“Dr. Sirven, this is light reading for your lunches this week and maybe dinners too,” she said. “I hope your wife doesn’t mind.”
I quietly thumbed through the bound tome feigning a smile.
“Don’t worry, I know you can’t read it today,” the patient’s mother continued. “But I think you need to go through this in order for you to cure my daughter’s condition.”
“Of course,” I said with a sigh. “I’ll go through this.”
At a lunch break, I started going through the material consisting of interesting yet overwhelmingly positive articles on unproven therapies bordering on quackery.
This clinical scenario is increasingly common.
Over the course of my 25-year medical career, I’ve noted a striking difference in patient reaction toward incurable or debilitating conditions. After the initial shock of a diagnosis, most patients I’ve encountered take an “against all odds” approach to curing that condition regardless of what I or other doctors may say.
So where is this steely optimism coming from?
It’s fueled by overly confident blogs, books, medical journals and, in the case of my patient, a reality that there’s no choice but to persevere.
Most studies published in medical journals are heavily biased towards positive results. There’s even an entirely recent genre of best-selling books where patients are David versus Goliath—the healthcare system—and patients seek to find their own therapeutic happy endings.
Sadly, our healthcare system isn’t as helpful to those with unusual or debilitating chronic conditions leaving patients to fend for themselves.
If I were in their shoes, I’d do the same. Sometimes the results are spectacular.
A pharmaceutical grade marijuana extract for rare epilepsy has shown positive results in clinical trials and is being considered by the FDA. The family of a patient with epilepsy—with the help of a Facebook community—created the extract.
More often though, there are other stories like that in the 1970’s where cancer patients declined traditional therapy and died in favor of taking a dangerous compound made from avocado pits.
At the end I’m left with the realization that hope does exists. And I’m thankful for the innovation it spurs and the comfort it provides to my patients, but hope can also be dangerous when it obscures reality.
Dr. Joseph Sirven is a neurologist at the Mayo Clinic.