Diabolical Negativism Save

I’m often perplexed when I say one thing, but my patient hears something totally different. Where did my advice get derailed? Or was my advice too weak or too wild to take seriously? Is it the patients’ perspective, or education, or am I not clear in my messaging?

“Here’s your new medicine, hydroxychloroquine. It’s quite effective (at controlling joint and skin symptoms) and is one of the safest medicines we prescribe.”  That was my lead sentence; but instead the patient heard and clung to the last sentence: “Oh, and it rarely affects the eyes. So you’ll need to have an annual eye exam to assure the drug’s safety.”  The subtext became a headline and the patient heard “potential blindness”.  Importance is justified when you find she makes her living as a sharp-shooter and her grandmother had macular degeneration.

Negative thinking is the constitutive skepticism that comes with new diagnoses, new drugs, car salesmen and prospective suitors. It is an anchor for self-preservation, especially in such naïve situations. However, in the case of medical care it can be diabolical, destructive and damaging to outcomes. Such thinking is not devilish or ill-intended; instead it is misinformed, pessimistic and restraining. Left unchecked, it stagnates care, averts interventions and drives nonadherence – much to the detriment of the worried patient.

Research on patient compliance and drug adherence has shown that nearly all patients have some degree of noncompliance, with medication compliance ranging from 50-70% in most.  We see this in patients who confess to taking their etanercept once every two weeks or sleep apnea patients who admit to using CPAP, but only once a week when their spouse nags them to do it.

There are two approaches to negative thinking physicians need to consider proactively. First, is the need to teach the consequences of not treating a problem or disorder and second, teaching the patient how to correct the negative narrative they tell and convince themselves of.

The Consequences
Teaching the consequences is easy, but it takes time and pastoral patience. Patients can easily comprehend the consequences of not treating HIV, a cancer or mental illness. But applying the same clarity to their own clinical situation requires coaching and simple logic. 

Recognize that many patients will not take a drug or even fill the prescription.  Consumer Reports states that half of patients assume grave risks by skipping doses, taking expired medications or not filling a prescription. Several sources indicate that 23-33% of all prescriptions go unfilled, especially in the elderly, low-income groups, chronic conditions and expensive drugs. Nonadherence is willful inaction owing to risk aversion, bolstered by inexperience in making value-based choices.  

Patients struggle with the balance of potential benefits and risks of a particular therapy. Many believe there is more harm in taking meds than in avoiding meds. When confronted with new, confusing or ambiguous situations, decision avoidance may appear to be the easiest and safest option. Worse is the belief that all adverse events are likely for those with the misfortune of having an autoimmune (or like) chronic condition.  An RA patient may immediately reject the appropriate option of rituximab because of the very rare risk of progressive multifocal leukoencephalopathy (PML).  When informed that the risk of getting PML from rituximab is 1 in 30,000; such patients quip “oh don’t worry, I’m unlucky enough to get it!”  They truly don’t accept that their individual risk is the same as the next RA patient, 1 in 30,000. 

Unfortunately, such magical thinking (rooted in what is not known) and non-treatment is predictably rewarded with poor outcomes and more difficulty and distress for all. This is where an experienced clinician can teach the likely consequence of not treating (active lupus nephritis, inflammatory symptoms of PMR or swollen joints with RA). Patients can be counseled that:

1. they are often avoiding that which they are misinformed or know little about;
2. they are stuck and without a plan to fix their problem;
3. that time and natural cures/interventions were prevalent at the turn of the century when the average life span was 48 years; and
4. it is wrong to view or equally consider information that is free (internet, sales people, television) versus that which is the best money can buy (consultation with a specialist). 

Risk communication takes time and careful wording.  But I like to end my rationale for a prescriptive plan with proclaiming this medicine was made for them and their situation, it cost $1-2 billion dollars to develop and has been given to thousands or millions of patients for the same reason AND that my research and 30 years of experience are on your side for the best possible outcome.  Reinforce that the patient needs to read, do research and have a voice.  But at some point, they will have to trust someone (of their choosing) to guide them as they forge ahead through scary waters. Who will guide them?  A website, vitamin maker, and brother-in-law surgeon, or the rheumatologist they’ve chosen to see?   

The Negative Narrator
We all have a narrator in our head and at times, it just won’t quit. “You’re not good enough”. “That would be a bad choice.”  “Let someone else go first”. The narrative inside your head is often negative and constraining and while it may be self-protective, it can also be a detriment to health and happiness. 

The television series “Ray Donovan” is about a nefarious Irish family who moves from Boston to Los Angeles and becomes involved in a fast paced, shady sub-culture. The lead character, Ray Donovan (played by Liev Schreiber), is a “fixer” or “mechanic” of bad predicaments that happen to good and bad people.  When asked what his job is, he proclaims, “I change the story” (meaning he delivers the desired outcome he is paid for). 

Changing the story, especially the story patients tell themselves, can be done with clarity, guidance, risk communication and recognition of the negative narrator within. Instea of thinking, "dang! I've got to take this drug for the rest of my life?" the inner voice should be taught to think, "thank goodness there is a long-term treatment so that I can have long-term normalcy!" 

Michael Hyatt is an author, publisher, mentor and podcaster who speaks on many areas of self-improvement. One of his podcasts (listen here) covers how to  “change your story” and in essence, deal with the negative narrative in a more productive and planful way.

Tenets to Changing the Story include:

1. Recognize that there is a narrator/voice within;
2. Jot down what that voice tells you – “don’t take that medication, you’ll be the one in 30,000 to get that deadly brain infection”;
3. Evaluate the “story” – is it holding you back or empowering you forward; is it leading to action or stagnation;
4. Write a different story – with a better or more informed outcome. What you should tell yourself or what your doctor would tell you.

Patients need to recognize the voice isn’t always positive or productive.  The narrator often leaves you stuck where you are with what you don’t know.  The patient needs to know what are the consequences? What is at stake?  What choices leave you the victim or the one in control? Also, remind them it’s unwise to make judgments (or listen to the narrator) when they are stressed, tired, in pain or after hearing bad news.  A good night's sleep and repeat conversation is likely to be more productive.

Lastly, and most importantly, physicians need to prescribe more than the drug. They need to deliver hope and be clear about their expectations and how this patient’s story will play out. Patients desperately want to hear “the rest of the story”, when and what will happen when the right choices are made. Tell them what it is about their situation makes them ideal or suboptimal candidates for your prescribed plan.

Give them the positive voice they need to move forward!

 “You miss 100% of the shots you don’t take.” – Wayne Gretzky

“Don’t worry about failures, worry about the chances you miss when you don’t even try.” – Jack Canfield