Patients' Bill of Rights for Quality Cancer Care

The Oncology Nursing Society (ONS), a professional association representing more than 30,000 RNs and other healthcare professionals specializing in cancer care, believes that quality cancer care is a right of all individuals. To that end, ONS advocates that the nation's healthcare system, healthcare plans and insurers, and healthcare providers should ensure that all patients in need of cancer-related care have access to the quality care they need and deserve. These rights include

Access to and Adequate Reimbursement of

• Screening activities that facilitate early cancer detection, including the option of genetic testing and counseling.
• The full spectrum of treatment options provided in the most appropriate setting for the management of the specific cancer and symptoms, with active participation in treatment decision making in an informed manner. These treatment options include but are not limited to surgery, radiotherapy, chemotherapy, biotherapy, hormonal therapies, marrow and peripheral blood stem cell transplant, complementary therapies, rehabilitative therapies, and psychosocial services.
• Administration of cancer care by a multidisciplinary team of qualified healthcare providers, including nurses, with specialized knowledge, who successfully complete ongoing programs that demonstrate their competence.
• Standing referrals to oncology specialists, including the authorization of these specialists to serve as primary care providers during treatment of cancer.
• Supportive therapies that help to prevent and decrease the side effects of cancer treatment, including psychological support, adequate education about all medications, possible side effects, resources for immediate response, and advice when questions arise.
• The routine care costs for scientifically sound and culturally relevant clinical trials. Sound clinical trials follow research guidelines, provide informed consent agreements, and yield information to advance the implementation of effective screening, diagnostic, and treatment modalities.
• Long-term follow-up that focuses on health promotion, prompt detection and treatment of cancer recurrence, and the evaluation and identification of physical and psychosocial effects of cancer and its treatment.
• Palliative care modalities that improve quality at the end of life, with a focus on symptom management, exemplary pain control, psychosocial support for patients and their families, hospice care, and bereavement counseling. This care must be provided in a manner that respects the individual's cultural, spiritual, and ethical needs.

Information About and Access to

• Education about cancer risks and lifestyle changes that influence the incidence of cancer, including educational activities that are effective and appropriate for diverse populations.
• Individual cancer diagnosis, treatment, and follow-up care in terms that can be understood, including unbiased analysis and interpretation of data, assistance in interpreting information relevant to medical status and treatment, and ample opportunity to ask questions and express or withhold consent freely and without undue interference.
• Second opinions on all recommendations and tests, including reliable resources and assistance in communications with patients' insurance approvers, health departments, or similar funding agencies to provide such double reviews.
• The healthcare professionals who are involved in patients' care (e.g., radiologists, pathologists, anesthesiologists) to discuss that care and facilitate healthcare consumers in seeking out, interviewing, and forming their own healthcare teams; thus, healthcare consumers become partners in their own care and lead their teams whenever possible.

Provision of Care That Proves

• Culturally appropriate and competent. Patients should be seen, heard, and respected as individuals who have individual differences related to their needs, preferences, and cancer characteristics.
• Consistent with legal and ethical guidelines with respect to patient privacy and confidentiality.

ONS Board of Directors approved 7/98; revised 10/00, 12/00, 10/02.

Bibliography

American Federation of Clinical Oncologic Societies. (1998). AFCOS special article. Access to quality cancer care: Consensus statement. Journal of Clinical Oncology, 16, 1628-1630.

Institute of Medicine. (1999). Cancer care quality assurance. In M. Hewitt & J.V. Simone (Eds.), Ensuring quality cancercare (pp. 144-179). Washington, DC: National Academy Press.

National Coalition for Cancer Survivorship. (2002). Imperatives for quality cancer care: Access, advocacy, action, and accountability. Retrieved October 11, 2002, from www.cansearch.org/policy/imperativesprin.html

National Patient Advocate Foundation. (2002). Position for patient protection. Retrieved October 11, 2002, from www.npaf.org/statements.php?=64