PPC SERIES Creative Conversations: Advance Care Planning in Pediatrics

Caring for infants, children, adolescents and young adults with serious illnesses is challenging, especially when defining goals of care. Advance care planning (ACP) can be complex due to multiple factors, such as surrogate decision makers, developmental changes over time, uncertain trajectories of pediatric serious illness, and lack of knowledge regarding how to begin ACP conversations, how to talk with parents/guardians who may be young themselves with little experience with death, and often ACP discussions need to happen multiple times due to developmental and disease changes. This webinar will discuss creative ways to engage patients and families in discussions to document goals of care and how to mitigate challenges in ACP.

1. Define the similarities and differences between advance care planning, advanced directives and Medical Orders for Life Sustaining Treatments (MOLST)/Physician Order for Life Sustaining Treatments (POLST)
2. Define terminology frequently used when discussing resuscitation status with patients and families
3. Discuss strategies for children, adolescents and young adults to discuss and document goals of care
4. Identify strategies for non-verbal and neurologically impaired children, adolescents and young adults to discuss and document goals of care

About the presenters:
Clinical Director
PANDA Palliative Care Team
Children’s National Health System
Washington, DC
Dr. Debbie Lafond is a board-certified Hospice and Palliative Pediatric Nurse and is the Clinical Director of the PANDA Palliative Care Team at Children’s National Health System in Washington, DC. She has been an active APHON member since 1990 and is the past chair of the APHON Evidence Based Practice and Research Committee. She completed her DNP studies in 2012 at the University of Maryland with a research focus in early integration of palliative care in pediatric hematopoietic stem cell transplant. She was selected as a Sojourns Scholar in palliative care with the Cambia Health Foundation in 2015 to present. Dr. Lafond’s current projects include participating as a co-investigator with Dr. Pamela Hinds on an RO1 funded study titled “Being a Good Parent to My Seriously Ill Child” and investigating the experience of primary palliative care on families and clinicians using photovoice methodology.

Program Director
Bridges Pediatric Palliative Care
OHSU Doernbecher Children’s Hospital
Portland, Oregon
Kathy Perko, RN, MS, PPCNP-BC, CPON, CHPPN, CPLC is a pediatric nurse practitioner and the Program Director of Bridges Palliative Care at OHSU Doernbecher Children’s Hospital in Portland, OR. Kathy is both an ELNEC and EPEC (Education in Palliative and End of Life Care-Pediatrics) national trainer. She is certified in Pediatric Hospice and Palliative Care and Perinatal Loss Care (through NBCHPN). In her role as Program Director of the Bridges Program, she provides pain and symptom management, as well as, psychosocial and spiritual support to children and their families, and facilitates conversations about palliative and end of life care with care providers both in the hospital and the community. Ms. Perko has authored chapters in the Pediatric Oncology Palliative and End-of-Life Care Resource manual, published by APHON. And she is well known locally and nationally as a speaker in pediatric palliative care.