept insurance; cash only at $300 an hour.
Totally worth every penny.

He actually listens, and is willing to get creative with things.

If you're not satisfied with your PC provider, find a cash only doctor. I
think you'll find they care more.

~~~
arkades
IME, it's not that they care more - it's that they have the time to pause and
think.

A buddy of mine is a world-renowned specialist, but in a niche too small to
allow him to go all-cash. He gets a patient a couple of years back who came
with literally _boxes_ of medical records, years of failed doctor visits, and
in excess of 100k$ in worth of tests and interventions. He spent two days
poring over her records, and got her the diagnosis no one else did - got her
on the right tx, and gave her her life back.

Insurance reimbursed him precisely the same (<$300 gross) that it would have
for an ordinary visit of ordinary length, more or less. (Fine, he billed a
level 5 eval and management instead of a level 3; difference of nearly
peanuts). How often do you think he sets aside the time to pause and really
think deeply on a problem?

If he was charging cash and had the chance to charge people for his time and
expertise, knowing him, he'd be happy to do nothing but spend days at a time
tackling the hardest problems available.

~~~
csydas
>He spent two days poring over her records, and got her the diagnosis no one
else did - got her on the right tx, and gave her her life back.

Well, quite frankly, this is part of the problem and it's a social adjustment
we need to make as well. We see this with virtually any position where you
need to diagnose; 99% of the time it's a simple issue from column A, but
occasionally you get a symptom that looks like the issue is from column A but
it's actually in column B. In technology, we fly through column A solutions
because they're cheap, fast to test, and often done without cost, and column B
solutions are more drastic, more expensive, and sometimes more dangerous.

The difficulty in translating this to medicine is that a lot of times column B
solutions are dangerous to the point of no return. Combine this with the fact
that there really aren't rollbacks when it comes to health, you have actual
life or death decisions to be made.

Taking the time to review the whole history can really help with this and to
get a full timeline of events, but even then it's hard to get past the column
A/B thinking. I've been dealing with a very annoying sinus issue for 3 years
across about 8 doctors from across the planet (due to moving because of work).
Every time I've started anew with a doctor, they go down the exact same
treatment list as the previous, and when they're told that I've done that
already, they just want a repeat. I understand this thought process (what if
I'm lying, what if they bungled the test, what if something changed, etc), but
I've done this 8 times now. I've been told each time it's an allergy, but
every time we see an allergist, they can't get me to react to any allergen
they have available to test for and are left scratching their heads as to why
antihistamines don't have any effect. They also can't find a common cause that
fits with allergies, but in their minds, it just looks so much like allergies
they're not sure what else to test. I secretly suspect that if I could just
get a doctor to spend more than 20 minutes in a consult to review the case and
what I've done so far we could try something else, but regardless of where
I've been, I just can't get a doctor to look too much longer. They either
don't believe the symptoms as I report them, don't believe the steps I've
already tried to resolve it, or they just don't have the time to care past the
initial look at the symptoms.

I appreciate the difficulty in having to do this: when column A fails, it
looks great if you pick the right item from column B, but it also gets really
expensive while you shop around to find the right item from column B. They
make it look so easy on House, but no place is willing to really do that sort
of patient history and testing, and if the condition is not life threatening,
then it's just a "deal with it" situation, we're gonna keep throwing the easy
stuff at the symptoms until the person stops complaining.

I don't know what the problem is or how to embolden doctors to take a little
more time, but some change would be nice. Though, hearing stories from my
mother who has been a nurse for 20+ years, sometimes emboldened doctors look
for problems that aren't there so they can look like heroes.

It's a crazy thing with health and unfortunately the value of such emboldened
decisions tends to be a very ad-hoc assessment. If it worked well, it was a
gutsy but necessary maneuver. If it did nothing, it was reckless. If it caused
harm, it was malpractice.

------
fian
The approach he took to analysing his condition reminds me of bug fixes
through logging and debugging.

He took and analysed blood samples over many months -> logging.

When he identified something in the logs that looked odd, he took a drug that
should affect that behaviour -> debugging.

~~~
aisofteng
It's the scientific process, actually.

~~~
endgame
No, you don't understand. There was NOTHING before the hackers came and
disrupted everything. We were left to poke in the dirt with sticks.

/s

------
niceperson
Everyone's saying that there is a lack of doctors that are ready to think
outside the reular prescriptions and diseases, but is this really a fault of
the doctors or is this something that has been enforced by the system? I think
that giving doctors equal pay irrespective ofthe work they do, or the patients
they treat is very stupid and dangerous. It eradicates a standard of value.

[https://campus.aynrand.org/works/1985/01/01/medicine-the-
dea...](https://campus.aynrand.org/works/1985/01/01/medicine-the-death-of-a-
profession)

~~~
puzzle
The Mayo Clinic is one of the best hospitals on the planet and is even
mentioned in the article, since they have diagnostic labs that specialize in
so-called esoteric testing. Their doctors are paid a salary, which is market-
based, reaches a plateau after a number of years you have the same title and
is not tied to the number of patients you see. Not only there's no incentive
for them to cram as many patients in a day as possible, but they call each
other consultants because they will bring in colleagues when there's a tough
case that warrants a second or third opinion.

~~~
arkades
In fairness, it's the Mayo Clinic's enormous prestige that acts as a
supplemental non-cash reimbursement to the physicians that practice there.
It's, more generally, a trait of hospital systems to substitute reimbursing
physicians with culture rather than cash. They get a flat salary, and in some
places a volume-based bonus. In places where the culture isn't earnest,
insufficiently prestigious, or both, this cultural currency falls flat and
physicians (and other staff) absolutely start to suck more.

Outside of hospitals (hospitals and physicians are _not_ equivalent; think
Walmart and your local mom-and-pop shop, if you want a better idea of the
relationship between the two), physicians are reimbursed directly by volume.
Not quality, though - just volume.

------
stretchwithme
I found this discussion of medical reversal very interesting. Particularly,
how proxies for things are often used. Treating a symptom sometimes instead of
a root cause.

I think we also have that same problem in economics. People consume more when
times are good, so let's get them to consume more and times will be good.

[http://www.econtalk.org/archives/2016/02/adam_cifu_on_en.htm...](http://www.econtalk.org/archives/2016/02/adam_cifu_on_en.html)

------
jaboutboul
TL;DR Dad got a condition precipitated by anesthesia from surgery. Lots of
docs couldn't figure it out. I solved it using Google in less than 5 minutes.

It's amazing how many doctors operate in "tunnel vision." A few years back
after a routine procedure that put him under, my dad awoke to non stop
hiccups. At first the anesthesiologist said it was a temporary side effect of
the anesthesia and brushed it off. Well the hiccups continued for 2 freaking
weeks non stop.

As you can imagine this is a) a major disruption to a normal life (he couldn't
sleep, couldn't eat, couldn't do anything for two weeks) and b) annoying as
hell to everyone around you.

We went his GP multiples times, consulted the same idiot anesthesiologist and
went to the emergency room 4 times over those two weeks and the reactions
varied. Everything from the doctor literally laughing out loud seeing a middle
age man in agony over non stop hiccups to another doctor prescribing pineapple
juice. Yup, pineapple juice. Apparently some people use that to stop hiccups.

After the third trip, with no seeming progress and my dad basically asking us
to kill him so that he can get some normal rest, I decided to start googling,
which I should have done when this all started. I found a interesting research
paper from Cal Berkeley which described a similar case after surgery, which
described the mechanism that actually causes hiccups (its a spasm of the
diaphragm cause by the vagal nerve) and how they were able to treat it.

We decided to go to a more than decent hospital in the big city armed with
this paper in hand. In to the emergency room, after the standard tests they
did at the other places and the scopes and all that, the doctor goes yeah we
have no idea what's going on let me look up some stuff and I'll be right back.

He went to some computer terminal and started clacking away while I was
watching over his shoulder unbeknownst to him. After about 3 minutes of
searching some medical portal the hospital uses and seeing his head shake
repeatedly I walked over, tapped him on the shoulder and said, hey I think I
might have found something helpful on my ipad and handed it to him.

He read the paper in 2 minutes flat said "oh my god," called his supervisor
(he was the attending physician, not a resident) they both agreed to call this
doctor at Cal and after a 5 minute phone call wrote a script for a drug called
Baclofen which treats muscle spams. 2 of the worst weeks of my Dad and our
lives' came to an end within 15 minutes.

I was glad this place being a teaching hospital, was open minded enough to
consider what they were presented

The hospital thought I was some kind of Doogie Howser and the head of the ER
goes to me "You should really consider becoming a doctor." I replied with "Why
would I ever do something silly like that. I'm an engineer." The doctor was
both amused and not amused at the same time.

Just goes to show you, how narrow their field of vision is. Most doctors get
trained a certain way with certain tools and for the rest of their career that
is all they know.

~~~
kwhitefoot
Just goes to show you, how narrow their field of vision is. Most xs get
trained a certain way with certain tools and for the rest of their career that
is all they know.

Applies to most of us whatever the value of x.

~~~
jaboutboul
I'd like to think that's not true. At least not more myself. My parents always
stressed scientific thinking in problem solving.

As engineers and scientists I would like to hope that most of us on HN are
constantly looking for new tools and novel approaches. There will always be
new tools and techniques for development, new frameworks, more optimized
algorithms, better debugging, etc. We should all always be looking to
integrate, update and enhance our toolset and skills and inspiration comes
from many places, not just technology. It's a part of being the best at what
you do--which for us happens to be critical thinking and problem solving.

At least I try to do this constantly myself.

Maybe that's part of the problem. Most people are trained to be whatever they
are without a real focus on true problem solving. They're given one framework
to solve the issues of their field and told to run with it.

That's a big part of this doctors story too, that he was willing to enhance
the state of his art by thinking outside the box, pulling together an
uncoordinated, distributed team, sharing information and research and opening
the channels of communication.

Hmmm, sounds familiar...

~~~
animal531
I think historically engineers and developers have been given the tools with
which to experiment. It's easy to break down a problem in our environments, as
compared to a human body where you not only can't experiment freely, but where
it is difficult to isolate cause and effect.

------
allpratik
This is a remarkable story, atleast for me. It highlights the importance to
find patterns in data and then map those patterns to something X. Agreed it
takes time to do this and is exhausting as well but results are far more
amazing.

Same thing happened with recent tremors related non-invasive surgery at
Imperial college London. Data played extremely crucial part to localize it.
([http://www.bbc.com/news/health-38157770](http://www.bbc.com/news/health-38157770))

Really excited to envision a purely data-driven healthcare system. It will
have a significant impact on our understanding of different diseases.

Anyone knows where to find such anonymous health/disease related data for
further research?

------
oska
This is just speculation on my part but I wonder if he overstressed his system
by being such a ‘beast’ prior to getting sick. The photo of him doing a
football drill does not look so healthy to me. His body looks over-developed.

I don't mean any disrespect by this comment. Clearly he is an extraordinary
individual.

------
eptcyka
He was browsing through hackernews, and you will never believe what headline
really pissed him off.

------
dkokelley
Can we get the title changed? The current title does not provide me with
enough information to know what the article is about. How about, "Doctor
diagnosed with rare Castleman disease leads charge for cure"?

~~~
dang
I hear you, but not all titles on HN have to be self-explanatory. It's good
for readers to have to work a little sometimes.

~~~
jessriedel
How does this further the aims of HN?

~~~
sn9
By forcing people to respond to or otherwise discuss the _contents_ of the
article instead of the headline.

~~~
theoh
Actually it seems like dang was making a moralistic point that I'm not sure
about. Sometimes a suggestive, catchy but perhaps uninformative title is
linkbait (and should be replaced), but sometimes such a title is not "bait"
but instead something we just have to accept as given? Hmmm.

~~~
tomhoward
There's a difference between piquing curiosity and exploiting emotions. Of
course there's a grey area, and this story may be closer to the line than
usual, but wherever the line is, it's fair enough for dang to judge that this
title is on the right side of it.

Personally I don't see how the title misrepresents the content in the article,
or tricks anyone into reading something they'd be better off not to have read.

