Using Dialogue to Promote Quality of Life and Death

In many institutions, patients might have a “do-not-resuscitate” order (DNR) or a “do not attempt resuscitation” order (DNAR), the latter term being an attempt to better represent the uncertainty of the outcome of resuscitation when it is chosen, or the choice to allow a natural death. Seattle Children’s has chosen to use the terminology “limitation of resuscitation orders.”

During her fellowship in bioethics and in critical care medicine, Dr. Jonna Clark, faculty member at our center and assistant professor of pediatrics, saw a disconnect between the reality of resuscitation and what the family understood it to mean. Often she provided resuscitation (“ran the code”) of a patient and family she didn’t know and had not spoken with previously. “It was so clear that we need to improve the communication process with families making complex medical decisions,” Clark says. She collaborated with Dr. Denise Dudzinski at the University of Washington to describe the cultural shifts that have occurred in resuscitation practices since the 1970s; their analysis was published in Pediatrics. They concluded that clinicians need to help families define overall goals of care, prioritize their values and navigate making incredibly difficult decisions to limit medical interventions for their child that are likely not beneficial.

Clark collaborated with Dr. Joan Roberts to write the Seattle Children’s policy on limitation of resuscitation orders that is in effect now, which had input from parents, Seattle Children’s End of Life Work Group and Seattle Children’s Ethics Committee (view Clark and Roberts’ 2013 Seattle Children’s Grand Rounds presentation on the policy). Recommendations in the policy included that clinicians:

  • Encourage the identification of a continuity provider for complex patients
  • Initiate and document all conversations with parents about overall goals of care, values and hopes early in the course of illness and during transition points
  • Serve as guides to help families understand how to make complex decisions regarding medical interventions within the context of their goals

Nationally, there has been significant interest in Seattle Children’s refined policy, as other institutions revise their resuscitation procedure and policy.

The authority for determining the therapeutic benefit of CPR appropriately resides with the treating physician. We have the professional obligation to do more good than harm to patients, and use our expertise to guide parents along a journey that no parent should ever have to take, navigating the death of their child. We, as healthcare providers, have an ethical and moral duty to make the dying process more humane.

Dr. Jonna Clark

Ultimate Goal

To improve collaborative communication and counseling with families to define goals of care and improve shared decision making regarding resuscitation and potential limitation of interventions in a way that incorporates optimal end-of-life care, including comfort care and ongoing supportive care for the family.

Collaborators

For more information, see Clark JD and Dudzinski DM. The culture of dysthanasia: attempting CPR in terminally ill children. Pediatrics. 2013 Mar; 131(3): 572-580.