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Welcome to the August Edition of PPC NOW!
We are delighted to welcome you to the second edition of PPC NOW, the quarterly newsletter from the National Pediatric Palliative Care Task Force.  We would like to thank 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 more than fivefold since the inaugural edition, to over 500 subscribers!
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When our last edition was published in May, we anticipated a summer of relaxing restrictions and increased travel as vaccinations rose nationally. We were full of hope and making plans for an in-person annual meeting in the fall. The emergence and wide virulent spread of the COVID-19 delta variant put an end to our plans to meet in-person, but our work to advance access to pediatric palliative care continues unabated. 

We are advocating for CMS to fund the development of pediatric patient-reported palliative care measures, similar to those recently piloted for adults, and for the inclusion of a pediatric pilot under the proposed Home and Community-based Service Act. We have partnered with national organizations to inform and develop educational training guidelines and to advance PPC internal and external initiatives. We aim to continuously raise PPC awareness, and to this end, we have presented on Task Force activities at a National Coalition for Hospice and Palliative Care meeting, submitted a talk for the AAHPM spring conference, scheduled a national webinar for early 2022, and are preparing to share our work in Grand Rounds at organizations across country.

PPC NOW is yet another example of our commitment to keeping pediatrics at the forefront of palliative care. In this issue, you will learn about the activities of each of our workgroups, hear from Dr. Lisa C. Lindley about opportunities to enhance pediatric hospice and concurrent care by leveraging the early and periodic screening, diagnostic, and treatment (EPSDT) benefit, and Dr. Tammy Kang about the role of palliative care in supporting self-care.
As we plan for the Task Force's first annual retreat (virtually) in November, it remains our profound privilege to serve our community in these roles. We welcome your suggestions and ideas as we continue to reach across the PPC field to build strong, multi-disciplinary, collaborative connections that will ensure as our vision states, “equitable access to high-quality pediatric palliative care for everyone.”  Please feel free to reach out to us at

Rachel Thienprayoon, MD
Cheryl Ann Thaxton, DNP
Appreciation for Our Colleagues During These Difficult and Unprecedented Times

The last month has brought the rise of the fourth wave of COVID-19 in the delta variant.  Children are returning to schools without mask mandates and more children are becoming sick, requiring hospitalizations, and dying of the delta variant of COVID-19.  We are grateful to our pediatric colleagues who advocate tirelessly for state and federal policies to keep children safe during this time.  We acknowledge the suffering of our colleagues on the frontlines caring for COVID-19 patients.  Our hearts are with all of those who have lost, and continue to lose, loved ones to this terrible virus— especially the estimated 100,000+ bereaved children in the US whose lives are forever changed by the death of their parents and caregivers.
The Role of Palliative Care Team in Promoting Self-Care During Times of COVID

In response to the dramatic rise in pediatric COVID-19 hospitalizations due to the highly infectious delta variant, some children’s hospitals, including Texas Children’s in Houston, have put elective surgeries on hold that require hospitalization, been forced to limit or not accept transfer patients due to lack of ICU beds and have creatively opened additional acute care beds.  The start of school coupled by erratic mask mandates and practices has healthcare providers anticipating that the number of children contracting the virus will only increase and likely too the number of hospitalizations, exacting an emotional and physical toll on hospital staff, many of whom are already stretched beyond capacity. 

We asked Tammy Kang, MD, Section Chief, Palliative Care, and Executive Vice Chair, Department of Pediatrics at Texas Children’s Hospital, and PPC Task Force Member (AAHPM) for some advice on the role pediatric palliative care teams can play in supporting self-care among their colleagues during these challenging times.

“As palliative care specialists, we can reflect on what we have learned from our own experiences. A lot of what helps our team navigate stressful weeks and difficult moments is our ability to debrief in the moment - talking to someone on your team in real time who is witnessing what you’re witnessing, experiencing what you’re experiencing. We need to explore ways in which we can support our ICU, ED, and acute care teams in the moment with personal connections, in addition to more common recognition and gratitude items that encourage people to take that needed break."
"We need to explore ways in which we can support our ICU, ED, and acute care teams in the moment with personal connections."
"We need to ask ourselves what we can do to bring voice to that personal connection that we kind of lost during the pandemic to the degree we can within the constraints of the hospital and the pandemic. Should there be a staff experience team whose role it is to check in regularly with those in the thick of it and those working hard behind the scenes?

Our hospitals are working hard to put self-care options in place, like mindfulness apps, respite rooms, meal and snack deliveries, and employee assistance teams you can call for emotional support. We, as palliative care providers know that while these things are much needed and appreciated, there are those that don’t have the energy to engage in them on their own.  Making rounds and just checking in; looking people in the eyes, not on Zoom, and asking how are you doing can be equally or more impactful in both the short and long term.”
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 has had a busy summer. We partnered with the Greater Illinois Pediatric Palliative Care Coalition (GIPPCC) to evaluate the state’s Pediatric Palliative Care Bill (SB.2384) prior to its passage in June, and are now supporting GIPPCC’s efforts to develop a Medicaid payment model, provider and patient eligibility standards, intake protocols, and quality assurance measures. Together, we are striving to establish a PPC model of financing and care delivery that can be instituted by other states around the country.  
Another exciting development on the horizon, the Center to Advance Palliative Care (CAPC), a Coalition member organization, recently announced plans to develop a payment and financing toolkit for new and emerging PPC programs. Our workgroup is looking forward to collaborating with CAPC in their efforts.
Assessment of the current state of pediatric palliative care payment and financing and development of a “gold standard” reimbursement model remains an important mission for our workgroup. We are interested in hearing from you about what a "gold standard" reimbursement model requires. Please email us at

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), and Rachel Thienprayoon (PCQC)
The Needs Assessment workgroup is working toward creating a national map of pediatric hospice and palliative care programs for children with serious illness and/or complex medical needs in the United States. 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.

We are currently focused on identifying pediatric palliative and hospice care program data from (1) needs assessments conducted by national organizations over the past 5 years, (2) literature review, and (3) state-level coalitions and stakeholders. With this information, we will seek to ascertain gaps in available national pediatric hospice and palliative care programmatic data and create a plan to fill those gaps.

If you know of any relevant data resources or information that might help us assess the PPC landscape, please email Co-chair Solimar Santiago-Warren at

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), and Cheryl Ann Thaxton (HPNA)
Our survey to assess how pediatric palliative care (PPC) is portrayed both within and by organizations was distributed to the 16 National PPC Task Force member organizations earlier this month. While we don't yet have the complete aggregate data to analyze, preliminary review of current responses does appear to reflect some common themes and practices as well as demonstrated collaboration across the field, particularly in education and professional development.
Other insights we’re seeking to gleam from the results include:
  • Assess whether a common definition of PPC exists
  • Highlight PPC educational offerings provided by each organization
  • Determine what online content the organizations have regarding PPC (both internally and externally)
  • Identify the next tier of organizations and groups to survey
Once we have received responses from our Task Force member organizations, we will send out another iteration of the survey to other outside organizations. If you are involved in a national palliative care and/or hospice organization and wish to be included, please email Co-chairs Jenni Linebarger or Rachel Kentor at

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.

Words matter – what, when and how they are delivered. Communication is a cornerstone of pediatric palliative care, and when difficult conversations are handled well, “it can make the impossible slightly less impossible,” says Blyth Lord, CPN founder. In the CPN videos and blog featured below, parents share how the way their child’s doctor or team spoke with them helped them navigate difficult decisions about their child’s care.

“Tell me what you understand about your child’s condition,” is the opening line of Liz Morris’ blog, Language that Builds a Bridge, in which she writes about how providers either invite or rebuff parental agency and empowerment through the words they use.

This video features a conversation between Kate, a mom of two sons born with cardiomyopathy, and her sons’ heart doctor, Dr. Elizabeth Blume, about shared decision-making and the delicate balance between strong parent advocacy and strong medical counsel. Remembers Kate, “In that moment, I needed to be told ‘This is what your child needs.’”

“Are you sure you want to do these things?” In this video, the mother of a 22-month old with leukodystrophy talks about how their pediatrician is helping them consider their goals of care and think through which interventions they want for their daughter Rachel. 

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..
Is Your Interdisciplinary Team Complete?
Engage a Pharmacist to Optimize Drug Therapy

Melissa Hunt, Pharm.D., Pediatric Clinical Pharmacist, Optum Hospice Pharmacy Services, Society of Pain and Palliative Care Pharmacists (SPPCP),

Everyone has a role to play on the interdisciplinary team, and each member of the team brings unique value and expertise essential to providing high-quality care. You wouldn’t expect the social worker to administer medications or the child life specialist to write a prescription, but they are integral members of the team. However, often when we list key members of a pediatric palliative care team we neglect to include a clinical pharmacist, despite the fact that medication is often an essential component for controlling children’s pain and symptoms, a key factor in avoiding hospital admissions.

Medication use in pediatric patients is complex and challenging, especially administration.  A majority of commercially-available medications are not formulated for the routes of administration, dosing, and taste preferences specific to pediatric patients.  This leads to various manipulations of adult dosage forms and increased risk for dosing errors and toxicity.  Medication doses are based on age and weight in children, with guidance changing as the patient ages. A pharmacist, especially one with pediatric training, works to prevent dosing errors and toxicity by recommending appropriate doses and formulations. 

While feeding tubes are not extremely common in the adult population, they are often used in children requiring palliative or hospice services.  Feeding tubes can provide an excellent means for medication administration.  However, some medications cannot be crushed, may clog feeding tubes, or may interact with feeds.  Pharmacists can determine which medications can be administered via feeding tube or crushed and sprinkled on soft food, as well as provide recommendations to restore and maintain patency of enteral feeding tubes.

Additionally, as a member of the team, a clinical pharmacist can provide expert medication review and evaluate for cost-effective options, drug interactions, side effects, duplication of therapy, and many other medication-related issues.  A pharmacist can also provide education to team members regarding appropriate medication use, new drugs on the market, and pediatric-specific medication administration concerns.
Click here to learn more about the role of a PPC pharmacist
Talk at the National Level
CAPC and Yale Launch "Palliative Care Policy GPS"
In recent years, there has been a significant increase in the number of policies to support better access to palliative care for people living with serious illness. The new “Palliative Care Policy GPS” (developed by CAPC and the Solomon Center for Health Law & Policy at Yale Law School) is a platform to track developments rapidly across the country in a centralized manner. It has a specific pediatric palliative care search function and enables palliative care champions to share policy progress, analyze trends, identify areas for collaboration, and support advocacy on topics such as workforce, payment, quality, and pediatric palliative care. The first phase of the project focuses on state legislation, while later phases will then expand to include state regulation and federal policy. Champions are encouraged to explore the GPS and share policies that have recently been introduced in their states. Learn more here.
Untangling Concurrent Care
It has been over a decade, since Section 2302 of the Affordable Care Act mandated state Medicaid/Children’s Health Insurance Program (CHIP) to finance concurrent curative treatment and hospice care for children, but a recent study indicates that concurrent care guidelines vary widely from state to state. Without consistent guidance or support, many hospice providers are uncertain as to how to deliver concurrent care. Dr. Lisa C. Lindley is a renowned pediatric hospice researcher and has been tracking concurrent care data from its inception. In response to her research on guideline variability, she launched a descriptive exploratory study that is delving into opportunities to supplement and enhance pediatric hospice care, and more specifically concurrent care, by coordinating services with the early and periodic screening, diagnosis, and treatment (EPSDT) program. A mandatory benefit for more than 50 years, EPSDT was designed to cover all medically necessary services, including those to "correct or ameliorate" pain and symptoms stemming from physical and mental illness conditions, but like concurrent care there is significant variability in its guidelines and implementation across the US. Click here to read more about Dr. Lindley’s efforts to untangle EPSDT and concurrent care.

State of the State Talk
Illinois Passes Critical PPC Legislation
The Illinois State Assembly passed Pediatric Palliative Care Bill (SB.2384) in June. The legislation supports the creation of an in-home palliative care benefit for children with life-limiting conditions. Spearheaded by the Greater Illinois Pediatric Palliative Care Coalition (GIPPCC), the resulting Medicaid benefit will make community-based, interdisciplinary palliative care services more accessible to children and their families and develop a sustainable revenue stream for pediatric palliative care (PPC) providers. Children enrolled in the benefit will be able to receive curative treatments in tandem with PPC services.

Michigan's Partners for Children Program Advances a Statewide Benefit
Michigan is primed to create a statewide Medicaid palliative care benefit for children with medical complexity following the success of the state's Partners for Children (PFC), a grant-funded pilot program that provides in-home pediatric palliative care services. The proposal, which will leverage federal support from the ACE Kids Act and the Health Homes (2703) waiver of the Affordable Care Act, will not require special legislative funding and is currently under careful review by Department of Health and Human Services and Medicaid leadership. It is supported by the Michigan Hospital’s Council on Children’s Health, the advisory committee for Michigan’s Children’s Special Health Care Services, and leadership at Michigan’s two major children’s hospitals.   
Launched in 2018, PFC has served over 100 children to date and has a growing waiting list. Home or telehealth visits (depending upon the family’s preference) with the child’s dedicated nurse practitioner and social worker are scheduled every 4 to 6 weeks. Families also have access to 24/7 on-call support. The in-home teams are backed up by a hospital palliative care physician and supported by a care coordinating nurse.  An ancillary team at the hospital includes a dietician, a dentist, a pharmacist, a PMR provider, and an education specialist. In addition, the palliative care team maintains close communication with the child’s primary care provider and specialists.
PFC has consistently high parent satisfaction and has demonstrated notable reductions in hospital and ICU stays resulting in substantial cost avoidance.  For the 77 children with Medicaid in years one and two there was a monthly per member per month savings to Medicaid of over $2000.
NHPCO's Pediatric e-Journal: Over 25 Years of Pediatric Palliative and Hospice Care Wisdom

Christy Torkildson, PhD, RN, PHN, FPCN, Professor, Grand Canyon University and Chair and co-editor, Pediatric e-Journal by NHPCO 
For more than a quarter of a century, National Hospice and Palliative Care Organization’s (NHPCO) Pediatric e-Journal (formerly known as the ChiPPS e-Journal/Newsletter) has been a critical and leading source of information and education relevant to pediatric palliative and hospice care (PPHC).  The world’s longest consistent PPHC publication, the Pediatric e-Journal was founded in 1995 in response to a conversation among PPHC practitioners about the numerous challenges in their work resulting from relative isolation, limited research availability, and a lack of adequate resources to offer optimal care and service.
The original goal and sustaining mission of the Pediatric e-Journal is “to disseminate current information about the care of children with life-limiting conditions in order to optimize the provision of comprehensive services that families need.”
Each issue focuses on a central theme relevant to pediatric palliative and hospice care from a variety of perspectives.
"We strive to include submissions that are multi-disciplinary in nature. We also make an effort to include articles that represent family voices of those who are served in the field of pediatric palliative and hospice care in order to ground us in why we do this work."
Chuck Corr, PhD, Sr. Editor
Peer-reviewed but not indexed, the Pediatric e-Journal is published quarterly and distributed to all NHPCO members and its nearly 4000 subscribers. As a community service of NHPCO, it is available for free to members and non-members. To subscribe click here.  
Current and archived issues are also available online. Recent topics include “Living with COVID 19,” “Self Care,” and “Care Throughout the Dying Process.”
For any questions please contact Christy Torkildson, Chair of the e-Journal workgroup, at or Suzanne Toce, Co-Chair, at
Copyright © 2021 National Coalition for Hospice and Palliative Care, All rights reserved.

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