Uncertainty: Can We Take It?

Blog Post by: Bernadette Keefe MD

Introduction

During the #HCLDR chat April, 28 2015 we discussed the lack of utility of an annual physical if we DONʼT have medical symptoms (read the blog here, and see the summary here). This week,  I would like us to consider what happens when we DO have symptoms and we seek advice, diagnosis and treatment from our physicians, and to describe the uncertainty in these encounters.

Seemly overnight a tremendous amount of uncertainty has entered the healthcare arena (aside from the financial /insurance, regulation/government and technological/electronic record issues). What is increasingly apparent and worryingly so are the shifting sands within the essence of the practice of medicine: the point of care, when people seek professional advice from physicians. There are three major facets of uncertainty during consultation:

1. Around the changing relationship between patients and physicians;
2. The uncertainty of the information within and the interpretation of test Results; and
3. The uncertainly about the truth of the vast body of medical research

The Changing Physician/Patient Relationship

As physicians we are expected to:

1. Listen to our patients more attentively;
2. Provide them with as much data about their disease as possible;
3. Recommend further reading on their conditions; and
4. To be much more mindful of the patientʼs goals and to consider the social context when recommending treatments.

As Patients we are expected to be interested and engaged in shared decision making about our course of care and treatments. We are expected to take better care of ourselves, to exercise, eat nutritionally, to get enough sleep, to not smoke, to avoid addictions and to maintain a healthy social life in order to ward off the “lifestyle” diseases of obesity, Type 2 diabetes and heart disease and to lessen chances of dementia. Additionally both physicians and patients expect to have access to the necessary patient data to enable safe, informed care. Sadly in this era of little to no interoperability -the results of outside testing and consultation are often not available at point of care.

Uncertainty within Test Results

As the body of medical literature increases, medical reversals increase, and patients age with more chronic conditions, both physicians and patients are being faced with more complicated decisions with less certain outcomes. However humans fear uncertainty, tending to do anything to resolve questions and reduce risk. In healthcare that usually means more tests and diagnostic procedures to answer nagging questions.

A noted surgeon; Atul Gawande MD addressed this subject in his New Yorker article “Overkill”:

As a doctor, I am far more concerned about doing too little than doing too much. Itʼs the scan, the test, the operation that I should have done that sticks to me – sometimes for years.

 Why not take a look and see if anything is abnormal?

And patients often feel the same way. Theyʼre likely to be grateful for the extra test done in the name of “being thorough

BUT

Resolving the uncertainty of non-normal results can lead to procedures that have costs (and complications) of their own.

From An Emergency Medicine Physician:

A recent survey of emergency department physicians, focusing on imaging tests, revealed that over 90% of them ordered unnecessary tests out of fear of error, uncertainty, and other non-medical reasons. Hamal Kanzaria ,M.D., the lead author commented about the results:

Overall I interpret our results (as reflecting on) a cultural response both within and outside medicine to uncertainty and error.

 I personally think that to overcome overtesting we need to address our collective intolerance of uncertainty both within medicine and within society at large, as well as the culture of blame that triggers the malpractice system.

From A Radiologist:

In his piece, “Who is the better radiologist? Hint: itʼs not easy”, Dr Saurabh Jha, a radiologist, asks us to think about the trade offs between certainty and risk, between sensitivity or specificity with respect to interpretation of radiologic studies. Given perfection is unattainable, do we lean towards the underdiagnosis or overdiagnosis spectrum?

As Dr Jha states in his piece (he uses a fictional Dr Jha and Dr Singh for purposes of illustration (please see the article to put this in context) that we vacillate about what kind of radiologist we would want reading our study depending on the known outcome.

If I had a missed tiny cancer on chest X-Ray, I would have wanted Dr. Jha to have read my Study

(Dr. Jha over reads, misses nothing but calls every incidental finding, 99% are nothing but many of these evaluated because of his reading: surgery, complications or worse).

BUT

If I had no cancer I would have wanted Dr. Singh to have read my Xray.

(Dr Singh only calls major findings, not mentioning small findings he interprets to be incidental findings, thus avoiding needless work up, possible complications and waste.)

However, we do not know the outcome of a study ahead of time so each of us, as patients and physicians must decide in each circumstance what level of uncertainty is tolerable for us. Are we going to try to quell every tinge of uncertainty no matter the cost to ourselves (and others)? Or can we tolerate living with some uncertainty, living with those non-normal findings that we do not investigate.

Uncertainty of Truth of Published Research

With more transparency and unbiased evaluation of the literature, we are learning that there is a tremendous amount of uncertainty about the body of research which had been considered evidence based, but now is often seen to be unreproducible. For instance a treatment course entered into now may be found unhelpful or even dangerous a year or worse – 10 years from now. As George Lundberg MD just wrote in Medscape about the work of John Ioannidis on the inaccuracy of most of the body of medical literature:

The mathematics, the psychology, and a misunderstanding or deliberate ignoring of the overriding importance of positive predictive values negate the validity of most – and he means most – published research.

John (Ioannidis) argues persuasively that many forms of bias operate in affected domains, fields, cultures, peopleʼs heads, reward systems and ecologic groups.

In the article, Dr Lundberg lists twelve steps to improve the body of medical research: including adopting a culture of replication, much more collaboration and transparency, better training and standards, improvement in peer review, and reporting and dissemination of research results. Personally, I would add to those: open access and patient inclusion in study design.

From an eloquent post by Dr John Mandrola, citing a recent article in the journal Mayo Clinic Proceedings about the dramatic number and subsequent effect of medical reversals (advice, treatments -drugs, procedures, surgery- formerly recommended, now shown to be useless or worse)

The authors emphasize three reasons why medical reversals are so serious. First millions of humans were harmed. The second issue is continuing harm. Some estimates suggest it takes ten years – on average – to change entrenched medical practice…Third, medical reversals cause harm because they erode trust in the patient – doctor relationship. Patients expect doctors to be either correct, or transparent about uncertainty.

AND

This is not just important information for doctors. Patients seeking medical treatment should not assume a prescribed therapy is beneficial just because a doctor says it is. The era of paternalism in Medicine is over. Patients should be able to ask their doctor whether the evidence supports the intervention. Itʼs okay if the doctor is uncertain. In fact, doctors who are too sure of things worry me.

Summary and Topics

So now what? Just at a time when patients are becoming empowered, shared decision making has finally become a reality, physicians are listening more, we now realize that much of the literature may be partially or completely in error. Just at the time when we understand we need access to data, we have instead widespread lack of interoperability. All of this coming just at a time when uncertainty in decision-making seems to be peaking.

Please join #hcldr weekly tweetchat on Tuesday May 19th at 8:30pm Eastern (for your local time click here) when we will discuss the following topics:

• T1 Ask your physician to investigate everything or live with non-normal findings that are most likely benign, where do you fall on the continuum?
• T2 Which radiologist would you prefer: attention to every little finding/order every test OR just big stuff/order a few tests maybe miss small things?
• T3 When there is uncertainty about best course of treatment or diagnostic testing, are you more or less apt to just let “doc decide”?
• T4 What are the best solutions to all this uncertainty? Interoperability? Better research? Less litigation? Less blame? Accountability?

References

“Risks, Benefits and Uncertainty in Health Care”, Health Affairs, May/June 2007,  http://content.healthaffairs.org/content/26/3/624.full.pdf+html, accessed May 16 2015

“Coping with Uncertainty in Primary Care”, Dr Richard Draper, PatientPlus, April 2010, http://www.patient.co.uk/print/1541, accessed May 16 2015

“Varieties of Uncertainty in Healthcare: a conceptual taxonomy”, Paul K J Han, William M P Klein, Neeraj K Arora, Medical Decision Making, December 2011, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3146626/, accessed May 16 2015

“Overkill”, Atul Gawande, New Yorker, May 11 2015, http://www.newyorker.com/magazine/2015/05/11/overkill-atul-gawande, accessed May 16 2015

“Changing the culture of American Medicine – Start by removing hubris”, Dr John Mandrola, Dr. John M Blog, July 8 2013, http://www.drjohnm.org/2013/07/changing-the-culture-of-american-medicine-start-by-removing-hubris/, accessed May 16 2015

“Who Is The Better Radiologist: Hint, it’s Not That Easy”, Saurabh Jha, Kevinmd.com, August 9 2014, http://www.kevinmd.com/blog/2014/08/better-radiologist-hint-easy.html, accessed May 16 2015

“97% of ED Physicians Order Unnecessary Tests”, John Commins, HealthLeaders Media, March 30 2015, http://www.healthleadersmedia.com/content/PHY-314799/97-of-ED-Physicians-Order-Unnecessary-Imaging-Tests, accessed May 16 2015

“Clinical Decision Support: The elixir of Healthcare?”, Nathan Buzza, LinkedIn Pulse, March 8 2015, https://www.linkedin.com/pulse/clinical-decision-support-elixir-healthcare-nathan-buzza, accessed May 16 2015

“The Certainty of Uncertainty in Medicine”, Dr Lundberg, Medscape, May 2015, http://www.medscape.com/viewarticle/844488, accessed May 16 2015 (subscription requied)

“Why Most Published Research Findings Are False”, John P A Ioannidis, August 2005, http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1182327/, accessed May 16 2015

Image Credit

Make up your mind – Quinn Dombrowski

https://flic.kr/p/6Qsm5S

Tags: empowered, listening, patient, physicians, relationship, shared decisions, treatment, uncertainty