Living with cancer can be overwhelming. Patients often make decisions about their care while fatigued, nauseous, and in pain. They and their families may experience a range of feelings, including anger, fear, anxiety, powerlessness, and despair. They may struggle to cope with the diagnosis and the changes it entails—to body image and self-esteem, to their role within the family or at work. Yet, when they need it most, patients frequently don't have access to the information, resources, and personal guidance that could help them make informed decisions. They are treated by a multitude of health care providers but often lack the consistent assistance of just one.
In 1997 the Minister of Health and Social Services of Quebec, Canada, established a committee to study the needs of cancer patients and their families, and the ways in which these could best be addressed. When it was discovered that many patients lacked access to palliative care and support throughout their illnesses, the health ministry decided that each of the province's oncology and palliative care units should have at least one dedicated nurse—known as an "infirmière pivot en oncologie" (in English, a "pivot" or "navigator" oncology nurse)—to assist patients who've been diagnosed with cancer throughout their illnesses.
The pivot nurse—who must hold a baccalaureate in nursing and have a minimum of two years of oncology experience—is a constant companion to the patient with cancer, assessing her or his physical needs, managing symptoms, and providing information about the disease, its treatment options, and resources and services available within the hospital and community. Pivot nurses offer emotional support—listening to concerns and providing referrals to psychologists, cancer support groups, and spiritual advisors—and coordinate care between the patient and multidisciplinary team members.
Unlike other oncology nurses, who see patients when they visit the hospital or clinic, the pivot nurse is in continual contact, performing assessments both in person and over the phone, and coordinating the patient's care outside of the hospital. When I was a pivot nurse, I often worked with nurses in community clinics, for example, by providing vital information about patients—if a port needed to be flushed, if filgrastim (Neupogen) was required following chemotherapy—and receiving updates about their health status, which I'd then share with the rest of the care team.
A similar nursing role in the United States grew out of the Patient Navigator Program at Harlem Hospital Center in New York City in the 1990s, in which volunteers—often cancer survivors—assisted patients in obtaining timely screening, diagnosis, and treatment. Although an increasing number of U.S. oncology units and hospitals now employ "nurse navigators"—RNs who may have specialized in oncology—to provide clinical, educational, and emotional assistance to patients with cancer, their presence varies by institution. In much of the world outside of Quebec, the presence of a nurse navigator or pivot nurse isn't guaranteed.
And yet it should be. Patients have told me that they feel better cared for and supported because they have access to one nurse who's assessed and coordinated their care throughout their illness. Lise Fillion, PhD, RN, has found that the presence of Quebec's oncology pivot nurses improved patients' sense of quality of life and satisfaction with their care, according to results she presented at a conference in Vancouver, British Columbia, in 2005 (see http://bit.ly/9elHiC).
All patients with cancer should have access to a pivot nurse or nurse navigator within a week of diagnosis, ensuring they have a constant companion, a source of information, and an attentive listener throughout the trajectory of their illnesses. It's my hope that pivot nurses or nurse navigators will soon be found on every oncology unit and that their care will someday extend to patients with other chronic or life-threatening conditions.