Go Ahead and Ask: An Honest Conversation about End of Life
This event was hosted on Aug 19, 2020 04:00 PM EST
CPN invites parents (and providers) into the ZOOM Room to explore a place we don’t want to go — While many of us have learned about birthing a child from multiple sources, there is little information about how to prepare, process and survive the death of a child. As hard as it is, we believe the willingness to talk about all aspects of this ahead of time makes us better able to respond as our child’s end of life approaches. At CPN, that has been our experience.
Shaelyn Waller is a pediatric acute care and palliative care nurse in Boston. She has worked in pediatric palliative care and hospice for 5 years and became a certified hospice and palliative care pediatric nurse (CHPPN) in 2018. She is working to start a palliative care program at a small children’s hospital in Brighton MA and plans to go back to school for her nurse practitioner with the focus of acute chronic pediatrics.
Elizabeth and Lars Schuster are parents to 3 children. Their youngest daughter, Adelaide, passed away at home from Acardi Goutieres syndrome right before her 7th birthday. They love traveling with family, sports, any outdoor activity, and are involved in the special needs and palliative care community as a way to honor their daughter’s memory.
Michelle Moon is a neurologist whose daughter, Julianna Snow, died at home at the age four of a neuromuscular disease called CMT. She is currently doing a fellowship in Hospice Palliative Medicine.
Also joining the conversation are CPN staff members:
Janet Duncan is a Certified Pediatric Nurse Practitioner. She chose to specialize in palliative care over 25 years ago and has worked with families and their children who have a serious illness both inpatient and outpatient and through bereavement.
Kerri Padgett bereaved mom to her only child Kai who died in the hospital after 16 months of treatment for a brain tumor. Kai died at the age of two nearly 8 years ago.
Jennifer Siedman is mom to three. Her middle child Ben had Sanfilippo Syndrome and died in the hospital 6 years ago as the result of acute pneumonia.