For Caregivers of a Child with Serious Illness – Additional Resources

RESOURCES FOR INDIVIDUALS

• Voicing My Choices: Created by Five Wishes®, this resource (in English and Spanish) helps teens living with a serious illness to share their wishes for comfort, treatment and remembrance.
• My Wishes: Created by Five Wishes®, a resource to help children share how they want to be cared for if they become seriously ill.
• What is Pediatric Palliative Care?: A resource from Honoring Choices Massachusetts, with contributions from the Pediatric Advanced Care Team at Boston Children’s Hospital and Dana-Farber Cancer Institute.
• Together by St. Jude: An online resource powered by St. Jude Children’s Research Hospital offering a community of support for anyone facing childhood cancer
• National Hospice and Palliative Care Organization: Brochures for families caring for seriously ill children
• Pediatric Palliative Care Coalition: Conversation starters, advance directive planning and other resources
• Palliative care: Conversations that matter©: Materials for parents and families to help raise awareness and empower families to begin a dialogue with health care providers
• Courageous Parents Network: Resources for parents of children with life-limiting illness
• National Organization of Rare Disorders: Content and resources for families of children diagnosed with rare disorders
• Everyone Dies Podcast: Weekly podcast to help people learn how to talk about death

Videos

• Stories from a home for terminally ill children
  • To honor and celebrate young lives cut short, Kathy Hull founded the first freestanding pediatric palliative care facility in the United States, the George Mark Children’s House. Its mission: to give terminally ill children and their families a peaceful place to say goodbye. She shares stories brimming with wisdom, joy, imagination and heartbreaking loss.

• Cameron’s Arc: Creating a Full Life
  • Cameron’s Arc is designed to train health care professionals, including primary care pediatricians, on how to provide compassionate, family-centered care, including palliative care, to seriously ill children and their family. Now available through the AAP Pediatric Care Online platform to the public (free of charge), this collection of 5 videos build capacity among pediatricians to provide compassionate, family-centered, palliative care to families of seriously ill children. Many of the strategies outlined in these videos also apply to children with disabilities and medical complexity.

Blogs & Articles

• Talking Matters: A Loving Mother’s Commitment to Honor Her Daughter’s End-of-Life Wishes (TCP blog)
• Finding Hope and Healing When Cure Is Not Possible (Mayo Clinic)
• Finding Hope and Healing When Cure Is Not Possible: An Oslerian Perspective From 100 Years Ago (Mayo Clinic Editorial)
• Where Should a Child Die? Hospice Homes Help Families With the Unimaginable (NY Times)

Books

• On Death and Dying by Elisabeth Kübler-Ross
  • Just re-released with a new foreword by Dr. Ira Byock; the classic book written following EKR’s hundreds of interviews with dying patients.
• On Children and Death by Elisabeth Kübler-Ross
  • Based on a decade of working with dying children, this compassionate book offers the families of dead and dying children the help — and hope — they need to survive. In warm, simple language, Dr. Kübler-Ross speaks directly to the fears, doubts, anger, confusion, and anguish of parents confronting the terminal illness or sudden death of a child.
• The Tunnel and the Light by Elisabeth Kübler-Ross
  • It contains the “Dougy Letter,” which is written to an eight-year-old as a way to explain all of life, which includes death.
• The Private Worlds of Dying Children by Myra Bluebond-Langner
  • “The death of a child,” writes Myra Bluebond-Langner, “poignantly underlines the impact of social and cultural factors on the way that we die and the way that we permit others to die.” A moving drama constructed from her observations of leukemic children, aged three to nine.
• The End of Life at the Beginning of Life: Working with Dying Children and their Families by Nancy Cincotta (clinical director of Camp Sunshine and a LICSW) — a chapter from the book, “Living with Dying.”
  • While the chapter and the book in which it is published are written for a clinical audience (doctors, social workers, chaplains, nurses etc.), parents may find this compassionate, sensitive, and objective discussion of how to support parents and dying children to be helpful. It provides a bird’s-eye view of family dynamics, parent-child dynamics, and provider-parent dynamics. The chapter is especially appropriate for parents of older children who are sick.
• Everyone Dies (and Yes, It is Normal) By Marianne Matzo, PhD, FAAN and Darlene Domanik
  • Everyone Dies (and Yes, It is Normal) is a story about a young boy named Jax who finds something special on the beach where he and his grandpa Pops are enjoying a wonderful day. Pops helps Jax understand that death is a normal part of life. This book provides an age appropriate, non-scary, comfortable way to introduce the important topic of mortality to a preschool child. Its simple explanation will last a lifetime.

• Scarlet Says Goodbye by Christine Thompson
  • Grief/activity book for children.

RESOURCES FOR ORGANIZATIONS AND COMMUNITIES

• Palliative care: Conversations that matter©: materials from the National Institute of Nursing Research to assist health care providers with starting and continuing conversations about pediatric palliative care with their patients and patients’ families.
• Children’s Hospice and Palliative Care Coalition: Advance care planning resources for patients and families
• Palliative Care for Infants, Children and Adolescents: A Practical Handbook
  • Written by leading researchers, clinicians from relevant disciplines, family members, and advocates, this practical guide provides professionals involved in pediatric palliative and end-of-life care with comprehensive information in a single volume.
• Get involved in your community – start here: https://theconversationproject.org/get-involved

PRINTING OPTIONS

• For more information, visit our directions for distributing and editing the Starter Guides.