Advancing a Quality-of-Life Agenda in Cancer Advocacy: Beyond the War Metaphor.

Cancer advocacy has reached a pivotal point. When PresidentNixondeclared“WaronCancer”bysigning the National Cancer Act in 1971, advocates advanced a narrative that suffering and death from cancer should not be accepted; cancer should be fought and eradicated. Since then,nonprofit andacademic institutionshave focused their research and marketing strategies on prolonging survival, via cure and prevention. This strategy has been successful. Whereas only 3 million survivors lived in theUnitedStates in 1970,nearly 14millionAmericans with a history of cancer were living in 2012. They will number 18millionby2022.1(p52)Assurvival formany types of cancer has improved, however, goals must evolve as well. Cancer survivors desire bothmore days and better days. In response to the improved survival rates, cancer advocates have begun to place equal emphasis on prolonging survival and improving quality of life. They assert—and we agree—that it is time to move beyond the “war” metaphor to embrace a dual message of surviving and thriving. We propose 3 priority areas—in clinical practice, in messaging, and in research—inwhich a successful quality-of-life agenda can be implemented. Advances inearlydetectionandtreatment, coupled with advocacy campaigns organized around “conquering” or “eradicating” cancer, havedriven the substantial gains in life expectancy among certain cancer types. Breastcancer isastarkexample:5-yearsurvival forbreast cancer alonehas increased from63%in theearly 1960s tomore than 90% today, due largely to improvements in early detection and treatment.2(p4) Alongside research investment, canceradvocacyeffortshavehelped improve detection and survival and, for some cancers, even offer a cure. There are limitations of a narrow focus on cure and prevention, however. The risks of overdiagnosis and overtreatment from large-scale cancer screening programs and associated treatment are now well known. Previous advocacy efforts have also fallen short in addressing family caregiver support needs, the high costs of cancer treatment, andsymptomsand lateeffects that cause substantial preventable suffering.1 Long-term health consequences of cancer treatment are increasingly evident. Among adult survivors of childhood cancer, more than 98%experience a chronic health condition by age 45 years, including cardiomyopathy and pulmonary disease, that are inmany cases attributable to treatment received early in life.3 Furthermore, total inflation-adjusted medical costs of cancer have nearly doubledbetween1987and2005.4Theexorbitant costs of somenovel chemotherapies and screening tools add anotherwrinkle to the complicatedhistoryof themetaphorical “war on cancer.” Health care professionals, activists, and patients need a new narrative—and a new metaphor—that responds to the changing demographic characteristics of the cancer population. Fortunately, the success of research and advocacy efforts in prolonging survival has paved the path for modernizing the high-quality care paradigmto reflectpatients’ and families’ expandedpriorities of survival and quality of life. Greater life expectancy foradults andchildrenwithcancerhas inspired researchers, practitioners, and patient advocates to address pain, symptoms, distress, andother quality-oflife concernsalongsidedisease-directed treatmentasan integral part of high-quality care.1 Clinically, tending toquality-of-life concernsandpatientvalues inoncologytreatment isnowuniversally recommendedbyprofessional oncologyorganizationsand accreditingentities. Integratingpalliativecarewithstandard therapy is one evidence-based strategy proven to improve quality of life and care while reducing costs— particularly among our nation’s sickest adults and children. Concurrent oncologic and palliative care is supportednotonlybyamajorityofpatients inpublicopinion research5 but also by clinicians via evidence-based recommendations from the American Society for Clinical OncologyandAmericanCollegeofSurgeons.6,7Recommendations in recent InstituteofMedicineconsensus reports have also underscored the importance of prioritizingclinical communicationskills training inalloncology programs.1 To maintain physical and emotional functioning and support quality of life at any age and any stage across the care continuum, psychosocial and rehabilitation services must be integrated into palliative care (see Figure). Yet, despite known benefits, palliative care referral practicesvarywidely across theUnited States, and palliative care services remain rare outside thehospital setting.Advocacyorganizationsshouldseek to make palliative care services more widely available, promote communication training, and integrate psychosocial and rehabilitation services in clinical settings. Consistent and clear messaging through coordinated advocacy is also essential. As an initial step,more than 20 groups have partnered in building a “Patient Quality of Life Coalition” (www.patientqualityoflife .org) that provides the organizational and strategic framework for multiple disciplines to join forces in advancing this national quality-of-lifemovement. The coalition’s agenda involves legislation; informational campaigns using print and social media; and Internet resources for patients, families, and health care profesVIEWPOINT