At some point in every clinician’s career, they’ll recommend a test or screening to a patient, and the patient will decline. Sometimes, the patient doesn’t understand the importance of the test or screening, and sometimes they worry that it will cost too much.

But sometimes, the patient is simply afraid: afraid of the test or procedure itself, of possible complications, or of finding out that they have a serious medical condition. For some, it’s a fear of facing their own mortality, said Carmen Carrion, PsyD, a neuropsychologist and associate professor of neurology at the Yale School of Medicine, New Haven, Connecticut.

It’s frustrating, many physicians say. But it happens, and it’s important to handle this “fear of finding out” the right way.

“Those feelings are so normal and so human,” said Evelyn Marquez, MD, a gastroenterologist with Kaiser Permanente Southern California. “And it’s so important to talk about it.”

Acknowledge the Fear

If a patient is reticent, try to explore what’s behind that hesitation. Once you know where the patient’s fears stem from, you can talk about those fears.

“It works best when patients have a regular physician or provider that they see over time that they can trust,” said Frank Lang, MD, chief of family medicine for Kaiser Permanente in Southern California.

Experts agree that downplaying a patient’s fears is usually counterproductive. The patient might even shut down. Instead, it’s better to focus on finding ways to encourage the patient to open up.

“The first thing is acknowledging that their fears are real and trying to figure out what the underlying issue is,” said Bimal Ashar, MD, MBA, an internal medicine physician and professor of clinical medicine at the Johns Hopkins UniversitySchool of Medicine in Baltimore. “Is it a fear of the diagnosis, or is it a fear of complication? Is it because of a family member that had a bad experience?”

Clinicians can also debunk any misinformation that might be creating some fear, he added.

And there may still be times when a patient clearly doesn’t want to talk about getting a mammogram, a colonoscopy, a cervical cancer screening, or some other type of test.

Shannon Dowler, MD, can easily recognize the signs.

“They’ll cross their arms. They’ll lean away from you. They might look away from you and stop making eye contact,” said Dowler, a board member of the American Academy of Family Physicians and family practice physician at a federally qualified health center in western North Carolina. “It’s ‘this conversation is over’ before you’ve even gotten into this conversation.”

At that point, she said, she knows that the next step will require some nuance. 

Additional Advice for Clinicians Grappling With This Conundrum

If a patient hesitates to go forward, clinicians might want to consider some of these strategies: 

Don’t get discouraged. It’s frustrating when a patient declines the chance to get screened or tested for a condition, despite all your recommendations and encouragements, especially if you know they’re at elevated risk. Even if the patient does refuse to get screened or tested for a condition that you recommend, remember that it’s their decision. Try to convey, “It’s your body and your decision ultimately, and that won’t ruin our relationship,” Ashar said.

Get creative. A long-standing relationship with patients sometimes gives Dowler the chance to be creative in persuading patients to follow through with screening or testing. She asked one longtime patient who was reluctant to get a mammogram if she’d get a mammogram as a birthday gift for Dowler, and the patient agreed. 

Try to address other complicating factors. A fear of finding out may be the main factor, but other factors could also be at work, and addressing those might help. For example, cost can be a major concern for many patients, Ashar said. If they have insurance, it may cover some screening tests, but their insurance might not cover additional tests. They may be worried about the costs adding up.

Discuss the impact of a delay. Clinicians can also discuss the benefits of treating conditions earlier, rather than waiting. “They need to have their own autonomy,” said Carrion. “But they need to have all the facts at hand.”

Focus on hope. As a gastroenterologist, Marquez does treat patients with advanced colon cancer, which is one of the fears that keeps some patients from getting screened for colon cancer. But she likes to reassure patients that advances in treatment are keeping many more people with stage IV cancer alive. “So there is hope,” she said. “I tell them that my job is to keep hope alive.”

Keep the conversation going. Lang agreed that it’s important to honor the patient’s autonomy. “We respect that,” he said. “At the same time, you don’t just take that as a one-and-done.” Instead of presuming that a patient has made a permanent decision, suggest to the patient that the two of you revisit the issue in the future, perhaps at their next appointment. 

The Added Complexity of Certain Types of Testing

It’s one thing to discuss a screening test for a condition with a number of effective or well-established treatment options or to discuss genetic testing with people who wish to become parents and ensure they’re not carriers of certain disorders or diseases.

It’s more complicated when it comes to neurodegenerative diseases such as Alzheimer’s disease or amyotrophic lateral sclerosis. 

“Sometimes the patient is looking for clarity and advice and direction…but in these kinds of situations, there’s not one right answer,” said Alec Neale, PhD, an assistant professor of neurology with the Yale School of Medicine. 

For many years, people who had a family member with Huntington disease had to decide whether to undergo testing themselves. They had to decide whether they wanted to get tested for this particular disease without a cure. 

“Some folks cope with news like that better than others,” said Neale. 

Then, earlier this year, a breakthrough occurred. The initial results of a small clinical trial indicated that a particular treatment called AMT-130 seemed to slow the progression of Huntington’s.

Could this type of advance in treatment change some patients’ minds when it comes to getting tested? Possibly, Carrion said. 

“As science evolves, our readiness to know may evolve, too,” she said. 

Advances in testing that make testing more accessible may also influence some patients’ decision-making. For example, until recently, physicians have mostly used PET scans and lumbar punctures to help them look for manifestations of Alzheimer’s disease. But the FDA recently approved two new blood tests that may make testing easier, and that could mean more people may start weighing their desire to know against their fear of finding out.

Clinicians can provide information based on their assessments and expertise to make sure that their patients understand the pros and cons. They can listen to their patients’ concerns and answer their questions. They can be encouraging and sympathetic.

But the clinician has to be ready when the patient makes the final call, whatever that may be. “It’s their decision, ultimately,” said Neale.