P0527 - Advocating for Palliative Care Families in the Context of Simon’s Law in Missouri and Kansas

Background: “Simon’s Law” (SL) is legislation that requires explicit parental consent prior to placing an inpatient do not resuscitate (DNR) order for an unemancipated minor. Such legislation was first proposed in Missouri in December 2014. In 2017, Kansas was the first state to pass a version of the law (Sub SB85), followed by Missouri in 2019 (SB 406). Proponents argued that Simon’s Law would protect parental decision-making rights and prevent unilateral DNR orders. Opponents noted that open communication prior to placing a DNR is standard and worried such laws would increase the burden on families, creating an adversarial relationship between healthcare providers and families. As these laws significantly impact how end-of-life care is administered, palliative care (PC) providers must advocate for patients and families at the institutional and legislative levels.

Experience: Children’s Mercy Kansas City (CMKC) serves a metropolitan area that includes both Kansas (KS) and Missouri (MO). When SL was first proposed in MO, one PC physician (JL) was asked by our Government Relations office to provide testimony opposing the bill. Subsequently, additional stakeholders mobilized, sharing both patient stories and concerns. They included physicians and ethics committee (EC) members representing 4 pediatric institutions across MO, the MO Chapter of the AAP, the MO Hospital Association, and the Center for Practical Bioethics. Advocacy efforts resulted in more tenable legislation.

The MO law prohibits instituting an inpatient DNR order for a pediatric patient without explicit consent from at least 1 parent/legal guardian. In the event of oral consent, presence of 2 witnesses separate from the parent/guardian or physician must be documented. Consent must then be immediately recorded in the patient’s medical record. Requirements do not apply if a “reasonable diligent effort” has been made to contact a known parent/guardian without success over a 48-hour period.

After the bill passed, PC representatives served on institutional EC to revise workflow, working with information technology (IT) to modify order entry in the electronic medical record (EMR), including drop down and textboxes to describe the discussion participants and witnesses. Additionally, documentation that contact with both parents/guardians was attempted 48 hours prior to implementing a DNR order is now required. Providers were informed via educational e-mail. This legislation has not significantly altered practice other than documenting witnesses present.

Conclusion: Legislation regarding DNR orders in pediatric patients continues to emerge and can create unique opportunities for palliative care advocacy. Through advocacy at multiple levels, our institution has been able to both inform the text of the legislation and the implementation of new guidelines.