CancerCare: Compassion and Passion for People with Cancer

TON January 2016 Vol 9 No 1

CancerCare was started in 1944 with the mission of providing free professional support for people with cancer. The organization offers a spectrum of expanded services for cancer patients and their families and caregivers. The available services include individual counseling, support groups, Connect Education Workshops led by oncology experts, publications, financial assistance, and community programs in New York, New Jersey, and Connecticut. CancerCare is a national not-for-profit organization funded by private money from corporations, organizations, foundations, bequests, and industry.

The Oncology Nurse-APN/PA spoke with William Goeren, LCSW-R, ACSW, OSW-C, Director of Clinical Programs at CancerCare, about the role of an oncology social worker and the skills involved in this important specialty.

What is your role at CancerCare?

William Goeren (WG): I am an LCSW with a specialty in oncology. I am a certified oncology social worker as well as experienced in working with hospitals and not-for-profit groups in this field. At CancerCare, I direct our clinical programs as well as provide individual and group counseling for cancer patients, their caregivers, and the bereaved. Our team of 30 social workers provides individual and group counseling in person in the New York City tristate area as well as in our regional offices in New Jersey, Connecticut, and Long Island. We also provide individual and group counseling on the phone, and group counseling online for our national clients.

What is the job description for an oncology social worker?

WG: An oncology social worker provides support through the cancer trajectory, from first diagnosis to support the client to learn to cope and live with a life-altering illness such as cancer. We provide psychosocial and emotional support for the newly diagnosed patient, at recurrence, to caregivers, and to the bereaved. Cancer leads to many challenges that alter and significantly shift a patient's and caregiver's life. We support them in incorporating cancer and its treatment into their lives and working toward the goal of creating a new balance, which is ever-changing. A diagnosis of cancer is an ongoing evolving situation, like a roller coaster; the impact is not linear.

The Institute of Medicine (IOM), in 2008, in their publication Cancer Care for the Whole Patient, instituted a precedent and an essential service to the oncology psycho-oncology/medical world by stating that "distress instruments need to be part of any assessment of the oncology patient." This mandate essentially integrates oncology social work into the oncology teams. It will fall upon the social worker and oncology nurse to provide understanding of distress in response to a catastrophic diagnosis. For CancerCare, the oncology social worker utilizes pre- and postdistress instruments for individual counseling and patient surveys for groups to comply with these IOM recommendations.

What special skills are needed to be an oncology social worker?

WG: The most important characteristic for any person is the desire or passion to be in the oncology field. Clinical and social work training is a must but desire is an absolute. Without that sense of "here is my niche," one wouldn't survive in this profession. It is complex, challenging, and, at times, overwhelming. At the same time, it is extremely satisfying and rewarding.

Ingredients for the specific skill set include understanding the art and science of clinical work, a knowledge of theoretical and clinical tools, and an appreciation of the impact of disease and catastrophic illness on the patient and family.

At the same time, we have to understand the limitations of what we can accomplish. Some clients just need an objective, unbiased, professional ear. We provide clinical feedback, at times needed direction, professional advice, and suggestions based on experience and knowledge on how to adjust to their new reality. We also suggest resources and specify which services can be helpful to supplement and increase their support network.

How did you become an oncology social worker?

WG: I have always been drawn to the interplay of health and psychosocial issues. In the 1980s, I worked in the early HIV world in New York City and then later I transitioned to oncology after the introduction of highly active antiretroviral therapy in the mid-90s. I was easily able to transfer my skills from HIV to oncology. These 2 worlds have many parallels-including chronicity, the unknowns and unpredictability of health on illness, the impact on the person, the family, and society, as well as the stigma attached to illness.

How do you connect with patients, families, and caregivers?

WG: First listen directly for the overt, direct need and empathically with a "third ear" to get the subtext underneath overt comments. You have to read between the lines and under sentences to unpack what is really going on. For example, a client may call for financial advice but really have other problems underneath this obvious and important concern. You have to break down the problem into smaller stressors and address each of them with concrete suggestions and emotional support.

At CancerCare, we help them strategize and prioritize. For example, they may seek help about what questions to ask, or how to communicate with, their oncologist. We may suggest they bring a notebook of prepared questions or a friend who can take notes. We may work with them on how to talk to their children about their illness or impending death. We may help them negotiate the system. As oncologists become more specialized, there is more fragmentation and the onus often falls on the client to be the organizer of the many disparate, and, sometimes, poorly communicating medical systems.

What is rewarding about your job?

WG: It is rewarding to help people get to a point where they accept that they are living with a disease. There are many bumps in the road but they can learn how to deal with this and adjust to the "new normal." There are many unknowns in cancer, including one of the most normal questions, which is "why"-why does a person get cancer? There is no answer in many cases. We help them see that the real issue is what they are going to do now that they have cancer, and what is in their control. We try to normalize "why" and reframe the discussion to "how."

What is challenging about your job?

WG: It is frustrating and demoralizing when we cannot help in any concrete fashion; for example, a patient whose world is turned upside down by cancer and who has limited or no financial resources or no familial support. It is challenging and rewarding to have conversations with a dying patient that he/she can't, or may not be able to, have with his/her own loved ones. You can help those patients strategize to face the end of life and determine their needs, such as unfinished business, the type of legacy they want to leave, even down to what services they want to have. This is client-driven. You hopefully can empower the patient to communicate their needs to their family. CancerCare social workers cherish these moments.

What do you see as the future of the oncology social work profession?

WG: The movement toward multidisciplinary teams to handle patient care has led to an expanded role for practitioners such as nurses, social workers, and chaplains or other religious leaders. All of these specialties represent a component of the client's life with cancer. For the CancerCare oncology social worker, it is creating and providing a broader professional support structure for the client that addresses the myriad and complex needs a person or family with cancer is facing.

What advice would you give to someone considering becoming an oncology social worker?

WG: Have compassion and passion at your core. Have a willingness to learn about self-care to prevent burnout. There are hazards for oncology social workers and other professionals who care for cancer patients. There is a whole literature on self-care in this regard.

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