Northwest Pediatric Palliative Care Coalition (NWPPCC)
What is NWPPCC?
Pediatric palliative care teams at Seattle Children’s Hospital and OHSU Doernbecher Children’s Hospital had the idea to join with colleagues in the northwest corner of our country to form a pediatric palliative care coalition. In collaboration with the Washington State Hospice and Palliative Care Organization and Oregon Hospice and Palliative Care Association, the Northwest Pediatric Palliative Care Coalition (NWPPCC) for the states of Alaska, Idaho, Montana, Oregon and Washington was launched in the fall of 2021.
A survey of key stakeholders in the five-state region brought forth information and the needs of a diverse group of people committed to the care of seriously ill children. It became clear that those surveyed had vastly different access to support for families. Our coalition launched in October 2021 to begin to address these needs.
The Northwest Pediatric Palliative Care Coalition (NWPPCC) has a vision that all children and families in the Pacific Northwest region facing serious illness will have access to comprehensive palliative care support through the duration of serious illness both in the hospital and at home in the community with the goal to prevent, anticipate and mitigate suffering.
NWPPCC’s mission is to empower our interprofessional workforce to advocate for every child and family to have access to the support necessary to live as well as possible with serious illness. We hope to achieve our mission through:
- Supporting one another in providing clinical care in hospitals and in the community
- Collaborating with our Pacific Northwest community to advance education and research
- Engaging in advocacy and providing leadership and expertise in the region
- Identifying gaps within hospice and palliative care in Alaska, Idaho, Montana, Oregon and Washington state
Thank You to Our Partners
- Palliative Care Program, Seattle Children's Hospital
- Bridges Palliative Care, OHSU Doernbecher Children’s Hospital
- Washington State Hospice and Palliative Care Organization
- Oregon Hospice and Palliative Care Association
How to Access Our Services
If you have any questions or would like to learn more, please email the coalition at NWPPCC@seattlechildrens.org.
Meet Our Leadership Team
- Anne Anderson, RN, BSN, Seattle, Washington
- Jori Bogetz, MD, Seattle, Washington
- Rebecca Weicht Graves, DO, palliative care physician, Providence, Anchorage, Alaska
- Fiona Sampey, PA, palliative care, Bozeman, Montana
- Whitney Price, LCSW, CGCS, St. Luke’s Pediatric Palliative Care Program, Boise, Idaho
- Bob Macauley, MD, Bridges Pediatric Palliative Care Team, Doernbecher Children’s Hospital, Portland, Oregon
- Monica Holland, PNP, Bridges Pediatric Palliative Care Team, Doernbecher Children’s Hospital, Portland, Oregon
- Megan Schomer, parent advisor, Idaho
- April Endsley, administrative assistant
- Courageous Parents Network
- The Dougy Center, a Portland center that helps families grieving a death
- Journey Program
- Making Difficult Decisions: How Palliative Care Helps, video from the Courageous Parents Network, a group for parents caring for children with a life-threatening illness
- Courageous Parents Network video library and downloadable guides
- What is Pediatric Palliative Care? Get Palliative Care
- The Conversation Project, an effort by the nonprofit Institute for Healthcare Improvement to help people talk about end-of-life wishes
- When A Cure Is No Longer Possible for Your Child, downloadable booklet from the National Institutes of Health’s Clinical Center
- Pain and Palliative Care: Palliative Care Truths and Myths, National Institutes of Health
Support and bereavement
- The Compassionate Friends, support for grieving families
- National Alliance of Grieving Children, their mission is to raise awareness about the needs of children and teens grieving a death and provide education and resources to anyone who wants to support them. Their Vision is for no child to have to grieve alone. All bereaved children, no matter where they live or their circumstances, should have the support and resources they need to positively adapt to a loss in their lives.
- Camp Erin, the largest national bereavement program for youth grieving the death of a significant person in their lives. Children and teens ages 6-17 attend a transformational weekend camp that combines traditional, fun camp activities with grief education and emotional support, free of charge for all families. Led by grief professionals and trained volunteers, Camp Erin provides a unique opportunity for youth to increase levels of hope, enhance self-esteem, and especially to learn that they are not alone.
- Grief Share, a friendly, caring group of people who will walk alongside you through one of life’s most difficult experiences. You don’t have to go through the grieving process alone.
- What's Your Grief, exploration and expression in both practical and creative ways. They aim to provide the public with… Education that reaches beyond generalization; Practical and specific suggestions for moving forward; Modes of self-exploration and self-expression that suit all types of thinkers and doers; Ways to honor and remember deceased loved ones; A supportive community.
- Waves of Grief will introduce you to a number of new approaches and will encourage you to try them out. These new ways have the potential to put you in charge of your own grieving in a way that will create greater effectiveness, peace of mind, and wisdom. At the same time, they can reduce unnecessary suffering, feelings of failure and despair.
- Courageous Parents Network, with information and support for parents caring for children with a life-threatening illness
- New Legislation Provides Reimbursement Boost to Community-Based Pediatric Palliative Care - Hospice News
- Pediatric E-Journal
- Guidance for Pediatric End-of-Life Care | Pediatrics | American Academy of Pediatrics (aap.org)
- Seattle Children's Palliative Care Program
- Courageous Parents Network
- The Dougy Center, provides support and training locally, nationally and internationally to individuals and organizations seeking to assist children in grief.
- NHPCO, as the leading organization representing integrated, person-centered healthcare, NHPCO gives ongoing inspiration, practical guidance, and legislative representation to hospice and palliative care providers so they can enrich experiences for patients and ease caregiving responsibilities and emotional stress for families.
Resources by State
- Hospice of Anchorage: A volunteer hospice agency that can provide social support to families with kids with serious illnesses. This includes emotional and spiritual support, info, education, companioning. They don’t have nursing or PCA staff.
- SALA Medical: Mobile integrated healthcare. Services include med administration, IV access and maintenance, prescription pickup, basic wound care, O2 delivery and maintenance, blood draws, non-emergent transport. Patients can ask the medical provider to contact SALA regarding eligibility and setting up services.
- TEARS Foundation: Child loss support groups, financial support for infant funeral expenses.
Address: 5631 Silverado Way, F-102, Anchorage, AK 99518 Facebook: Alaska Chapter of the TEARS Foundation
- Rays for Rare (Eagle): "Light when skies are gray" for families with children with medical complexity.
- Camp Rainbow Gold (Boise): Their mission is to provide emotionally empowering experiences to Idaho’s children diagnosed with cancer and their families.
- Camp LOLO (Boise): Camp LOLO is a two-day camp held annually for children and teens struggling with grief over the Loss Of a Loved One. LOLO stands for Loss of a Loved one. One of the many needs that grieving children have is to be with others of their own age with similar grief and loss experiences.
- Touchstone: The Center for Grieving Children (Boise): Sessions facilitated by clinicians and professionals trained in the grief process. A supportive, peer environment. Children’s activities during sessions such as group discussion, crafts, and games designed to explore grief. Parental/Guardian group sessions focusing on coping skills and supporting children through the grieving process.
- Willow Center for Grieving Children (Lewiston): Willow Center for Grieving Children provides support to children, teens, and their families who are grieving the death of a loved one. Willow Center is a non-profit, charitable organization, that provides supports groups and resources for children and teens free of charge. Their program is designed to provide a caring, accepting environment that greatly enriches the healing process by allowing children and families to share their grief with others who have had comparable loss.
- Because Kids Grieve (Twin Falls): To assist in creating a safe culture in southern Idaho, where children and teenagers, ages 6 through 17, who have experienced the death of someone they care about, can share their feelings of grief and loss, including grief experienced in preparation for these losses, with their peers and supportive adult volunteer advocates as they progress toward eventual healing on their journey through grief.
- Montana POLST
- Tamarack Grief Resource Center
- Montana Pediatrics Complex Care Coordination
- Sesame Street in Communities
- Oregon POLST (Physician Orders for Life-Sustaining Treatment) offers resources for end-of-life planning, if needed. Often, this type of planning is more relevant for adults making their own health care decisions.
- Brief Encounters, a Portland organization that offers support, support groups and resources for parents grieving a pregnancy or infant.
- Seattle Children's Palliative Care Program
- Journey Program
- Healing Center
- Providence Carousel Hospice and Palliative Care Program
- Providence Stepping Stones Hospice and Palliative Care Program
- Safe Crossings Foundation
- Camp Erin