Great Expectations Aren't Always Good

I didn't post last week, figuring people would be too busy to read it during the holidays, and I probably would have done the same thing this week except that interesting topics just keep coming up.  The one that most caught my eye was a study on patients' unrealistic expectations.

The study, by Hoffman and Del Mar, was a meta-study reviewing the research on patients' expectations about both benefits and potential harm of interventions.  As might have been expected, patients have an overly optimistic view: in 65% of the studies where data was available, the majority of patients overestimated the potential benefits of their treatment.  Similarly, in 67% of the studies where data was available, 67% found that the majority of patients underestimated the potential harm.

The authors noted: "Overly optimistic intervention expectations by patients and the public are undoubtedly contributing to the growing problem of over diagnosis and over treatment."  No kidding. 

In an accompanying commentary,  Deborah Korenstein, MD, calls patient perceptions "the Achilles heel of high value care," cautioning that the study "makes it clear that we must better equip patients to understand the potential benefits and harms of medical care so that they can make the best decisions and improve the value of their own health care."  She concludes that "the effort has to start with us," that is, with physicians.  

None of this is surprising.  For example, a study of cancer patients in 2012 found that 69% of patients with advanced lung cancer, and an even mote astonishing 81% of patients with advanced colorectal cancer, did not understand that the chemotherapy they were receiving was not at all likely to cure their cancer.   Even more disturbing, patients who rated their communication with their physician high were most likely to have over-optimistic expectations.  They may be comfortable talking with their physicians, but perhaps they're not really listening -- or the physicians are not being as blunt as they could be.  

It's not like patients and physicians are talking openly with each other anyway.  The Open Notes Project is getting lots of deserved plaudits for its effort to allow patients to see their own records, but it is dismaying that we need an initiative to do so.  On the other hand, a recent survey found that nearly half of patients don't want their doctors to see all their health information either.   

Lack of openness goes both ways.

In another illustration of the problem, Kenny Lin, MD, wrote a recent post False alarms and unrealistic expectations in preventive care that recaps the dubious data on the value of many common preventive exams and tests, while highlighting the difficulty in trying to change patients' expectations for them.  He fears that the main goal of allowing these unrealistic expectations to persist is financial -- that is, the financial interests of physicians and the associated supply chain.  He acknowledges that "false beliefs meet the psychological needs of patients for hope and safety, as well as for action, agency, and a sense of control.  They enable clinicians to feel they are making a difference; even physicians who know better order unnecessary tests to please their patients."

Sometimes these false beliefs do serve good purposes.  A patient's positive attitude has long been known to impact their response to illness.  Placebos are an age-old part of a clinician's bag of tricks, and science is starting to help us understand them.  Recent findings have shown that they produce measurable changes in the body, even in the brain (e.g., Parkinson's symptoms).  Landmark research by Ted Kaptchuk, et. al,  back in 2010 found evidence not only of the placebo effect, but that placebos had a positive impact even when patients knew they were "only" receiving the placebo.  

In another intriguing study, Kaptchuk gave asthma patients inhalers, two different placebo interventions, or no treatment, and found that only the ones with inhalers actually improved lung function.  However, the patients who received the placebos reported the same subjective improvement as the inhaler group.  They felt just as good, even if their lung measurements said they shouldn't.

Kaptchuk -- an acupuncturist by training yet an associate professor of medicine at the Harvard Medical School -- has made placebos so mainstream that he now heads up the Program in Placebo Studies & Therapeutic Encounters (PiPS), hosted by Beth Israel Deaconess Medical Center.  

One of the most intriguing findings from the placebo research is that, well, presentation matters.  Karen Jensen, also of Harvard and PiPS, has shown that patients look for clues about what to expect, and those clues may be non-verbal -- the physician's demeanor or facial expression, the decorations in the exam room, etc, As she says: "Everything that has to do with the elaborate ritual of delivering care could be a target to enhance the placebo effect,"  E.g., it is not just the pill but how the pill is prescribed.

Still, placebos and positive thinking only go so far.  As Kaptchuk says: "Sham treatment won’t shrink tumors or cure viruses."

Or can they?  The hottest area in oncology these days is immunotherapy -- getting the body's own immune system to attack the tumors, rather than relying on radiation or chemotherapy.  A new class of drugs are, in essence, releasing the natural brakes on the immune system.  Right now, we need drugs to accomplish this, but recent research has demonstrated that, amazing as it sounds, a person's mind can actually trigger gene expression.  So far it has only been tested triggering genes in mice, but perhaps we're not so far away from releasing those immune system brakes in ourselves.

Advocates of biofeedback must already be celebrating.

It's fun to speculate about literally thinking ourselves to good health, just as it is nice to imagine nanobots doing all the hard work.  Those days may come, and sooner than we think, but for now we're stuck with our existing health care system, and that system is built on physician-patient interactions.  

It's easy to see why those interactions are fraught with inaccurate patient expectations.  One of the biggest problems, of course, is that for most interventions, the supporting data is woefully sparse or inconclusive, especially in the context of a specific provider's performance with specific set of patient characteristics.  Even if a physician takes the time to share the data, and the patient has the aptitude and inclination to understand it, they may not be much better advised than uninformed patients.  

Whenever I think about shortcomings in our health care system, I often think of Congress.  Its approval ratings are at all-time lows, but the fact is we've elected them, or through our apathy allowed others to do so.  Similarly, we've allowed our health care system to be a medical care system, and abdicated much of our own responsibility for our own health to our health care providers.  As a result, when something happens to us, we have these unrealistic expectations about what they can do for us.

It's on us to take better care of ourselves.  It's on us to do better research on our treatment and provider options, and to demand better data.  It's on us to insist on frank and open communication with our physicians and other providers  -- even if that doesn't fit within the 15 minute appointment window they might have slotted for us.  

We should never take hope out of care, but we can do better about making it informed hope.