"Social workers are just as important in the treatment of cancer as chemotherapy," says Lawrence N. Shulman, MD, professor of medicine and deputy director of clinical services for the Abramson Cancer Center at the University of Pennsylvania in Philadelphia.
In 2021, it would be difficult to imagine providing high-quality cancer care without social workers, he says.
The concept that cancer care is about making a diagnosis and administering therapy "is just not a valid hypothesis," said Shulman, who is also director of the Center for Global Cancer Medicine. "We need to meet all the needs of cancer patients."
Social workers are trained to help patients and their families cope with the physical, emotional, and social disruptions of cancer in ways that doctors don’t, he says.
"When it comes to the patient's psyche, family dynamics, and work, social workers can provide great advice and counsel," he says. For some problems, the patient will feel more comfortable talking to a social worker, and this conversation could have a direct impact on the patient's quality of life and even on the prognosis, he says.
Social workers have the expertise to identify and overcome roadblocks that can interfere with treatment outcomes, says Timothy W. Mullett, MD, professor of thoracic surgery at the University of Kentucky and medical director of the Markey Cancer Center Research Network in Lexington, KY.
Mullett became a passionate advocate for distress monitoring of cancer patients and the integration of social workers into the practice at Markey after his own brush with cancer.
He had just returned from his second deployment to Afghanistan, where he served as a lieutenant colonel in the Army Reserve Medical Corps.
"I had some abdominal pain, but we weren't in a facility that could do much of an evaluation, so I continued to work as a surgeon there," he recalled. "I had lost a fair amount of weight, and as I was coming home, I could feel that there was a mass in my liver."
He was diagnosed with stage IV liver cancer, and treatment began within days.
He recognizes that he was not a typical cancer patient, as he understood how to navigate the health care system and was able to receive a personal level of care from health care professionals who knew him. But even with these advantages, he was bowled over by the psychosocial impact of cancer.
"I'd be lying to you if I said I didn't have any anxiety every time I lie down on the CT scanner," he said.
It was this experience that led to his advocacy for oncology social workers. "I saw this was a way we could improve every patient's care, something that we could emphasize in all our programs and in presentations at national meetings.
"We're providing medical or surgical care, but we're not experts in the barriers that exist in a patient's personal life that interfere with their care," he said. "A social worker is absolutely the perfect partner to be able to take care of the entire patient."
Last year, Mullett was appointed chair of the Commission on Cancer, a subgroup of the American College of Surgeons that oversees the accreditation of 1,500-plus community cancer care facilities serving 70% of cancer patients in the United States.
In 2015, after consultation with the Association of Oncology Social Workers, the commission formally integrated social work into cancer care by requiring psychosocial distress screening and response as a new standard of care for accreditation.
Distress Screening Tools
Social workers use distress screening tools, such as the Distress Thermometer and Problem List developed by the National Comprehensive Cancer Network, to determine a patient's psychosocial needs during cancer diagnosis, treatment, and follow-up care.
A patient-centered, multidisciplinary care plan is then developed for preadmission, transfer, and discharge.
Systematic screening for distress has become the key to identifying the "otherwise unmet biospychosocial needs" of patients with cancer, said Sophia K. Smith, PhD, , associate professor at Duke University School of Nursing, in Durham, NC, and colleagues, in a review in the American Society of Clinical Oncology Educational Book.
The review describes a shift in perception taking place. Not so long ago, social work was seen as a resource for addressing problems such as helping a cancer patient who is struggling with transportation costs get money for gas.
Today, it lies at the heart of psychosocial oncology, a relatively new field.
The shift has been propelled by emerging evidence of the size of the problem. Up to 40% of patients with cancer experience significant psychosocial distress, beginning at diagnosis and continuing throughout treatment, the transition to posttreatment survivorship, and even the end of life. Symptoms include anxiety, depression, posttraumatic stress, fatigue, sexual dysfunction, and impaired cognition.
Left untreated, the clinical impact can be profound, ranging from lack of adherence to medical treatment to increased mortality, the authors point out.
"Given the overall morbidity and mortality associated with cancer, the prevalence of psychosocial distress in oncology settings is not particularly surprising," Smith and colleagues comment.
"What has been less expected is the emerging evidence of increased mortality associated with at least one expression of psychosocial distress: depression."
Even the most compassionate doctors and nurses lack the training required to deal with the psychosocial effects of cancer, said professor at the University of Michigan School of Social Work in Ann Arbor.
"If you do not have a social worker at your cancer center, you are missing someone trained to help patients cope with psychological, emotional, spiritual, and existential challenges that come with a diagnosis of cancer," he says.
However, the existing evidence has not convinced insurers to fully reimburse centers for social work services, pointed out Zebrack.
For the past 15 years, his research at the University of Michigan has focused on proving that social work is an essential component of cancer care. One study published in 2017 showed an association between social work and the rates of emergency room use as well as of hospitalization.
"We believe that we are helping people, but we are also challenged to prove this empirically with data," he said. "We really want to build the scientific evidence that demonstrates the contribution of social work specifically to achieving quality in cancer care to insurance payers making cost decisions."
This is an issue that Mullet has also embraced. His new mission is to have oncology social workers recognized and reimbursed for their critical role in the care of patients with cancer. "This is really important to me," he said. "There is very little in the way of billing or reimbursement or support for those programs."
Data demonstrating the value of social work in cancer care "may not be in the form of a survival benefit or a randomized controlled trial, but [we have data] in terms of the patient experience and addressing the barriers to care," he said.
Every patient with cancer and their family should have access to an oncology social worker, said Dunique Yuill, LCSW, director of the Information Resource Center at the national office of the Leukemia and Lymphoma Society, in Rye Brook, New York. "Adding an oncology social worker to your clinic or practice may not be a revenue-producing position, but it is absolutely value-adding and cost-saving for the entire practice."