Patients reading their medical notes: the end of deceptive placebos?

By Charlotte Blease

Martha* – not her real name – is 40 years old. For ten years – throughout her thirties – Martha experienced health changes: “excessive fatigue, tingling in my feet, and muscle tightness in my hands.”  These symptoms were serious enough for Martha to visit her GP. Various things were prescribed but no concrete diagnosis was offered.

“One doctor told me it was ‘wear and tear’,” says Martha, “since I was aged 32 at the time, and my favourite pastimes were reading, TV, and films, this seemed quite a stretch”.

Over the years, increasingly worried by the symptoms, she visited a variety of GPs to try to get to the bottom of the symptoms.

“A different GP advised me to use a rolling pin on my feet, another told me to take Vitamin D tablets to ease the tingling,” Martha recounts. “I knew they didn’t have a clue what was wrong, but nobody was honest about it.  Feeling fobbed off made me wonder about my doctors’ competence.”

“The final straw,” says Martha, “was when one GP told me to take up jogging or other cardio exercise. She really wasn’t listening to me when I explained the abnormal level of fatigue I was experiencing. Apparently, she thought it was psychosomatic, and even suggested I could just be depressed.” Martha explains: “Very politely, I told her I wasn’t depressed. She insisted! In fact, I did end up leaving that appointment feeling very depressed that this was what a doctor had to offer.”

Martha’s experiences are not unique. Many patients with medically unexplained symptoms are vulnerable to placebo prescribing. The term refers to interventions that are ineffective, or likely ineffective, for a condition or set of symptoms but are prescribed as if they might be effective. Studies show that placebos are common in primary care. Or as one primary care doctor in a recent survey admitted, “It gets done all the time”. Placebos might be used with good intentions – to offer the patient something rather than nothing, to instil hope, to damp down their worries, or even provide some therapeutic boost via placebo effects. But as Martha experienced, placebos risk derailing trust too.

In a new paper co-authored with Dr Catherine DesRoches, we explore a new practice innovation – sharing patient access to their electronic health records (so-called “open notes”). We ask: Might open notes reduce placebo prescribing, confining this vestige of paternalism to the past?

A full decade after Martha’s first GP visit, a chance encounter with a locum led to a referral and a diagnosis. After undergoing tests with a neurologist, Martha was told she had an inherited illness called myotonic muscular dystrophy. Her doctor was open and honest. He admitted that there was very little medicine could offer. Martha says, “On one level I was relieved. The symptoms were not ‘in my head’. We even laughed about the line of treatments I’d been offered. But the specialist was also very clear: some high impact exercise could be dangerous.” The placebos Martha was prescribed were not harm-free.

“All I wanted was honesty,” says Martha.

Greater transparency could have strengthened trust. And offered online access to her clinical notes, could have empowered Martha to better collaborate with her GPs. In doing so, she might have got to the bottom of her symptoms faster.

* Martha gave permission for this story to be used in this post in its anonymised form.

Paper title: Open notes in patient care: Confining deceptive placebos to the past?

Author names: Charlotte Blease & Catherine M. DesRoches

Affiliations:  General Medicine and Primary Care, Beth Israel Deaconess Medical Center, Harvard Medical School, Boston, USA.

Competing interests: The authors declare no competing interests.

Social media accounts: @crblease @cmd418

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