Detecting Distress

Larry Opelt

Photo by Edda Pacifico

Larry Opelt, 69, came to Adrian, Mich., from Ohio as a young man in pursuit of a career. After more than 35 years working for the city, he retired as director of finance, opting to serve on community boards as a volunteer and enjoy time with friends and family. Almost every morning at 8, Opelt still makes his way to the Tip Top Restaurant for breakfast with the other regulars.

His plan to ease into retirement took a turn Christmas 2011 when a pancreatic cancer diagnosis slowed him down more than he'd expected. Getting through several months of powerful chemotherapy and radiation suddenly seemed like the easy part as acute pain overcame him last fall.

"Because of the location of my tumor, I wasn;'t a candidate for surgery," Opelt says. "And the tumor is probably the source of the pain. It became unbearable and treating the pain with morphine wasn't much better due to the side effects."

He recalls a defining moment last Thanksgiving as he drove his youngest of two daughters to the airport after a family celebration. At his next appointment with his oncologist, Opelt recalls filling out paperwork before he saw the doctor.

"There was a thermometer and I had to check off how I was feeling. At that point, I was really down, feeling sad. That's what I marked. I was sad and worried about my family. By the time I left that day, a social worker had come in to talk to me about it."

What is Distress?

Karen Hammelef, R.N., M.S., former-director of Rogel Cancer Center Patient and Family Support Services, says screening patients for distress is as important as any other basic vital sign. It should be monitored at all points of care and should change according to what's happening in the lives of patients, their cancer and how they're responding to treatment. Distress screening is endorsed by the American College of Surgeons as well as the Institute of Medicine.

Distress is the response a person has to any symptoms caused by cancer or its treatments. It could be that a patient is concerned about finances, isn't sure how to communicate with kids about what's happening or has pain that's become a problem. Anxiety or depression may keep a patient from adhering to a treatment regimen.

"We're all doing much better than we were last fall," he says. "It helped to talk through some things. Now I'm looking forward to playing with my granddaughters."

Whatever the origin, unaddressed distress becomes a continuous cycle that builds upon itself.

How to measure distress

Rate how much distress you’ve experienced in the last week:

0 is low, 10 is high

5 categories of symptoms -- practical, family, emotional, spiritual/religious, physical

A response of 4 or above results in action by your health care team to assist with your concerns.

Opelt's distress screening was a red flag for Rogel Cancer Center social worker Chris Henrickson, L.M.S.W., B.C.D., who was able to intervene, talk through the issues and help Opelt find resources.

"In addition to worrying about their health, patients also worry about their families," Henrickson says. "In Mr. Opelt's case, he was concerned about how his family was coping. We talked through those issues and how they're very normal concerns. We were able to direct the family to resources right in their local community."

Opelt has responded well to his chemotherapy treatment, which halted the growth of his tumor. A morphine pump was installed to manage his pain directly, without leaving him with all the side effects. He now has a six-week reprieve before his next scan, which has prompted him and his wife to plan a trip to South Carolina to visit one of their daughters and two granddaughters, who bring him incredible joy.

Setting the Bar for the Nation

The distress thermometer screening tool Opelt filled out in the Multidisciplinary Pancreatic Cancer Clinic is the result of national clinical practice guidelines updated in 2012 by the National Comprehensive Cancer Network for distress management.

Hammelef and Patient and Family Support Services are working with clinicians to roll out the use of the screening tool to cancer patients at the pancreas clinic, the Canton Health Center and, ultimately, the entire Rogel Cancer Center.

Cancer-related distress describes a variety of experiences that affect up to 60 percent of cancer patients at some point during their care. Nearly 90 percent of cancer patients reported no problem filling out the screening form. Even more agreed they appreciated being asked about their emotional wellbeing.

"If we didn't ask the question, you'd continue to be distressed," says Hammelef. "Unaddressed distress leads to increased emergency room visits, lower quality of life and failure to follow treatment plans. Evidence behind screening shows patients feel their care improves significantly from a form that takes less than one minute to complete."