Dr Jimmie C. Holland was long convinced that psychological status was a critical factor not just in cancer management, but in illness more broadly.
Jimmie C. Holland, MD
In 1977, when Dr Jimmie C. Holland was approached by the legendary Lewis Thomas, MD, then the head of Memorial Sloan-Kettering Cancer Institute, to establish the first full-time psychiatric service at a cancer research hospital, she arrived with a deep and longstanding interest in the nascent field, but no roadmap to guide her.
“We started with an open mind,” recalled Holland, who was then a psychiatrist at Montefiore Medical Center in the Bronx, New York. “We weren’t sure what we could do. There were few studies to guide us. We were learning too. We did not know, for example, whether psychotropic drugs would help with depression in the context of serious physical illness. We began to generate our own research to answer these questions.”
At the outset, she and her team encountered skepticism on the part of some oncology colleagues about the need for psychiatrists in cancer hospitals, which were for the most part then staffed with social workers, but not mental health professionals.
“We got a mixed reaction at first,” she recalled. “We struggled with this for years. Some oncologists appreciated the need, but others did not see the concern for psychological and social problems as a part of oncologic care.”
But Holland was long convinced that psychological status was a critical factor not just in cancer management, but in illness more broadly.
“Ever since I finished medical school, I’ve been interested in psychological reactions to illness. They’re so varied, and so critical to outcomes,” Holland said. “Cancer is universal. It exists all over the world, in people of every age. It presents us with a paradigm, which can be used to study how people cope and how to help them.”
Early on, one of her most important discoveries was the value of self-reporting.
“Back in the beginning, oncologists relied only on their own observations of subjective symptoms, such as fatigue, anxiety, depression, and even the level of patients’ pain,” she said. “Over the years, it has become clear that the patient’s voice is critically important and that their self-report of symptoms must be considered. From that beginning, we began to develop scales to rate subjective symptoms, which then had to be validated in clinical studies.”
The next step was to find a precise, but user-friendly screening tool that would allow caregivers to quickly assess symptoms.
Back in the beginning, oncologists relied only on their own observations of subjective symptoms, such as fatigue, anxiety, depression, and even the level of patients’ pain. Over the years, it has become clear that the patient’s voice is critically important and that their self-report of symptoms must be considered. ”
—Jimmie C. Holland, MD
“We were seeking a rapid way to include a query about psychological state, and we were impressed with the success of the pain investigators who began to ask a simple question, ‘How is your pain level on a scale of 0 to 10?’ Asked routinely by nurses on each shift, any patient who gave a score of 5 or greater was immediately evaluated to a change in pain medication. We chose the same mode, asking, ‘How is your distress level on a scale of 0 to 10?’” she recalled.
“This proved to be a simple way to integrate a question about psychological issues into the routine care by the oncologist. Research showed that a score of 4 or greater was the algorithm for a second-phase question as to what the nature of the distress was and what referral was needed to address it.”
Holland noted that the National Comprehensive Cancer Network, a consortium of cancer centers, each contributed 1 member to a panel on distress management so that a multidisciplinary committee developed the first clinical practice guideline, which incorporated this rapid screen model. The “Distress Thermometer” has been in use since 1999.
“We now have valid scales for most subjective symptoms, which have been widely validated. New research is also showing the importance in clinical trials of having patients’ own report of adverse events, which has been traditionally reported only by physicians,” she said.
She dismisses the notion that oncology practices are too busy to use this simple tool.
“It’s a red herring to say it takes a lot of time to screen. You start with 1 question and that leads to 1 other to establish the nature of the distress,” she said.
Holland went on to conduct some of the first epidemiologic studies of the psychological impact of cancer on individuals and their families, studying how cancer affects patients, their families, and their caregivers, and how psychological and behavioral factors affect risk of cancer and survival. She was the founding president of both the International Psycho-Oncology Society and the American Psychosocial and Behavioral Oncology Society. In 1993, the American Cancer Society awarded her its Medal of Honor.
Over the course of her career, Holland has witnessed dramatic changes not just in cancer care, but in society’s view of the disease. She recalled how in the 1970s, patients were not told about their cancer diagnosis.
She said, “In addition, there was stigma attached to cancer and fears of contagion. People were afraid to reveal that they had had cancer. But after the 70s, as more patients began to be cured, and as movies and books were written about it, cancer ‘came out of the closet.’”
One of the most significant developments in cancer care, she said, has been the shift from inpatient to outpatient care.
“We used to do most treatment in hospitals, but patients are now sent home and treated as outpatients,” she said. “We did not move the supportive services, like social work, to the clinics, leaving minimal support for patients, families, and staff. The burden on families is enormously different. We increase that burden if we don’t prepare families about issues like dealing with pain.”