NCDE Summer Institute- Pediatric Palliative Care along the Life Cycle

Friday, July 25, 2014

National Center for Death Education Summer Institute 2014

Presenters: Joanne Wolfe, MD MPH; Emma Jones, MD; Rachael Menius, MSN, CPNP-AC, CPON; Janet Duncan, MSN, CPNP; Marsha Joselow, LISCW


Workshop Description: Research has demonstrated because the causes of death in children are substantially different from those in adults, pediatric palliative care guidelines should be strategically innovative. This workshop will teach participants to recognize the complexity and heterogeneity of life-threatening illness in the pediatric population, and identify how this may impact care planning. The issues around pediatric language and communication will be explored. These important pieces will allow one to gain awareness of the multidimensional nature of distress in children at the end of life and develop an better understanding of the family perspective of bereavement and loss after the death of a child.

The Pediatric Advanced Care Team from Dana Farber Cancer Institute and Boston Children’s Hospital will present an interactive program to introduce participants to the unique world of pediatric palliative care.  Up to date research will be presented within each topic as well as real world practical knowledge gained through our work with patients and families.

  1. Joanne Wolfe, MD, MPH will present an introductory lecture which will familiarize learners with the role of pediatric palliative care along the life cycle of serious illness from diagnosis through bereavement. To view a video of Dr. Joanne Wolfe, courtesy of Kaiser Health News, please click here.
  2. Emma Jones, MD and Rachael Menius, MSN, CPNP-AC, CPON will present a session on assessment of overall sources of distress in children. Through the use of role play and small group discussion, we will explore the wide range of physical symptoms that children may experience as well as the use of age appropriate communication strategies to assess symptoms and discuss illness.
  3. Janet Duncan, MSN, CPNP and Marsha Joselow, LISCW will present a case discussion highlighting the psychosocial and spiritual assessment of children with life threatening illness.
  4. Bereavement will be presented from the parent perspective utilizing a panel of bereaved parents.