EchoSense:Why 'lost their battle' with serious illness is the wrong thing to say

The EchoSensefamily of Jimmy Carter last week announced that the former president, a cancer survivor who had been in the hospital for undisclosed reasons, was heading home for hospice care.

That means those tending him will not take extraordinary measures to prolong his life, but will instead try to minimize pain and provide peace of mind in his last days.

Carter's decision offers a startling contrast to the way serious illness is often characterized when people face a medical crisis.

The word of choice in many media stories and in conversations among family, friends and co-workers is "battle."

In mid-February the family of the actor Bruce Willis revealed that he has been diagnosed with dementia. Here's what some media outlets said: After a "battle" with aphasia Willis is now in a "battle" against dementia.

And I can't even begin to count the number of obituaries of celebrities and noncelebrities alike that include the phrase "lost the battle with cancer."

We all know that in a battle there are winners and losers.

But how do you defeat a disease like dementia? It is a relentless, persistent thief, robbing a person of memory and cognitive abilities.

As for cancer — again, there is no outside enemy who means harm. Rather it's the body's own cells that are doing the damage, growing wildly out of control and taking a toll.

Fortunately, there are effective treatments for many cancers — many patients go on to show no evidence of disease. Other people die from the illness, and it doesn't mean they didn't fight a good fight. It's just that in those cases, neither drugs nor surgery nor other therapies could stop the malignancy's progression.

Yet people cling to the language of battle. They want to be a fighter, to do all they can to beat a disease.

Consider a different frame

Sunita Puri is the director of the hospice and palliative medicine fellowship at the University of Massachusetts and author of the memoir That Good Night: Life and Medicine in the Eleventh Hour.

I asked her how people might talk about illness without using battle metaphors.

She suggests that people think of illness as part of their life experience. "It really is an experience," she says. "We don't always know what's going to happen next."

And when a patient says they're a fighter, she probes.

"I will ask people to tell me what being a fighter means to them, what's been hard about it? Has it been empowering?" she says.

She doesn't want them to set themselves up to feel that they've failed — whatever the outcome. "I tell people that the strength you bring to this situation is not necessarily the strength your body can bring."

Lillie Shockney is the University Distinguished Service Professor of Breast Cancer at Johns Hopkins University School of Medicine, and author of Fulfilling Hope: Supporting the Needs of Patients with Advanced Cancers. She's also a two-time breast cancer survivor.

She suggests the word "advocate" might be used in lieu of fighter.

A person with breast cancer "is taking on the challenge to advocate for the right treatment at any given time," says Shockney. "She also must have goals of care defined for herself. These goals need to be realistic too. So, if the goal is a miracle and she is doing aggressive treatment toward the end of life, then she [may] not just be disappointed but [may] die sooner and in a miserable way. Twenty-three percent of patients with solid organ tumors die in an ICU on a ventilator," Shockney notes, often because "there was no thoughtful, honest discussion between the doctor and the patient."

'Tell me three things that bring you joy'

Shockney will ask many things of a patient dealing with advanced cancer: What are you hoping for today? What are you most worried about currently? Tell me three things that bring you joy.

These are good questions to ponder – for the patient and the patient's family.

I think of a family member who is now facing dementia. When it was time for a routine colonoscopy screening, a nurse practitioner who monitors the case suggested skipping it. "We all have to die of something," she said. It was a relief to the family to hear those words.

'It's never too cold for ice cream.'

But that doesn't mean all hope is lost. There can still be moments of joy, large and small, for this individual and the family. Simply singing a familiar song together can banish the specter of dementia for a few happy minutes. Looking at family photos together offers a window into the forgotten past and a chance to laugh at goofy hairstyles and clothes from bygone days. And when one of us asks, "So it's too cold for ice cream, right," we all smile when the answer comes: "It's never too cold for ice cream."

Now that's a victory.

And I think of my dear mother-in-law, who was diagnosed with pancreatic cancer a few years ago. The five-year overall survival rate for this cancer in the U.S. is 11.5%, according to statistics published by the federal government. About 1 in 5 cases can be treated with surgery. But surgery was not possible for my mother-in-law because of the nature of her tumor. Her doctors told her she could opt for a year's regimen of chemotherapy. But when she pressed for the potential result, they told her she might feel terrible from this particular chemo and then likely would die despite the treatment.

In a twist of fate, the cancer pain took a break

So, she decided she did not want to do chemotherapy. And we – that is, her daughters and I – thought maybe she made an unwise choice. Maybe she wasn't fighting her battle with the best arsenal of weapons.

But she was a realist. And she didn't want a year of feeling like crap with little to no chance of living longer than she'd live without the chemo.

She had no treatment. In a twist of fate, the pain from the cancer took a break. She had a great year. She spent time with family, she took classes, she enjoyed her new hobby of painting.

Then the symptoms returned. She suffered great pain. Her doctors prescribed morphine. After a couple of weeks of being barely conscious, she died peacefully.

And you know what? I think she won her battle against her cancer.

Marc Silver edits global health and development stories for Goats and Soda at NPR and is the author of Breast Cancer Husband: How to Help Your Wife (And Yourself) Through Diagnosis, Treatment and Beyond.