Denial – When Patients Do Not Want to Believe They Have Cancer

In June 2022, medical oncologist Rebecca A. Shatsky posted the following tweet: “What do you do/say when a patient does not believe you when they have #CANCER? As an oncologist, I occasionally face this situation, and I want to hear how others handle it and what helps patients most at this point, but it is very difficult.”

About a dozen people offered various thoughts on how to approach such difficult situations. One oncologist suggested talking again a few days later, giving the patient more time to process things; other specialists suggested sharing the pathology report or images with patients. Some people simply said, "if a patient does not want to believe they have cancer, no amount of evidence will change that" .

Dr. Shatsky, a breast cancer specialist at the University of California, San Diego, tweeted again after considering the initial responses: "Unfortunately, there do not seem to be many answers.”

For Shatsky, however, this points to another concern: distrust of the medical community is becoming more widespread .

A Shaken Sense of Trust

In general, experts say that the situation Shatsky describes—patients who do not believe their cancer diagnosis—occurs rarely, but with increasing frequency .

Denial takes many forms. Of these, complete disbelief is probably the most extreme. Patients may also downplay the seriousness of their illness, hesitate to hear bad news, or reject modern, approved treatments or specialists' advice.

Like Shatsky, some experts say they have seen a disturbing increase in the number of patients who do not believe their physicians or trust their advice .

Ronald M. Epstein, professor of family medicine, psychiatry & oncology at the University of Rochester School of Medicine in New York, said, “I think trust in expertise in general has been shaken. People trust science less than perhaps 20 or 30 years ago, or at least that is how it seems."

Denial and distrust in cancer care are not new. These reactions, together with wishful thinking, distraction, and minimization, have been seen among oncology patients for many years. In 1972, Harvard Medical School psychiatrist Avery D. Weisman wrote his book On Dying and Denying (On Death and Denial), and denial and similar reactions have been studied in the oncology literature ever since.

Most research has focused on advanced rather than early-stage cancers, but denial can also occur at diagnosis. A study of patients with breast cancer about 30 years ago suggested that denial of the diagnosis usually emerges early in a patient's disease course and decreases over time, but may reappear at the terminal stage of cancer. Another analysis evaluating this in 13 studies found that the frequency of denial at diagnosis ranged from 4% to 47% .

Over the course of a career, an oncologist delivers approximately 10 thousand to 30 thousand pieces of "bad news" . Therefore, says Prof. Paul Helft, who retired from Indiana University School of Medicine, there is always a possibility that a patient is somewhere on the "spectrum of disbelief."

Prof. Diane Meier, a specialist in geriatrics and palliative medicine at the Icahn School of Medicine, says that denial and disbelief are natural , protective responses to difficult or frightening news. In response, Prof. Meier recommends patience and time . Specialists can also ask whether patients have someone they trust—for example, a family member or a person they believe in—with whom to discuss possible developments as the process continues.

“The important thing is not to find ourselves in opposition to the patient… or threaten them with what will happen if they do not listen to us.”

In addition, specialists need to be careful when they feel an urge to argue with a patient or lecture them.

"The moment we feel that urge, it is a signal to stop and recognize that there is something going on within the patient that we do not understand. Forcing information on someone who does not want it and makes it clear in every way that they cannot cope with it is not an option for a trusting or high-quality relationship."

Rejecting Expert Advice

Dr. Jennifer Lycette, a hematologist and oncologist at Providence Seaside Cancer Center in Oregon, says there has been an increase in the number of patients who do not believe they need the treatment that she or other oncologists recommend. Despite being ill, some patients are determined to stick with alternative medicine or do nothing. "I have even seen situations where the tumor is visible, such as a growth on the skin, and the number of people who still think that whatever they are doing is working doubles." Dr. Lycette encourages these patients to seek a second opinion , and she tries to remain open-minded about alternative approaches herself. If she is unfamiliar with something a patient is considering or believes in, she researches it together with the patient.

However, she also highlights the risks associated with these approaches. Some alternative treatments may support patients during standard treatment, but Dr. Lycette strongly warns her patients against using these treatments instead of standard treatment. "The red line is to keep the lines of communication open," she says.

Like Dr. Lycette, Dr. Helft says there has been an increase in the number of patients who trust and believe people outside the medical system and the alternative treatment options they offer.

Bad News

Dr. Helft often encounters cancer patients seeking a second or third opinion about their illness. Not all of these patients deny that they have cancer, but they often do not want to hear bad news, which can complicate treatment.

To address these scenarios, Dr. Helft developed a response system for interacting with patients. In 2008, he described, through an example, acknowledging a patient's emotional distress and trying to understand why patients may not want to know more. A patient might be told: "I have formed an impression of your situation, but it seems that you have already heard many negative statements. I do not want to upset you again if you do not feel ready to talk about it."

Trying to understand why a patient resists hearing about their condition can also help build trust. One approach highlighted in 2008 is: "If you can help me understand your thoughts about prognosis (the course of the disease) and why you do not want to talk about it, that will help me learn more about how we can discuss other serious matters."

Behind the scenes, Helft privately considers how much information about a patient's prognosis is relevant to their decisions, especially if the patient appears to misunderstand their prognosis or there are several options for long-term treatment. He also asks patients how much they want to know. Do they not want to discuss any options? Do they want information about a few options? Or do they want to learn about all of them in detail?

He notes that this approach implicitly acknowledges that the information is highly stressful and avoids being excessively blunt. It may also help guide patients toward the right treatment path and minimize poor decisions.

Samantha Winemaker, a palliative care physician in Hamilton, Canada, says that after receiving a new diagnosis, patients usually go through a period of adjustment . Responses range from needing time to accept the diagnosis as real to jumping in to understand as much as possible.

Winemaker, who hosts The Waiting Room Revolution , a podcast focused on helping people cope with serious illness, encourages specialists to be realistic with patients about their prognosis and offer some gentle truths from the outset.

“While preserving hope, we should invite patients into 'knowing' as early as possible,” she says.

She calls this approach, which balances hope and reality, "walking two paths" and says that it grows throughout the illness journey. In this way, patients are less likely to be surprised if things get worse.

“We should never wait as long as 11 hours to give someone bad news.”

We All Want to Hope

As part of his research on communication, Dr. Epstein has listened to hundreds of hours of discussions between specialists and patients. He often heard specialists conducting difficult conversations as though lecturing a patient .

Many specialists mistakenly believe that if they say something in technical language, patients will believe it, he says. But the opposite happens: patients shut down and instinctively distrust specialists.

Dr. Epstein says that specialists need to build trust before delivering difficult information. He advises treating patients with dignity and respect even if they express unusual ideas about their illness. "If people are not respected, you have no foundation to stand on, and there is no point in trying to persuade them."

Patients and specialists often leave a discussion with conflicting views of what lies ahead. In one study, two-thirds of patients had wildly different views of their prognosis compared with their physicians, and most did not know that they disagreed with their physicians.

In the past, Dr. Epstein tried to close the gap between his own understanding of a patient's prognosis and the patient's understanding. Recently, however, he has become more convinced that he should not do this.

"What I am trying to do now is focus more on the uncertainty involved.”

He uses statements such as: "Since we do not know how long you will live, I need to know what you would want me to do if things get worse" or "I am worried that you will have more pain in the future if you do not have surgery."

Dr. Epstein urges specialists to pay attention to their choice of words. "Response rate" is a phrase to be careful with: patients sometimes understand it to mean that they have been treated. Instead of telling patients that they "must do" something, tell them that you are concerned about the consequences if they do not.

Dr. Epstein asks patients what they have heard from other people in their lives or online. Patients sometimes say that people close to them are encouraging them to stop medical treatment or pursue alternative treatments. In this situation, Dr. Epstein asks to speak with that person about their concerns for the patient they love.

He also acknowledges that calculated uncertainties often exist in medicine. He says this leaves the door open for exceptional situations.

"We all want to hope."