Pediatric Palliative Care Coalition

09/03/2026

08/31/2026

The 84th issue of the Pediatric e-Journal is available now! This issue focuses on how cultural or religious differences affect pediatric hospice and palliative care. Cultural and religious differences are often deeply imbedded in the children, adolescents, and family members providers serve, as well as the professionals and volunteers who provide such services.

This e-Journal is produced by the Pediatric e-Journal Workgroup and is a program of the Alliance.

The 84th issue and all archived issues are available on the Alliance website: https://allianceforcareathome.org/pediatric-care/pediatric-e-journal/

08/28/2026

When EMS responds to a patient receiving hospice care, the goal should be clear: provide care that honors the patient’s wishes. But without formal training or end-of-life protocols, EMS teams may face difficult decisions that can lead to unwanted hospital transports and added distress for patients and families.

Join Heather Valente, PA-C, for a look at the development of a patient-centered EMS hospice protocol. She’ll share the steps behind the process, the importance of stakeholder engagement, and lessons learned that can help others create similar protocols in their own communities.

A valuable session for anyone working to better align emergency care with the goals of hospice patients and their families.

08/21/2026

When a child dies, a funeral director becomes more than a service provider. They become a guide, through decisions no parent ever expected to make, at a moment when everything feels impossible. When a Child Dies: Planning Acts of Love & Legacy was created by the Funeral Service Foundation in partnership with the Pediatric Palliative Care Coalition, and informed by bereaved parents and grief and bereavement professionals. It helps families understand they are not alone, and helps funeral service professionals show up with the knowledge, language, and compassion the moment demands.

FREE to order, simply pay shipping: https://bit.ly/4wF7I5i

08/11/2026

There is still time to register for tomorrow's PPCC Firefly Chat: Goals of Care Discussions: More Than a Medical Decision.

In this upcoming Firefly Chat, we will be exploring decision-making and the importance of ongoing caring conversations in supporting children with serious illness and their families. We will highlight how a child's medical condition can change over time and how decision-making can evolve in this setting to best support the child.

Our Firefly Chat will include a Palliative Medicine Physician and two parents to share how to best navigate and support discussions.

Registration is FREE but required.
https://us02web.zoom.us/webinar/register/WN_43xDnpV-SNiqYC9SArSzNQ #/registration

08/04/2026

Register today for the August 20th PPC Webinar - Improving Pediatric End of Life Legacy Building at Home.

In this webinar, the presenter will discuss the implementation of legacy interventions for families to do at home. These Memory Making kits, aimed to independently facilitate legacy activities at home, allow for the creation of tangible keepsakes while also creating intangible meaning-making in the process.

08/01/2026

In our latest edition of House Happenings, our CEO Shekinah Eliassen reflects on USA TODAY’s recent visit to George Mark Children’s House and the national spotlight it brings to pediatric palliative and respite care.

Her message honors the families who shared their stories, the care teams who make extraordinary moments possible, and the growing movement to ensure that every family facing a life-limiting illness can access compassionate, family-centered care.

We invite you to read Shekinah’s message and help carry this work forward: by volunteering, donating, advocating, or simply sharing our story. Every action helps strengthen George Mark Children’s House while building greater awareness and support for children and families everywhere.

Read our latest blog: georgemark.org/a-national-spotlight-on-george-mark-childrens-house/

Learn how you can help: georgemark.org/get-involved

06/29/2026

Children with complex medical needs belong at home with their families - not in hospitals or institutions.

TribLive recently published a letter to the editor by Mary Hartley, Achieva's senior vice president and president of The Arc of Greater Pittsburgh, highlighting the urgent need to address Pennsylvania's pediatric home nursing crisis.

Achieva supports the Families Providing Extraordinary Care Act (House Bill 1068), which would allow family members to be compensated for providing the skilled medical care their children need when nurses aren't available. Any alternative legislation must include all children with complex medical needs, especially those with tracheostomies and ventilators. These families are highly trained - often teaching nurses the specialized care their child requires.

Passing HB 1068 would help keep families together, reduce unnecessary institutionalization, and make responsible use of taxpayer dollars by supporting care at home rather than in more costly institutional settings.

Read Mary's letter to learn why this legislation matters for children, families, and Pennsylvania: https://community.triblive.com/news/4082590

06/17/2026

Attention friends across Pennsylvania!

We are holding our next LEARN Initiative meeting on Wednesday, June 24th at Noon. The LEARN Initiative brings together Pennsylvania stakeholders dedicated to improving care for children with serious illness and those receiving palliative, end-of-life, and hospice services.

We will be joined by Jennifer Harniman-Crangle, LSW, of The Advocacy Alliance; Jordan Hunt and Kendra Pope, partners on our *NEW* Family Support Toolkit; and Jacquelyn Horstmann Didio, Co-Founder & CEO of Madelyn James.

You can register at https://us02web.zoom.us/meeting/register/EJZLzAkZSwWimmAwx1sHKA

Hope to see you there!