Wednesday, June 1
Cancer Survivorship and the Social Worker
Great progress in treating and curing cancer has been made in recent decades, and today there are over 12 million cancer survivors in our country. Over 65 percent of people diagnosed with cancer are living longer than five years after diagnosis (American Cancer Society, 2010). The cancer survivorship movement began twenty-five years ago when a small group of twenty-five individuals met in Albuquerque, New Mexico, and decided to create a grassroots organization to bring attention to the concerns and needs of persons living with cancer. Named the National Coalition for Cancer Survivorship (NCCS), they defined survivorship broadly: “From the moment of diagnosis and for the balance of life, an individual diagnosed with cancer is a survivor” (National Coalition for Cancer Survivorship, 2011). This definition has become the standard definition for cancer survivors in our country.
As the survivorship movement grew, it was decided that an annual celebration of survivorship would be another way to call attention to the fact that cancer was no longer a death sentence, and that people could live full and meaningful lives after cancer. The first National Cancer Survivors Day® was held on June 5, 1988. Since that time, hundreds of celebrations and activities take place each year on the first Sunday in June. The nonprofit National Cancer Survivors Day Foundation supports hundreds of hospitals, support groups, and other cancer-related organizations that host National Cancer Survivors Day events in their communities by providing free guidance, education, and networking. To check for an event in your area, visit www.ncsdf.org.
Cancer is a disease that social workers must pay attention to and understand in some measure. We each will know survivors personally, and many social workers will work with clients in a variety of settings who are living with cancer. Several tenets are central to cancer survivorship. Space limitations allow us to cover only a few: self advocacy, survivorship plans, and hope.
Cancer is too complex to be left entirely to the experts (Institute of Medicine, 2006). When first diagnosed, it seems like the survivor—and their family—have entered a foreign country where they have no directions and cannot speak the language. Survivors are thrust into a “normless” situation and may experience instability, confusion, or panic.
A diagnosis of cancer usually means the interruption of a normal life and career. Appointments with doctors and medical tests take over life. Treatment decisions need to be made. Changes may also be required in roles at work and at home. In sum, a diagnosis of cancer creates a crisis of some intensity for most people and their families.
But crises are time limited, and eventually survivors become better able to handle their diagnosis and treatment. They learn the language of cancer. They know the medications they are taking. They learn about test results, what information they need to keep track of, and what to do in case of an emergency. To successfully navigate the health care system and to get the best possible treatment and care, it is important that survivors become their own best advocate.
The scientific study of long term cancer survivorship is a relatively new area of research. Yet, there are several assumptions derived from the survivorship literature and cancer-related quality of life outcomes that form the basis of a theory of cancer survivorship. These include: regaining a sense of control over life; continuing personal growth; maximizing choices; engaging in medical consumerism; problem solving creatively; advocating for self; and maintaining a hopeful future outlook (Hoffman, 2004).
Research has shown that self-advocacy skills can be learned. Self-advocacy can give survivors feelings of stability and of regaining control of their lives. It helps to build confidence and can improve quality of life. Survivors, as well as families, caregivers, and professionals, should review the Cancer Survival Toolbox®. The toolbox is a self-advocacy training program written by cancer survivors, oncology social workers, and oncology nurses. It teaches survivors how to find information, communicate and negotiate with their health care team and employer, make good decisions, and stand up for their rights. It also includes specialty topics like "First Steps," "Finding Ways to Pay for Care," "Special Topics for the Older Person with Cancer," and special programs on the blood cancers—Hodgkin Disease, Non-Hodgkin Lymphoma, and Chronic Leukemia. The Cancer Survival Toolbox® can be ordered or downloaded for free at the NCCS website at www.canceradvocacy.org or on iTunes at www.itunes.com.
Another tool that helps survivors navigate the complexity of their disease is a survivorship plan. NCCS maintains that survivors who have their plans in writing, “are in a better position to understand the process ahead, advocate for themselves, monitor their health, and participate in decisions about their care—not just their cancer treatment and its side effects, but also their social and emotional needs.” Such a plan includes treatment options for the specific kind of cancer, goals for treatment, and an assessment of support needs. It also outlines a treatment summary with a record of care (specific information regarding tests, treatments, medications, supportive services, and results) as well as a follow-up plan to maintain health and wellbeing (which includes a variety of resources such as support groups and counseling information, possible signs of recurrence, important follow-up dates, financial information, and specific recommendations for healthy behaviors). Survivorship plan information and tools can also be found in the Cancer Survival Toolbox®.
As noted above, the challenges and tasks of living with cancer are many. One of the hardest is learning to live with uncertainty while maintaining hope. Hopefulness and a positive future outlook are essential for a good quality of life after a cancer diagnosis. Hope is a complex concept and people understand it differently. Often times people in the same family disagree about why and how to be hopeful.
Some people equate hope with optimism and most people see optimism as a positive trait. Hope, however, is broader than optimism. It is a way of thinking, feeling, and acting (Clark, 2008). It is not simply wishing for the best, because that is generally passive in nature. Hope means the desirability of personal survival and involves a consideration of the future. Hope is not static. It changes over time as situations and factors change. It represses doubts and fears, but it does not equate with denial. True hope is always based in reality.
Wishing and optimism both have places in our lives, but to live with a disease like cancer, to get through the rigors of treatment, to navigate the complex health care systems, and to fend off society’s negative views about cancer as a death sentence, a person has to have a strong sense of hope.
Hopelessness suggests the loss of all hope and the acceptance that a feared and dreaded outcome will occur. An acute loss of hope is very serious because hopelessness is a condition of inaction in the face of threat. Therefore, a hopeless person becomes a helpless person.
Personal circumstances such as serious illness do not inevitably lead to hopelessness. Even foreshortened life does not in itself create hopelessness; in fact, hope has a way of outlasting the facts of the illness. Above all, hope should never be utterly destroyed. Think of the overwhelming impact of the words, “It’s hopeless.”
Maintaining hope is not always easy and at times of crises, survivors may need additional support and encouragement from their family, health care team, and other cancer survivors. This is not the time for false reassurances; instead, it requires a realistic reevaluation of the situation and a refocusing of hope. It is clear that hope functions as a protective mechanism, while hopelessness threatens a person’s physical, psychosocial, and spiritual health and quality of life.
Social Work and Survivorship
As a profession, we have the capacity to prevent hopelessness, to help refocus and restore hope, and to change situations and society for the better. Social work is the profession of hope, and we are an important voice in the discussion about cancer care, particularly as it relates to those who are most vulnerable to the disease and its consequences. Social workers often see patients diagnosed at later stages than necessary because they did not have access to care. We witness the devastating impact of health disparities on communities of color. Social workers counsel survivors who may have no personal support system. We are the safety set in cancer care, just as we are for many of our nation’s most pressing challenges.
Social workers remain hopeful and work with individuals and families during their most trying moments, including after a cancer diagnosis. This singular capacity, to remain hopeful about the future, allows social workers to work with others to make deep, meaningful changes in their lives. In the coming years, the number of individuals diagnosed with cancer will continue to grow, and the needs will be greater than ever before. The profession of social work has a unique and indispensible role to play as more people become long-term survivors and adapt to their lives as cancer survivors.
Elizabeth J. Clark, PhD, ACSW, MPH, is executive director of the National Association of Social Workers. Located in Washington, DC, the NASW is the largest membership organization of professional social workers in the world with nearly 150,000 members. In addition to promoting, developing, and protecting the practice of social work and social workers, NASW has a strong social justice and advocacy mission. Elizabeth is a member of the Academy of Certified Social Workers and of the National Academies of Practice in Social Work. She sits on the Board of Directors of the National Hospice and Palliative Care Organization, as well as the Institute for the Advancement of Social Work Research and the Action Network for Social Work Education and Research. She is on the Leadership Council for the Council on Social Work Education. She is the co-principal investigator of the National Study of Licensed Social Workers Project.
- American Cancer Society: www.cancer.org
- American Psychosocial Oncology Society: www.apos-society.org
- Association of Oncology Social Work: www.aosw.org
- Coping Magazine: www.copingmag.com
- Help Starts Here: www.helpstartshere.org/health-wellness/understanding-cancer
- Leukemia and Lymphoma Society: www.lls.org
National Coalition for Cancer Survivorship: www.canceradvocacy.org
- Cancer Survival Toolbox: http://www.canceradvocacy.org/toolbox/
- Oncology Nursing Society: www.ons.org
Clark, E. (2008). You have the right to be hopeful. Silver Spring, MD: National Coalition for Cancer Survivorship.
Hoffman, B. (Ed). 3rd Ed. (2004). A cancer survivor’s almanac: Charting your journey. Hoboken, NJ: John Wiley & Sons.
Institute of Medicine of the National Academies. (2008). Cancer care for the whole patient. Meeting psychosocial health needs. Washington, DC: National Academy of Sciences.
Institute of Medicine and National Research Council of the National Academies. (2006). From cancer patient to cancer survivor. Washington, DC: National Academy of Sciences.
National Coalition for Cancer Survivorship. (2011). Retrieved from www.canceradvocacy.org.