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Social Workers in Cancer Care

An important new member of the care team

BY Nicole Marcouiller, DSW, LICSW, OSW-C

The Need for Multidisciplinary Care Teams

A multidisciplinary approach to cancer care is a patient-centered model. This approach to care recognizes that health care professionals with different specialties and skill sets are necessary to meet the full spectrum of patient needs. In their role in a multidisciplinary care team, OSWs approach care from a systems approach. Central to social work training, systems theory provides a framework for viewing human behavior as interconnected through family, community, and social systems. People are affected by systems, and further, people affect the systems in which they live. OSWs recognize and work to advocate and mitigate the impact of inequitable systems and historical trauma while engaging the individual and community strengths that support patients through medical challenges. This comes with the awareness that a patient’s cancer also affects family and community. This understanding has become increasingly relevant in health care settings as discussions of social drivers of health (SDOH) become more engrained in how one approaches care and is particularly applicable in oncology.

The Association of Oncology Social Work (AOSW) started in 1984.

SDOH are the non-medical factors linked to health care outcomes. These include where people live, work, and learn and incorporate factors such as income, education and social support. SDOH are estimated to influence up to 50% of health care outcomes.

An example of this, when considering comprehensive cancer care, is the understanding of financial toxicity (FT). This involves the adverse financial impacts that can come with cancer care, including growing debt and decreasing assets. It can linger for years following a cancer diagnosis and has not only financial implications, but also psychological and medical impacts. Patients with financial toxicity are almost three times as likely to report psychological distress and more than 30% of patients in lowest income groups report delays in care or skipping prescription refills. Almost 20 percent of low-income cancer patients report cutting pills in half to reduce medication expenses. This includes both medications to treat their cancer as well as those to address side effects. With this in mind it is easy to understand how financial toxicity is linked with lower reported quality of life and higher mortality rates.

History of Oncology Social Work  

Early medical social work started in 1905 when Massachusetts General Hospital hired Ida Cannon and Garnet Pelton to assist with addressing the social factors affecting service delivery and patient outcomes. Cannon is credited with creating the field of medical social work based on her recognition of the intimate link between illness and social conditions. Later, Dr. Jimmie Holland promoted the idea of psychosocial distress as the sixth vital sign in medicine and was a key contributor to the development of the National Comprehensive Cancer Network’s (NCCN) distress thermometer. Her work at Memorial Sloan Kettering was the foundation of the field of psycho-oncology and helped pave the path for OSWs today.

Oncology social work began to gain traction in the 1970s. With Dr. Holland’s work, there was a growing recognition among cancer settings of the need to have a member of the team that understood, and could address, the psychosocial impact of a cancer diagnosis and its treatment. Moreover, as cancer became increasingly treatable, the long-term impacts of survivorship reemphasized the need for dedicated professionals that support patients with these long-term needs. The Association of Oncology Social Work (AOSW) started in 1984 as a way to bring together OSWs active in the work and wanting to expand the profession. Today, AOSW has over 1200 members working to promote best practices for patient care.

As the advancement of the profession has continued in the decades since AOSW started, recognition of the needs for psychosocial screening and support for cancer patients has also grown among cancer organizations. In 2008, the Institute of Medicine (now the National Academy of Medicine) published its report, Cancer Care for the Whole Patient: Meeting Psychosocial Health Needs. This report highlighted the needs to prioritize psychosocial cancer care. By 2015, the American College of Surgeons Commission on Cancer (CoC) required accredited programs to screen and address psychosocial distress. The National Comprehensive Cancer Network (NCCN) and the American Society of Clinical Oncology (ASCO) have also provided guidelines that support the need for psychosocial cancer care.

Oncology Social Work Today

Today, oncology social workers are the largest providers of psychosocial care in oncology settings in the United States. OSW scope of practice ranges from direct practice to advocacy and advancing the needs of cancer patients through systemic change. In direct practice social work, intervention crosses a broad spectrum of patient needs. OSWs meet patients where they are and aim to support the patient in exploring their goals and addressing any barriers to those goals of care. This can include very practical resource concerns including transportation, food insecurity and financial challenges. OSWs are active in supporting patients as they navigate community, state and federal systems. This role can include guidance through the process of applying for services, understanding potential eligibility for different benefit programs and direct connection to services.

Like all jobs in health care, the role of the OSW can be complex. While OSWs must maintain awareness of those resources and policy changes that may be affecting access, the work goes well beyond resource navigation. Access to appropriate psychological support from cancer through survivorship or end of life is vital to maintaining quality of life. Anxiety and depression, increased risk of suicide ideation, specific death anxiety and existential distress are not simply side effects of cancer care, but elements of living with a potentially life limiting illness. The majority of OSWs are clinical social workers-masters, trained and independently licensed after years of supervised practice. Licensed Independent Clinical Social Workers (LICSW) are trained to diagnose and treat mental health conditions. OSWs are commonly providing supportive counseling, support groups, and when settings allow for it, they provide billed psychotherapy services to cancer patients.

Primary financial benefit to having strong oncology social work teams in place comes from saved costs.

Vulnerable Populations

Just as cancer does not discriminate and anybody may find themselves in need of care, all patients may at times find themselves in need of social work support. When thinking of cancer patients and social work, practical and financial resource needs easily come to mind; however, addressing the mental health effects of cancer treatment, survivorship and caregiving are also significant. Though many such effects go undiagnosed, it is estimated that almost a third of cancer patients struggle with depression or anxiety. Despite this, a recent study indicated that 73% of patients with depression in cancer care go untreated, with only 5% being connected to a mental health professional. Anxiety and depression during cancer care have been linked with poor treatment adherence, lower quality of life, higher self-reported pain and higher mortality.

Certain populations are more vulnerable to certain impacts of cancer care and should receive special consideration in assessment and outreach. Older adults living on a fixed income may struggle with a sudden increase in medical expenses. Access to Medicare for this population can provide a resource other age groups do not have, though it is important they are connected to a plan that meets their needs. On the other hand, young patients are often particularly vulnerable to the long-term financial toxicity that comes with cancer care. They may not have had the years in a career to save money and have a cushion for coverage, they are also often faced with missing formative career building years, and the impact of treatment may lead to challenges as they reintegrate into employment. This population may also face unique challenges in relationship development and family building.

Patients living in rural communities face their own challenges in accessing cancer care. They often face travel and housing costs to access treatment. As rural cancer clinics face budget constraints and clinics close, these problems will only increase. Twenty-five percent of the U.S. population lives in rural communities, and access to treatment is increasingly difficult for these patients. On average they travel twice as far as urban patients for treatment, and for cancer patients, this is a heavy burden. While telehealth has mitigated some of these challenges, cancer patients need regular labs and to be on site for infusions and radiation, so it cannot replace all care. Further, rural communities have more internet access issues, creating additional concerns. Social workers are often tasked with identifying transportation resources or connecting patients with local lodging as they travel to more urban settings for care.

Beyond Patient Care: Benefits of having a Social Worker on your Team

While clinical social workers in a health care setting, including oncology, can bill for psychotherapy visits as well as for advanced care planning visits, infrastructure in many settings is not set up for that billing. Principal Illness Navigation (PIN) codes are also available for reimbursement though the payments can be quite minimal.

Beyond psychotherapy codes, primary financial benefit to having strong oncology social work teams in place comes from saved costs. Though often overlooked, social workers regularly save health care systems money. Studies indicate that having social workers active on teams leads to improved standard quality metrics.

Moreover, social workers are consistently shown to have a positive affect on health care and service utilization as well as cost savings. Social workers are important to efficient discharge plans in inpatient settings and known to prevent patient rehospitalizations. There is extensive research to show that social work improves health outcomes and reduces patient costs. A systems approach provides them with the perspective to consider factors in the community that can support or hurt patient outcomes and mitigate those needs efficiently and effectively. 

Financial toxicity often presents as medication nonadherence or delayed treatment decisions and missed appointments and scans. When we consider the noncompliant patient within the context of SDOH and FT, as social workers do, we begin to see that without adequate health care coverage or without the income to pay for their medications, for example, patients are facing choices about how to pursue care. Additionally, cancer patients with a mental health diagnosis are shown to incur higher health care costs than those without. Oncology social workers have the capacity to address these needs, supporting providers’ treatment plans and patients’ ability to access care safely and with fewer service interruptions.

Looking Ahead

Unfortunately, the challenges facing cancer patients are growing. As the treatments improve in their effectiveness the number of patients living as survivors grows with it. This very positive development comes with the reality that those patients must live with long-term follow-up, as well as the physical, emotional and financial aspects of care. As oncology care providers understand, cancer care does not end with the final treatment cycle. Simultaneously, policy changes are affecting insurance access and funding for community programs, exacerbating the challenges patients are already navigating. Social workers in the oncology space will continue to be an important part of the solution. There is a tight link between direct practice and advocacy for improved access and best patient outcomes. Social workers can thread that needle, working to meet those patient needs while supporting the work of the multidisciplinary care team. This ultimately will lead to the best outcomes for patients.

Nicole Marcouiller, DSW, LICSW, OSW-C leads the social worker care team at Minnesota Oncology.