DNR in South Carolina

March 31, 2017

The death of a child has profound social, emotional, and spiritual implications. Childhood deaths are rare—1.6 percent of all deaths in the US in 2013 and 1.45 percent of all deaths in South Carolina in 2015. It is this rarity, however, that increases the chances a child’s death will be complicated. The circumstances surrounding a child’s final moments have profound implications for the grief responses of family, friends, and the community.

While many child deaths are sudden (i.e. accidents), there are a growing number of children living with complex chronic conditions that are either incurable or have not responded to standard treatments. Most of these children will die prior to reaching adulthood. In the setting of a life-limiting illness, it is important to discuss end-of-life plans and wishes in advance, something called advanced care planning.

An important part of such discussions is to address cardiopulmonary resuscitation (CPR). CPR is an emergency procedure performed in the setting of cardiac and respiratory arrest. It involves a combination of chest compressions, artificial respiratory support, medications, and resetting the electrical activity of the heart with the goal of restoring spontaneous blood circulation. Such attempts are not always successful. Following a successful resuscitation, the goal would then be to reverse the underlying condition that led to the arrest.

For children with life-threatening conditions, reversal of the underlying medical problem is rarely possible. In this situation, many caregivers in collaboration with healthcare providers (and the child if possible) decide that a do not resuscitate (DNR) order is aligned with the overall goals of care. A DNR order is a medical order that instructs healthcare providers not to perform CPR in the event of a cardiorespiratory arrest.

In South Carolina, as in other states, a specific form must be completed when a decision for a DNR has been made. The purpose of the form is to communicate these wishes and orders to community emergency medical personnel in the event they are called to assist a patient outside of the hospital setting.

In South Carolina, this form excludes patients less than 18 years of age (i.e. minors). As a result, there is no legal protection for children, families, and EMS personnel if a decision for DNR has been made based on the child’s condition. Which means there is a very real risk that if a child with a DNR order has a cardiac or respiratory arrest in the community, they will receive undesired resuscitation. This has happened before—a child receives resuscitation in the field and is transported to the nearest hospital where resuscitation continues until it is either successful or the medical team makes a decision to stop CPR.

In this situation, the child is separated from the family and the desire for the child to die at home surrounded by family does not occur. Furthermore, law enforcement often is involved to investigate the circumstances of the death leading parents to face questioning about their child’s death.

The recently formed South Carolina Pediatric Palliative and Hospice Care Collaborative has introduced a bill that would remove the age restriction for these DNR orders.