Rights and Responsibilities
Patients and their families have rights and responsibilities when they receive healthcare services. Influenced by the Civl Rights Movement, the concept of patient rights grew out of much work by advocates to promote respectful and appropriate family-centered care to benefit all sick children. In 1991 the Association for the Care of Children’s Health (ACCH) developed a Pediatric Bill of Rights that has been the basis for bills of patient rights nationwide. Although ACCH is no longer an active organization, hospitals across the country continue its efforts to include families in participating in the medical care of their children.
Washington has a Bill of Rights for all patients coverd by health plans operating in the state, to guarantee their rights to receive quality and beneficial care, to have timely access to and adequate choice of providers, to be able to appeal denials of coverage for care, among other rights. There is as yet no national bill of rights for patients, although efforts began in Congress to create one starting in the mid-1990’s.
With rights also come responsibilities. Among these are the responsibility of families to provide accurate and complete information relevant to their child’s care; to respect hospital policies on health and safety protections for themselves and others; and to take care of their financial obligations.
CHRMC’s page on Rights of Patient and Families explains these in detail, and also includes a section addressing the same for teenage patients. SCCA also has a Patient Bill of Rights and Responsibilities.
Washington stare law, and now federal law as well (as a provision of HIPAA or the Health Insurance Protection and Accountability Act), give patients the right to see and get copies of their own medical records. Many patient families and healthcare advocates recommend that patients or families routinely get copies of all records for both your information and for safety reasons. This is especially important for patients who have serious illnesses, or are undergoing complex procedures like BMT. Accurate information is needed also to help avoid medical errors. Since most hospitals still rely on paper records, it is all too easy for vital information to get misplaced or lost, or for circulating of charts to be delayed. Many oncology and BMT services routinely provide patient families with copies of lab reports, and will provide any records upon request. Sometimes you may find errors in information that has been recorded, and you have the right to both question errors and to correct them.
If your request for a records is made after care has been received, you may need to follow formal medical record request procedures, and may be charged a fee based on number of pages sought.
Copies of your child’s medical records will also be important for verifying bills you will receive, as well as for a source of information for his or her survivorship care in the future. For more about using medical records to ensure accuracy of bills and insurance claims, see our page on Hospital Bills.
Information about the right to access your medical records and other healthcare rights of Washington residents has been compiled for the Washington LawHelp website.