What to do if you think your doctor isn’t telling you the whole truth

“There’s a 99% chance it’s nothing,” my internist told me encouragingly, referring me to a cancer specialist after I had repeated abnormal blood counts.

The oncologist I saw next reviewed my unusual symptoms, quickly asked about a small bump on my neck, and mentioned Hodgkin’s disease. The diagnosis was confirmed the following day by a biopsy.

That was years ago and my treatment was successful. But did my GP really send me to a cancer specialist thinking it was nothing serious? A study published in Health Affairs found that more than 55% of 1,891 physicians surveyed admitted that they often or sometimes had a rosier prognosis than supported facts.

“I got doctors to downplay things almost every time I saw them,” said Trish Rose Malloy, a graphic designer from Bucks County, Pa., whose abdominal cramps and back pain turned out to be a ovarian cancer. “It’s my primary care physician’s MO to keep me calm and unalarmed” until we know more. “”

Not wanting to worry a patient is one of the reasons for “light facing,” a term popularized by the late Barbara Ehrenreich that means unsubstantiated assurance or watered-down coverage of the truth. Other times it is to avoid offending a patient or creating conflict, such as not suggesting to a parent that a child needs to lose weight. Or doctors may not have the heart to recognize themselves when a patient refuses, so you don’t get the message.

A doctor’s dodge can feel crippling and frustrating when a patient or caregiver suspects that all is not well. Ellen Lutwak, a writer in West Los Angeles, interviewed a doctor when her mother, in the late 80s, began ranting about “angry off the charts.” The doctor, focused on his mother’s heart condition, ignored Lutwak’s concerns. Her mother’s dementia was later confirmed at a Southern California hospital when she was admitted for cardiac care.

Lutwak believes his mother’s primary doctor recognized the dementia but was unwilling to fix it, perhaps out of concern about his mother’s potentially angry reaction. Research conducted in 2021 by Alzheimer’s Disease International found that stigma and lack of awareness about dementia among doctors remain major barriers to diagnosis around the world.

You can’t handle the truth

Withholding information for the benefit of the patient has been the norm in medicine for centuries. Physicians were the guardians of health and their duty was to give hope and comfort. It wasn’t until 1979 that the majority of American doctors said they would tell a patient they had cancer.

Since then, the doctor-patient partnership model has replaced this type of medical paternalism. Yet physicians still make routine judgments about what to tell patients.

Too much information can be unnecessary and confusing, said Eric Campbell, professor of medicine at the University of Colorado and director of research at the UC Center for Bioethics and Humanities. But should a doctor decide that medical choices are over a patient’s head and therefore should not be mentioned or that a patient is too fragile to handle difficult news?

Experts say such assumptions may reflect an implicit bias that can lead to health disparities. Poorer outcomes can occur when a physician’s unconscious feelings about skin color, gender, disability, age, or ethnicity influence what is shared.

In my case, I think being 28 at the time was the main reason why my doctor didn’t bring up the possibility of cancer – either because of the improbability at my age, or because he didn’t want to break bad news to someone so young.

Clinicians can also soften the language, trying to be nice or not startle a patient, said Lea Brandt, director of the University of Missouri Center for Health Ethics. They can say “a growth” versus “tumor”, “overweight” versus “obese”.

“The use of euphemisms is problematic if the patient walks away without realizing the seriousness of the disease,” she said. Someone who is not informed that they will probably die in a few months, for example, is deprived of time to tackle their to-do list.

There’s a middle ground between protecting the patient from emotional distress and being open, said Ronald Epstein, professor of family medicine, oncology and medicine (palliative care) at the University’s School of Medicine and Dentistry. of Rochester. Doctors don’t try to mislead patients, but empathy can prevent them from being more direct. Sometimes doctors delay disclosing a misdiagnosis until they think a patient is ready to understand and emotionally absorb the news, he said.

When Malloy was diagnosed with advanced ovarian cancer in 2018, she was confused by her oncologist’s positivity.

Malloy pointed to the dismal survival statistics she had seen, while her oncologist replied that he had patients living five and more years after treatment. He told her that the information she had found on the Internet was dated. But “he was careful not to make any concrete statements about survival,” Malloy said.

Malloy, who participated in a National Institutes of Health-sponsored clinical trial through her doctor, said she felt he downplayed her concerns about potential unknown side effects of the trial drug. Instead, he stressed that he would watch her closely and that her participation would benefit other women.

Doctors can frame a recommendation in positive terms to persuade patients to follow their advice, Brandt said. This includes underestimating the risks or exaggerating the benefits if they think the usefulness of a treatment outweighs the harms.

Today, Malloy is in remission. She has not yet been told whether she received the drug or the placebo in the ongoing trial, but she strongly suspects she is alive because she received the drug. Despite her feeling that he downplayed the risks of the clinical trial, she credits her doctor — and the drug she got in the trial — with saving her life.

Should we talk about it?

Years before his own battle with cancer, Malloy watched his mother’s doctor dodge the subject of death during his mother’s treatment for breast cancer.

“My mother was clearly ready for hospice, but my family couldn’t convince (her doctor) to suggest it,” she said. “We were waiting for advice – for him to tell us ‘it’s time’ – and he was waiting for us to find out about it.”

Finally, after six years of treatment, the Malloy family raised the hospice; his mother died at home a few weeks later at the age of 69. If the doctor had been clear about how close their mother was to death, the family would have wanted her in hospice care much sooner, Malloy said.

“It’s a conspiracy of silence,” said Epstein, who noted that the situation Malloy’s family found themselves in was not unusual.

As a health care communication researcher, he frequently reads transcripts containing vague or evasive language surrounding death – the “D” word, as he puts it. Examples he encountered include “We’ll just see what the next scan will show” or “We’ll consider chemo again once you get your strength back” (although knowing the patient won’t).

A doctor’s reluctance to admit uncertainty or lack of knowledge is another form of non-disclosure.

Tests often don’t reveal what’s causing back pain or fatigue, for example, but patients can press a doctor for a diagnosis. Rather than saying “I don’t know,” doctors often attribute a patient’s symptoms to stress, Epstein said.

Doctors also may not bring up topics because of their own discomfort, Campbell said. “A classic example is obesity,” he said, noting a study that showed overweight doctors themselves were less likely to talk about it.

If a doctor doesn’t ask about a sensitive topic, Epstein said patients should do it themselves. For example: “I have a personal problem with sexual function. Is that something I can ask you? »

Sometimes obtaining short-term information is simply due to a lack of time. A doctor who is late may overlook the side effects of a procedure if they treat it as standard care. Or an exhausted doctor may not be in the mood to ask you questions at the end of an office visit. Or a doctor can also deny a patient’s decline, so families don’t get that information.

Do you have the impression of being lumped together, falsely reassured, minimized, not sufficiently informed or pushed in one direction? “Some doctors haven’t had any training in communication,” Epstein said.

If you don’t want your doctor holding back, say so, he says. “Let the doctor know that even if it’s bad news, you want to hear it.” Usually you’ll get a more candid answer — but it’s your choice to seek another doctor if the doctor continues to be vague, Epstein said.

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