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The Children's Research Institute

Advance Care Planning

Addressing the needs of children with life-threatening illness

With funding from the National Institutes of Health (NIH) and the American Cancer Society, research in our Center is being conducted to develop disease-specific FAmily CEntered (FACE) Advance Care Planning to facilitate communication between families and teens with life limiting conditions about their wishes for their own end of life care, if they could not speak for themselves. The FACE protocol has demonstrated benefits for both adolescents and their parents, and our research is investigating long-term outcomes with respect to quality of life and spiritual struggle. The FACE protocol is the first family-centered protocol to help the families of adolescents living with a life-limiting condition to speak directly and honestly about their end-of-life care. 

Faculty members with interests in advance care planning and end of life treatment decisions: