We paid our last respects to my nephew Rob a few days ago. Just 52, he fell victim to a rare and aggressive throat cancer that may not be thwarted by surgical procedures or chemotherapy. Five months after his diagnosis, not able to eat or drink, and with the tumor in the throat constricting his windpipe, he opted against a tracheotomy and peacefully accepted his fate.
Rob lost a good portion of his palate and tongue during what turned out to be a fruitless surgery before enduring three rounds of body-wasting chemo, so the return of the cancer simply deepened his misery. Still, it had been an extraordinary gesture, one that dramatically illustrates the risk-versus-benefit equation we all must calculate when considering treatment options for a serious illness.
These are tough decisions in almost any situation, but there’s plenty of evidence to suggest that they be difficult when your physician is involved.
This might seem counterintuitive. We seek out doctors, in the end, because they’re specifically educated to diagnose and treat illnesses. However the language they employ when discussing options often steers us within the wrong direction. As lead author Daniel Morgan, MD, writes inside a recent JAMA editorial, the traditional risk-versus-benefit conversation creates “an inaccurate comparison and could have implications for patient-physician decision-making.”
That’s because “risk” emphasizes uncertainty and “benefit” seems to be assured, Morgan explains. So, whenever a doctor outlines the possible downsides of the procedure and compares it using its guaranteed upside, we tend to lean toward the more certain outcome — even though the benefits may not actually outweigh the risks. “Behavioral science has shown that minor changes in language or framing can significantly alter judgments and decisions, including in healthcare settings,” he notes.
In one study Morgan cites, 69 percent of subjects chosen over postpone treatment when their ductal carcinoma in situ, or DCIS, was described simply as “abnormal cells” while 53 percent of another group opted for treatment when the same diagnosis was called “noninvasive cancer.” This mirrors a 2021 University of Sydney study, which argued that taking out the “cancer” label from a low-risk condition leads to fewer unnecessary procedures.
This “language” problem may partially explain why the incidence of cancer has risen dramatically in recent years even as mortality from the disease continues to be declining. As H. Gilbert Welch, MD, MPH, explains in STAT News, screening protocols popularized within the 1980s — especially mammography and PSA testing — have sparked an “irrational exuberance” for early detection along with a subsequent spike in overdiagnoses.
Doctors defended these actions by noting that early detection led to longer lives, Welch writes, although many physicians were completely conscious of the logical fallacy: Start the time earlier in the course of a disease as well as your patient will always appear to live longer — whether or not the treatment does nothing to extend their actual lifespan. And the early-screening protocol tends to identify cancers that are either benign or so slow-growing that they will never become a threat, a phenomenon that further “proves” the life-saving advantage of the screening protocol.
“Physicians felt compelled to judge small spots on the kidney and thyroid that they stumbled upon while imaging to many other purpose simply because these abnormalities might be cancer,” Welch notes. “Skin moles became a source of concern and an chance of biopsy. The incidence of kidney cancer doubled, thyroid cancer tripled, and melanoma increased sixfold — while their death rates remained stable.”
I doubt that changing the way doctors characterize an illness — and just how they describe the pros and cons of various treatment options — will have much effect on our healthcare system’s infatuation with cancer screening. But Morgan argues that merely swapping the notion of “risk” with “harm” when discussing treatment would offer patients a clearer view of their options, which may reduce unnecessary procedures.
A patient who opts for a mammography, he explains, has a one-in-1,000 chance of preventing death by cancer of the breast but a three-in-1,000 chance of an overdiagnosis and a six-in-10 chance of the screening producing a false positive. “For an older woman considering breast cancer screening,” he writes, “framing the discussion around harms versus benefits as opposed to the more nebulous ‘risks’ might facilitate the choice to discontinue non-recommended screening.”
These are all personal, highly emotional decisions, and so i don’t want to suggest there’s an easy path to a choice that will satisfy all involved — or always produce salutary results. After all, sometimes those choices are not concerning the patient’s well-being at all. When Mom was diagnosed with colon cancer at 80, for example, her decision to undergo surgery and chemo — and endure its debilitating effects for two years — had less related to her desire to cling to life compared to unwillingness of some in her own family to let her go.
I don’t know how Rob’s doctors described his illness or the things they recommended, but I’m told that he opted to suffer through what he and his wife suspected would be a series of futile procedures so his two kids and the rest of us would have time to get accustomed to the idea of his eventual departure. If this became clear it was time to go, and his loved ones were as prepared anyone can ever be prepared for this, he was able to say goodbye on his own terms. No words can adequately describe his faith, courage, and compassion for the reason that moment.
