What to do if you think your doctor isn't giving you the full truth - The Washington Post
"There's a 99 percent chance this is nothing," said my internist encouragingly, referring me to a cancer specialist after I'd had repeated abnormal blood counts.
The oncologist I saw next reviewed my unusual symptoms, promptly asked about a tiny lump on my neck and mentioned Hodgkin's disease. The diagnosis was confirmed the next day with a biopsy.
That was years ago and my treatment was successful. But did my primary care doc really send me to a cancer specialist thinking it was nothing serious? A study in Health Affairs found that more than 55 percent of 1,891 physicians surveyed admitted they often or sometimes presented a rosier prognosis than the facts supported.
"I've had doctors minimize things almost every time I see them," said Trish Rose Malloy, a graphic designer in Bucks County, Pa., whose abdominal cramping and back pain turned out to be ovarian cancer. "It's my primary care doctor's MO to keep me calm and not alarmed 'until we know more.'"
Not wanting to worry a patient is one reason for "bright siding," a term popularized by the late Barbara Ehrenreich that means unsubstantiated reassurance or sugarcoating of the truth. Other times, it's 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 acknowledge themselves when a patient is declining, so you don't get the message.
A dodge by a physician can feel invalidating and frustrating when a patient or a caregiver suspects all is not well. Ellen Lutwak, a copywriter in West Los Angeles, questioned a doctor when her mother, in her late 80s, began ranting in "anger off the charts." The doctor, focused on her mother's heart disease, shrugged off Lutwak's concerns. Her mother's dementia was confirmed later at a Southern California hospital when she was admitted for cardiac care.
Lutwak believes her mother's primary doctor recognized the dementia but didn't want to address it, perhaps out of concern about her mother's potentially angry reaction. Research in 2021 from Alzheimer's Disease International found that stigma and lack of awareness of dementia among doctors remain major barriers to diagnosis around the world.
You can't handle the truth
Withholding information for the patient's best interest was the norm in medicine for centuries. Doctors were the gatekeepers of health and their duty was to provide hope and comfort. It wasn't until 1979 that the majority of U.S. physicians said they'd tell a patient when they had cancer.
Since then, the doctor-patient partnership model has replaced that sort of medical paternalism. Yet doctors still make routine judgments about how much to tell patients.
Too much information can be unhelpful 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 so they shouldn't be mentioned or that a patient is too fragile to handle difficult news?
Experts say such assumptions can reflect an implicit bias that can lead to health disparities. Poorer outcomes can result when a doctor's unconscious feelings about skin color, gender, disability, age or ethnicity influence what gets shared.
In my case, I think that my being 28 at the time was a primary reason my doctor didn't raise the possibility of cancer — either due to the unlikelihood at my age or not wanting to deliver bad news to someone so young.
Clinicians may also soften language, trying to be kind or not scare a patient, said Lea Brandt, director of the University of Missouri Center for Health Ethics. They may say "a growth" vs. "tumor," "overweight" vs. "obese."
"Using euphemisms is problematic if the patient walks away not realizing how serious the condition is," she said. Someone who is not informed they will probably die within months, for example, is robbed of time to tackle their bucket list.
There is a sweet spot 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 of Rochester School of Medicine and Dentistry. Doctors aren't trying to deceive patients — but empathy may get in the way of being more direct. Sometimes physicians delay disclosing a bad diagnosis until they think a patient is ready to understand and emotionally absorb the news, he said.
When Malloy was diagnosed with late-stage ovarian cancer in 2018, she was confused by her oncologist's positivity.
Malloy pointed out the dismal survival statistics she had seen, while her oncologist responded he had patients living five years and longer after treatment. He told her that the information she had found on the internet was dated. But "he was careful not to give any concrete statements about survivorship," Malloy said.
Malloy, who took part in a National Institutes of Health-sponsored clinical trial through her doctor, said she felt he had minimized her concerns about potential unknown side effects of the trial drug. Instead, he emphasized that he would be closely monitoring her and that her participation would benefit other women.
Physicians may frame a recommendation in positive terms to persuade patients to take their advice, Brandt said. This includes understating risks or exaggerating benefits if they think the helpfulness of a treatment outweighs the negatives.
Today, Malloy is in remission. She has not been told yet whether she received the drug or the placebo in the ongoing trial, but she strongly suspects she is alive because she got the drug. Despite her feelings that he had minimized the risks of the clinical trial, she credits her doctor — and the medicine she got in the trial — with saving her life.
Do we have to talk about that?
Years before her own cancer bout, Malloy watched her mother's doctor skirt the subject of dying during her mother's treatment for breast cancer.
"My mom was clearly ready for hospice, yet my family could not get [her physician] to actually suggest it," she said. "We were waiting for guidance — for him to tell us 'it's time' — and he was waiting for us to inquire about it."
Finally, after six years of treatment, Malloy's family brought up hospice; her mother died at home a few weeks later at age 69. Had the doctor been forthcoming about how close to death their mother was, the family would have wanted her in hospice care much sooner, Malloy said
"It's a conspiracy of silence," said Epstein, who noted the situation that Malloy's family found themselves in is not unusual.
As a health-care communications researcher, he frequently reads transcripts with vague or evasive language surrounding death — the 'D' word, as he puts it. Examples he has encountered include "We'll just see what the next scan shows," or "We'll consider chemo again once you regain your strength" (while knowing the patient won't).
The reluctance of a doctor to admit uncertainty or lack of knowledge is another form of nondisclosure.
Tests often don't reveal what's causing back pain or fatigue, for instance, but patients may pressure 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 fail to broach subjects due to their own discomfort, Campbell said. "A classic example is obesity," he said, noting a study that showed doctors who were overweight themselves were less likely to bring it up.
If a doctor fails to ask about a sensitive matter, Epstein said patients must do it themselves. For example: "I have a personal problem with sexual function. Is that something I can ask you about?"
Sometimes, getting the short-shrift on information is simply due to a time crunch. A doctor who is running late may skip over the side effects of a procedure if they see it as standard care. Or a burned-out physician may not be in the state of mind to ask if you have questions at the end of an office visit. Or a doctor may also be in denial about a patient's decline so families don't get that information.
Feel like you're being soft-balled, falsely reassured, minimized, not told enough or pushed in one direction? "Some physicians have received no training in communication skills," Epstein said.
If you don't want your doctor to hold back, say so, he said. "Let the doctor know that even if it's bad news, you want to hear it." Usually, you'll get a franker response — but it's your choice to seek another physician if the doctor continues to be vague, Epstein said.
Comments
Post a Comment