Betty Ferrell, PhD, RN

The field of oncology has known many silences that result in serious harm.  The life-threatening nature of cancer—even in early stages and despite major  treatment advances&mdash;is often met by denial and avoidance of the enormous  physical, psychological, social, and spiritual consequences. 

Over the past three decades, individuals with cancer have broken the silence  to speak out on critical issues, such as the psychosocial consequences of  surgery, the impact of treatment on sexuality, and the myriad of other serious  quality-of-life concerns often ignored amidst a focus on treating the tumor and  prolonging survival.

One of the latest oppressive silences has been in palliative care. In both  professional and patient avoidance of the possibility of death, we have silenced  important discussion about the needs of cancer patients across all phases of  disease—diagnosis, treatment, remission, recurrence, long-term survivorship, or  end-of-life care.

In part, the silence resulted from palliative care being limited only to  hospice—care that focuses on the last weeks or months of life. Hospice was  avoided, often until the final days of life, thus denying patients access to  specialized care.

Fortunately, since the 1990s, palliative care has become an essential aspect  of cancer care. Palliative care “upstreams” the great work of hospice and  integrates excellent symptom control, psychosocial support, spiritual care, and  other elements of whole-person care into the usual care of cancer, regardless of  treatment or prognosis.

In 2004, national guidelines for palliative care were released by the  National Consensus Project for Quality Palliative Care (

). The NCP guidelines  emphasize that palliative care should begin at the time of diagnosis. The  guidelines provide a clear framework of the elements of quality care, including  processes, physical aspects, cultural aspects, and ethical and legal aspects,  among others. Palliative care expands care to include the goals of enhancing  quality of life—not only for patients, but also for family members&mdash;and helping  with decision-making.

People with cancer and their families must break the silence surrounding  palliative care. Not speaking of quality-of-life concerns doesn’t make them go  away. In fact, silence intensifies the suffering associated with unmet needs. In  the same way that breast cancer survivors broke their silence about needs  following breast surgery, prostate cancer survivors spoke up about sexuality,  and pediatric cancer survivors and parents voiced concerns about late effects of  treatment, all people with cancer should demand and expect excellent palliative  care.

) has led the charge for integration  of palliative care in hospitals and cancer centers. Palliative care programs  ensure access to expert symptom management, support for difficult  decision-making, and interdisciplinary care demanded by the life-altering  disease of cancer.

Speak up! Voice your symptoms and your concerns about quality of life. Ask  your oncologist and your cancer treatment facility about palliative care. How  does your care compare to the recommendations of the NCP guidelines for quality  palliative care? Does your hospital have a palliative care program? Speak up for  yourself and for others who may be too depleted and overwhelmed to speak for  themselves.

—Betty Ferrell, PhD, RN, is a nurse-researcher at City of Hope in  California. She has been a key figure in advancing palliative care as an  academic and clinical discipline. 

Articles

Patients should demand palliative care, no matter the stage of disease. 

Betty Ferrell, PhD, RN

Another Deafening Silence

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