. . . Focuses on the Human Side of Cancer
Forty years ago, the United States ‘declared war’ on cancer. Thanks to the determination and skill of scientists and physicians, by 2011 cancer survivorship in the U.S. had crossed the 12 million mark and overall 5-year survival rates had increased by nearly 20%. And yet, while finding a cure for cancer had been given top priority, there was another side, the human side, of cancer, that was largely overlooked.
Prior to the ’70s, the human side of cancer treatment was not a primary concern, in part because there were few survivors. As the number of survivors increased, however, so did awareness of the psychological and social impact — or “human side” of cancer.
“I was interested in how people coped with illness and what it was really like to go through cancer treatments because they were even more arduous back then,” explained Jimmie C. Holland, MD, the Wayne E. Chapman Chair in Psychiatric Oncology, Department of Psychiatry, Memorial Sloan-Kettering Cancer Center. She also pointed out, “There was this taboo that you couldn’t tell somebody they had cancer because the word was frightening enough that they might give up hope. Until we got over that barrier, we couldn’t really study them.”
At the time, Dr. Holland, a talented psychiatrist, was married to James F. Holland, MD, Distinguished Professor of Neoplastic Diseases at Mount Sinai Medical Center — a medical oncologist who was a pioneer in chemotherapy research for acute lymphoblastic leukemia. As his wife, she had a front row seat to observe groundbreaking successes in oncology. In 1977 she became one of the first full-time psychiatric physicians in a cancer research hospital and is now recognized as a founder of psychosocial oncology.
Psychosocial Oncology Progresses
The subsequent development of appropriate interventions that dealt with cancer patients’ anxiety, pain, or depression while undergoing treatment contributed to the growth of the field of psychosocial oncology. The fledgling subspecialty continued to slowly evolve, with the emphasis on providing psychological and social interventions as a complementary component of biomedical treatment.
Responding to the increasing worldwide interest, the International Psycho-Oncology Society (IPOS) was formed in 1984, with Dr. Holland in the lead. Two years later, in 1986, the American Psychosocial Oncology Society (APOS) was formed — again under the leadership of Dr. Holland.
“Studies have shown that at least one-third of patients have significant problems in the course of their illness where they need psychological help. We began to study interventions, such as using medications for depression, and we also had a role in controlling pain, nausea and vomiting. That’s when things began to change,” said Dr. Holland.
In 1997, a significant breakthrough occurred when a National Comprehensive Cancer Network (NCCN) panel addressed the practical delivery of psychosocial services in oncology. These experts were instrumental in creating an essential tool needed to effectively screen and measure problematic patient symptoms. First, they selected the term “distress” to describe a patient’s psychological and social difficulties. This same body then created the Distress Thermometer. Similar to the pain rating scale, the Distress Thermometer is a one-question screening tool that asks patients to rate their distress level on scale of zero (no distress) to ten (extreme distress).
“If the level of distress is four or more, we know that we should ask a few more questions: ‘Why is this, and what are you upset about?’ The goal of this tool is to make it simple for oncologists and their staff to integrate the screening for distress into routine care,” Dr. Holland explained.
Another milestone occurred between 2007 and 2008 when an Institute of Medicine (IOM) committee studied the delivery of psychosocial services to cancer patients and families. The resulting report, Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs (2008), stated that in order to deliver high-quality cancer care, health-care professionals must address their patients’ psychosocial health needs.
“That was an enormous benchmark. To have the IOM do a full review of our field and to ask, ‘Are these interventions scientifically valid and sound?’ The answers were ‘Yes. These interventions work,’” Dr. Holland said.
Providing Psychosocial Oncology for Those in Need
After more than 30 years of commitment to developing the profession, psychosocial oncology specialists are now routinely incorporated into oncology teams at comprehensive cancer centers. In rural areas or for those without health insurance, however, there are often minimal resources available. To address this issue, APOS offers a free Helpline (866-276-7443), which assists cancer patients in locating professionals who are skilled in cancer-related distress management in their region.
“I think we’ve changed the global understanding of the psychological issues of cancer. We deal with the science of care — taking care of the whole person,” Dr. Holland said. “Now the real issue is to make sure that we identify patients who need help, and get them the interventions they need.”