On January 29, 2013, New York State became the first in the nation to adopt mandatory sepsis protocols. In addition to the evidence-based guidelines for the early diagnosis and treatment of sepsis, a Parents’ Bill of Rights was issued to ensure to improve quality and oversight of care provided to pediatric patients, including provisions to strengthen the ability of parents to play a meaningful and informed role in a child’s healthcare decisions. The regulations require hospitals to implement procedures to ensure that parents and primary care providers receive vital information about children’s care, particularly by facilitating the communication of critical tests and lab results. Together, the protocols and the Parents’ Bill of Rights are known as Rory’s Regulations.
The full legal document is below:
As a parent, legal guardian or person with decision-making authority for a pediatric patient receiving care in this hospital, you have the right, consistent with the law, to the following:
1) To inform the hospital of the name of your child’s primary care provider, if known, and have this information
documented in your child’s medical record.
2) To be assured our hospital will only admit pediatric patients to the extent consistent with our hospital’s ability to provide
qualified staff, space and size appropriate equipment necessary for the unique needs of pediatric patients.
3) To allow at least one parent or guardian to remain with your child at all times, to the extent possible
given your child’s health and safety needs.
4) That all test results completed during your child’s admission or emergency room visit be reviewed by a physician,
physician assistant, or nurse practitioner who is familiar with your child’s presenting condition.
5) For your child not to be discharged from our hospital or emergency room until any tests that could reasonably
be expected to yield critical value results are reviewed by a physician, physician assistant, and/or nurse practitioner and
communicated to you or other decision makers, and your child, if appropriate. Critical value results are results that suggest
a life-threatening or otherwise significant condition that requires immediate medical attention.
6) For your child not to be discharged from our hospital or emergency room until you or your child, if appropriate, receives
a written discharge plan, which will also be verbally communicated to you and your child or other medical decision makers.
The written discharge plan will specifically identify any critical results of laboratory or other diagnostic tests ordered
during your child’s stay and will identify any other tests that have not yet been concluded.
7) To be provided critical value results and the discharge plan for your child in a manner that reasonably ensures that you, your child
(if appropriate), or other medical decision makers understand the health information provided in order to make appropriate
8) For your child’s primary care provider, if known, to be provided all laboratory results of this hospitalization
or emergency room visit.
9) To request information about the diagnosis or possible diagnoses that were considered during this episode of care and
complications that could develop as well as information about any contact that was made with your child’s primary care provider.
10) To be provided, upon discharge of your child from the hospital or emergency department, with a phone number that
you can call for advice in the event that complications or questions arise concerning your child’s condition.