Having spent the last 38 years as an oncology social worker, Ginny Vaitones, MSW, OSW-C, has experienced first-hand the changes sweeping cancer care and has witnessed their impact on patients and their families. She currently works at the PenBay Medical Center, a 99-bed community hospital in Maine. We asked Ms. Vaitones to share her thoughts about the oncology social worker’s role on the multidisciplinary cancer care team, and to describe the challenges she faces as an oncology social worker in a community setting, particularly in relation to immuno-oncology (I-O).
The Oncology Social Worker’s Role
Oncology social workers wear many hats, all of which are geared towards providing patients and families with the support and resources they need to navigate an excruciatingly difficult situation. The social worker’s participation as part of the multidisciplinary team usually begins at the time of a patient’s diagnosis, goes on throughout the disease continuum, and involves three principal roles:
- Counseling patients to help them understand what will be happening over next several weeks or months.
- Supporting staff as they try to educate patients.
- Helping staff and patients by obtaining co-pay assistance or prior authorization for the patient’s anti-cancer drugs. This may involve working with insurance companies, financial advocates in our hospitals, or co-pay assistance programs.
The social worker’s degree of involvement is somewhat dependent on the care setting. For example, in a community hospital the relationship [with the patient] may be an ongoing one, rather than more episodic. In a larger hospital setting, typically [social worker] involvement occurs when specific needs are identified.
The Role of An Oncology Social Worker Includes:
- Liaising with or working as a financial advocate to provide information and support for medical and insurance coverage and securing drugs (e.g., accessing co-pay assistance, prior authorization)
- Providing psycho-social-emotional-spiritual support and skill-building for individuals and families coping with a cancer diagnosis throughout the disease continuum
- Assisting with decision-making and life-planning
- Leading education and support groups
- Serving as a patient and family advocate within the healthcare system and coordinating care
- Liaising with or working as a patient navigator to ensure patients are receiving all aspects of the care plan
- Helping patients transition to palliative care, hospice, or survivorship
- Performing distress screening assessments to identify and address stressors
- Being involved in research
Social Workers and I-O: Opportunities and Challenges
Most of the time the oncology social worker’s scope of work is similar regardless of treatment choice; however, I-O agents introduce a new wrinkle. On the one hand, the recently approved I-O agents have created well-deserved excitement. For the first time, a substantial number of patients with advanced and metastatic cancers may have a treatment opportunity that carries the possibility of inducing a significant and durable treatment response.
Treatment with an I-O agent can move patients from a place of “this disease is likely terminal” to one of “I might survive.” On the other hand, this move is one fraught with emotional complexities and challenges including, “How do I get it?” and “Will it work for me?” So, as part of the care-delivery team, oncology social workers may encounter a variety of situations where patients need their skills and support.
Once a patient is ready to begin a treatment regimen, social workers can play a key role in helping the patient adhere to his or her treatment. For instance, by screening patients for distress at the outset or by assessing the patient’s literacy level (Note: The American College of Surgeons Standard 3.2 psychosocial distress screening went into effect in 2015). Many people read at a very low level, and social workers can help identify if patients need visual resources to help them better understand their treatment. So an oncology social worker’s role can involve really getting to know patients in order to figure out the best path to treatment success.
Another way that oncology social workers, particularly those in the community setting, may assist patients is by serving as financial advocates. This role is especially important in terms of I-O, because patients may hear about a newly FDA-approved or experimental drug or agent, only to find out that this therapy is not covered by their insurance plan. In this instance, the social worker may play a very hands-on role, working to understand what a patient’s insurance covers and helping the patient to fill out applications for co-pay assistance to secure oral and intravenous medications.
Another challenge is that due to the extremely high costs of these new agents, community hospitals may not stock FDA-approved I-O agents and will only order an agent after securing funding. This, in turn, can lead to treatment delay and increased patient anxiety, so the social worker’s role will involve supporting both the patient and staff during this waiting process.
In addition, the community hospital setting may not offer access to clinical trials relevant to a patient’s situation, and the nearest participating trial site may be inaccessible to the patient for a variety of reasons such as distance, transportation, work, and support. This loss of hope can be devastating for patients, especially if there are no other options beyond the standard of care. In this instance, oncology social workers are involved in a lot of support work, especially when it seems that patients have reached the end of treatment options. Sometimes, in these circumstances, there is nothing a social worker can say or do except literally be present with patients in their pain, helping them to regroup or begin to consider supportive or hospice care.
Steps to Support Patients Receiving I-O Treatment
- Get to know your patients through communication and assessments; learn about and understand their strengths and limitations
- Identify and address barriers to care (e.g., literacy, cultural differences, health beliefs)
- Recognize the impact health disparities may have on the success of the cancer care plan (e.g., age, ethnicity, religion, family/community dynamics, socio-economics)
- Be present – Be there when your patient receives disappointing information and help them regroup, assess next steps, and articulate what they hope to achieve
Best Practices and Resources
The Association of Community Cancer Centers (ACCC) is a real leader in the field with excellent resources on its website (accc-cancer.org) for oncology social workers. I urge my colleagues to go there first for information about best practices. Also, remember that pharmaceutical companies try hard to provide resources and information that social workers can turn to, and peer-to-peer learning within our professional organization is also a valuable resource.
Additional Resources for Social Workers
- Association of Oncology Social Work
- Association of Community Cancer Centers
- The pharmaceutical company for the agent of interest
- Each other – Listservs utilized by fellow oncology social workers often provide a wealth of information
- Cancer Support Community’s Frankly Speaking About Cancer
- Society for Immunotherapy of Cancer