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We must help patients recognize how important their opinions are

Karen Sepucha, PhD
Patient
March 6, 2022
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A recent article in Smithsonian Magazine lauded a man in Indonesia for removing a motorcycle tire that had been stuck around a crocodile’s neck for six years. Known by locals as buaya kalung ban, which means “crocodile with a tire necklace,” the reptile had successfully thwarted previous rescue attempts.

Though the outcome was considered a success – not once did anyone stop to consider whether the crocodile wanted the tire removed. While it is possible they could have eventually suffocated, perhaps they were not endangered and enjoyed their iconic status.

It is part of human nature to make assumptions about what others want or need, believing they want the same things we do. In this case, no one could ask the crocodile how they felt—but even if that were possible, would we?

In health care today, the answer is often no.

As a researcher at Massachusetts General Hospital, I interview lots of people about their experiences making medical decisions. I spoke to a young breast cancer patient that turned to many medical experts for advice. After answering a few questions, she realized it was the first time she was ever invited to share what mattered most in her life—yet that seemed vitally important when selecting the best course of treatment.

Unfortunately, studies on medical decision-making find doctors are twice as likely to make recommendations without asking patients what they want. This statistic would be less troubling if doctors were good at guessing what their patients want, but other studies indicate doctors frequently get it wrong. Some might argue patients can challenge doctor recommendations, but patients are often scared to do so. We are conditioned to believe the doctor knows best.

We believe medical science will provide the right answers, and if we gather enough information (and pose the right question to the right expert) the solution will magically appear. However, the biggest secret of medical science is there are shockingly few situations with a single right answer. This is partly because scientific advances often bring new treatment options that could carry greater benefits or greater risks.

For example, doctors now have the option to treat appendicitis with antibiotics in hopes of avoiding surgery altogether. But, new treatment options require a complete shift in conventional thinking that once viewed appendicitis as an emergency that must be treated with surgery. Depending on which doctor a patient visits, they could receive a referral for surgery or an antibiotic prescription.

Patients are often advised to get a second opinion from another doctor. But in this scenario, a third opinion could break the tie and still not identify the right solution for the patient.

The right solution is the one that best achieves a patient’s objectives, which requires their input. To make the right choice, doctors need to do more than just determine what is the matter with them. They also need to be skilled at figuring out what matters to them. Doctors should use that information to guide their treatment recommendations, and patients should readily volunteer this information if they are not asked.

Too often in medicine, health care providers assume what patients want or need. Like the crocodile, we may assume all patients would want a tire removed in order to help extend their life – even if the cure meant losing the only thing that made their unique life worth living. The burden of changing health care should not rest on the shoulders of patients facing major medical decisions, suffering symptoms, worrying about their future, and struggling to advocate for themselves. It is important we help patients recognize just how important their opinions are.

Karen Sepucha is a research scientist.

Image credit: Shutterstock.com

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