Navigating through the Questions, Choices, & Conflicting Emotions of Advanced Breast Cancer

HALIFAX, Nova Scotia—When faced with a diagnosis of advanced breast cancer, women are faced with a landscape of questions, choices, and conflicting emotions that often require more than a compass for successful navigation. As discussed here at the 4th World Conference on Breast Cancer, a recent study conducted in British Columbia found that just in the medical arena the average woman with advanced breast cancer will consult with an average of 32 different clinicians in the course of her treatment. Joanne Stephen, PhD, a research consultant at the Sociobehavioural Research Centre within the BC Cancer Agency in Vancouver, reported that the range in the number of clinicians was 13 to 97. “The BC Cancer Agency has identified the integration of cancer-control programs in the community as a primary organizational objective,” Dr. Stephen said in a poster presentation. Her presentation coincided with the first distribution of a 54-page brochure, Navigating Your Path: A Guide for People with Advanced Breast Cancer, discussed at a plenary session of the conference by Deborah Rusch, Director of the Alliance for Breast Cancer Information and Support, located in British Columbia and the Yukon. The information is aimed at helping patients through an often-difficult process of optimizing health care as well as psychosocial care. Organizations Also Need Help with Navigating Dr. Stephen, a psychologist, noted that not only does the patient have to find a pathway, but the agencies responsible for helping that patient also need help with coordination. “Continuity of care and an unrushed consultation are important to cancer patients and their providers, and discontinuity is perceived to lead to a lack of personal and case familiarity and communication difficulties,” she said. “Poor integration and coordination in cancer care contribute to poor access and continuity of care.” As many as 30% of all cancer patients experience clinically significant emotional distress, she noted. “Timely access to informational and emotional support is crucial in helping patients cope actively with the threats, losses, and practical challenges associated with cancer.” She said that getting a patient through the maze of treatment and related activities of daily living requires special individuals with specialized goals. “Patient navigation has been identified as a potential solution to problems of access, fragmentation, and lack of continuity,” Dr. Stephen said. She defined a patient navigator as “a person who assists the patient as an educator and support person, preparing patients for procedures and linking them with networks of professional and volunteer helpers, and facilitating system access and improved coordination and continuity.” Qualities of an Ideal Patient Navigator The ideal patient navigator, she said, should have the following knowledge and skills: Know what the disease prognosis is, and be aware of what the patient knows. Know the significant features of the patient's physical and social environment, and the range of available services for informational, instrumental, and emotional support. Provide support for the patient to verbalize emotional and practical needs. Identify gaps in information and in emotional support and close them by activating the patient's support systems in the family, among friends, in the community and from health professionals. Provide adequate information, encourage confidence, and facilitate problem-solving and self-management strategies. The goal, Dr. Stephen said, should be to make sure that all advanced cancer patients have knowledge about their own disease and treatment process for the immediate future, have access to a “care map” that provides an overview of the journey ahead, and have help accessing accurate information at the level of complexity desired.Figure: Joanne Stephen, PhD: “Continuity of care and an unrushed consultation are important to cancer patients and their providers, and discontinuity is perceived to lead to a lack of personal and case familiarity and communication difficulties. Poor integration and coordination in cancer care contribute to poor access and continuity of care.”The pamphlet puts much of those same goals directly into the hands of the patient even in situations where patient navigators are not provided. Although the pamphlet is Canadian-centric, it does include many universally useful tips that can guide patients to finding information no matter where they are. For example, the pamphlet notes that many patients with advanced cancer might be overcome by financial concerns that appear to pile up exponentially. Those can include the costs of medication and over-the-counter products, counseling and complementary services, prostheses, wigs, and sleeves, travel and parking during appointments and treatment, lodging for the patient and support-person during treatment, loss of employment for the patient and/or spouse, child care, and home care—including meal preparation, shopping, and house cleaning. The production and distribution of the pamphlet is provided by the CURE Foundation(www.curefoundation.com).

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