Palliative Care Program

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.

Vision

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.

Mission

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

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

Family Resources

Courageous Parents Network
The Dougy Center, a Portland center that helps families grieving a death
Eluna
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

Provider Resources

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

Alaska resources

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.
Phone: 907-561-5322
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.
Phone: 907-313-4898
Email: mih@salamedics.com
TEARS Foundation: Child loss support groups, financial support for infant funeral expenses.
Address: 5631 Silverado Way, F-102, Anchorage, AK 99518
Phone: 907-529-4289
Facebook: Alaska Chapter of the TEARS Foundation
Email: alaskachapter@thetearsfoundation.org

Idaho resources

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 resources

Oregon resources

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.

Washington resources

Contact Us

NWPPCC@seattlechildrens.org