When Jane Ferber-Green finished her breast cancer treatment, which had involved a lumpectomy and chemotherapy, the staff and other patients held a celebration. She felt like she'd won a war. She quickly realized, though, that it was only the first battle in what would be a lifelong struggle to resume a "normal" life.l
Every ache or pain brought back memories-of being sick, the fear of dying. And although the terror eventually retreated to a deep place and her confidence eventually returned, she discovered that unexpected symptoms popped up-10 or 20 years later. No one had warned her about the ongoing fatigue or delayed pulmonary toxicities, which made socializing and exercising difficult. She sustained a fracture and was told that she had osteoporosis, even though she was only 48. She had pain with intercourse. Her primary care provider couldn't make a definitive diagnosis. She became increasingly depressed over the somatic complaints that kept her from feeling normal and living a full life. Her husband grew distant.
Although not a real case, this composite reflects the experiences of many cancer survivors. Nurses, physicians, and even patients and families are often so focused on "saving" a patient from death that they fail to see that cancer is a chronic illness. We're all in survival mode: the patient should feel lucky to be alive.
In 2006 the Institute of Medicine (IOM) issued a landmark report, From Cancer Patient to Cancer Survivor: Lost in Transition. The report recommended that every cancer patient have a survivorship care plan that summarizes information about the type of cancer and its treatments, identifies potential long-term effects of the disease and treatments, recommends steps the patient can take to promote health, and creates systems of care to meet the specific needs of the survivor.
In response to the report (and to a 2005 conference on nursing's role in survivorship that was sponsored by AJN), a group of national nursing, social work, and survivor organizations, as well as other key stakeholders, met in November 2006, at the National Academy of Sciences in Washington, D.C.
One of the primary goals set by the group was for nurses to take a leadership role in developing survivorship plans, with a particular emphasis on helping the survivor define a new "normal" and develop a plan for achieving a high level of wellness. The group determined that, while the survivorship plan should be developed in collaboration with a variety of providers (including physicians, social workers, nutritionists, and psychologists), nurses should be responsible for ensuring that every plan is a "prescription for living" that includes strategies the patient can use to promote health.
Twenty-five organizations have committed to educating nurses regarding survivorship and taking other steps to promote better care for survivors. Five nurses at the meeting agreed to develop the article on survivorship plans that appears in this issue of AJN (on page 58) and includes "A Prescription for Living," a model survivorship care plan that they hope "begins to meet the needs of clinicians for a concise summary of treatment and follow-up care planning while also offering survivors a guide for planning healthful lifestyles."
This is not simply a matter for oncology nurses. Most cancer patients return to the care of nonspecialists in primary care practices, medical-surgical units, homes, and even long-term care facilities. We urge you to read this article, discuss it with colleagues, and examine how your facility or practice can use or modify its methods for use with survivors you encounter.
The Oncology Nursing Society (ONS); Sigma Theta Tau International, the Honor Society of Nursing; and the National Coalition for Cancer Survivorship have committed to moving the plan forward. But none of this would have developed without the leadership of former ONS presidents Carol P. Curtiss, MSN, RN-BC, and Pamela J. Haylock, MA, RN, who suggested that AJN host the state-of-the-science meeting and conduct the follow-up stakeholders' meeting. We are indebted to such visionary leaders and to the organizations that will move this work forward. AJN's initial report and the organizations' 2006 master plan for improving care for cancer survivors can be found at http://www.nursingcenter.com%2fajncancersurvivors.