“I guess I will see what my iridologist thinks.”
With this verbal equivalent of a sucker punch, my patient reduced 15 years of medical training to a duel between medicine and quackery.
The young woman had worsening symptoms from an ignored cancer and now, neared a complication that worried the surgeon who wished to avoid an emergency. I introduced myself and carefully described what lay ahead: some challenging months for a high chance of cure. She asked a lot of questions and I answered them all. Then she closed her notebook and with it, her mind to medical advice. A year later, she came to hospice to die.
Iridologists purport that colour changes in the iris detect underlying disease. It has zero scientific basis in cancer management, yet it doesn’t stop patients from falling prey to disinformation about this and other alternative therapies. Indeed, the more outlandish the suggestion, the greater its attraction.
I recalled the encounter when someone who vaguely claims to work “in health” observed: “You know, this virus thing is a conspiracy.” I waited for the smile; instead, there was animated mention of waves and chips. Later, someone else expressed surprise that an educated person would harbour that view, but years of being an oncologist have taught me that the correlation between a good education and belief systems is not as robust as one might like. All kinds of people are prone to believing and peddling misinformation, whether about cancer, coronavirus or climate change.
As vaccines are rolled out, there is concern that segments of the population may simply skip them, through a lack of access, hesitancy or misinformation. This happens with other vaccines including the flu shot but the simultaneous and global scale of the pandemic has placed enormous pressure on governments to convince their citizens to get vaccinated.
One of the commonest terms in medicine is “noncompliant”, an umbrella term for all kinds of patients who decline advice. But this term is both unsound and unfair because by placing the onus on the patient to become compliant, it ignores the reasons behind their thinking.
Here are three things I have learned about communicating with reluctant patients.
Ridicule never works
I was a resident when a woman told the bow-tied professor that actually, she preferred lavender over chemotherapy. He lost it. As he proclaimed within earshot that the “silly woman” was a waste of time and should never return, I marvelled at the power of doctors over cranks but with passing years, I realised that part of our job was to change minds with patience and curiosity, admittedly more tedious than the gratifying one of recommending something and hearing, “You know best, doctor.”
Each year, patients ask me to call their healer, tour their organic farm, or even become a sales agent for the promising cure they are on. Ironically, the promising cure is actually the evidence-based one they insist on continuing even as they credit the quackery for their wellbeing, but I have learned that ridicule only serves to ossify opinions. The more I tell someone that the miracle powder is useless, the more they insist.
But how to find the balance between meekly accepting nonsense and defending the role of science? Firmly but respectfully, I refuse to legitimise quackery. I share evidence simply, slip in a warning about financial toxicity from extreme therapies, and by building trust, occasionally manage to save a patient from ingesting warfarin disguised as cure.
One thing is clear: when patients express hesitation or even plain ignorance, throwing ridicule at them has never worked to change minds, but it has alienated them. Why is that bad? Because eventually, they end up at the doors of the public hospital.
The pandemic has been shrouded in questions and so now the vaccine. Which vaccine is better? How often will it be required? Are there long-term side effects? Does immunity vary by race?
A single father of severely disabled children needs to stay in peak health for them and wants to avoid unnecessary risk. Some might argue that the unnecessary risk is skipping the vaccine, but his genuine fear can’t be ridiculed away. A vulnerable elder has had a relative die after the vaccine but doesn’t understand that correlation isn’t causation. A pregnant woman can’t decipher the changing advice. Empathy and exploration will be key, and health professionals will have to find a language to translate what we know while openly acknowledging how much we don’t know.
Make good healthcare easy to access
My frustration with my most disadvantaged patients was replaced with humility when I learned that they declined useful treatment because the barrier to treatment was too high.
Elderly grandparents care for their grandchildren during the workday. The walk-train-bus sequence is arduous. Parking is costly and even discounted taxi fares eat into grocery funds. Far too commonly, an adult child with substance abuse or mental illness has returned the ageing parent to the role of primary carer.
It isn’t enough to acquire vaccines, we must enable easy access. Each year, my hospital offers opportunistic flu shots to well-intentioned patients who somehow never get around to it. When they are admitted for an unrelated reason, we offer to vaccinate them on the way out and no one declines. We could rely on individual responsibility but it’s more cost-effective to simply give them the shot.
Vaccination hubs must be easily reachable for all, not just those with means, and an in-reach service should be explored for those who still can’t travel since they are likely to be the most vulnerable. Good healthcare translates intention into action by making it easy to do the right thing.
Representation matters
When a patient became terminally ill, he insisted on seeing only me in clinic. This caused the staff hassles when I was held up. One day I asked: “If everyone else treats you just as well, why do you insist on waiting for me?”
“Because you are like me.”
He explained he found our shared Indian heritage consoling, as if I understood his experience more closely, and this enhanced his trust in medical advice.
I felt bad at having asked the question but noted to myself that other patients chose to wait an extra hour to see another oncologist for exactly the same reason.
Better trust and communication are important for all patients but for minorities, they can form the basis for better healthcare outcomes.
Evidence shows that the patient experience improves when patients are treated by providers with a shared ethnicity.
And while this doesn’t hold true for every patient, in high-stakes interventions such as pandemic vaccination it is imperative that public health messages are delivered by those who live in and represent the modern, diverse, multicultural society. Multiculturalism isn’t simply a tagline for tourism and great food; it incurs real responsibilities.
Avoiding ridiculing the hesitant, enabling access, and underscoring provider diversity will move us towards successful vaccinating nations. Social distancing and hand hygiene will remain important. A global normal is a long way off and experts don’t have all the answers. Meanwhile, we can leverage the learnings we know to be true.
