Keeping ‘death’ out of cancer conversations

How we discuss a feared disease might be changing.

For decades, the conversation around cancer has been synonymous with certain phrases. Turn on the evening news, drive by a cancer center bill board, stop in at a fundraiser and you’ll likely catch buzzwords like “cure,” “conquer,” “breakthrough” and “fight.”

This language has worked well for medical centers and advocacy groups, bringing in patients and raising billions in research dollars over the years. But there are two terms you probably won’t find front and center: “death” and “dying.” That’s even though cancer is a leading cause of death in the United States, second only to heart disease.

The American Cancer Society, which boasts 2.5 million volunteers, has not used those terms in major campaigns.

“For an organization whose mission is to reduce the number of avoidable cancer deaths and help people live longer, high quality productive lives, it’s difficult for me to imagine how we’d position this fact that people die from cancer as the centerpiece of a general ACS campaign,” says Dr. Rich Wender, chief cancer control officer for ACS.

Wender says dig deeper and you’ll find plenty of mention of death, especially in its materials on preventing cancer deaths and in its epidimiology reports. The group has a section on end of life care. Lots of people attend ACS events to honor a loved one who has died or is dying.

But let’s be honest, who would really want to see death featured in a campaign?

The general absence of the term may make sense from a marketing perspective, but some worry the tendency to instead focus on treatment and battle narratives stifles important, tough conversations about the realities of the disease and how to really help those with cancer reach their goals.

“In the world of cancer advocacy and the patient space that’s out there now about cancer, the idea of dying is a pretty charged thing,” says Dr. Anthony Back, a palliative care doctor and oncologist at the Universitiy of Washington in Seattle. “And it turns out that while there’s a great deal of discussion and dialogue and chat about where got for next treatment, what ask for and what to be aware of, there’s much much less dialogue in how to handle it if the treatments really aren’t the thing.”

Yet it’s those very concerns that have been fueling an internal shift in the American Cancer Society’s own narratives and language around the disease.

Why cancer marketers left out the D-word

Talking about death “is one of the hardest conversations to have,” according to Dr. Back, who leads physician trainings on how to have tough conversations with patients who have advanced or terminal cancers. The ACS sponsors some of them.

Vish Viswanath, a professor of health communication at Harvard’s School of Public Health and the Dana Farber Cancer Center, isn’t surprised groups like ACS may not prominently feature death or dying in their campaigns.

“The reason I think for the skittishness comes partly cultural. We don’t want to talk about death,” he says. “If you equate success as life, then it’s difficult accept lack of success, which is death.”

Vishwanath also points to political reasons why groups seeking public support might avoid addressing death head on.

“If you don’t talk about it very carefully, then you’re attacked with a frame such as death panels and cutting off treatment to deserving people,” he says.

Psychologists like Jeff Greenberg out of the University of Arizona have also found that people, whether in the U.S. or elsewhere, really aren’t wired to react well to the word death, at least not initially.

“When you bring death to the front of people’s minds, they want to get rid of it,” he says.

Greenberg, who has a book out this spring about how people react to death and process the language of death, says people hear the word and their first reaction is to avoid it, to run away, to think about something else.

“We try to put them out of our focal attention, we try to detract ourselves,” he says. “So you’re going to lose a lot of the target audience if you bring death to mind in a very blatant way.”

That’s probably not a good tactic for a group trying to raising awareness and support.

Greenberg says the way we process death, after that initial response, is more nuanced. It can motivate people to do something if it’s framed as a positive, if it creates hope, if it increases one’s sense of self worth. If it generates too much fear, though, and the message loses its effectiveness.

Wender says ACS’s own marketing research on what energizes people to take action, to volunteer “clearly indicates that a focus on the opportunity to avoid a cancer death, to prevent cancer altogether is motivating.”

Death and dying outside of that context isn’t.

“Activating campaign messages focus on research, to improve treatment options, to detect cancer early,” he says.

An evolving narrative

While death is not featured prominently, Rebecca Kirch, with ACS, says the underlying discourse about it is changing, as is the society’s broader cancer narratives.

“I absolutely agree we have not yet brought ourselves to the place where talking about difficult news, difficult challenges, a poor diagnosis or prognosis, that we have not yet brought ourselves to a place where we’ve really equipped people,” says Kirch, who is director of quality of life and survivorship, a position that’s only four years old at ACS.

Kirch says you probably won’t see death and dying front and center, but the society is taking on the issue, within a newer narrative called quality of life. Since 2007, ACS has spent $30 million related initiatives, which include promoting palliative care. And it’s in part a response to an aging population that more and more is dealing with cancer.

“It’s a pivotal time, this is sort of the inflection point that we’ve needed to advance what really matters to people whether they’re living or dying,” says Kirch.

ACS has long focused its messages on preventing cancer, improving treatment options, early detection, surviving. The group is the “official sponsor of birthdays.” Probably its biggest campaign has been spearheading the War on Cancer. The society has been key in shaping this battle narrative.

And those are campaigns that have really resonated for the public I think largely bc people don’t want to lose their lives early to a dastardly disease like cancer.” she says.

Kirch says in many ways that war on cancer has outlived its usefulness. It’s faced growing criticism in recent years. It’s not one war. Cancer isn’t one disease. And many feel the metaphor implies that if you’re dying, then you’re losing, you’re not fighting hard enough.

Kirch says framing this new conversation around quality of life is a better way to engage people in those difficult issues.

“If we keep forcing people to think about what want as they’re dying, we’re missing out on an opportunity to really do that effectively by starting from where they’re really focused,” she says. “And that’s on how they want to be living until they’re dead. I think that’s an important nuance that matters a great deal.”

Physicians like Dr. Anthony Back think the conversations could be even more frank. More than half a million Americans died of cancer last year. The reality, he says, is that while new treatment approaches show promise, they’re in early stages. Cancer is a really hard disease to figure out how to cure.

“You know, those kinds of public conversations help us design policies and health systems that really care for people in terms of what they really need.”

Even so, he’s glad to see the conversation evolve and realizes this isn’t something that’s going to happen overnight.

“You know these are culture changes and they take a long time,” he says.