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PROMOTING SUSTAINABILITY THROUGH COLLABORATION
Nursing responds: Coming together to improve the care of survivors of adult cancers by Pamela J. Haylock and Carol P. Curtiss Cancer care has changed significantly in the nearly 30 years we’ve been oncology nurses. In the early days of our practices, almost all chemotherapy treatments were administered during two- to five-day inpatient stays and were often accompanied by severe, unrelieved retching and vomiting. It was not unusual for patients to be sedated throughout the administration period. Surgery for cancer was aggressive, often disfiguring. Radiation therapy caused serious skin reactions. Most notable was the grim survival rate: Only about 30 percent of our newly diagnosed cancer patients would still be alive in five years. Cancer patients who did survive were told by doctors, nurses and society in general that they were simply lucky to be alive and should be thankful, regardless of significant health problems or concerns that either persisted or surfaced after treatment. The situation is different now. For many, cancer is no longer viewed as an automatic death sentence, but instead thought of and managed as a chronic illness. There are now more than 10 million cancer survivors in the United States (National Cancer Institute, 2006). Close to 70 percent of all people diagnosed in the United States today are expected to survive beyond five years (American Cancer Society, 2006). Newer therapies treat cancer more effectively with much less toxicity than those previously available. Traditional pharmaceutical agents combined with nontraditional complementary treatment modalities provide significant levels of symptom management, markedly reducing the stressors and traumas formerly linked to the acute phase of the cancer experience. However, as people live longer after cancer diagnoses, new health problems and challenges emerge. While some cancer survivors experience few, if any, late or long-term effects, others experience debilitating and persistent health challenges, including—but certainly not limited to—pain, osteoporosis, sexual dysfunction, changes in cardiorespiratory status, musculoskeletal problems, diminished coping skills and difficulty in obtaining health insurance (Lance Armstrong Foundation, 2004). Health care delivery systems have not kept pace with the multitude and variety of cancer-survivor needs. Cancer survivors are concerned about what long-term effects they might experience, how the risks of these sequelae can be minimized, and whether health care providers are prepared to recognize and address potential and actual problems. Addressing these concerns is complicated by the fact that many cancer survivors return to the care of primary care providers, who have varying levels of knowledge and expertise to manage the needs of long-term cancer survivors. Adding to the problem, accurate national data regarding prevalence and severity of late and long-term sequelae of cancer and cancer treatment do not exist. Both of us have been interested in the issues and concerns of cancer survivors for most of our careers. In 2004, we talked about the dilemma of identifying, preventing or managing long-term effects experienced by survivors. We knew this was an important area of care in which nurses could have significant influence. We were frustrated by the paucity of attention paid to these issues by nurses and nursing organizations. We could name a few notable exceptions—colleagues who have made important and lasting contributions to survivorship issues—but also noted that no nursing organization had made significant financial or strategic commitments to addressing the issue of cancer survivorship. We recognized the need to reach beyond the oncology nursing community to fully address the needs of cancer survivors. Survivors most often return to their communities, their families, and their work and school settings, where they likely encounter nurses representing a variety of specialties. Nurses who work in a number of practice settings—such as rehabilitation, home care, schools, occupational health, mental health, and maternal/child health—could have a positive effect on the quality of the long-term survivorship experience. A large part of identifying, preventing and managing long-term sequelae associated with cancer falls squarely within the scope of nursing. We brainstormed on how to involve these nurses and entice their professional organizations to be part of collaborative efforts to enhance survivorship care. Around the same time, the American Journal of Nursing (AJN) convened a series of state-of-the-science symposia, targeting clinical situations in which nurses play important roles. Organizers of the symposia expressed interest in addressing the topic of late and long-term effects of cancer and cancer treatment and invited us to participate as co-project directors. An invitational symposium addressing late and long-term effects of cancer and cancer treatment was convened by AJN in July 2005, with additional support from the U.S. Centers for Disease Control and Prevention, the National Coalition for Cancer Survivorship (NCCS), the American Cancer Society, the Lance Armstrong Foundation and several pharmaceutical companies. Eleven papers were solicited from oncology nurse clinicians and nurse scientists. Papers were peer-reviewed and presented during the symposium, and participants were charged with creating an action plan to promote cancer survivor care. The results of the symposium were published as a supplement to the March 2006 issue of AJN. Major recommendations from this state-of-the-science symposium covered elements of education, research, clinical practice and policy that would advance nursing’s role in addressing the needs of long-term cancer survivors, and there was strong support among participants that the work begun during the symposium should continue. They recognized that, ideally, the nature of survivorship care called for the knowledge and skills of a variety of nursing specialties beyond the oncology nursing community, and that an organized nursing approach to cancer survivorship was essential to success.
Shortly after the state-of-the-science symposium, the Institute of Medicine (IOM) published From Cancer Patient to Cancer Survivor: Lost in Transition (Hewitt, Greenfield, & Stovall, 2005), a comprehensive report of the challenges faced by survivors. Late and long-term sequelae, barriers to optimal care, and strategies and recommendations for addressing needs of cancer survivors are major topics covered. Acknowledgement in the report of the potential for nurses to positively affect survivor care was, from our perspective, disappointingly limited. Conversely, symposium participants were unanimous in their belief in nurses’ unlimited and relatively untapped potential to enhance the quality of life for cancer survivors and to quantify the care and services available to this population. A major recommendation of the IOM report is that care plans be made available to all cancer survivors at the end of initial treatment. The suggested care plan would include treatment summaries, recommendations for follow-up care and individualized health promotion strategies. In November 2006, AJN again took the lead and convened a stakeholders meeting of national nursing organizations and other organizations and agencies, together with key individuals, to craft nursing’s response to the IOM report. Representatives of more than 25 organizations attended the two-day meeting at the Institute of Medicine in Washington, D.C. (See sidebar.) The commitment, enthusiasm and energy in the room were electric. Together, we worked to develop a master action plan, identifying and incorporating initiatives or projects that participating organizations would undertake to advance the survivorship agenda. One initiative included in the action plan was preparation of a manuscript for publication that would identify survivor-related health care issues and provide a template that included a combined treatment summary and a survivor care plan. Several cancer-related organizations had drafted summary and survivor care plans, but none seemed to be progressing expeditiously to the pilot stage. The stakeholders present concluded that nursing should take the lead. As participant Betty Ferrell, RN, PhD, observed: “We’ve waited a long time and can’t wait until it’s perfect. Just do it.” The first publicly available survivor care plan template, which we call “The Cancer Survivor’s Prescription for Living,” was published in the April 2007 issue of AJN (Haylock, Mitchell, Cox, Temple, & Curtiss). We invite feedback and suggestions from nurses in any and all settings where health-related services are provided to cancer survivors. We expect the plan to be a work in progress as it is used and revised by others, incorporating suggestions offered by health care providers and cancer survivors alike. Carol Picard, president of the Honor Society of Nursing, Sigma Theta Tau International, is taking the lead for the next steps of the project, in collaboration with the Oncology Nursing Society (ONS) and NCCS as co-leaders. The strong leadership demonstrated by this partnership gives these efforts every chance to succeed. Expect to hear more in the future. In 2004, we never expected our private musings to lead to a national meeting of nursing stakeholders, a master plan for nursing to address issues faced by cancer survivors, and publication of “The Cancer Survivor’s Prescription for Living.” Nursing is speaking in a strong and cohesive voice with shared goals of improving care, follow-up and education for health care professionals and survivors of cancer. Collectively, we are making a difference. RNL Pamela J. Haylock, RN, MA, a resident of Medina, Texas, USA, is a cancer care consultant, a doctoral student and former president of the Oncology Nursing Society. Carol Curtiss, RN, MSN, BC, a resident of Greenfield, Massachusetts, USA, is owner of Curtiss Consulting, an adjunct faculty member of Tufts University School of Medicine and former president of the Oncology Nursing Society. Continuing education: Click here for links to the honor society's continuing education articles related to cancer. References: American Cancer Society. Cancer facts and figures 2006. Retrieved June 11, 2006, from http://www.cancer.org/downloads/STT/CAFF2006PWSecured.pdf Haylock, P., Mitchell, S., Cox, T., Temple, S., & Curtiss, C. (2007). The cancer survivor’s prescription for living. American Journal of Nursing, 107(4), 58-70. Hewitt, M., Greenfield, S., & Stovall, E.(Eds.). (2005). From cancer patient to cancer survivor: Lost in transition. Washington, DC: National Academies Press. Lance Armstrong Foundation. (2004). LIVESTRONG™ poll. Retrieved November 30, 2004, from www.livestrong.org National Cancer Institute. (2006). Office of Cancer Survivorship, Cancer survivorship figures. Retrieved November 11, 2006, from http://dccps.nci.nih.gov/ocs/ocs_factsheet.pdf |
