Opinion | Can Patients Just Say ‘No’ to Treatment?

When can a patient say “yes” or “no” to a recommended colonoscopy? A blood transfusion? A COVID vaccine?

As 2022 opens, health officials predict a tsunami of new coronavirus cases worldwide due to the Omicron and Delta variants. For more than a year, official messaging has been that vaccination is the way out of the pandemic.

But ongoing vaccine hesitancy has hindered progress. The CDC currently estimates that 62.2% of the population is fully vaccinated, and that only 34.7% have received a booster dose.

But how and why medical providers tolerate denials due to misinformation is a critical issue.

Many patients have opinions and can articulate their choice for or against COVID vaccination, but in medical settings, honoring healthcare choices rests on a concept called “decisional capacity.” This refers to the ability to understand the risks, benefits, and available alternatives of a proposed medical treatment communicated by a healthcare professional.

As a board-certified internist and psychiatrist, I have directly cared for patients with COVID-19 as a medical provider and have been called to assess them when their mental health has been in question.

A large part of my job as a psychiatrist involves evaluating whether someone’s choices about medical care rest on sound judgment or if they are unduly influenced by mental illness.

Guidance from the American Psychiatric Association recommends that psychiatrists assist with determination of a patient’s decisional capacity regarding COVID vaccination.

I have been asked this question about a hypothetical patient refusing COVID vaccination based on misinformation.

But psychiatry has no place in this conversation.

Many mental illnesses may interfere with decisional capacity when untreated. Sometimes, the reason for incapacity is quite clear. For example, someone refusing hemodialysis needed for kidney failure may be non-decisional due to delusional beliefs that dialysis inserts microchips into their bloodstream to track their movements.

Other situations are more ambiguous — a choice to forego treatment may rest on an ardent and deeply held personal belief that is not emblematic of a mental illness but may not be mainstream either. These evaluations are more nuanced for clinicians, who strive to preserve a patient’s right to personal autonomy while simultaneously ensuring they are not denied a beneficial or even potentially life-saving treatment.

The capacity to consent to COVID-19 vaccination presents one such quandary. In December 2020, the CDC recommended COVID-19 vaccination for elderly and nursing home residents under initial phase 1a and 1b guidance.

Although this recommendation justly focused on high-risk populations, it also raised discussion about how to proceed when an elderly candidate for the COVID-19 vaccine was unable to provide consent because of cognitive impairment.

The subsequent FDA authorization of COVID-19 vaccination for children 5 years and older similarly engendered questions about the need for parental consent for adolescents. Responses to this conundrum have often played out in the courts more so than hospitals.

In early 2021, a court of protection in the United Kingdom ordered COVID-19 vaccination in an 80-year-old non-decisional nursing home resident against family objections.

Misinformation abounds on social media, and at least some individuals make decisions about COVID vaccination with faulty data. A 2021 study in Nature demonstrated that misinformation using scientific verbiage (such as “the COVID-19 vaccine will literally alter your DNA”), was especially effective at increasing vaccine hesitancy.

Some may wonder why an individual’s choice against COVID vaccination is respected when based on misinformation.

In the medical system, it is almost exclusively the role of psychiatry to say what is and is not “normal,” including a person’s behaviors, speech, and even their thoughts and ideas. When a patient tells me COVID vaccines make a person magnetic or alter DNA, it borders on a delusion — a “fixed, false belief.”

Other assertions are less glaring, including claims that the COVID vaccine was rushed in its development despite years of research prompted by earlier coronaviruses. With that information, must a psychiatrist deem such an individual non-decisional? Or is it advisable that their healthcare power of attorney decide about COVID vaccination on their behalf?

On my pediatrics rotation at Brown University in 2004, I recall a test with a “standardized patient,” an actor portraying a clinical dilemma I might eventually face in practice. The “patient” was a young mother at the clinic for her son’s check-up.

Before I entered, the prompt on the clipboard stated that the child was due for vaccines. Little did I know that the mother had been prompted to refuse vaccines at all costs, insisting a link with autism. It seemed a hopeless conversation.

My classmates and I hung our heads low as we exited the room, disappointed that we could not convince the mother otherwise. Of course, the real test was how we conducted ourselves as doctors-in-training in the face of misinformation.

Now, 17 years later, the value of that exercise is even more crystal clear. Patients with mental illness are at increased risk for COVID-19 infection and greater morbidity and mortality. Psychiatrists must aggressively advocate for COVID-19 vaccine access for these patients.

However, deeming individuals “non-decisional” for misinformed beliefs that are not representative of a psychiatric illness is inappropriate, unfairly medicalizes the narrative, and incurs a risk of further public distrust of the healthcare system.

It is not the province of psychiatry to adjudicate uncomfortable social discourse so much as to elicit it. Empathic listening — curiosity rather than social judgment — has always been the most profound and powerful tool at our disposal, and it must remain so.

Charles Hebert, MD, is a psychiatrist.

This post appeared on KevinMD.