The patient experience of diagnostic error

Lee Tilson lee.tilson at GMAIL.COM
Sun Oct 20 19:02:37 UTC 2013

I used to be a philosopher / logician.

My biggest question is "How are doctors intellectually seduced into error?"

There are many answers, perhaps a different one for each different episode
of misdiagnosis.

In my case, I am aware of two misdiagnoses involving my family that have
the following logical structure.

There were several symptoms / abnormal findings to be explained by a
correct diagnosis. Both of my family's misdiagnoses were cases in which the
treaters had explanations (diagnoses) of the symptoms / abnormals, but the
explanations (diagnoses) the treaters made were not nearly the best
explanations of the symptoms / abnormals.

My son had three abnormal symptoms / findings after being admitted for

     abnormal brain scan with cerebellar tonsils in the top of the spinal

     abnormal respirations - Cheyne Stokes respirations

     abnormal heart rhythm.

The first item listed on the informed consent sheet was "cerebral edema"

Cerebral edema explained all of his abnormal findings.

The treaters insisted that the cerebellar tonsils were a sign of Arnold
Chiari malformation of the brain, something my son never had.

I could not get the treaters to consider the "cerebral edema" explanation
of the abnormals even though it was a better explanation for several
reasons, and it was also the most dangerous.  It was better because 1.  it
was a simpler explanation - one explanation covered all of these abnormal
symptoms / findings, 2. it did not require any new assumptions about
extremely rare underlying, undiagnosed congenital anomalies, 3. edema fit
perfectly in the context of the disease that had been diagnosed.

Objectively, edema was just a better explanation.

However, once someone considered "Arnold Chiari malformation," it was
impossible to get them to consider alternate explanations.

Subsequent studies proved there was no Arnold Chiari malformation.


I realize that my analysis is unusual. We all bring different things to the
table. I brought my background in logic and philosophy.

Let me know if you find this helpful

On Sat, Oct 19, 2013 at 8:01 AM, Siggs, Tim <ts228 at> wrote:

> Good afternoon all,
> I am a Clinical Psychology trainee at the University of Leicester, UK,
> with an interest in Diagnostic Error and am conducting research into this
> area for my doctoral thesis. As a clinical psychologist to be,I am
> particularly interested in the patient experience of diagnostic error with
> a view to understand the implications of either experiencing, or perceiving
> the experience of, a diagnostic error with reference to future health
> behaviours in patients with chronic illnesses e.g. self management of a
> chronic condition, adjustment, treatment adherence etc. I have followed
> this listserv for a number of months and have found it to be an interesting
> and insightful source of topical information, thank you all.
> I am writing today to ask for thoughts and suggestions regarding my
> research both generally and for a specific question. Firstly there appears
> to be a lack of published studies exploring the depth of experiencing
> diagnostic error from a patient perspective, there are several studies
> looking at adverse events as a whole which include diagnostic error within
> them (e.g. Elder et al., 2005; Entwistle et al., 2010; Kistler et al.,
> 2010; Kuzel et al., 2004; Mazor et al., 2012; Molassiotis et al., 2009;
> Ocloo, 2010), but do not offer specification of the diagnostic error
> experience in itself, and I believe that the impact may be very different
> for diagnostic error. I feel that illuminating this perspective may help to
> address the psychological and emotional impact of diagnostic error such as
> that which can present in a medical psychology department, and this
> knowledge may also inform ideas regarding the process of diagnostic error
> from the patient's perspective. So my question to ask is does anyone know
> of any studies, particularly qualitative, that examine the patient
> experience of diagnostic error or have any particular thoughts on this
> topic area? In particular I'm interested to know if there are any
> identified (evidence based?) approaches to supporting patients who have
> experienced diagnostic error anyone is aware of?
> Having searched much of the literature I am cognizant of the moves to
> bring the patient into the patient safety process and also diagnostic error
> and hope that my proposed research can add to this. Any thoughts or ideas
> you may have are welcomed.
> Many Thanks
> Tim
> Tim Siggs
> Trainee Clinical Psychologist
> University of Leicester
> Moderator: Lorri Zipperer Lorri at, Communication co-chair, Society
> for Improving Diagnosis in Medicine
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