The National Pediatric Palliative Care Task Force Publishes New Guiding Principles

In response to Dobbs vs Jackson and other related issues, the National Pediatric Palliative Care Task Force, an initiative of the National Coalition for Hospice and Palliative Care, has released a set of Guiding Principles to inform their work, the field, and policy makers.

Background 
On June 24, 2022, the Dobbs v. Jackson ruling issued by the United States Supreme Court returned the issue of the right to access reproductive health services to the states. This decision eliminates guaranteed access to healthcare for millions of individuals. Given the ongoing maternal mortality crisis in America, health inequities will worsen, and marginalized individuals will be disproportionately impacted.

Additionally, now in some states, bills have been introduced that would make it a felony to withhold life-sustaining care from infants who are born either breathing or with a heartbeat, even if those infants are extremely preterm or suffer from other life-threatening diagnoses.

We are particularly concerned about the impact of these legislative activities on those of us who practice perinatal palliative care. We counsel individuals who are pregnant with fetuses with serious and life-threatening diagnoses. We support these individuals in making their own choices regarding termination or continuation of the pregnancy, and regarding the receipt of aggressive medical or comfort-focused care after birth. The decision in Dobbs v. Jackson, and bills criminalizing a comfort-focused approach for infants born with life-threatening diagnoses, threaten an individual’s autonomy to make their own healthcare decisions and our ability to practice evidence-based, compassionate medicine.

Therefore, the Pediatric Palliative Care Task Force of the National Coalition for Hospice and Palliative Care has been galvanized to create and share the following guiding principles to inform our work, the field, and policy makers:

GUIDING PRINCIPLES

The mission of the National Pediatric Palliative Care Task Force is to continuously improve access to pediatric palliative care. Legislative activities that threaten healthcare autonomy are pediatric palliative care issues.

• We believe that everyone, no matter where they live, should have the opportunity to receive comprehensive, evidence-based, goal-concordant healthcare.
• We believe that all clinicians, no matter where they live, should have the opportunity to practice evidence-based medicine without fear.
• We believe that medical issues are best decided by individuals in consultation with their health care teams. These decisions are private. Government interference in this relationship is dangerous and inappropriate.

This Task Force remains committed to supporting all pediatric palliative care providers, our patients, and their families, and we pledge to serve as a resource at the state and national level to our colleagues who are impacted by these issues.

Pediatric PC Guiding Principles _ 2022

If you have comments on this statement or a story that you would like to share with the Task Force, please email Devon Dabbs at Devond@nationalcoalitionhpc.org