Marilyn Kapaun was given a new “distress thermometer” at Piedmont Hospital shortly after her cancer diagnosis earlier this year.
She took one look at the slip of paper with a scale of 0 to 10, and didn’t hesitate. She was a 9.
“It was very instinctual,” said Kapaun, a 47-year-old attorney who lives in Atlanta. “I remember feeling high levels of distress. It was the distress of not knowing — had the cancer spread to lymph nodes? I wanted surgery right away, but I had to wait a few weeks.”
Before long, Kapaun was referred to a social worker, but by then, she was feeling better after learning her cancer was in the early stages. While she’s continued to face ups and downs during a roller coaster cancer journey (several factors limited her treatment options; however, the tumor had shrunk between the time of diagnosis and surgery and her prospects were good), the distress screening placed her emotional well-being front and center. It has remained an area of attention.
Beginning in January, the American College of Surgeons’ Commission on Cancer, which establishes national treatment standards and accredits cancer centers in the United States, will require providers to evaluate cancer patients for distress and refer them for services if needed. The thermometer asks about a person’s emotional state, and whether they are feeling sad, but it also asks about physical woes such as fatigue and swelling as well as practical matters such as transportation and insurance concerns.
The goal is to identify patients early on — and throughout treatment — who may need emotional support, and to make sure those who do need it get connected with a wide range of resources available.
“We are bringing up the subject and we are saying we know this is extremely stressful, and we are giving them the opportunity to talk about it,” said Jackie Lawrence, an oncology social worker at Piedmont Hospital.
In many cases, metro Atlanta cancer treatment centers have been ahead of the curve and using distress tools for several years. Centers have been fine-tuning them and expanding services to help patients navigate through every phase of their cancer journey.
For example, Emory University’s Winship Cancer Institute has been using questionnaires to measure anxiety and depression levels for more than a decade, and at a time when Jim Hankins was the only licensed clinical social worker. He now leads a team of 10 social workers at Winship.
“It is a snapshot in that moment,” Hankins said about the distress thermometer. “It opens the door to conversations and dialogue.”
On the one hand, it’s normal for people with cancer to experience depression. Hankins said research suggests as much as 70 percent of people with cancer experience a major bout of depression, with the low point often occurring at the time of diagnosis. Once a patient starts treatment and has a plan of action, the patient tends to feel better, Hankins said. Others, however, continue to struggle, and some may be depressed and not even realize it (perhaps sleeping too much or too little, or losing interest in hobbies).
Neil Heronime took the “distress thermometer” after he was diagnosed with Hodgkin’s lymphoma about a year ago. He gave himself a 2 on the scale of 0 to 10. But while going through chemotherapy and at the urging of his wife, Wendy Yang, Heronime realized his level of distress was actually far greater, and he sought out the help of a social worker at Piedmont.
“I remember thinking, ‘It’s not like I can’t handle this, but something is not right,’” said Heronime, of Atlanta. “Looking back now, I can’t imagine going through the treatments and all of the steps without the help.”
Cancer centers, especially larger ones, have expanded their services to include everything from group therapy to peer mentoring programs to yoga and massage therapy, cooking classes and even art therapy to ease suffering and help people get better. Social services departments also will help patients try to come up with solutions for getting a ride to treatment and filling out applications to get financial assistance for medications.
Kapaun has enjoyed the cooking classes, and she has started a macrobiotic diet. She has taken a meditation class, and a laughing yoga class at Chapman Family Cancer Wellness at Piedmont.
“There are peaks and triggers and this is a roller coaster of emotions, and the object is to have a working relationship so they know they have a place to go when they need help,” said Piedmont’s Lawrence.
At Northside Hospital, which also has many support services, Nikeisha Whatley, licensed professional counselor manager of behavioral health services, said the hospital is in the process of creating a new Psych-Oncology Outpatient Department to help ensure the distress screenings undergo an in-depth assessment and make sure there is adequate follow-up care. That care would include not only emotional support services but help with medication management as well.
“This is a turning point as a way of treating the whole person,” Whatley said. “When we increase the quality of life, we increase the quantity of life.”
WHY THIS IS HAPPENING
The American College of Surgeons’ Commission on Cancer accredits close to 1,500 cancer programs that care for about 70 percent of the nation’s cancer patients. The new approach in screening and measuring a patient’s distress comes after mounting research shows that cancer care often fails to address a patient’s psychological needs and practical matters like transportation. In other words, when someone is diagnosed with cancer, you need to not only attack the disease, but you must also address the emotional and day-to-day practical needs of the person.
While cancer centers do not have to use the “distress thermometer,” many are using this tool, and praising this simple questionnaire as a quick way to help determine a patient’s needs.
According to the National Comprehensive Cancer Network, which developed the tool, any patient who scores a 4 or above should receive some type of intervention. (The scale goes from 0 to 10.)