Upcoming Pediatric Palliative Care Webinars

Decoding Decision-Making with Families

Providers and parents want to make the “best” decisions for a child with a serious illness. Ideally in shared decision-making, providers and families each have space to give and receive information, articulate and consider the options before them, and to discuss their thoughts and feelings honestly and respectfully.

This process is not straight-forward and is filled with thinking and logic alongside emotion and hope.

How can we participate meaningfully? How can we deconstruct what families hear and think? How can we facilitate/share/enhance the best decision-making on behalf of the beloved, unique child sometimes in the face of parental indecision and prognostic uncertainty?

Learning Objectives:

  1. Brief definition of shared decision-making.
  2. Acknowledge differing provider’s roles with families.
  3. Present challenging palliative care decisions that families face.
  4. Use case example to illustrate “best practice.”


Janet Duncan is a Certified Pediatric Nurse Practitioner who helped found the Pediatric Advanced Care Team, a pediatric palliative care consult service of Boston Children’s Hospital and Dana-Farber Cancer Institute in 1997. She began her career at the bedside of pediatric oncology patients and later learned from children with diverse illnesses and their families. She retired in 2017 however began doing medical provider outreach for Courageous Parents Network in spring of 2019 to return to her passion of supporting families and those who care for them.

Can Compassion Fatigue?

With the high burnout rate in the field of pediatric palliative care, this session will investigate what the literature reveals about burnout and how each of us can build the personal and professional resilience we need to sustain ourselves in such an emotionally and physically demanding field. Using emerging research from nurses who volunteer at a camp for children with cancer, this session will guide us to discover ways to alleviate moral distress. We will examine whether it’s our compassion that fatigues when we are on the brink of burnout, leaving us to ponder the question, “If everyone is burning out, who will care for the children?


  1. Identify key factors that lead to burnout
  2. Determine their own personal risk for burnout
  3. Delineate compassion fatigue and moral distress in relation to moral resilience and professional satisfaction 
  4. Evaluate resilience-building interventions to mitigate burnout at the personal and institutional levels


Kelly Johnson  PhD, RN, NEA-BC
VP for Patient Care Services and Chief Nursing Officer
Stanford Children’s Health and Lucile Packard Children’s Hospital

Kelly Johnson is the Vice President of Patient Care Services and Chief Nursing Officer at Lucile Packard Children’s Hospital Stanford. She has more than 22 years of chief nursing officer experience. She most recently served as the Dori Biester Chair in Pediatric Nursing and senior vice president and chief nursing officer at Children’s Hospital of Colorado. Johnson began her career in health care as an RN, advanced practice nurse, and manager. She holds a BSN from the University of Northern Colorado, MSN from the University of California San Francisco with specialization in Neuroscience and Family Health (FNP), and a PhD from the University of Colorado Anschutz Medical Campus, College of Nursing in Health Outcomes. From 1993-2008, Johnson served as Vice President for Patient Care Services and Chief Nursing Officer at Craig Hospital, which is a world-renowned, premier center for specialty rehabilitation and research for people with spinal cord and traumatic brain injury.

Lori Butterworth, M.Ed.
Founder & Executive Director
Jacob’s Heart Children’s Cancer Support Services
Co-founder Children’s Hospice & Palliative Care Coalition 

Lori Butterworth is an advocate for children, dedicated to ensuring that every child with a life-threatening illness receives compassionate, family-centered care that allows them to live well and die with dignity. In 1998, she founded Jacob’s Heart Children’s Cancer Support Services to provide emotional, practical, financial and bereavement support to families of children with cancer with particular focus on addressing the needs of low-income families living in the rural, agricultural areas of Central California. In 2002, she co-founded the Children’s Hospice & Palliative Care Coalition, a state-wide coalition to open access to hospice and palliative care for children in California, spearheading healthcare policy initiatives including the enactment of the Nick Snow Children’s Hospice and Palliative Care Act and the Concurrent Care for Children provision the Affordable Care Act. Lori earned a master’s degree in education and is currently pursuing a second master’s degree in Psychology from Harvard University conducting research on workplace burnout and post-traumatic growth.

Spirituality in Children & Families Facing Serious Illness

Spiritual Care is one of 8 domains of quality palliative care as defined by the National Consensus Project Clinical Practice Guidelines.  This session will describe the spiritual needs of children and their families as they face serious illness and the end of life.  

Learning Objectives:

1. Describe research related to spiritual needs of children and their families facing serious illness and death.

2. Identify opportunities for improving the assessment of spiritual needs.

3. Recognize spiritual care as essential for all clinicians involved in pediatric palliative care. 


Betty Ferrell, RN, PhD, MA, FAAN, FPCN, CHPN has been in nursing for 42 years and has focused her clinical expertise and research in pain management, quality of life, and palliative care.  Dr. Ferrell is the Director of Nursing Research & Education and a Professor at the City of Hope Medical Center in Duarte, California. She is a Fellow of the American Academy of Nursing and she has over 450 publications in peer-reviewed journals and texts.  She is Principal Investigator of a Research Project funded by the National Cancer Institute on “Palliative Care for Patients with Solid Tumors on Phase 1 Clinical Trials” and Principal Investigator of the “End-of-Life Nursing Education Consortium (ELNEC)” project.   She directs several other funded projects related to palliative care in cancer centers and QOL issues. Dr. Ferrell was Co-Chairperson of the National Consensus Project for Quality Palliative Care.   Dr. Ferrell completed a Masters degree in Theology, Ethics and Culture from Claremont Graduate University in 2007.  She has authored eleven books including the Oxford Textbook of Palliative Nursing (5th Edition, 2019) published by Oxford University Press.  She is co-author of the text, The Nature of Suffering and the Goals of Nursing published in 2008 by Oxford University Press and Making Health Care Whole: Integrating Spirituality into Patient Care (Templeton Press, 2010).  In 2013 Dr. Ferrell was named one of the 30 Visionaries in the field by the American Academy of Hospice and Palliative Medicine.  In 2019 she was elected a member of the National Academy of Medicine.

Gay Walker, RN, CHPNN is the former Program Director for Trinity Kids Care Pediatric Hospice in Los Angeles, California and currently a consultant and speaker for pediatric palliative and end-of-life issues. With over 30 years of nursing experience, Ms. Walker has performed successfully in a wide variety of medical environments and management positions, including supervising clinical services at Rush Presbyterian Hospital in Chicago. 

For the past 20 years, she has been actively involved in leading-edge hospice and palliative care services for children and their families. Ms. Walker continues to develop productive and effective hospice programs, services and curriculum in conjunction with the industry’s leading innovators. She has published the Oxford Textbook of Palliative Care Nursing, the recent Springer publication of Handbook of Long Term Care of the Childhood Cancer Survivor, the International Journal of Palliative Nursing, and the Journal of Palliative Medicine; including an abstract for the general assembly of AAHPM/HPNA in the developing field of spirituality and children. She has been an ELNEC faculty since 2006 and enjoyed the privilege of teaching throughout the world regarding the needs of seriously ill children and their families.  She recently received Compassionate Bereavement Certification.

Together in the Sandbox: Palliative Care and Complex Care Partnerships in the Medical Neighborhood

In this talk, we will review the current state of pediatric palliative/hospice care, including the overlap between palliative and complex care principles. We will explore the medical neighborhood as a common ground to offer seamless, integrated care across the continuum for children with serious illness, incorporating palliative/hospice principles as well as primary care. Strategies to conceptualize collaborative involvement without duplication or territoriality will also be examined.

Learning Objectives:

  • Accurately describe the concept and purpose of the medical neighborhood for seriously ill children
  • Identify three unique benefits pediatric palliative and hospice care can provide to the medical neighborhood for seriously ill children.
  • Describe the role of primary palliative care in the care of children with medical complexity, and how pediatric palliative and hospice care teams can facilitate this role


Sarah Friebert, MD, is the founder and director of the Haslinger Family Pediatric Palliative Care Center and the Expressive Therapy Center at Akron Children’s Hospital. The Center hosts an accredited palliative care fellowship program and held Advanced Certification in Palliative Care from The Joint Commission. In 2012, the Haslinger Center received the Circle of Life Award from the American Hospital Association, a national award honoring innovative programs in palliative and end-of-life care. Dr. Friebert received her medical training at Case Western Reserve University’s School of Medicine. She completed her residency in pediatrics at the Children’s Hospital of Philadelphia, and her fellowship in pediatric hematology/oncology at Rainbow Babies and Children’s Hospital. She is Professor of Pediatrics at Northeast Ohio Medical University (NEOMED) and past president of Akron Children’s Hospital’s medical staff. In 2009, she was awarded the Children’s Miracle Network Achievement Award for her transformational work. In 2011, she became the first chair holder of the Sarah Elizabeth Friebert Pediatric Palliative Care Endowed Chair. From 2012-2015, Dr. Friebert was a co-Principal Investigator for a Centers for Medicare & Medicaid Health Care Innovation Award examining care coordination for children with complex medical conditions. She is consulting Pediatric Medical Director for Hospice of the Western Reserve and for the National Hospice and Palliative Care Organization, and Program Director in the Center for Healthcare Services Delivery Research and Innovation at the Rebecca D. Considine Research Institute at Akron Children’s