NYTimes: Her Various Symptoms Seemed Unrelated. Then One Doctor Put It All Together.

Megan Golden mgolden at MISSION-CURE.ORG
Thu Feb 22 00:36:31 UTC 2018


Some observations about the NYT article from a first-time poster: I am not
a physician but rather the founder of a nonprofit called *Mission: Cure*
dedicated to using innovative financing based on patient outcomes to cure
disease. We are focusing initially on chronic pancreatitis (which my
brother is suffering from), which is frequently undiagnosed or
misdiagnosed. The diagnosis issues are exacerbated by the fact that most
physicians are taught that it is a disease of alcoholics, which research
has shown not to be true. I would love to get this group's input on
pancreatitis diagnosis at some point, but for this post I wanted to put in
my 2 cents on the Times article.

First, I wonder whether diagnosis is a specialty that should be done by
experts that specialize in problem-solving using the range of techniques
discussed on this listserv. In the article, Dr. May really wanted to and
tried to determine the diagnosis but it was a doctor who is really
passionate about diagnosis who "solved" the case. While we ideally want all
doctors to be good diagnosticians using effective methods, it seems like
the obstacles to achieving that are huge (barring some big systemic
changes).

Second, it strikes me that the discussion of how well the doctor did seems
to be independent of how the patient was feeling. This patient was
seriously ill and in pain for several years. There was a diagnosis to
explain her illness and (luckily) a therapy to treat it, she just needed
someone who had the motivation and the skills to put the evidence together
and do the problem solving. I am not blaming all of the doctors who saw her
since it was a rare disease and, as people have commented, hard to
diagnose. But wouldn't it be better to have a system where if a person is
sick to the point of being unable to participate in normal life, and there
is not a definitive diagnosis, a diagnostician is brought in right away
(when she presents to her local doctors, not the teaching hospital) to
figure it out? What would it take to incentivize that?

Thanks for including me in this excellent discussion.
Megan Golden





On Wed, Feb 21, 2018 at 1:50 PM, Elias Peter <pheski69 at gmail.com> wrote:

> I don’t know that my perspective does more than offer a way to visualize
> how context plays a role, in the primary care setting.   I found it useful,
> though, when teaching. It provided a way to reassure learners that a key
> lesson to learn was not that they needed to master ‘all of medicine’ but
> that they needed to recognize those rare instances where one had to be
> right, right now, and what to do in those rare instances. Beyond that,
> accuracy counts more than speed.
>
> About incentives.  I would take issue with my own statement that the
> consequences are small, unless qualified by saying the the external
> consequences are small. For me, and for the clinician mentors and
> colleagues I have learned from and admired, the incentive was always
> internal and personal rather than external and structural. The best
> clinicians I have known have been those who were driven to find the right
> answer, not those driven to check the right boxes or avoid litigation. I
> don’t know how to make that standard. It would seem that there are two
> parts. First, the selection process. Second, a system that focuses on
> internal rather than external rewards (reversing course in many ways) and
> is based on transparency and valuing honest self-scrutiny, admitting
> ignorance and error in order to learn from them. Culture, in other words.
>
> Peter
>
>
> On 2018.02.21, at 12:07 PM, Bob Latino <blatino at reliability.com> wrote:
>
> Thank you (as always) for your experience and well-reasoned reply.
>
> Seems to me that you have outlined a draft priority schedule for the
> diagnoses that actually result in the worst outcomes.  Is that a start to
> trying to break 'diagnosis error' cause category down into its manageable
> chunks and start to analyze what system's level factors contribute to such
> decisions?
>
> If the perceived consequences to the clinician are small, what is the
> incentive for t hem to take the time to try to be more accurate and timely
> in our diagnoses?
>
> Thanks again Peter
> Bob
>
> *Robert J. Latino, CEO*
> Reliability Center, Inc.
> 1.800.457.0645 <(800)%20457-0645>
> blatino at reliability.com
> www.reliability.com
> <image001.jpg>
> <https://www.linkedin.com/company/958495?trk=tyah&trkInfo=clickedVertical%3Acompany%2CclickedEntityId%3A958495%2Cidx%3A1-1-1%2CtarId%3A1464096807851%2Ctas%3Areliability%20center%2C%20inc.>
>
> *From:* Elias Peter [mailto:pheski69 at GMAIL.COM <pheski69 at GMAIL.COM>]
> *Sent:* Wednesday, February 21, 2018 1:32 PM
> *To:* IMPROVEDX at LIST.IMPROVEDIAGNOSIS.ORG
> *Subject:* Re: [IMPROVEDX] NYTimes: Her Various Symptoms Seemed
> Unrelated. Then One Doctor Put It All Together.
>
> I understood the question to be, “What are the consequences TO THE DOCTOR
> for not making an accurate diagnosis the first time?"
>
>
>    - Having to admit “I don’t know” and run the risk of feeling competent
>    or being considered incompetent but the patient.
>    - In a training setting (medical student, resident, fellow) there is
>    the risk of being criticized by supervisors.
>    - In a clinical setting, there is the risk of being criticized or
>    thought less of by colleagues, or harm to reputation.
>    - There is the concern about legal risk if negative consequences
>    result from the delay.
>
>
> Forty years as a primary care clinician led me to see this issue in
> somewhat separable clumps:
>
>
>    - The infinitesimally small number of cases where there were dire
>    medical consequences for not knowing what it is and what to do, right now,
>    this instant, in real time. OB is the classic example, with things like
>    unsuspected breech or shoulder dystocia during delivery, or an obtunded
>    newborn.
>    - The larger but still quite small number of cases where one is
>    unlikely to get a second try but seconds and minutes do not count.
>    - The big chunk where first-pass diagnosis makes you feel good but
>    doesn’t change the outcome. (A case of cutaneous anthrax is one I remember.)
>    - The very large chunk (I’d guesstimate 60% or more) where an accurate
>    diagnosis cannot be made on the first pass without doing a large number of
>    inappropriate tests - where time and the natural history are the best
>    diagnostic tools. This applies to much of rheumatology, many non-specific
>    but common symptoms: fatigue, pruritus, constipation, nausea, weight loss,
>    insomnia, dizziness, various mood and behavior disorders, pain without
>    findings on exam.
>
>
> But, in response to the question posed by Bob Latino, I think the
> consequences to the clinician are generally small. (This does not apply to
> all areas of medicine, of course.)
>
> Peter
>
> On 2018.02.21, at 9:54 AM, Grubenhoff, Joe <Joe.Grubenhoff at CHILDRENSCOLOR
> ADO.ORG> wrote:
>
> I think that is condition-specific. If it’s sepsis or impending cardiac
> arrest from an OD, then the negative consequence is massive. If it’s
> pediatric lupus a few weeks to months is probably not catastrophic for the
> patient. The potential negative consequence to trying always be accurate on
> the first patient encounter is over-testing, unnecessary testing and
> astronomically skyrocketing cost.
>
> Case in point: Mother brings in her well-appearing toddler with fever for
> 2-3 hours. No other symptoms. The possible causes are effectively (not
> literally) infinite and I can’t test for all of them. I can order a CBC
> which tells me nothing of the source or nothing at all if normal. I can
> order blood cultures (knowing that the ratio of true infection to
> contaminant is around 1:5 to 1:7). I could shoot a CXR to assess for occult
> pneumonia, cath the child for urine culture, etc. etc. I can use a shotgun
> approach and be no closer to a diagnosis after a 3 hour ER stay but have
> exposed the patient to a number of harms (pain, radiation, dysuria,
> possibly introducing an infection).
>
> We have to balance the negative consequences of missing a dx with the
> negative consequences of searching for absolute certainty. And we have to
> explain the ambiguity to our patients. Lastly we need to help them
> understand that in many cases, time is a diagnostic test.
>
> *From:* Bob Latino [mailto:blatino at RELIABILITY.COM
> <blatino at RELIABILITY.COM>]
> *Sent:* Wednesday, February 21, 2018 9:43 AM
> *To:* IMPROVEDX at LIST.IMPROVEDIAGNOSIS.ORG
> *Subject:* Re: [IMPROVEDX] NYTimes: Her Various Symptoms Seemed
> Unrelated. Then One Doctor Put It All Together.
>
> Outsider question that may be obvious to you experts:
>
>
> What is the negative consequence to the doctor for not making an accurate
> diagnosis the first time?
> Sent from my iPhone
>
>
> On Feb 21, 2018, at 11:40 AM, Elias Peter <pheski69 at GMAIL.COM> wrote:
>
> Some years ago, I wrote a short blog piece about my approach to teaching
> FP residents to question both their diagnosis and their certainty:
>
> http://petereliasmd.com/node/10
>
>
> Peter Elias, MD
>
>
> On 2018.02.21, at 6:44 AM, Joe Graedon <jgraedon at GMAIL.COM> wrote:
>
> Bill,
>
> You are a very insightful mentor and teacher. The problem is that in our
> time-challenged environment “discordant data” are often ignored or
> overlooked. Please take time to read Larry Weed’s brilliant book, Medicine
> in Denial. You will quickly appreciate that Art has brought Dr. Weed’s
> vision to reality.
>
> On another note, we were thrilled to see that patient engagement is now a
> priority for ImproveDX. When patients and family members are considered
> equal players in the diagnostic process we could see real advances in what
> has been a challenging dilemma.
>
> Joe Graedon
>
> The People’s Pharmacy
> Sent from my iPad
>
>
> On Feb 19, 2018, at 12:14 PM, Follansbee, William <follansbeewp at UPMC.EDU>
> wrote:
>
> Art,
>
> I agree with your thoughtful comments. I would also add, however, that for
> a disease like cellulitis, which I agree is frequently over diagnosed and
> treated unnecessarily, the answer is not going to be in decision support
> tools. Clinicians are just not going to consult them for such a common
> diagnosis. It is also to teach them how to be a little more thoughtful and
> analytic in their bedside decision making.   We teach trainees to use small
> groups of common sense but not uncommonly overlooked questions at
> appropriate times in the diagnostic process in a systematic fashion. In
> this context, one question we emphasize that they should ask themselves
> when considering a diagnosis is, “is there any discordant data?” Cellulitis
> is rarely bilateral yet many patients admitted and treated for apparent
> cellulitis have red and swollen legs bilaterally, ie discordant findings.
> If their illness script for cellulitis includes bilateral disease, then
> that is a knowledge problem that also has to be addressed.
>
> Best,
> Bill
>
>
> William P. Follansbee, M.D., FACC, FACP, FASNC
> The Master Clinician Professor of Cardiovascular Medicine
> Director, The UPMC Clinical Center for Medical Decision Making
> Suite A429 UPMC Presbyterian
> 200 Lothrop Street
> <https://maps.google.com/?q=200+Lothrop+StreetPittsburgh,+PA+15213&entry=gmail&source=g>
> Pittsburgh, PA 15213
> <https://maps.google.com/?q=200+Lothrop+StreetPittsburgh,+PA+15213&entry=gmail&source=g>
> Phone: 412-647-3437 <(412)%20647-3437>
> Fax: 412-647-3873 <(412)%20647-3873>
> Email: follansbeewp at upmc.edu
>
> <image001.gif>
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> *From:* Art Papier [mailto:apapier at VISUALDX.COM <apapier at VISUALDX.COM>]
> *Sent:* Monday, February 19, 2018 11:17 AM
> *To:* IMPROVEDX at LIST.IMPROVEDIAGNOSIS.ORG
> *Subject:* Re: [IMPROVEDX] NYTimes: Her Various Symptoms Seemed
> Unrelated. Then One Doctor Put It All Together.
>
> Likewise VisualDx had Schnitzler’s at the top of the differential, but as
> much as I agree that all physicians need to understand and use point of
> care diagnostic decision support, we should recognize that relatively rare
> diseases like Schnitzler are uncommon and relatively easy for decision
> support to “pick up”.   The real need is to handle the cases when
> clinicians do not know they need help, but do need help.  How do you know
> what you don’t know?  Uncommon diseases are uncommon, and therefore
> variants of common are much more common that rare diseases.   Our real
> challenge in decision support is to provide tools that also provide useful
> and valuable content around the common, and more particularly with the
> variants of the common so clinicians have decision support top of mind.
> 80-20 rule:  If 80% of diagnoses are common, then it is reasonable to
> assume that variants of the 80% dwarf the super rare diseases in number.
> It is also safe to assume that clinicians who are in a constant rush, and
> bogged down by mind-numbing EHR charting exercises, will question the
> efficiency of using these tools.  We are focused on variation in disease
> presentation in our work with the goal of expanding the use of decision
> support beyond use for seemingly rare presentations.  We belive that the
> memory based training and care delivery system creates self-fulfilling
> prophecies where clinicians ask questions around the “classic presentation
> disease” scripts they memorize, but do not know the questions to ask around
> the related variants.  As an example,  over 100,000 people are admitted to
> hospitals each year for cellulitis when they do not have cellulitits.  This
> is a boring “story” for decision because cellulitis is common, but there is
> so much harm happening just from error around this single diagnosis.  How
> do we bend this curve and reduce unnecessary admissions while recognizing
> all true positives?   By focusing on commn diseases and their variants we
> can expand the use of decision support.
>
> Thanks to Lisa for another wonderfully written great case and prompting
> discussion at SIDM !
> Art
>
> Art Papier MD
> CEO VisualDx
> Associate Professor of Dermatology and Medical Informatics
> University of Rochester
> *From:* Edward Hoffer [mailto:ehoffer at GMAIL.COM <ehoffer at GMAIL.COM>]
> *Sent:* Sunday, February 18, 2018 6:40 PM
> *To:* IMPROVEDX at LIST.IMPROVEDIAGNOSIS.ORG
> *Subject:* Re: [IMPROVEDX] NYTimes: Her Various Symptoms Seemed
> Unrelated. Then One Doctor Put It All Together.
>
> This story makes a very good case for the use of computer-based diagnostic
> decision support systems. I entered the findings into the one with which I
> work, DXplain, and Schnitzler's came in ranked #1 I did not try Isabel, but
> would not be surprised if it also had the correct diagnosis near the top.
> Much easier than spending the reported "hours" in PubMed that the hero
> expended to arrive at the correct diagnosis.
> Ed
> Edward P Hoffer MD, FACC, FACP
>
> On Sun, Feb 18, 2018 at 9:16 AM, Joe Graedon <jgraedon at gmail.com> wrote:
>
> https://www.nytimes.com/2018/02/14/magazine/her-various-symp
> toms-seemed-unrelated-then-one-doctor-put-it-all-together
> .html?smprod=nytcore-ipad&smid=nytcore-ipad-share
>
> Chills, sweats, hives, achey bones — the older woman was sick for years
> before someone figured out the unusual disease that ailed her.
>
>
> Sent from my iPad
>
>
>
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-- 
Megan Golden
Co-Founder, *Mission: C**ure*

*Partnering with impact investors to demonstrate a new model for curing
disease*mgolden at mission-cure.org
(401) 375-2873 (CURE)
http://mission-cure.org
<http://www.linkedin.com/in/megangolden>    <https://twitter.com/mgoldennyc>






Moderator: David Meyers, Board Member, Society to Improve Diagnosis in Medicine


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