In June, Rebecca A. Shatsky, MD, a medical oncologist, turned to Twitter for advice:
“What do you do/say when a patient won’t believe you that they have #CANCER. As an oncologist this comes up every now and then and proves very difficult, looking to hear how others have dealt and what works best to help patients here.”
About a dozen people weighed in, offering various thoughts on how to approach these thorny situations. One oncologist suggested revisiting the conversation a few days later, after the patient has more time to process; others suggested sharing the pathology report or images with their patient.
Another person simply noted that “if a [patient] doesn’t want to believe they have cancer, no amount of evidence will change that.”
Based on the initial responses, “it appears there is a paucity of answers sadly,” wrote Shatsky, a breast cancer specialist at University of California, San Diego.
But for Shatsky, these incidents spoke to another alarming trend: a rampant mistrust of the medical community that is “becoming MORE common instead of less.”
‘Erosion of Trust’
Overall, experts say that situations like the one Shatsky described — patients who don’t believe their cancer diagnosis — occur infrequently.
But denial comes in many forms, and complete disbelief is probably the most extreme. Patients may also downplay the severity of their disease, shy away from hearing bad news, or refuse standard treatment or their doctor’s advice.
Like Shatsky, these experts say they are also seeing a troubling increase in patients who don’t believe their physicians or don’t trust their recommendations.
“I think there’s an erosion of trust in expertise, in general,” said Ronald M. Epstein, MD, professor of family medicine and psychiatry & oncology at the University of Rochester School of Medicine, Rochester, New York. “People distrust science more than they did maybe 20 or 30 years ago, or at least that seems to be the case.”
Denial and distrust in cancer care are not new. These responses — along with wishful thinking, distraction, and minimization — are long-established responses among oncology patients. In 1972, Avery D. Weisman, MD, a psychiatrist at Harvard Medical School, Boston, Massachusetts, wrote his book On Dying and Denying, and ever since, denial and similar responses have been explored in the oncology literature.
Much of this research has focused on the latter stages of illness, but denial can be present at diagnosis as well. One study of patients with breast cancer, carried out nearly 30 years ago, suggested that denial of diagnosis generally occurs early in a patient’s course of illness and decreases over time, but may arise again in the terminal phase of cancer. Another analysis, evaluating this phenomenon across 13 studies, found that the prevalence of denial at diagnosis ranged from 4% to as high as 47%.
An oncologist delivers somewhere between 10,000 to 30,000 episodes of bad news over the course of a career, so there’s always a chance that a patient will respond in a way that’s on the “spectrum of disbelief,” said Paul Helft, MD, professor of medicine and recently retired director of the ethics center at the Indiana School of Medicine, Indianapolis.
Diane Meier, MD, says denial and disbelief are natural, protective responses to difficult or frightening news.
When patients exhibit denial, Meier advises patience and time. Physicians can also ask the patient if there’s a person they trust — a family member or faith leader, for example — who could speak on their behalf about possible next steps.
“The main thing is not to find ourselves in opposition to the patient … or threaten them with what will happen if they don’t listen to us,” says Meier, a professor of geriatrics and palliative medicine at the Icahn School of Medicine at Mount Sinai in New York City.
And physicians should be careful when they feel themselves wanting to argue with or lecture a patient.
“The minute we feel that urge coming on, that’s a signal to us to stop and realize that something is going on inside the patient that we don’t understand,” she notes. “Forcing information on a person who is signaling in every way that they don’t want it and can’t handle it is not a recipe for trust or a high-quality relationship.”
Refusing Expert Advice
Jennifer Lycette, MD, has encountered a growing number of patients who don’t believe their disease should be treated the way she or other oncologists recommend. Some patients remain adamant about sticking with alternative medicine or doing nothing, despite growing sicker.
“I’ve even had situations where the tumor might be visible, like growing through the skin, and people still double down that whatever they’re doing is working,” says Lycette, a hematologist and medical oncologist at the Providence Seaside Cancer Center in Seaside, Oregon.
She encourages these patients to get a second opinion and tries to keep an open mind about alternative approaches. If she’s not familiar with something a patient is considering, she’ll research it with them.
But she makes sure to point out any risks associated with these approaches. While some alternative therapies can support patients through standard treatment, she strongly cautions patients against using these therapies in place of standard treatment.
“The bottom line is to keep the lines of communication open,” she says.
Like Lycette, Helft has been encountering more patients with alternative health beliefs who rely on people outside of the medical system for elements of their care.
In the past, he used to tell these patients that science is incomplete, and physicians don’t know everything. But he’s changed his tune.
“I’ve taken to just telling them what I believe, which is that the majority of things that they hear and are being sold are almost certainly ineffective and a waste of money,” he says. “I’ve come to accept that people are adults, and they make their own decisions, and sometimes they make decisions that are not the ones that I would make or want them to make.”
Delivering Bad News
Helft often sees patients seeking a second or third opinion on their cancer. These patients may not all be in denial about having cancer, but they typically don’t want to hear bad news, which can make treatment a challenge.
To handle these scenarios, Helft has developed a system of responses for engaging with patients. He borrows an approach described in 2008 where he acknowledges a patient’s emotional distress and tries to understand why they may not want to know more.
For instance, he might tell a patient: “I have formulated an opinion about your situation, but it sounds as if you have heard many negative descriptions previously. I don’t want to burden you with one more if you don’t feel prepared to talk about it.”
Trying to understand why a patient is resistant to hearing about their condition may also help build trust. “If you could help me understand your thinking about why you would rather not talk about prognosis, it will help me know more about how to discuss other serious issues,” is one approach highlighted in the 2008 guide.
Behind the scenes, Helft will privately assess how much information about a patient’s prognosis is salient to their decision making, especially if the patient appears to misunderstand their prognosis or if there are various options for treatment over the long-term.
Helft will also ask patients how much they want to know. Do they want to discuss no options? A few? All and in detail?
This approach implicitly recognizes that the information is highly stressful but avoids being overly blunt, he notes. It can also help steer patients on the right treatment track and minimize poor decision making.
Samantha Winemaker, MD, a palliative care physician in Hamilton, Ontario, Canada, finds patients often go through an adjustment period after learning about a new diagnosis. The reaction tends to range from needing time to accept the diagnosis as real to jumping in to understand as much as possible.
Winemaker, who cohosts The Waiting Room Revolution podcast that focuses on helping people deal with a serious illness, encourages physicians to be realistic with patients about their prognosis and deliver news with a dose of gentle truth from the start.
“We should invite patients ‘into the know’ as early as possible, while maintaining hope,” she says.
She calls this approach of balancing hope and reality “walking two roads” and says it extends throughout the illness journey. This way, patients are less likely to be surprised if things make a turn for the worse.
“We should never wait until the 11th hour to give someone bad news,” she says.
‘We All Want to Hope’
Epstein, the family physician at the University of Rochester, Rochester, New York, has listened to hundreds of hours of discussion between doctors and patients as part of his research on communication. He often hears doctors initiate difficult conversations by lecturing a patient.
Many physicians mistakenly believe that if they say something authoritatively, patients will believe it, he says. But the opposite often happens — patients shut down and instinctively distrust the physician.
Epstein teaches doctors to establish trust before providing difficult information. Even when a patient expresses outlandish ideas about their illness, treat them with dignity and respect, he advises. “If people don’t feel respected, you don’t have a leg to stand on and there’s no point in trying to convince them.”
Patients and physicians often leave conversations with discordant views of what’s ahead. In one study, two thirds of patients held wildly different views on their prognosis compared with their doctors, and most had no idea they were at odds with their physician.
In the past, Epstein has tried to close the gap between his understanding of a patient’s prognosis and the patient’s. But more recently he has become less convinced of the need to do so.
“What I try to do now is focus more on the uncertainty there,” he says. He uses phrases like: “Given that we don’t know how long you will live, I just need to know what you would want me to do if things took a turn for the worse” or “I’m worried that if you don’t have the surgery, you might experience more pain in the future.”
He urges doctors to pay attention to their word choices. Use care with the phrase “response rate” — patients sometimes mistake this to mean that they are being cured. And, instead of telling patients they “must” do something, he says that he worries about consequences for them if they don’t.
He asks patients what they’re hearing from other people in their lives or online. Sometimes patients say that people close to them are encouraging them to stop medical treatment or pursue alternative therapies. When that happens, Epstein asks to meet with that person to talk to them about his concerns for their loved one.
He also acknowledges calculated uncertainty often exists in medicine. That, he says, leaves open the potential for exceptional circumstances.
“And we all want to hope,” Epstein says.
For more news, follow Medscape on Facebook, Twitter, Instagram, and YouTube.