A month after receiving a terminal diagnosis because of pancreatic cancer in 2007, Carnegie Mellon professor Randy Pausch delivered “The Last Lecture: Really Achieving Your Childhood Dreams.” It was popular on YouTube, and Pausch appeared on several media platforms to deliver the lecture’s positive messages.
Oncology social workers are usually part of a multidisciplinary team, providing a multitude of services to people with cancer and their families. Some of the services oncology social workers provide are guiding individuals and families through health care systems, assisting with insurance procedures and logistics, and providing emotional support.
“I’ve never understood pity and self-pity as an emotion,” Pausch said in his lecture, where he openly mentioned his diagnosis. “We have a finite amount of time. Whether short or long, it doesn’t matter. Life is to be lived.”
This focus on quality of life is one of the things palliative care workers can provide to individuals like Pausch, who died in 2008. Palliative care is interdisciplinary, person- and family-centered health care for individuals and families affected by serious or life-limiting illness. The goal of palliative care is to relieve pain, other symptoms and stress of the illness, thereby optimizing quality of life.
Palliative care is also one of several services oncology social workers can provide to people living with cancer, says Jennifer Bires, program coordinator of patient support services and community outreach at the George Washington Medical Faculty Associates Cancer Center in Washington, D.C.
Oncology social workers help people cope with or adjust to the illness, guide individuals and families through health care systems and help them understand medical terms, she says. Oncology social workers also assist with insurance procedures and logistics, and, of course, provide emotional support, Bires adds.
“If you talk to 10 different social workers, you’ll get 10 different answers of what they assist with,” she said. “They provide help to patients and their families, from the start of diagnosis to survivorship, and, if it unfortunately comes to it, the end of life.”
The role of the social worker is an integral and fundamental part of all oncologic care, and patients view the service they provide as an indispensable bridge to their emotional, spiritual, physical and social health support, says Jeanny B. Aragon-Ching, a physician and an associate professor of medicine in the Division of Hematology and Oncology, Department of Medicine, at the George Washington University Medical Center Medical Faculty Associates.
“There’s a lot to be said about working in a multidisciplinary team approach where social work is one leg of the chair in the oncology work,” Aragon-Ching said. “This is a necessary part of oncology in order for us to be able to deliver care for our patients in the best possible way.”
Growing job opportunities
Oncology social work has been around since the 1960s, according to licensed clinical social worker Penny Damaskos, president of the Association of Oncology Social Work.
“Oncology itself is a relatively new field,” she said. “Palliative care for patients was included at the beginning, and later, care that was specialized for patients in post-treatment and survivorship developed.”
NASW member Grace Christ is an oncology social worker with more than 30 years of experience. She co-edited — with NASW members Carolyn Messner and Lynn Behar — the recently released “Handbook of Oncology Social Work: Psychosocial Care for People with Cancer.”
In the late 1990s to the early 2000s, an initiative began to examine the treatment of people with cancer, Christ says.
“During that time, it was realized that care for cancer patients was very treatment-(focused), very physically focused, so there was an emphasis to integrate more psychosocial components,” she said. “Cancer is a disease that affects people in many different ways besides the physical.”
Bires says psychosocial care is becoming more important in oncology, and because of that, more job opportunities for social workers are expected.
“Oncology social work is a hopeful field because as the community at large realizes cancer is not just a ‘medical’ illness — it affects the whole being of a patient, and their families — we will see more jobs open up,” she said.
Cancer treatments are now more effective and people with cancer are living much longer, which complicates issues surrounding the disease, Christ says.
“There are various problems that occur around that that people need help with,” she said. “Things like decision-making and treatment selection; personal and financial issues; personal and family life. (There is) importance for oncology social workers because of more people living with cancer.”
Oncology social work practice
People living with or affected by cancer can be referred to social workers, though use of oncology social work services is voluntary, Damaskos says. Individuals and families can be referred through formal mechanisms — such as by a doctor or nurse — and through informal ways, by a friend or family member. All individuals with cancer receive a distress screening, usually at the onset of their diagnosis, she says, and the results of the screening can serve as another platform to refer them for social work services.
“A cancer diagnosis is a shock to the system — mentally, emotionally and physically,” Damaskos said. “Social worker training is perfect for this field and is really welcome. Oncology is an area of social work where we work very closely with a multidisciplinary team of people. Our voice and our contributions are very well-received and regarded.”
Sometimes people are referred for practical reasons, says Carolyn Messner, a licensed clinical social worker and director of education and training at CancerCare in New York.
A person may need help paying rent or finding transportation to get to treatment and doctor’s appointments, she says. They may need help figuring out how they can continue to keep working, how to talk to their children about their diagnosis and life issues in general.
“(People with cancer) don’t just have health problems, they’re people, so they have all the other problems with life like family, life goals, work issues and dealing with thoughts of ‘how could this happen to me?’” Messner said. “Social workers can help with all of that.”
Even someone who has finished treatment and is cancer-free can experience a crisis where a social worker can help him or her navigate their feelings, Damaskos says.
“They’re no longer scrutinized by medical teams, they’ve faced their own mortality and they have time to reflect on all that’s happened,” she said.
Technology has changed the way some people with cancer receive social work services, such as giving them the option to join online support groups and to receive counseling by phone, says Iris Cohen Fineberg, immediate past-president of AOSW who is associate dean for academic affairs and associate professor at the School of Social Welfare at Stony Brook University in New York.
She says these methods are not for everyone, and, like anything online, it’s best to use some caution.
“It can be a great advantage in some cases. If someone lives in a really rural area, technology gives them access to something they wouldn’t have access to,” Cohen Fineberg said. “But so much of communication is nonverbal, and you lose a lot of that when you’re not with somebody. You lose facial expressions, you lose physical reactions, and I think that has an impact.”
The Affordable Care Act has also had an impact on the way people with cancer receive care, and Damaskos says it has been a huge — and will continue to be a huge — help for such individuals.
“Because of the ACA, it’s no longer a penalty for having a pre-existing condition,” she said. “If a cancer patient loses their job, runs out of COBRA and has to buy insurance, they will no longer be penalized for getting a new insurance, which was an issue in the past.”
A lot of people living with cancer and survivors in the 20- to 30-year-old range, who are least likely to be covered by insurance, can now — through the ACA — stay on their parents’ insurance for a longer period of time, Damaskos said.
But the basic things social workers provide haven’t changed, she says, like individual, family and couples’ therapy, and group work.
“That group work might be online or on the telephone and not in person as much as it was,” she said. “But it expands our assessment muscles, listening skills and our techniques of how we help people through.”
Getting started
Some social workers may choose to specialize in oncology for personal reasons, like Bires, whose mother died from cancer when Bires was a teenager.
“I remember thinking I wanted to work with cancer patients, but I didn’t necessarily want to work in medicine. I wanted to work with people on that emotional level,” she said. “If you can make someone’s life a little better at such a terrible time, it’s something that’s very rewarding to do.”
Others see oncology as an interesting way to be part of someone’s life, like Leah Hellerstein, a clinical social worker at the University of California San Francisco Helen Diller Family Comprehensive Cancer Center.
“I started in inpatient oncology, and I found the outpatient realm as a way to work with people on an ongoing basis, and have an ongoing relationship with them,” she said. “I get more involved with their care and how they progress. Oncology is an interesting field, and there’s a lot to work with.”
Damaskos says she didn’t realize she wanted to be in oncology until she started working in it, and had an epiphany.
“I felt that helping people at one of the most intense kind of crisis points in their lives — helping them re-stabilize; communicate with their families, with their medical team; helping them to activate resources in the community; helping them have a consistent thread to who they are and who they are becoming — is an unbelievable privilege,” she said.
However a social worker may be called to oncology, Messner recommends that sooner is better. She says students should look for internships at a medical center where oncology services are offered.
“There are many different ways to get into this field,” she said. “For students who are interested in oncology, they can request a placement in graduate school.”
But even if it doesn’t happen at the student level, it’s still possible to get into oncology later, she says.
“Sometimes it happens by plan,” Messner said, with many health care social workers’ careers moving them in that direction.
Working in an oncology inpatient setting can be emotionally intense, Hellerstein says, and it may not be for everybody. She encourages those interested in the field to get some hands-on experience by volunteering in a clinic or outpatient setting.
“Talk to and get information from an oncology social worker about patient needs,” she said. “The general emotional and physical needs of a patient can vary, depending on the type of cancer, where they’re at in their lifespan, and especially if they’re younger or older.”
Bires says volunteering at a local organization that provides services to people with cancer is a good place to start. Do some online research to find local places, she says, go to support groups and reach out to potential oncology social work mentors.
“Organizations like AOSW are full of people working in the field,” she said. “Finding a mentor or becoming a part of an organization is a great way to educate yourself on what it’s like to be a cancer patient and what it’s like to work with a cancer patient.”
Although it’s a growing field, opportunities are opening up and it’s possible to find a role, there are a limited number of oncology social work jobs right now, Bires says.
“It’s not impossible, but you have to be dedicated and passionate about it,” she said. “It’s a field you can always grow in.”