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Misdiagnosis: A Chronic Condition Looking for a Cure

According to a report in the BMJ Quality and Safety Journal, each year in the U.S. approximately 12 million adults or 1 out of 20 patients who seek outpatient medical care, are misdiagnosed in a way that could cause severe harm.

These alarming statistics are further reinforced by a new study from the  Institute of Medicine (IOM) published in September, 2015, which predicts that:
“most people will experience at least one diagnostic error — an inaccurate or delayed diagnosis — in their lifetime, sometimes with devastating consequences.”

The report  includes several examples where misdiagnosis occurred:

A doctor mistook a blood clot in the lungs of a 33-year old woman for an asthma attack, leading to her death.
An urgent care clinician misread an X-ray and diagnosed a 55-year old man with an upper respiratory infection instead of pneumonia. He died as a result.
Doctors at a trauma center decided not to perform a CT scan on a 21-year old stabbing victim and missed a knife wound penetrating several inches into his skull and brain.
A newborn baby suffered preventable brain damage when doctors failed to test for high levels of a chemical in his blood that had turned his skin yellow from head to toe.

There are thousands of similar instances occurring every day.

What does this say about the current level of patient care in the United States? It says that providers who are in a position to make a diagnosis for a patient, along with the patients and their caretakers or family, need to pay more attention to what is going on. It says that we patients are tolerating a healthcare system where we too often do not experience full disclosure from our clinicians. It is says that our system does not encourage collaboration and communication between healthcare clinicians and patients. It tells us that us that misdiagnosis is raising the cost of care for all of us.  It is says that each of us will face a potentially life threatening situation over the course of our healthcare that could be addressed and reversed if we pay attention.

We live with a system that is ill-designed to support the diagnostic process because our clinicians are limited by the time they are allowed to spend with each patient. As a result, some do not always follow-up with tests and procedures that they have ordered.Even if they follow-up, they are often not provided with adequate feedback about the accuracy of a diagnosis. Perhaps most disconcerting, ours is a culture of care that discourages transparency and disclosure of diagnostic errors, which impedes attempts to correct these problems.

Diagnostic errors are often incredibly harmful to patients, as they may lead to delays in treatment, lack of treatment, inappropriate, or unnecessary treatment, all of which can have physical, psychological and financial consequences.

At a recent conference, sponsored by the Society To Improve Diagnosis in Medicine, clinicians, hospital administrators and patients from all over the world gathered in Washington D.C. to recognize and discuss this very problem.  They focused on issues related to:

The impact of error in medical diagnosis and contributing factors.
Solutions and prevention strategies.
Sharing research methods and identifying ways to measure diagnostic error.
Participating in the development of research, education, technology and practice strategies to reduce diagnostic error.
Developing a community of advocates across the healthcare spectrum.

The Society to Improve Diagnosis in Medicine also produces a tool kit  which can be downloaded  and  is free of charge to patients.

Peggy Zuckerman, a member of the Society To Improve Diagnosis in Medicine, patient advocate and member of the Executive Committee of the Society for Participatory Medicine sums it up well.  She says:”this is not a new problem, but a problem that has not had a home.”

What can the patient do to protect him/herself?

Become fully engaged in your healthcare and communicate completely, accurately and thoroughly  when you visit your clinician
a. Bring written notes with you to the visit
b. Bring a pad, paper, tablet or other device to take notes
c. Go prepared to challenge what you do not understand and ask lots of questions.  Do not be put off by the pressures of time.

Understand your own and your family history
a. Have a list of all the procedures, treatments, surgeries you have had in the past
b. Genetics plays an important role in your overall health profile so try to have as complete a family history as possible.

Be proactive
a. Use all of the available resources to learn everything you can about your health conditions, tests and procedures and medications, including web resources, and social networks.
b. Be diligent in coordinating your care so that all of your clinicians are up to date on all of your conditions and have your full information at the point of care.
c. Solicit the advice and assistance of a healthcare advocate if you feel unable to cope and manage your health by yourself.
d. Never assume that no news is good news when you have not been notified of  the results of a test or procedure.  Make sure you are diligent about procuring g the results and discussing them in detail with your clinician.
e. Be informed and involved in all health decisions.

There is a way to cure medical misdiagnosis. It can be resolved with full collaboration and cooperation of all members of the healthcare team, (including the patient), who have to acknowledge this weakness in our system and be diligent about considering all possible options when addressing a health concern.

 

2 thoughts on "Misdiagnosis: A Chronic Condition Looking for a Cure"

As you’ve described clearly, Nancy – misdiagnosis can cause inappropropriate treatment that doesn’t take care of the problem.

But it also works the other way – when treatment is delivered that is too much – because patients are diagnosed with something “bigger” than they really have. In my case I was diagnosed with a rare, terminal form of lymphoma and told I needed both chemo and radiation. But my diagnosis was wrong and turned out to be – literally – nothing. It took me three months, but I figured out (despite the roadblocks put in my way) that I had no lymphoma.

Suppose I had gone thru chemo and radiation, which were supposed to buy me some extra time? Since I was basically healthy, and would have survived treatment, in the end, the doctors who were wrong would have been considered heroes for curing me of incurable cancer.

I wholeheartedly agree with you, that misdiagnosis rates can only be improved when everyone collaborates. But it also requires second opinion doctors to stop simply agreeing with colleagues, and perhaps most importantly, that patients begin taking a very active role in their own care decisions by looking outside the information presented to them for additional information.

nfinn says:

Trish,

You are so right. It is really up to the patient to take charge of their own healthcare and weigh the options presented to them, understand how they are feeling physically and probe and question to determine the best approach to their care. What turns out to be correct is often not discovered in the first pass in resolving a problem.

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