Shelley Fuld Nasso, of the National Coalition for Cancer Survivorship, explains the importance of survivorship care.
A patient with newly diagnosed prostate cancer must decide between treatment or surveillance but is having difficulty understanding the doctor’s recommendations. A survivor of breast cancer has transitioned from active treatment but is unsure about what long-term effects to expect. A patient with lung cancer is unaware that his recommended treatment is not curative and has not yet discussed end-of-life care with doctors or family members. These are common dilemmas faced by individuals with cancer.
Recently, I asked my mother-in-law to reflect on her cancer experience. “It was a very frightening time for me,” she said. “I knew nothing about the process after a lumpectomy and removal of my lymph nodes. I was sent home with no instructions other than to visit my doctor to get results about the lymph nodes. I was in pain and miserable. I so desperately needed a plan for recovery and what to expect from my treatment.”
A key recommendation for action is that the cancer care team “should collaborate with their patients to develop a care plan that reflects their patients’ needs, values and preferences, and considers palliative care needs and psychosocial support across the cancer care continuum."
These experiences underscore the need for improved communication between patients and providers, as well as for cancer care planning—a key priority of the National Coalition for Cancer Survivorship (NCCS).
Last fall, the Institute of Medicine (IOM) released Delivering High-Quality Cancer Care: Charting a New Course for a System in Crisis, a report supported by the NCCS and other leading cancer organizations. It concluded that the cancer care system is in crisis—it is not patient-centered, does not provide well-coordinated care and does not encourage evidence- based treatment decisions. With more than 1.6 million new cancer diagnoses expected this year, these gaps will impact more people than ever.
The IOM proposes a framework for quality cancer care that centers on engaged patients and emphasizes informed decision-making and deliberate planning for this difficult and often-confusing journey. A key recommendation for action is that the cancer care team “should collaborate with their patients to develop a care plan that reflects their patients’ needs, values and preferences, and considers palliative care needs and psychosocial support across the cancer care continuum.”
These are important steps toward improving the quality of care patients receive. But real change comes from reforms to the system of healthcare delivery and payment. In order to truly change clinical practice and make both treatment care planning and survivorship care planning a reality for patients, physicians and care teams must receive financial compensation for their time.
To that end, the NCCS supports the Planning Actively for Cancer Treatment (PACT) Act, legislation that would establish a Medicare service for cancer care planning and coordination. The legislation has garnered bipartisan support and the backing of 15 cancer centers and 16 patient advocacy groups. The service would encourage physicians to create a written care plan, based on shared decisions made with the patient’s active involvement. These plans can be shared with all parties involved in the patient’s treatment, helping to reduce duplication of testing and other services and ensure the patient’s wishes are known in advance.
Cancer care planning will improve patients’ experience, and, at the same time, reduce inefficiencies in the system. The experience of cancer is frightening and challenging to patients, and they should receive a clear and concise road map of their treatment and survivorship. I wish that my mother-in-law had had access to care planning. She might not have felt so lost and alone during her treatment and afterward.
—Shelley Fuld Nasso is the chief executive officer for the National Coalition for Cancer Survivorship. For more information about the PACT Act, visit CancerAdvocacy.org.