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Welcome to the 2021 Holiday Edition of PPC NOW!
Welcome back to our quarterly edition of PPC NOW. We again offer a warm “Thank you!” to our member organizations and other aligned stakeholder groups that graciously distribute PPC NOW to their own members, greatly enhancing the exposure and impact of this newsletter. We are also excited to share that our individual readership has increased again, to over 550 subscribers!
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Since our last edition, the Task Force held our first annual two-day retreat which was a stunning success! In addition to our standing members, the retreat included our alternate members and family advisory council. The added voices were impactful to all of us and to our work together. 

We offer thanks to Tom Gualtieri-Reed for his guidance and leadership in planning and implementing the retreat alongside our staff members Devon Dabbs and Amy Melnick. During our time together we focused on team building, heard from Blyth Lord with the Cameron and Hayden Lord Foundation and Courageous Parents Network, and learned about national and state-based initiatives in pediatric palliative care. Our thanks as well to Judi Lund-Person at NHPCO, Stacie Sinclair at CAPC, and Conrad Williams, Medical Director at Medical University of South Carolina, for sharing their time and expertise.
Ongoing national advocacy efforts and the need to prioritize diversity, equity and inclusion were top of mind throughout the retreat. Finally, we spent time considering our “blind spots” as we strategically plan for 2022 and spent a great deal of time within our three workgroups. See below for detail from our workgroup co-chairs regarding their progress!
 
As we look ahead to 2022, we acknowledge the weight of another difficult year and our shared losses as a community. We remain grateful to serve in these roles and are focused on this group accomplishing great things in the New Year. We are also grateful to each of you for subscribing to this newsletter and for championing pediatric palliative care far and wide. On behalf of the Task Force, we wish you all a healthy and happy New Year. We’ll see you in 2022! In the meantime, please feel free to reach out to us at peds@nationalcoalitionhpc.org.

Warmly,
Rachel Thienprayoon, MD
Cheryl Ann Thaxton, DNP
Excitement & Praise for our 2021 Annual Retreat

“The breadth of the work and the integrity of the people doing it gave me goosebumps. I experienced my day with you as a true blessing.”  —Blyth Lord, founder Courageous Parents Network

I felt that we were able to tailor and hone the goals for the group into something more concrete and delineate a specific timeline. I am thankful to have had the experience of working with so many knowledgeable and talented people." —Rebekah Halpern, PAHPM alternate

"I enjoyed the meeting. I found it to be very helpful, insightful and inspiring."  —Holly Davis, NHPCO member representative

I am so thankful to be a part of this amazing group of people! I'm excited and energized to see what happens next! —Jennifer Bartz, family advisor
The National Pediatric Palliative Care Task Force (PPCTF) has been in existence for just over a year and exemplifies the core mission of the National Coalition for Hospice and Palliative Care. The Coalition works to improve the care of adults and children with serious or life-limiting illnesses by convening the field, advocating for equitable policies and improved health outcomes, establishing best practices, and sharing resources.  This is exactly what the national PPC TF does each and every day through the multidisciplinary collaboration, coordination and communication between 15 national organizations and several family advocates in order to improve the care for children and families with serious and life limiting illnesses. Thank you PPC TF leadership and members for your service to the Task Force and your dedication to the mission that all children and families who need access to quality pediatric palliative care wherever and whenever they need it will have it. We look forward to sharing with you early next year the Coalition’s new strategic plan and the Task Force’s new strategic framework to help guide our work.
 
May all that is beautiful, meaningful, and brings you joy be yours this Holiday Season and throughout the coming year.

Amy Melnick, MPA
Executive Director
National Coalition for Hospice and Palliative Care
Payment & Financing Workgroup
Members: Co-chair Melissa Hunt (SPPCP), Co-chair Tressia Shaw (NAHC), Holly Davis (NHPCO), Sarah Friebert (CAPC), Kristin James (PPC Coalitions), Dannell Shu (Family Advocate), Terri Warren (CHA)
 
The Payment and Financing workgroup continues to work towards the goal of developing a “gold standard” model for payment and financing of pediatric palliative care. We utilized our time during the retreat to map the payment and financing experience from the child and family perspective to better inform a model of payment. The work on this mapping will continue into the new year.

We also plan to work on relational mapping of Payment and Financing representation along with organizations representing PPC and children in general, and are dedicating time to reflect on our workgroup’s contribution to creating one voice among all the various organizations that represent PPC.

If you have questions about our work or resources or ideas to share, please email us at peds@nationalcoalitionhpc.org.
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Needs Assessment Workgroup
Members: Co-chair Savithri Nageswaran (NPCRC), Co-chair Solimar Santiago-Warner (SWHPN), Jennifer Bartz (Family Advocate), Allison DeLaney (APC), Danielle Eaves (ACLP), Rachel Thienprayoon (PCQC)
 
The Needs Assessment workgroup is actively working to identify state-level coalitions and stakeholders that can inform and contribute to the development of a national map of pediatric hospice and palliative care programs for children with serious illness and/or complex medical needs across the United States. As part of this effort, we plan to facilitate a focus group with the family advocates in the Task Force in 2022 to get their insight on what would make the geo-map more parent user friendly. The vision is to create a practical, user-friendly tool with up-to-date program and contact information that we all can all use: families and healthcare providers alike.

Our workgroup will also review and contribute to the next round of NHPCO surveys assessing the need and availability of PPC resources. 

If you know of any relevant data resources or information that might help us map the PPC landscape, please email Co-chair Solimar Santiago-Warren at peds@nationalcoalitionhpc.org.

Knowledge & Awareness Workgroup
Members: Co-chair Rachel Kentor (APA), Co-chair Jenni Linebarger (AAP), Tammy Kang (AAHPM), Matt Norvell (HCCN), Fiona Sampey (PAHPM), Jim Santucci (Family Advocate), Cheryl Ann Thaxton (HPNA)
 
We are busy evaluating the responses to our survey on how pediatric palliative care (PPC) is portrayed both within and by organizations. Fifteen of the 16 National PPC Task Force member organizations completed the survey. Our goal is to use this information to begin identifying common practices and recommendations for sharing and expanding knowledge about PPC within, between, and from the taskforce member organizations. We are also seeking to identify common needs and opportunities for collaboration.

Some of the early findings include:
  • 8 out of 15 organizations have a formal group dedicated to PPC
  • 9 out of 15 organizations have dedicated PPC representation
  • 13 out of 15 organizations do not have a formal or working definition of PPC
  • 11 out of 15 organizations partnered with others on projects related to PCC
  • 4 out of 15 organizations conducted a needs assessment related to PPC in the last three years
Our ultimate goal is to make providing pediatric palliative care easier. If you are involved in a national palliative care and/or hospice organization and wish to participate in our survey, please email Co-chairs Jenni Linebarger or Rachel Kentor at peds@nationalcoalitionhpc.org.

We are looking forward to sharing the complete findings from our survey in the next edition of PPC NOW.
Family Stories and Perspectives on Caring for a Child with a Serious Illness

The National PPC Task Force is proud to partner with Courageous Parents Network (CPN) on Eight Days a Week, featuring educational PPC resources from CPN’s digital platform that orient, empower and accompany families and providers caring for children with serious illness. Each edition will focus on a PPC topic. This month we share two videos that explore the role spirituality and faith can play in a family's experience.

For many parents, a serious diagnosis prompts a crisis of faith. In this video, pediatric psychologist Nancy Frumer-Styron explains the range of reactions parents may experience and a dad shares how he seeks miracles and finds God in his experience. You can access the video here. 

The faith of parents can also be their guiding star as their family navigates the journey. Faced with the decision to place a trach or not, a mother shares her hesitancy to change her son’s life and their family’s life with the complication a trach would bring and how her faith guided her choice. In this video, she shares how God came to her in her dreams and led her to decide against the doctors' recommendations for her son, and how her vision came true. "You can't touch momma-bear." 

We look forward to sharing more content with you in our next edition. Meanwhile, we encourage you to explore CPN’s Provider Portal, which is filled with resources, including scripts, for self-use during inflection points – e.g. delivering a serious diagnosis, introducing palliative care, supporting a family in bereavement – and in training of others..
The Power of Connection:
The Role of the Pediatric Palliative Care Chaplain

Amanda Borchik, M.Div., BCC, Pediatric Staff Chaplain, Vanderbilt University Medical Center, Nashville, TN, Association of Professional Chaplains (APC)

Spirituality at its core is about connection. For children, it's about how they feel connected to their sense of self, others, the transcendent or divine, and the world around them. In conversation with patients and families disoriented by a diagnosis, pediatric palliative care chaplains invite the sharing of their unique story, listening for how their values and spiritual connections support their resiliency. We assess through story, the language of humanity, and offer care in the incredible language of children: play.

When I met Owen in the hallway, he introduced me to his tiny stuffed panda, a Happy Meal toy ragged from adventures. I spent time getting to know him, learning about his family’s values and beliefs. In one visit, I brought a gold box filled with felt and familiar card-stock characters from the Good Shepherd parable his parents had taught him. Owen’s panda joined us and bounced around our green felt grass, but in the “dangerous place” of our story, his panda went into hiding. Owen became quiet and looked at his parents. We wondered together if his panda had ever been to a dangerous place before. Laughing, Owen said, “Yes, he goes BANG in the washing machine!” I asked if Owen had ever been in a washing machine before. Another giggle and then a shift, “No, but it’s like the machine downstairs where I go for scans.”

Click here to read more of Owen's story & the role of a PPC chaplain
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