PEDIATRIC ADVISORY COUNCIL
Released in collaboration with the National Hospice and
Palliative Care Organization
Pediatric e-Journal
ANNIVERSARY ISSUE
ISSUE #75 | MAY 2024
National Hospice and Palliative Care Organization
ISSUE #75 | MAY 2024
Pediatric e-Journal | Anniversary Issue
Pediatric e-Journal
Pediatric Palliative and Hospice Care
Issue #75 | May 2024
Issue Topic: Anniversary Issue
Welcome to the 75th issue of our Pediatric e-Journal. When we produced the irst issue of our Pediatric e-Journal
(then called the NHPCO Pediatric Palliative Care Newsletter, and later the ChiPPS Pediatric Palliative Care
Newsletter/Journal), it is likely that we did not imagine we would still be delivering free, quarterly, electronic issues
some 20 years later. But here we are thanks to NHPCO, to our growing list of readers, to our contributors, and to
everyone who has taken part in the Workgroup that is the backbone of this project.
Each issue of this e-Journal typically is organized around a focal theme. In this anniversary issue, however, we have
simply brought together an eclectic group of articles that illustrate many aspects of the breadth and depth of how
pediatric hospice and palliative care has grown over the years. As you will see, articles in this issue range from: a
newcomer’s perspective to the views of very experienced clinicians in pediatric palliative and hospice care; from
comments about the roles of bereaved parents in helping to educate caregivers to advocacy for the contributions
of child life specialists and psychologists; from insights about the great value of respite care to the important roles
of statewide PPC coalitions; from educational programs for nurses to the importance of grief care for PPC
professionals, and to the development and maintenance of relationships between hospice programs and pay source
stakeholders in concurrent care.
This e-Journal is produced by the Pediatric e-Journal Workgroup and is a program of the National Hospice and
Palliative Care Organization. The Pediatric e-Journal Workgroup is co-chaired by Christy Torkildson and Melissa
Hunt. Chuck Corr is our Senior Editor. Archived issues of this publication are available at https://www.nhpco.org/
palliativecare/pediatrics/
Comments about the activities of NHPCO’s Pediatric Advisory Council, its e-Journal Workgroup, or this issue are
welcomed. We also encourage readers to suggest topics, contributors, and speciic ideas for future issues. We are open
to suggestions for the next two issues to follow in 2024 and for those thereafter. Our tentative plan is to address social
media, technology, and communications in Issue #76 and home care in Issue #77. If you have any thoughts about these
topics or other subjects for future issues in 2025 and/or potential contributors (including yourself?), please contact
Christy Torkildson at Christy.T[email protected] or Melissa Hunt at [email protected].
Views expressed in this and other issues of the Pediatric e-Journal are exclusively those of the authors and do not
necessarily relect the views of the Pediatric e-Journal Workgroup, the NHPCO Pediatric Council, or the National
Hospice and Palliative Care Organization.
nhpco.org
National Hospice and Palliative Care Organization
ISSUE #75 | MAY 2024
Pediatric e-Journal | Anniversary Issue
Produced by the Pediatric e-Journal Workgroup
Charles A. Corr, PhD, Lacey, WA; Senior Editor
Ann Fitzsimons, BS, MBA, Executive Director, here4U,
Inc., Farmington Hills, MI
Michelle Goldbach, DNP, MHA, RN, Director of Nursing,
The Bernardy Center, Rady Children’s Hospital, San
Diego, CA
Betsy Hawley, MA, Executive Director, Pediatric Palliative
Care Coalition, Pittsburgh, PA
Melissa Hunt, Pharm.D., BCPPS, Pediatric Clinical
Pharmacist, Optum Hospice Pharmacy Services,
O’Fallon, MO, Co-Chair
Nathan Ionascu, MD, Bioethics Consultant, Westchester
End-of-Life Coalition, Westchester County, NY
Oralea Marquardt, LCSW, Licensed Clinical Social
Worker, Pediatric Program Manager, Treasure Coast
Hospice, Fort Pierce, FL
Matthew R. Misner, DO, MS, MAPS, Pediatric Hospice
Physician/Bioethicist, Center for Hospice Care,
Mishawaka, IN
Jessica Sturgeon, MT-BC, HPMT, NICU-MT, Director,
Pediatric Care Coordination Capital Caring Health,
Capital Caring Kids, Falls Church, VA
Suzanne Toce, MD, Retired Neonatologist, Gundersen
Health System, La Crosse, WI
Christy Torkildson, Ph.D., RN, PHN, FPCN, HEC-C, Grand
Canyon University, Professor & Program Lead, MSN-
Public Health Nursing & MSN-Health Care Quality
Programs, College of Nursing and Health Care
Professions; Ethics Consultant, Banner University
Medical Center, Phoenix, AZ; Executive Director,
Children’s Hospice and Palliative Care Coalition of
California; Co-Chair
Judy Zeringue, MAPL, BSN, RN, CPLC, CHPPN, Urology
Nurse Navigator, Palliative Care Champion, Children’s
Hospital New Orleans, New Orleans LA
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Pediatric e-Journal | Anniversary Issue
Table of Contents
Click on the “bookmark” tab on the left-hand side of the PDF document for links to the following articles.
Issue #75 | Anniversary Issue
Introductory Message from the Pediatric Advisory Council Co-Chairs p. 1
Holly Davis MS, APRN, Marilyn Fisher, MD, MS
A Note of Thanks p. 4
Ben Marcantonio, COO and Interim CEO of NHPCO
A Newcomer’s Perspective: What I Have Learned from Pediatric Palliative Care p. 5
Michaila Kaufman, BSN, RN
When an experienced nurse joins a Pediatric Advanced Care Team she inds things different: “Evident on my irst
day, I found that pediatric palliative care (PPC) embodies a blend of clinical expertise and person-centered care,
empowering patients and reducing suffering.” In her irst consultation, she “realized the most essential aspect of
PPC is its unwavering dedication to knowing the individual beyond the illness, including their joys, fears, and
aspirations” and she adds that, “One of the most important lessons I have learned since joining the PACT team is
the profound signiicance of effective communication, and that words carry weight.” Additional lessons make this a
meaningful introduction to our issue.
I’m Feeling Hopeful. I’m feeling Anxious. p. 7
Blyth Lord
In this article, the Executive Director of Courageous Parents Network, herself a bereaved parent and aunt, relects
on the 10th anniversary of CPN and the good work it has done as part of the growth of the ield of pediatric
palliative care. She takes note of the generous involvement of clinicians and the increasing appreciation of parents
for how PPC can improve the lives of their children and families. At the same time, her anxiety arises from two
trends: “The irst trend is the fact that remarkable advances in medical technology are allowing more and more
medically fragile children to live longer and longer,” which has both advantages and disadvantages; the second
trend is “the shortage of the home care nurses and personal care assistants who make it possible for families to
care for these children at home.” Still, she closes on a hopeful note.
Bereaved Parents as Educators of Clinicians: Relections and Invitations
for Continued Relational Learning within Pediatric Palliative Care p. 9
Dannell Shu
This author is herself a bereaved parent and a long-time advocate for the role of bereaved parents in clinician
education. In this article, she relects on the role of the Initiative for Pediatric Palliative Care in fostering the roles
of bereaved parents as advocates and educators. She also identiies four key factors for continued growth, each
with action invitations.
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Palliative Care PR: Exploring New Message Strategies p. 14
Jared Rubenstein, MD
This article begins from the following premise: “[D]espite the call to start palliative care as early as possible,
referrals to subspecialty palliative care often come much later than we would like. Not only does it seem like this
messaging has not been enough to break the palliative care stigma among healthcare workers, there is now even
data that clinicians often project palliative care stigma onto patients and their families! There also continue to be
calls to rename our ield because ‘palliative care has an image problem.’” If these premises are correct, what should
we do? This author suggests drawing on the robust body of literature demonstrating the beneits of palliative care
and then recommends that we “focus on a strategy with 3 levels: the state and national level, the institutional level,
and the individual level.” He concludes: “I hope we can feel secure in our seat at the table as we work to ensure that
all people with serious illness and their families receive the standard of care: patient- and family-centered palliative
care, based on their needs, and as early as possible.”
Diversity, Equity, Inclusion: Words Matter p. 16
Christy Torkildson, PhD, RN, PHN, FPCN, HEC-C, Joseph C. Torkildson, MD, MBA,
and Anthony Perillo, PhD
“Words matter” is an important theme in our keynote article in this issue. Here the authors expand on that theme
in a practical and insistent manner, especially as it relates to PPC. One important focus is how caregivers in our
ield document their patients, keeping always in mind “Who needs to know what when?” The article offers extensive
resources and references to guide caregivers in these matters.
Crowdsourcing Pediatric Palliative Care and Elevating the Pediatric Voice:
The Story Behind The National Coalition for Hospice and Palliative Care’s Pediatric Division
(formerly The National Pediatric Palliative Care Task Force) p. 22
Holly Davis, MS, APRN, Cheryl A. Thaxton, DNP, APRN, CPNP, FNP-BC, CHPPN, FPCN, ACUE, FAANP,
Rachel Thienprayoon, MD, MSCS, FAAP, FAAHPM, and Devon Dabbs, BBA
As its title indicates, this article traces the evolution of what is now the Pediatric Division of The National Coalition
for Hospice and Palliative Care to become a formal body that can advocate on behalf of the ield and increase
access to services.
A Children’s Respite Home Is Where the Heart Is p. 24
Kasey Kaler and Jonathan Cottor, MBA, MPH
This article follows an earlier one by these authors in Issue #74 of our Pediatric e-Journal. Both articles argue for
the critical value of respite care for children with medical complexity and for their family members. They offer
several examples of both the need for respite in PPC and of responses to that need in particular cases and in a
nationwide collaborative coalition. They conclude that, “A community-based children’s respite home is an extension
of a family’s own home and a temporary haven.” And they invite readers “to get involved and learn more about
existing programs, emerging programs, or where talks of additional homes are happening” and “to join our mission
to scale, strengthen, and sustain community-based children’s respite, palliative, and hospice home programs.”
Prescribed Pediatric Extended Care p. 28
Judy Zeringue, MAPL, BSN, RN, CPLC, CHPPN
This article describes a Medicare beneit that provides “community based, family-centered, non-residential settings
designed to provide compassionate, skilled medical care and therapies for medically fragile children who experience
chronic health conditions.” Children who meet the eligibility requirements may be covered from birth through 21
years old. The article provides examples from the states of Florida (PPEC-Prescribed Pediatric Extended Care) and
Louisiana (PDHC-Pediatric Day Health Care).
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Pediatric Long-Term Care: A Place and a Role p. 30
Matthew R. Misner, DO, MS, MAPS
This article describes an important form of care and relief for families with children with complex medical
conditions, namely pediatric long-term acute care (LTAC) facilities. The article describes both the beneits of such
services and current barriers. It also gives examples of existing LTAC services.
Toward a Deinition of Adult Hospices Caring for Children p. 33
Heather A. Davis, PhD, and Lisa C. Lindley, PhD, RN, FPCN, FAAN
This article explores the guidance available for hospice services for children and young adults, identiies the
differences between adult hospices and pediatric hospices, and proposes a deinition of adult hospices that
become involved in caring for children.
State of Pediatric Palliative Care, Oklahoma p. 37
Rachna May, MD, and Amanda Page, MD
The authors of this article describe services offered by the sole program providing pediatric care in the state of
Oklahoma. While this program serves approximately 400 patients annually, these authors note that, “Work
remains to be done to capture all the children that would beneit from our services; we continue to strive to expand
our services to ill this gap.”
Statewide Pediatric Palliative Care Coalitions p. 38
Betsy Hawley, MA, and Christy Torkildson, PhD, RN, PHN, FPCN
The authors of this article explain that “Statewide Pediatric Palliative Care Coalitions (SPPCCs) play a crucial role
in ensuring that equitable palliative and end-of-life care is available in all areas of every state across the country.”
They explain that currently there are 29 states with some form of a SPPCC, including two regional coalitions, and
they point out the key roles of such coalitions in collaboration and advocacy.
Application of the Logic Model to Build a Statewide Pediatric Palliative Care Coalition p. 40
Eileen R. O’Shea, DNP, APRN, PCNS-BC, CHPPN, Charlotte Delmonico, BSN, and
Lisa McCabe, MSN, APRN, PCNS-BC, CCRN, NPD-BC, NC-BC, CHPPN
This article explains how a logic model “was used to establish a pediatric palliative care coalition in CT and create a
work plan informed by a diverse group of stakeholders familiar with historical challenges and gaps in current
resources in the state.” It explains how stakeholders came together, obtained funding, established partnerships,
and implemented short, medium, and long-term outcomes.
ELNEC Palliative Care Education for Nurses p. 44
Vanessa Battista DNP, MBA, CPNP-PC, CHPPN, FAAN, FPCN, and Betty Ferrell, PhD, CHPN, FAAN, FPCN
The End-of-Life Nursing Education Consortium (ELNEC) curriculum is “a global education initiative to improve
palliative care for nurses and other healthcare professionals.” It was irst launched in 2001, but by 2003 the need
was clear for an ELNEC Pediatrics curriculum. This article describes that pediatric curriculum and explains how it is
offered in an online format. The article also describes the launch in 2013 of the ELNEC Advanced Practice
Registered Nursing (APRN) curriculum and in 2019 the initial offering of the ELNEC Graduate Curriculum for
master’s and Doctor of Nursing Practice (DNP) students.
The Evolution of Child Life in Hospice and Palliative Care p. 47
Jennifer Mangers-Deans, MHA, MS, CCLS, and Alyssa Friedberg, M.Ed., CCLS, GCCA-C
The evolution of the role of Certiied Child Life Specialists (CCLS) began in 2011 when “a hospice organization in
Illinois hired a CCLS to create the irst child life program for pediatric hospice and palliative care in Illinois. The goal
was to provide emotional support, education, therapeutic play, sibling support, and legacy building focused on
children diagnosed with a terminal illness and their families.” By 2022, an online support group, “established to
foster communication, collaboration, and camaraderie among CCLS in hospice & palliative care,” had grown “to
over 200 members working with children at the end of life.” Subsequent developments are also noted in this article.
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Psychologists in Pediatric Palliative Care: The Future Is Bright p. 49
Amanda L. Thompson, PhD
This article seeks “to expand understanding of psychology’s role in PPC and how we contribute to research, clinical
care, education/training, advocacy, and more.” The article identiies roles for psychologists in both assessment and
intervention in PPC. Some initial points for consideration and guidance include different models of how
psychologists can be integrated into the PPC IDT, how the need for such professionals can be assessed and data
collected, and how business plans can demonstrate the holistic impact of psychologists’ inclusion.
Spiritual Care Education to Support Pediatric Palliative Care p. 53
Judy Zeringue, MAPL, BSN, RN, CPLC, CHPPN
The author of this article points out that, “Spiritual care is an important aspect of total patient/family/caregiver
care.” On that basis, she argues that, “Spiritual support is essential in providing holistic care and serving those
entrusted to our care with respect and dignity” and provides some resources for professional growth in spiritual care.
The Case for Enhanced, Proactive Professional Grief Care for Pediatric Hospice
and Palliative Care Professionals p. 56
Dianne Gray, B.S.
This article argues that, “Bearing witness to the unique, profound suffering that accompanies children and their
family members as they face acute pain and the emotional and spiritual suffering inherent in most pediatric serious
illnesses, death, and grief journeys is beyond the scope of expertise for most hospice care providers.” On that basis,
the author maintains that, “Providers of pediatric hospice and palliative care need a substantial increase in the
scope and coverage under the employer-sponsored professional bereavement beneits that correlate to the length
of time of service, role, and responsibility inherent in the provision of care of seriously-ill and dying children and their
families.” This emphasis on what organizations can do in supporting staff can be one important aspect of a
comprehensive program of personal and self-care in mitigating staff stress.
Concurrent Care Payor Relationships: Development and Maintenance p. 59
Allison Kuchar, MSCHA, MBA, CHPO, CEOLS, and Jessica Sturgeon, CLS, MT-BC, HPMT, NICU-MT
This article offers a detailed discussion of some implications of the implementation of the concurrent care
provisions of the Affordable Care Act whereby “children enrolled in Medicaid can have curative and/or life-
prolonging treatment at the same time as hospice care.” The article focuses on relationships between hospice
organizations and pay source stakeholders. Discussion is arranged under three main headings: Relationship
Investment with Pay Source Stakeholders; Ongoing Concurrent Care Management and Collaboration; and
Coordination of Concurrent Care. The article concludes: “Though the interpretation and utilization of concurrent
hospice care can vary state-to-state, the establishment of relationships, expectations, and coordination remain a
vital part of how hospice is offered to children nationally. The fundamental collaboration between agency and
payor can set programs up for success and, hopefully, promote longevity in accessing end-of-life care for the
pediatric population.”
Items of Interest p. 65
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Introductory Message from the Pediatric
Advisory Council Co-Chairs
Holly Davis MS, APRN
AVP of Clinical Services
VIA Health Partners
DavisH@hpccr.org
Marilyn Fisher MD, MS
Professor of Pediatrics
Professor, Biomedical Ethics Education & Research
Chair, IRB Committee on Research Involving Human Subjects
Albany Medical Center
We are delighted to introduce this 75th issue of the NHPCO pediatric e-journal: A Celebration of the e-journal: State
of Pediatric Palliative Care in the US. Much has transpired within National Hospice and Palliative Care Organization
(NHPCO) and its Pediatric Advisory Council since it published Issue 50: A Look Back and a Look Forward in 2018.
Formerly called the CHiPPS Leadership Advisory Council of the Children’s Project on Palliative/Hospice Services, in
2020, we were re-named simply the Pediatric Advisory Council (PAC) of NHPCO. Although our name changed, our
role within NHPCO has remained the same. Our goal continues to be to assist NHPCO in identifying, developing,
and disseminating practical strategies to the community provider that advances care for children and their families
coping with life-threatening conditions, with dying, and with bereavement.
Advocacy. In order to pursue this goal, PAC continues to advocate, at the local, state and national level, for resources
for patients, their families, and their health care providers. The PAC has representation on each of the NHPCO
Committees and Councils, called a pediatric liaison, to represent and give voice to the pediatric hospice and palliative
care needs. The pediatric liaisons and committees are Tarek Zetoune (Quality & Standards), Christy Torkildson
(Ethics), Steven Smith (Palliative Care) and Holly Davis (Regulatory). Holly Davis also serves as the NHPCO
representative to the National Coalition for Hospice and Palliative Care (NCHPC) Pediatric Division, where she
recently moved into the role as the Chair of the Division. The efforts of the pediatric liaisons help to integrate the
pediatric needs into the work each Committee and Council at NHPCO does from inding inancial and other
resources, within the government and elsewhere, to adding quality of care for pediatric patients and their families.
Currently, PAC is working on 2 projects focused on assessing how concurrent care is addressed within each state and
working with private insurers for coverage of concurrent care. The newly updated Concurrent Care for Children Toolkit
and the newly developed resource guide for working with private insurance will be made available in May 2024.
Education. In order to further pursue the goal of enhancing services received by the pediatric population, our
mission is to help educate healthcare providers who may care for pediatric hospice and palliative care patients and
their families in the community. Education of the community providers starts with assessing the needs of the ield
and access to quality pediatric palliative and hospice care. The Pediatric Standards of Care for Hospice Programs
was updated and published in 2022. In May, PAC will be conducting the 2024 National Pediatric Needs Survey. The
last Needs Assessment Survey was conducted pre-COVID, in 2020. Arising in part from information acquired by the
previous Needs Survey and research, NHPCO published the Pediatric Facts and Figure Reports in 2023. PAC
continues to offer regular education opportunities, through in-person and virtual conferences, webinars, as well as
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publications such as resource guides and the e-journal that you are reading now. Guided by PAC members Christy
Torkildson, Ann Fitzsimons, Betsy Hawley, and Melissa Hunt, this quarterly e-journal is the longest, continuous,
peer-reviewed publication focused on pediatric hospice and palliative care in the US. These educational
opportunities, spearheaded by the PAC, have been created to help address providers’ needs for education/training,
program development, and giving voice to the needs of our patients and families.
We wholeheartedly thank all the PAC members over these past 6 years who have sellessly volunteered additional
time to serve on PAC and those who served as pediatric liaisons for other NHPCO committees or councils, in order
to better represent the pediatric population’s needs within NHPCO.
No summary of the past few years would be complete without mention of how the COVID pandemic affected us
all. To the PAC and NHPCO members, COVID meant that our in-person annual meetings had to be inconveniently
cancelled and changed to a virtual format. The COVID pandemic taught us how to successfully provide education
via live virtual conferences, pre-recorded webinars, and saved video presentations. To the patients and their
families, however, COVID represented one extra threat out there that could be the tipping point between life and
death. To the health care providers, who might be pediatric palliative care providers, or who might be general
pediatric providers or emergency room physicians not expecting to encounter so many critically sick infected
patients, COVID shook us to the core. It made us feel our own mortality and to fear for our own health even as we
cared for the sick people around us. The COVID pandemic prompted the fact that the topic of e-journal Issue #61
was Self-Care of the PPC/Hospice Professional/Team, that #62 was Lessons Learned from COVID-19, and Issue #63
was Telehealth & Hospice/Palliative Care. During the COVID pandemic, many health care professionals left the ield,
leaving a signiicant void that others tried to scramble to cover. Nevertheless, like the rest of the nation in other
health care specialties, we are still experiencing shortages in stafing in the pediatric hospice and palliative care
ield. In hopes of developing more numbers of competent palliative care providers, there has been a move towards
providing training and certiication for midlevel career physicians partially on line.
As we consider the State of Pediatric Palliative Care in the US with Issue #75, we would like to “look forward” to our
ranks being re-joined by people who have previously worked in the ield as well as those who are new graduates, or who
are hoping to expand their practice to become part of integrated pediatric palliative care teams. As the Pediatric
Advisory Council of NHPCO, we look forward to advocating for appropriate stafing and reimbursement of providers,
and look forward to continuing to provide excellent educational opportunities for pediatric palliative care professionals.
All of these resources mentioned above, as well as all of the previous issues of the E-journal, can be found on the
NHPCO Pediatric webpage www.nhpco.org/pediatrics. You can also email your pediatric hospice and palliative care
questions related to program development, regulatory requirements and/or quality standards of care directly to
NHPCO at [email protected]g.
In recognitions of all the hard work, dedication, and countless hours, we would like to extend our heartfelt
appreciation and THANK YOU to each of the PAC members and E-Journal Workgroup members.
Pediatric Advisory Council
Holly Davis, MS, APRN Co-Chair Marilyn Fisher, MD, MS Co-Chair
Tara Derby, LMSW Ann Fitzsimons, BS, MBA
Deb Fisher, PhD, RN, PPCNP-BC, CHPPN Michelle Goldbach, DNP, MHA, BSN, RN
Betsy Hawley, MA Melissa Hunt, PharmD, BCPPS
Kellyn LaLiberty, AAS, RN, CHPN Jennifer Mangers-Deans, CCLS, MS
Oralea Marquardt, LCSW Matt Misner, MD, MS, MAPS
Jennifer Palmer, RN Katie Randsdell, MS
Steven Smith, MD Christy Torkildson, PhD, RN, PHN, MSN
Tarek Zetoune, MD, MBA Alix Ware, JD, MPH NHPCO Liaison
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E-Journal Workgroup
Charles A Corr, PhD Senior Editor and Founding member Melissa Hunt, PharmD, BCPPS Co-Chair
Christy Torkildson, Ph.D., RN, PHN, FPCN, HEC-C, Co-Chair Nathan Ionascu, MD
Michelle Goldbach, DNP, MHA, BSN, RN Betsy Hawley, MA
Ann Fitzsimons, BS, MBA Matt Misner, MD, MS, MAPS
Jessica Sturgeon, MT-BC, HPMT, NICU-MT Suzanne Toce, MD Founding member
Judy Zeringue, MAPL, BSN, RN, CPLC, CHPPN Oralea Marquardt, LCSW
Marilyn Fisher, MD, MS PAC Liaison Holly Davis, MS, APRN PAC Liaison
Alix Ware NHPCO liaison
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A Note of Thanks from NHPCO
Ben Marcantonio
COO and Interim CEO of NHPCO
I am excited to share the 75th issue of the Pediatric e-Journal and to celebrate members of the Pediatric Advisory
Council and all other contributors who have made this esteemed publication possible for over twenty years!
The National Hospice and Palliative Care Organization (NHPCO) is proud to support the pediatric hospice and
palliative care community through various resources, webinars, and the e-Journal. The Pediatric Advisory Council
continually provides tools and support to both member and non-member providers as well as the patients and
families they serve. Some of these resources include:
Biennial Pediatric Palliative and Hospice Care Needs Assessment
Pediatric Facts and Figures
Concurrent Care Implementation Toolkit
Private Insurance Concurrent Care Advocacy Toolkit
Pediatric e-Journal Index
On behalf of the NHPCO team, thank you to members of the Pediatric e-Journal workgroup, the numerous journal
contributors, and those who read and engage with this important content. Because of you—your time and resource
commitment—we can continue to further our goal of ensuring high-quality, equitable, and accessible care for
children living with serious illness. We look forward to countless more issues to come.
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A Newcomer’s Perspective: What I Have
Learned from Pediatric Palliative Care
Michaila Kaufman, BSN, RN
Program Nurse
Pediatric Advanced Care Team
Boston Children’s Hospital & Dana-Farber Cancer Institute
Boston, MA
michaila.kauf[email protected]
As a registered nurse on the Pediatric Hematology/Oncology unit at Boston Children’s Hospital (BCH), I had many
positive interactions with the Pediatric Advanced Care Team (PACT), BCH’s palliative care team. As I transitioned to
join PACT as the Program Nurse, I tried to pinpoint, “What exactly makes palliative care so unique?” Evident on my
irst day, I found that pediatric palliative care (PPC) embodies a blend of clinical expertise and person-centered care,
empowering patients and reducing suffering. I believe that this unique approach lies in the unparalleled skill set of
our team members, who excel in the art of expert communication. Through effective and empathetic dialogue, we
cultivate meaningful connections with patients and their families, fostering trust every step of the way.
I recall one of the irst questions on my irst new consultation: “Tell us about your child.” It should have come as no
surprise when the family began to respond with the intricacies of their child’s medical journey, delving into diagnoses
and the details of her medical history. However, I was surprised by our team’s gentle redirection: “Thank you, but who
is your child beyond her medical condition?” In that moment, I realized the most essential aspect of PPC is its
unwavering dedication to knowing the individual beyond the illness, including their joys, fears, and aspirations.
In my previous role as a bedside nurse, discussions surrounding patient preferences were common but cursory. For
the primary teams I worked with, patient preference was most often secondary to the intended course of action.
Medical teams would decide the “best” course of action, most often based in science and prior experience, then
present the plan to the patient and family. PPC lips this script by starting with the patient’s preference, seeking to
understand who they are, and practicing within those goals. While medicine has become exceptionally outcome-
driven, which is incredibly important when seeking a cure, perhaps portions have lost sight of the care journey and
what a patient experiences every day on the path to cure or recovery. Palliative care, and PPC teams in particular,
can help re-focus our healthcare delivery on both positive outcomes and patient experience throughout treatment.
In PPC, patient preferences are not merely considered but embraced as the guiding principle.
One of the most important lessons I have learned since joining the PACT team is the profound signiicance of
effective communication, and that words carry weight. The language we choose isn’t just semantics; it’s a
relection of our respect for the individuality and dignity of each patient. Utilizing a mindful approach, we recognize
that patients are not deined by their diagnoses, and their identities transcend any medical labels we may use. For
example, we never describe a patient as “a DNR,” but rather as “having a DNR order.” Similarly, we refrain from
reducing someone to a mere diagnosis, opting instead to acknowledge them as individuals “with osteosarcoma,”
rather than “an osteosarcoma patient.” This subtle shift in language reafirms the inherent worth and complexity
of every person under our care.
Last month, I witnessed an interaction between one of our attendings and a patient’s father that underscored the
impact of clear and empathetic communication in the realm of pain management. The attending’s ability to
engage the father in a dialogue about his 5-year-old son’s leg pain was remarkable. While the oncology team’s
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initial assessment attributed the pain to the severity of the disease, it became apparent that the current treatment
regimen was falling short in alleviating the child’s discomfort. What struck me most was the attending’s ability to
delve beyond surface observations and truly listen to the father’s description of his son’s pain. Through a prolonged
and patient discussion, they unearthed crucial details: the pain wasn’t just severe; it was tingling and radiating,
indicative of nerve involvement. Armed with this nuanced understanding, we were able to tailor the treatment
approach accordingly, initiating medication speciically targeting nerve pain. It was a testament to the power of
effective communication in accurately assessing pain intensity and quality, paving the way for more targeted and
impactful interventions.
Navigating the complexities of PPC often leads to profound moments of connection and understanding. It’s a
realm where decisions about treatment options, end-of-life care, and advance directives are delicately balanced
against the backdrop of individual values and aspirations. In this intricate tapestry of care, I’ve come to appreciate
the indispensable role of open and honest communication.
One of the most valuable tools for effective communication I have learned is the art of conducting family-team
meetings to navigate dificult discussions. I’ve found that setting a clear goal for these conversations lays a solid
foundation for meaningful dialogue. It allows for charting a course through uncharted waters, ensuring that
everyone involved shares a common understanding. Central to the success of these discussions is the practice of
active listening and validation. Our team utilizes the term “and” to emphasize the importance of acknowledging and
afirming patients’ experiences and worries, while also communicating providers’ concerns. It’s a subtle yet powerful
tool that fosters a sense of understanding and validation, paving the way for collaborative decision-making.
I have also learned that, amid dificult discussions and complex decisions, there are moments when words fail to
capture the depth of human experience. It’s during these times that the simple act of presence becomes our most
potent tool. For me, the art of “sitting in the space” with patients and their families, silently listening, can be really
hard. Recently I sat on the bed with an intubated infant who likely would not survive the night, while my attending
held his mother’s hand as she cried and processed the news. Embracing “sitting in the space” requires recognition
that healing doesn’t always come in the form of treatments or interventions; sometimes, it emerges from the
gentle reassurance of a compassionate presence.
Joining PPC nursing required a mentality shift. As a bedside nurse, I learned the art of eficiency and precision. The
fast-paced environment demanded quick thinking and decisive action. The best days were ones that provided space
to connect with patients for more than a few sentences. As a PPC nurse, I am encouraged to pause, allowing for
meaningful conversations and genuine connections to blossom. Switching between these two worlds, I realized the
power of balance. As a bedside nurse, I thrived in the urgency of the present moment, while as a PPC nurse, I ind
solace in the gentle rhythm of time. In a healthcare system driven by metrics and eficiency, the emphasis on
listening and being present with patients can sometimes seem at odds with the push for streamlined processes and
quick turnover. PPC’s commitment to providing deeply personal and patient-centered care can be overshadowed by
the demands for cost-effectiveness and productivity. I wonder, as PPC expands, how we can uphold these core
principles of human connection and trust which takes time and patience.
My journey with palliative care has been profoundly enriching. I have found a deep resonance with its ethos, feeling
embraced by its principles and values. As I continue to hone my skills in artful communication, I am committed to
embodying the essence of PPC in every interaction. With boundless enthusiasm, I look forward to contributing to
the advancement and growth of pediatric palliative care, ensuring that its transformative impact reaches every
child and family in need.
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I’m Feeling Hopeful. I’m Feeling Anxious.
Blyth Lord
Executive Director
Courageous Parents Network
blord@courageousparentsnetwork.org
Twenty-four years have passed since my daughter, Cameron, and nephew, Hayden, died from infantile Tay-Sachs. Our
family’s journey inspired the creation—with support from an amazing staff, expert contributions from families and
clinicians, and generous donors—of a nonproit organization, now in its 10th year, whose mission is to orient and
empower parents and others caring for children with a serious medical condition. This organization, Courageous
Parents Network, has worked with nearly 100 families and clinicians (thus far) to create and share tools and
resources that educate and support all caregivers and to help inform important research. I have come to see myself
as a journalist: my source is parents and clinicians, and my domain is the intersection of their lives and their
experience. I come to the question of How I am feeling about the future of pediatric palliative care and pediatric hospice
care with a sense of both humility and authority. That is, I come to whatever authority I have through intense and
gratifying collaboration with others—what, as CPN’s 10th anniversary comes around, we call This Shared Journey.
So how am I feeling about the future? More to the point, I think, is how I am feeling about the quality of care
families will be receiving in the future. Well, I am feeling both hopeful and anxious.
The hope stems from three developments I have observed. First, the ield of pediatric palliative care has grown
from its pre-subspecialty birth to become an integrated program—sometimes as a unit, sometimes a department,
sometimes a small team that is part of another unit—in most every major children’s hospital in North America. I
have been delighted to attend national academic conferences with tracks for pediatric palliative care and I have
been privileged to sit at the table with pediatricians who are shaping the American Academy of Pediatrics’ policy
and technical and vision statements for palliative and hospice care. I have heard how non-palliative specialists (e.g.,
oncologists, cardiologists, neurologists) are increasingly referring families to their colleagues in palliative care so
that they can better support the parents with anticipatory guidance, discussions of care goals, and medical
decision-making.
Second, and this is what powers the First, I have spoken and worked at length with dozens and dozens of palliative-
minded pediatric clinicians who dedicate themselves every day—whether as clinicians, as researchers, as thought-
leaders and/or other agents of change—to the care of children with serious illness. Through this work, I have seen
their incredible commitment to quality of life for the child, parental agency, and family well-being. They are curious.
They have told me directly how much they value family voices and stories, to help them better understand the needs
of the families they serve and to help educate their colleagues. And they are devoted: to children, to parents and
siblings; and to making access to palliative care, or at least “palliative-aware” care, available for those who need it.
Third, I have seen in parents the growth in awareness and understanding of how palliative care can make a
signiicant difference in how they shape the life of their child and family. For example, in the patient disease group
with which I most closely identify, National Tay-Sachs and Allied Disease (NTSAD), families are now informed
shortly after diagnosis about palliative care. Fewer parents confuse palliative care with hospice, leading the way to
greater acceptance of palliative service. In fact, more parents are asking for it. More patient groups across diseases
are asking Courageous Parents Network to present to their family members about the beneits of palliative care.
And, more of the parents we speak with who already have palliative care as part of their child’s treatment are
themselves becoming champions for its inclusion. Parents are spreading the word and other parents are listening.
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Why, then, the anxiety? It stems from two macro trends that are on a collision course in our country. I acknowledge
that I am not an economist, an analyst, or a policy wizard. I know only what I hear and observe in the travels of
Courageous Parents Network—and the message coming through is increasingly loud and clear.
Simply put, the systems in which we live and operate are not serving the children and families and the clinicians
who personally bring passion and purpose to their care.
The irst trend is the fact that remarkable advances in medical technology are allowing more and more medically
fragile children to live longer and longer. Often, these children are living better too, but rarely are they living without
complexities that place signiicant demands on hospital and community-based support systems and providers,
schools, and, most importantly, on parents and siblings. And if they age out of pediatrics, into “adulthood,” these
children are no longer eligible to receive most of the support services on which they and their families have come to rely.
As we know so well, the response to increase in demand for support requires a corresponding increase in money.
However, our systems are not aligning to increase funding for the required supports. In fact, and this is the second
trend, the systems are aligning in the opposite direction at every level: federal, state and private payer. Many
hospitals, inancially stressed by the long tail impact of COVID and the mandate to be more proitable, are
reducing their numbers of pediatric beds and/or are asking more of clinicians. Hospital- and community-based
palliative care teams are pressured to make the business case for their programs, with a misapplied insistence on
quantitative measures or those honed in adult populations to do so. This pressure is even worse for for-proit
hospices, and that number is likely to grow as private equity moves through the space. The Orwellian bureaucracy
of billing codes, complicated by concurrent care, mires providers who just want to do the work. And the confounding
inconsistency of Medicaid beneits across states, including the varying but consistently inadequate funding of
waivers for families, further hamstrings and isolates families. These trends, along with other systemic factors, are
contributing to clinician burnout and threaten increasing attrition.
And then there is the shortage of the home care nurses and personal care assistants who make it possible for
families to care for these children at home. Inadequate compensation for home care providers has resulted in the
paucity of care that has left parents and caregivers feeling more burdened and stranded than ever before. This is
especially problematic for families reliant on nursing to keep those children dependent on mechanical ventilation
safe at home. Everyone is at risk.
But … to return to a hopeful note.
It is possible that our collective advocacy for patient-centered care and centering the voices of patients and
families in research—to inform treatments and practice—will reveal truths that bean-counters cannot ignore. Likely,
it will reveal the enormous downstream inancial and societal costs of not supporting children and families where
they live. Time will tell.
In the meantime, and perhaps most hopefully, we know that we are not alone. We must, always and in all ways,
channel our devotion to children and families and our indignation at how our systems are failing both them and the
clinicians who care for them, into inding our respective ways to insist on more, and better.
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Bereaved Parents as Educators of Clinicians:
Reflections and Invitations for Continued
Relational Learning Within Pediatric Palliative Care
Dannell Shu
Bereaved Parent Advocate and Clinician Educator
Dannell.Shu@RedBirdTime.com
In under 25 years, the role of the bereaved parent advocate and educator has emerged and grown signiicantly
within pediatric palliative care (PPC). With good intentions, many clinicians/researchers initially felt bereaved
parents were too emotionally vulnerable and were concerned that participation could cause emotional harm. We
have since found when parents (bereaved or presently caring for their child) engage in advocacy it becomes an
opportunity for honoring their child in ways that are actively therapeutic. Parents’ lived experiences provide
essential wisdom that contributes to PPC maturation and healthcare as a whole.
One of the early catalysts that brought about this change was the Initiative for Pediatric Palliative Care (IPPC),
established in 1998 as an initiative of the Education Development Center in Newton, MA. This national project
opened doors for bereaved parents to be welcomed into core palliative care education as storytellers, advocates,
educators of clinicians, and co-designers of care innovations. For example, IPPC modeled the vital importance of
engaging bereaved parents as members of interdisciplinary palliative care teams and in clinician education.
The 75th anniversary edition of this journal provides a valuable moment to relect on IPPC’s innovations and to
consider how this model continues to challenge and invite us all, parents and clinicians alike, to deepen the
engagement of parents as educators as PPC continues to grow.
IPPC’s History
Depending on when you entered the ield of PPC, you may not have heard of IPPC (ip-see) or fully know of its work.
Recently, I sought out Deborah Dokken, a bereaved parent who served as IPPC’s Associate Director, for insights
about the best practices developed through IPPC.
IPPC began as a research, quality improvement, and education effort to enhance family-centered care for families
and children living with life-limiting illnesses and conditions.
1,2
Led by the Education Development Center, it included
a consortium of seven academic pediatric hospitals across the US, the National Association of Children’s Hospitals
and Related Institutions (now called the Children’s Hospital Association), the New York Academy of Medicine, the
Society of Pediatric Nursing, and the Association of Medical School Pediatric Department Chairs.
3
Initially, the IPPC project developed quality improvement tools and a 25-hour instructional curriculum, as well as an
accompanying award-winning video series. Later, innovative educational regional retreats (2005-2010) for
interprofessional teams interested in developing PPC skills proved to be groundbreaking for bringing parents to the
forefront as educators of clinicians. Previous efforts to involve bereaved parents in educational settings were
generally limited to a one-time parent panel or single session small group discussion.
4-8
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IPPC’s Innovative Retreat Design
The retreat design, through its “Families as Educators” component, consciously incorporated a signiicant number
of family members, selected to participate as co-teachers and co-learners along with health care professionals.
Family members were fully integrated as retreat participants; like clinicians, some also served in other roles
including panel members, small group facilitators, and
members of regional planning committees.
9
Feedback from
the educational retreats, as well as data from an impact study done by IPPC, conirmed that the participation of
family members not only enhanced the learning experience of clinicians but also contributed to institutional
improvements.
10
Participation also maximized the learning of families themselves and helped them become more
effective advocates and educators within their own communities. By January 2010, twenty-one retreats, involving
almost 2,000 clinicians and over 300 family members, had been held across the US and in Canada.
9
IPPC’s Foundational Beliefs
1. Bereaved family members and families of children with life-threatening conditions should be signiicant
partners in education and change in the healthcare system.
2. Integrating family members fully in educational programs for healthcare professionals will improve care for
children with life-threatening conditions and their families.
9
IPPC’s work was truly innovative. In collaboration with a signiicant consortium of stakeholders, the project had a
large-scale impact on the ield by signiicantly shifting the landscape of family/parent involvement in clinician
education and program development.
IPPC’s Ripple Effect ~ a Brief Personal Reflection
In January 2010, while in the NICU, my son Levi received the gift of a palliative care consultation at two weeks of age.
My husband and I were irst time parents navigating Levi’s severe HIE with medical complexities and hoping for a way
to bring him home. Little did we know, our palliative care team from Children’s Hospitals and Clinics of Minnesota
were also serving as core faculty in IPPC’s educational retreats, the last of which occurred later that same month.
With palliative care support we learned to develop an in-home ICU, become Levi’s advocates, and create joy in the
midst of uncertainty. Keeping Levi’s personhood front and center, transformed how we lived and made decisions.
~ Growing into Becoming an Advocate
Three years later while continuing to mother Levi, our palliative care nurse, Jody Chrasteck offered me an invitation
to step into advocacy.
“Would you be willing to share a part of your story so other families could learn about palliative care?”
Gradually, additional invitations were offered.
“Would you join our state’s pediatric palliative care coalition? We only meet quarterly.”
“Would you be interested in co-teaching a pediatric ELNEC course on communication?”
“Would you consider writing an article for the Pediatric e-Journal?”
Unbeknownst to me, the IPPC model of engaging parents was at work. With each invitation my communication
and advocacy skills improved.
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~ Growing into a Clinician Educator
Fast forward ive years to when palliative care pediatrician, Naomi Goloff, invited another parent and me to become a
part of the Pediatric End-of-Life Skills (PECS) workgroup as Bereaved Parent Faculty at the University of Minnesota’s
Department of Pediatrics. These half-day immersive simulation workshops teach high stakes EOL skills to pediatric
subspecialty Fellows. As Faculty, our role grew as PECS grew, expanding parent involvement into full integration of this
innovative trainee education: from inception to dissemination to further innovation of an interprofessional workshop.
We provide a rare and brave space for trainees to be in dialogue with bereaved parents while developing EOL skills.
Fellows consistently report increased self-eficacy as a result of these workshops.
11
This improves the quality of care
families receive when their child is dying and it improves clinician competency and resiliency early in their career.
Now in its sixth year, PECS embodies and expands upon the IPPC model by:
1
integrating bereaved parent faculty
into trainee education;
2
developing specialized training for onboarding new parent faculty; and
3
adapting trauma-
informed care principles to meet the needs of bereaved parents.
IPPC’s Continuing Ripple Effect
A brief sampling of the spaces where bereaved parents are increasingly welcomed. Pause to remember the parents
whom you have engaged with in these spaces and the embodied wisdom they shared.
Pediatric e-Journal authors Legislative advocacy
National convenings & task force Ethics reviews
Schwartz rounds Research co-investigators
Field-speciic conferences Provider-speciic trainings
State coalitions & advisory councils Consultants
The emergence of Courageous Parents Network (CPN), founded by Blyth Lord, herself an IPPC parent retreat
participant, is another example of how IPPC’s work continues to grow. CPN leads magniicent work in increasing
connections between parents and clinicians through gathering family stories, providing vital educational resources,
partnering with research initiatives, and developing innovations like NeuroJourney.
Looking Ahead ~ Four Key Factors for Continued Growth
The IPPC model is essential for continued ield development and deepening the role of parents, particularly in advocacy
and clinician education. Relational learning is key to our future as clinicians and parent advocates grow symbiotically.
1. Continue Learning from Lived Experience ~ Opportunities to hear families’ stories irst hand provides essential
insights. It is important for clinician work to align with the needs and experiences of families so we can identify when
good care happens and where gaps and barriers remain, opening us to further innovation and systems change. A
greater richness of insights will arise when stories are brought forward from multiple populations and diagnoses.
Action Invitations
Regularly identify and invite parents to share the stories of their lived experiences.
Review the populations and diagnoses your PPC program serves and pursue the missing voices, including those
with traumatic and negative experiences.
Have a process in place to gather and share these stories (or partner with CPN).
Integrate family stories into the forefront of your role in PPC.
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2. Fully Integrate Parents into Education and Research ~ IPPC retreats continue to be the standard bearer for
parent involvement that relects a fuller integration: beginning at ideation, through to dissemination and
further innovations. IPPC’s identiied best practices still hold value and there remains a great need for the
model of parents as key and equal members of PPC teams to be fully adopted across the ield, particularly in
education and research. In my role with the PECS workgroup, I have experienced irsthand how full integration
improves trainee’s outcomes while also growing parent’s skills.
Action Invitations
Review your educational curriculum and research initiatives. Do you have parents involved? If not, why not?
Perhaps this relates to the irst invitation of not yet having a process for bringing forward parent stories.
Review IPPC’s best practice standards and the research resulting from the project’s retreats.
9,10
Begin involving parents earlier in the process, preferably at inception, as faculty/investigators instead of external
consultants whom you occasionally reach out to. This is particularly important for research requiring community
engagement and can be applied to national initiatives and conferences.
Create opportunities and allocate resources for deepening parent engagement and invite parents to co-create a
transition process.
3. Address Sustainability ~ The lack of sustainability is a major threat to retaining parent advocates who develop
into clinician educators. By January 2010, 300+ parent educators had been involved in IPPC retreats. It is
unknown how many of these parents are still involved in PPC.There are parents who can’t come forward to
share their stories or engage in longer projects because they don’t have the capacity to take time off of work or
be away from their children without inancial compensation. We risk losing the beneits of accumulated
wisdom and exhausting resources in repeatedly reinventing the wheel. Skills and effectiveness are gained over
time through practice and repetition, including for new and seasoned parent advocates.
Action Invitations
Build/expand peer to peer mentoring programs focused on parent advocacy skills. Wisdom sharing between
established and newer members of parent advisory committees can be an important place to begin.
Offer in-person and virtual options for parent participation.
Maintain a roster of past, current, and possible parent advocates. Be in communication with them regularly
about opportunities for engagement.
Include parent advocates in your research and educational budgets. It needs to become inancially feasible for
parent advocates to enter and remain in this work.
4. Develop Clear Educational Pathways for Parent Advocates ~ One of the barriers to entry for a parent to
become an advocate and develop into an educator of clinicians is the lack of a clear educational pathway
within PPC. Few parents are offered comprehensive training in how to effectively tell their child’s story.
Sometimes this is found in diagnosis or cause-speciic advocacy communities. Specialized planning and training
are needed for parents to become navigators of their grief/trauma and effective educators of clinicians.
Action Invitations
Offer storytelling training as an essential irst step in developing parents as advocates. Explore what materials
may already be available through your institution and through ields related to PPC.
Engage current parent advocates in identifying the skills they have developed, skills they desire to develop, and
resourcing available training opportunities.
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Lead/participate in a ield assessment of available training materials for training parents as clinician educators.
Identify gaps and collaborate in the development of missing materials.
Explore how accessible education pathways in your institution/the ield of PPC can be deined and developed for
current and future parent advocates, related to speciic clinician educational outcomes and ield research objectives.
Conclusion
IPPC provided our ield with a valuable foundation through their core beliefs and innovative retreats for how to
engage bereaved parents as integral and equal members of clinician educational experiences. This relational
learning model impacted ield development and continues to offer us continued guidance. In this anniversary
moment it is important to celebrate the signiicant growth that has happened, since IPPC’s last retreat in 2010, in
incorporating parents into many aspects of PPC. Looking ahead, let’s focus on providing bereaved parents with a
clear educational pathway, sustainable resources, and opportunities for fuller integration into PPC clinician
education and research. This will bring forth the diversity, embodied wisdom, and skillful parent communicators our
ield needs to foster meaningful maturation.
Dannell Shu is the mother of Levi, a child born with severe HIE who lived an abundant seven years with pediatric
palliative care. She serves as a Family Advocate on the National Coalition for Hospice and Palliative Care, Pediatric
Division and Minnesota’s Palliative Care Advisory Council. She educates trainees at University of Minnesota’s
Department of Pediatrics andclinicians at national conferences. Dannell.Shu@RedBirdTime.com
References
1. Browning DM, Solomon MZ: The Initiative for Pediatric Palliative Care: An interdisciplinary educational
approach for healthcare professionals. J Pediatr Nurs 2005;20(5):326–334.
2. Adams G, Green A, Towe S, Huett A. Bereaved caregivers as educators in pediatric palliative care: Their
experiences and impact. J Palliat Med. 2013 Jun;16(6):609-15. doi: 10.1089/jpm.2012.0475. PMID: 23725232;
PMCID: PMC3667424: 609
3. Browning DM, Solomon MZ; Initiative for Pediatric Palliative Care (IPPC) Investigator Team. The initiative for
pediatric palliative care: An interdisciplinary educational approach for healthcare professionals. J Pediatr Nurs.
2005 Oct;20(5):326-34. doi: 10.1016/j.pedn.2005.03.004. PMID: 16182092. (abstract)
4. Bagatell R, Meyer R, Herron S, Berger A. Villar R: When children die: A seminar series for pediatric residents.
Pediatrics 2002; 110(2):348–353.
5. Poultney J, Wiseman F. Waterhouse E. Faull C: The impact of bereaved carers of being involved in medical
student education. Palliat Med 2011;26(2):185–186.
6. Schiffman JD, Chamberlain LJ, Palmer L, Contro N, Sourkey B, Sectish TC: Introduction of a pediatric palliative
care curriculum for pediatric residents. J Palliat Med 2008; 11(2):164–169.
7. Wee B, Davies S, Holt C: Involving lay caregivers in medical education. Med Educ 2008; 42(11):1129–1146.
8. Wittenburg-Lyles EM, Shaunield S, Goldsmith J, SanchezReilly S: How we involved bereaved family caregivers
in palliative care education. Med Teach 2011; 33:351–353.
9. Dokken, D., Buell, L., & Rushton, C.H. (2010). Families as educators: Guidance for implementation. Baltimore,
MD: Berman Institute, The Johns Hopkins University
10. Solomon, M.Z., Browning, D., Dokken, D., Merriman, M., & Rushton, C.H. (2010). Learning that leads to action:
Impact and characteristics of a professional education approach to improve the care of critically ill children and
their families.Arch. Pediatr. Adoles. Med., 164(4), 315-322.
11. Pediatric End of Life Cares (PECS) Workgroup dissemination documentation available at https://sites.google.
com/umn.edu/pecseducation/project-dissemination?authuser=0
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P
alliative Care PR: Exploring New
Message Strategies
Jared Rubenstein, MD
Associate Professor of Pediatrics
Division of Pediatric Palliative Care
Program Director for Pediatric Hospice and Palliative Medicine Fellowship
Texas Children’s Hospital
Baylor College of Medicine
Houston, TX
jerubens@texaschildrens.org
What do we talk about when we talk about palliative care? Well, most of us talk about some version of the Center to
Advance Palliative Care (CAPC) deinition: “Palliative care is specialized medical care for people living with a serious
illness. This type of care is focused on providing relief from the symptoms and stress of the illness. The goal is to
improve quality of life for both the patient and the family. Palliative care is provided by a specially-trained team of
doctors, nurses, and other specialists who work together with a patient’s other doctors to provide an extra layer of
support. Palliative care is based on the needs of the patient, not on the patient’s prognosis. It is appropriate at any
age and at any stage in a serious illness, and it can be provided along with curative treatment.”
1
CAPC describes
pediatric palliative care as, “It is appropriate for neonates, perinates, infants, children, adolescents, and young adults,
and it can be provided along with treatment meant to cure.” CAPC further speciies: “Pediatric palliative care is
family-centered” and “Palliative care is based on need, not prognosis. It is best to start palliative care as early as
possible.”
2
And yet, despite the wonderful clarity of these deinitions, study after study continue to show that around
70% of people don’t know what palliative care is.
3,4
And despite the call to start palliative care as early as possible,
referrals to subspecialty palliative care often come much later than we would like. Not only does it seem like this
messaging has not been enough to break the palliative care stigma among healthcare workers, there is now even
data that clinicians often project palliative care stigma onto patients and their families!
5
There also continue to be
calls to rename our ield
6
because “palliative care has an image problem.” This may be somewhat of a self-fulilling
prophecy, as it often seems that those describing the image problem are also those same clinicians who stigmatize
the image of palliative care in the irst place. I satirically highlighted this dilemma in a YouTube video several years ago
called “Palliative Care: We’re the ire department, not the ire.” https://youtu.be/BbNi_-wYXJE?si=9MyPl6HsbrfyIzwx
So where do we go from here? Personally, I think it’s time we stopped the dedicated focus on the minutiae of branding
palliative care. I think we should stop engaging in conversations about whether we should change the name of our ield. I
think we should stop assuming we need to justify our seat at the table and just sit at the table. I’m mindful of the
privilege I have to be able to relect on this while practicing in the robustly developed ield of pediatric palliative care. I’m
keenly aware of the blood, sweat, and tears that so many who came before me have spent doing the groundbreaking
work of building the ield to where it is today. I know there was a role for tiptoeing in and asking to sit at the table, but I
feel that time has passed. I relect on the expression, “What you permit, you promote. What you allow, you encourage.
What you condone, you own” and can’t help but worry that we have a role in contributing to our diminution in the eyes
of the medical community. After all, we are part of a ield with a robust body of literature supporting its beneits. And
while people may not know about it, when they learn what palliative care is they think it sounds fantastic!
3,4
So rather than continuing to focus on our branding and worry about our image, what should we do instead? I
believe we should focus on a strategy with 3 levels: the state and national level, the institutional level, and the
individual level. On the state and national level, I think we should continue to advocate for policy related to
palliative care and care for children with serious illness. Both policy to increase and standardize the provision of
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primary palliative care to anyone with a serious illness as well as policy to increase the use of subspecialty palliative
care and guidelines for involvement. Organizations like the National Hospice and Palliative Care Organization
https://www.
nhpco.org/ do this every day on the national scale and the Coalition for Compassionate Care of
California https://coalitionccc.org/ is a wonderful state-level model. Additionally, guidelines like those provided by
the Cystic Fibrosis Foundation provide a fantastic template for advocating for implementation of palliative care in
an illness-speciic model https://www.cff.org/medical-professionals/models-palliative-care-delivery-individuals-
cystic-ibrosis.
On an institutional level, we could use the policies and guidelines above to enact standards of care and utilize
institution-speciic mechanisms to ensure palliative care principles are part of the care of all people with serious
illness. While most institutions do not yet have robust enough palliative care teams to be involved in the direct care
of every patient with a serious illness, having palliative care clinicians involved in standards of practice committees
could be a start. Standards of care for both primary and subspecialty palliative care can be implemented and the
committees can develop processes to ensure they are followed. We could deine what constitute palliative care
“never events” such as a patient dying with poorly controlled pain or other symptoms. We could also develop
institution-wide educational initiatives to promote an upskilling of staff and leverage state and national guidelines
to ensure these initiatives receive the time and resources they deserve.
On the individual level, this could take the form of reframes and pushbacks in communication about palliative care.
Some years ago, I went to see a patient in the pediatric oncology clinic. An oncologist said to me, “I always enjoy
seeing you, but it makes me sad to see you here, because it means someone is having a really bad day.” I responded
by saying, “You know, you work in a clinic for children with cancer, I suspect most people here might be having a bad
day. I’m here to help someone have a better one.” This reframe set the stage for further conversation about myths
and stigma around palliative care that may contribute to a destigmatization of palliative care for this one clinician
and beneit his future patients. Recently, my team and I were speaking to another medical team about a patient
they were hoping we could meet, but they were worried about “sending the wrong message by consulting a palliative
care team.” We gently pushed back by sharing data that, in general, people aren’t actually afraid of palliative care,
they just don’t know about it and when they learn about it are often interested in meeting a palliative care team.
3,4
We then kindly also shared data on how clinicians may inadvertently bias patients and families against palliative
care in the way they discuss a consult.
5
The attending physician of that medical team responded with, “You’re right!
I’ve never thought about it before, but we do talk about palliative care consults with families differently than other
consults.” The robust conversation that followed was eye-opening for all involved and led to an invitation to present
this discussion at the clinician’s division meeting. Reframes and pushbacks shouldn’t be antagonistic or adversarial,
but they can still be irm. After all, what is the beneit of data if we don’t use it to advocate for better care?
Ultimately, I hope palliative care clinicians can be proud to be in such an amazing ield with a robust body of
literature on its beneits. I hope we can feel secure in our seat at the table as we work to ensure that all people with
serious illness and their families receive the standard of care: patient- and family-centered palliative care, based on
their needs, and as early as possible.
References
1. https://getpalliativecare.org/whatis/Text
2. https://getpalliativecare.org/whatis/pediatric/
3. Grant MS, Back AL, Dettmar NS. Public perceptions of advance care planning, palliative care, and hospice: A
scoping review.J Palliat Med. 2021;24(1):46-52. doi:10.1089/jpm.2020.0111
4. Levine DR, Mandrell BN, Sykes A, et al. Patients’ and parents’ needs, attitudes, and perceptions about early
palliative care integration in pediatric oncology.JAMA Oncol. 2017;3(9):1214-1220. doi:10.1001/
jamaoncol.2017.0368
5. Zimmermann C, Swami N, Krzyzanowska M, et al. Perceptions of palliative care among patients with advanced
cancer and their caregivers.CMAJ. 2016;188(10):E217-E227. doi:10.1503/cmaj.151171
6. https://www.washingtonpost.com/health/palliative-care-supportive-hospice/2020/09/04/07bf5236-e6d8-
11ea-97e0-94d2e46e759b_story.html
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Diversity, Equity, Inclusion: Words Matter
Christy Torkildson, PhD, RN, PHN, FPCN, HEC-C
Professor & Program Lead, Grand Canyon University
College of Nursing and Health Care Professions
Executive Director, Children’s Hospice and Palliative Care Coalition of California
Christy.T[email protected]
Joseph C. Torkildson, MD, MBA
Lead, Pediatric Hematology Oncology
Banner Health
Joseph.T[email protected]
Anthony Perillo, PhD
Associate Professor, Forensic Training Director
University of New Mexico
School of Medicine – Psychiatry & Behavioral Sciences
When we irst started planning the 75th edition of the Pediatric e-Journal (previously the ChiPPS Newsletter,
ChiPPS e-Journal), we wanted to focus on the future and the issues we are still struggling with today. We wanted
to look at all we have accomplished and what we still need to address. We wanted to celebrate and, at the same
time, acknowledge the work that is still needed.
Diversity, Equity, Inclusion
Increased dialogue about Diversity, Equity, and Inclusion (DEI) principles has brought attention to the work
needed to ensure equitable healthcare services to all, including those in pediatric palliative care.
We know that not all our children and families can access the services that can help support them.
3,8,9,12,15,19,20
W
e
know that a signiicant number of our children with medically complex conditions are predominantly served by
Medicaid and are challenged by social determinants of health.
3,5,6,7,8,13,14,17,19,24,25
Recently (April 2024), the irst author listened to a webinar on the intersection of behavioral health and the law
directed by the co-author. The webinar addressed health professional roles in advancing equity for children
involved in the legal system.
21
I again realized how much we can learn from many different disciplines and
specialties. Although palliative care (and I used this term inclusive of hospice) has always been interdisciplinary, we
have become somewhat exclusive in our thinking, prioritizing being and promoting ourselves as a specialty over
focusing on the work itself and how we can work among and with various specialties toward a common service.
Think about the discourses about the names of programs if you wonder what I mean. For a great perspective see
Jared Rubinstein’s article in this issue.
The Pediatric Advisory Council for the National Hospice and Palliative Care Organization (NHPCO) published the
Pediatric Facts and Figures in 2023.
24
In this report, we noted the responses from the national survey of hospice
and palliative care providers from 2019 to 2020 (www.nhpco.org/pediatrics). We mapped where services were
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available in the US based on our survey results (n=481). The Children’s Hospice and Palliative Care Coalition of
California completed an assessment of services in the state, creating an environmental map of pediatric palliative,
hospice, and supportive services in California (www.chpcc.org/resources).
11
This map shows most services are
clustered around the very urban areas of San Diego and Los Angeles, with few, if any, in other areas of the state,
including the San Francisco/San Jose/Oakland area—home to over 9 million individuals and a signiicant number
of children with complex medical conditions.
10
Additionally, Davis, et al (2024), examining adult hospice providers
that cared for children in California, demonstrated a 30% decrease in hospices willing to care for children from
2018 through 2021.
12
This was consistent with concerning data from the NHPCO national survey.
24,29
An initial
review of state data by the Children’s Hospice and Palliative Care Coalition of California notes the same
continuing trend with the most recent annual hospice and home care utilization report data from 2022.
11
Work by Feudtner and colleagues has demonstrated that the large majority of children with complex medical
conditions who could beneit from pediatric palliative care are predominantly served by Medicaid, and social
determinants of health impacted a signiicant proportion of patients.
6,8,13,14,17,19,25
Due to the increasing population
and signiicant needs of children with medical complexity, the American Academy of Pediatrics (AAP) updated its
resources in 2022, creating a landing page on their website, “Children with Medical Complexity.”
3
More recently, the
National Institute of Health Eunice Kennedy Shriver National Institute of Child Health and Human Development
convened a summit on “State of the Science of Pediatric Palliative Care” (Dec, 2023).
26
During the State of the
Science Conference, we celebrated the rich history of pediatric palliative care while highlighting the ongoing need
to further our work to provide equitable access to these critical services for children and their families. As Dr. Abby
Rosenberg stated, we have “promise, challenges, and great opportunities.”
26
Work by Khaliah Johnson and her team in Atlanta highlights the signiicant impact of social determinants of
health on health outcomes in pediatric healthcare including the effect of racism.
19
Levenson (2022) discussed
trauma-informed care, noting that complex trauma is reinforced when situations are “chronic, multiple,
and
cumulative.”
18
Levenson goes on to list factors that can lead to/cause trauma, including but not limited to loss,
uncertainty, powerlessness, fear, adverse childhood experiences, illness, disability, historical and cultural trauma,
stigma, discrimination action, and marginalization.
18
When we think of our patient population, many dealing with
the impact of determinants of health, complex medical conditions, repeated hospitalizations, separations from
family, pain, and, in many cases, suffering—physical, spiritual, and existential—it is not surprising that our families
experience signiicant trauma.
I have always found it ironic that a child’s rehospitalization is sometimes referred to as “normal.” Although
frequent hospitalizations for many of our patients are not uncommon, there is nothing normal about a child, any
child, being hospitalized. This brings me back to my earlier statement about learning from other disciplines and
ields. The April 2024 webinar referenced was presented by Jeanne McPhee, PhD, hosted by the University of New
Mexico School of Medicine’s Department of Psychiatry and Behavioral Sciences.
21
Her presentation was focused on
forensic evaluations of youth, but her message emphasizes the need for “careful considerations of anti-blackness,
trauma, and mitigating harm,” from all involved in children’s clinical services.
McPhee’s talk highlighted some of the work led by Auguste, et al, (2023), who reported “recommendations for
addressing harmful interplay…” of the American Psychology-Law Society’s (APLS) Practice Committee, which
stated in reference to forensic evaluations:
"consider how to be culturally sensitive in assessments, and acknowledge biases against black, indigenous, and
people of color within risk assessments: Include information on race and ethnic backgrounds in the history or
background sections… rather than simply including it in the irst line of identiiers (e.g. name, age, gender, race,
etc.)."
4
McPhee, expanded on this message in her talk by recommending:
1. Do not attempt to remain “color blind.”
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2. Acknowledge being “color blind” or “race neutral” does not make us objective.
3. Aim to minimize racial bias in decisions by contextualizing decisions.
4. Be thoughtful and intentional in describing race and ethnic background.
5. Replace single line identiier with a section that contextualizes the culture and community (APLS Practice
Committee, 2021).
21
Riggs
Romaine & Kavanaugh (2019) reported on the complexities of documenting race and ethnicity.
28
They wrote,
“Always ask, sometimes write. Ask yourselves, will race/ethnicity identities provide context. Or will they be
stereotyped and biased?”
21,28
These questions made me think about how we in healthcare start our notes. It has
become rote to start with name, age, gender, race. We were taught to put as much information as possible into that
irst line; I remember my instructors saying, “Paint the picture.” But how are we thinking about race/ethnicity/sexual
orientation when we are asking questions or about to write a note in the chart? What is the picture we are painting?
What are our preconceived notions when we read, “14-year-old black male with XYZ, living with single 30 y/o mom
in subsidized housing.” What if we had written, “Arthur Green is a 14 y/o admitted via the emergency room with
advanced diffuse intrinsic pontine glioma (DIPG) with a fever of 102 of unknown origin. Chest x-ray and ultrasound
were completed in the emergency room, IV was placed with 18 gage angiocath in the right forearm, and the irst
dose of Rocephin was given IV at 1950. VS are XYZ, O2 Saturation is 92% on 2L/O2 via nasal cannula, the patient is
alert and oriented X3 and denies any pain. Arthur identiies as a black male, a high school freshman, and an honor
student. Arthur lives in subsidized housing with his mother and two siblings, one older and one younger. Social
Work consult initiated.”There is so much more to everyone’s story beyond that one line, and that story can guide us
to provide more equitable treatment.
What if the referral to hospice was written as, “Arthur Green is a 14 y/o black male with end-stage DIPG, living in
subsidized housing with a single mother and two other siblings.” Or…, “Referral is for a 14-year-old male with end-
stage diffuse intrinsic pontine glioma. Arthur is an honor student and freshman in high school. He attended school
until this last hospitalization. Arthur has one older sibling and one younger sibling, all honor students. The family lives
in subsidized housing with the mom, who is the head of the household.” Has a clearer, fairer picture been painted?
The American Academy of Hospice and Palliative Medicine’s Statement on Racism states, “Systemic racism
undermines public health and poses a barrier to achieving our vision that all patients, families, and caregivers who
need it will have access to high-quality hospice and palliative care.”
1
The National Palliative and Hospice Care
Organization’s Code of Ethics calls for us to “provide quality hospice and palliative care services in a timely manner
to all who qualify, regardless of race, religion, sexual orientation, ethnic background, or ability to pay”
22
and “to
acknowledge, appreciate, and be sensitive to the unique needs of all patients and their families that we serve,
inclusive of their background.”
22
The April 2024 chat, “The Art of Documentation: What is Necessary and What is too Much When Telling a Patient’s
Story,” by our social work colleagues at NHPCO noted since 2008 CMS has stressed, “the intent of the plan of care
requirements are to show a direct link between the needs identiied in the comprehensive assessment and the plan
of care.”
15
Recommended guidelines included:
1. Focus on improving the quality of care for patients and families through an outcome-oriented approach to
hospice care.
2. Describe a cycle of care in which assessment data about patient and family needs are incorporated into an
individualized, patient-centered plan of care.
3. Gather assessment data in a systematic way that is retrievable to facilitate outcome measurements and
quality improvements.
The panel of speakers went on to review when “Painting the Picture: What is Essential.”
1. The purpose of the encounter.
2. Who is present?
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3. The focus of the encounter.
4. The patient/family’s concern(s) during the encounter, prior to the encounter, and what is ongoing.
5. The patient’s current functional status.
6. Any statements or behaviors that help to clarify the patient’s status.
7. Any communication/care coordination needs.
8. Review of the planned intervention, including any referrals.
9. Any tools used to support assessments/goals/planned interventions.
Who needs to know what when? This should always be our guiding star, “Need to Know.”
15
Not once during the
hour-long chat did anyone state that it was essential to note the race or sexual orientation of the patient. This is
not to say that race, sexual orientation, or other identifying information is never essential to understanding the
children we treat. Rather, we should always consider what we are documenting and why. As noted above, provide
the context, not just blanket statements that may lead to implicit biases—which we all have.
Goddu et al. (2019) found that stigmatizing language was associated with negative attitudes toward the patient/
family.
16
Sun et al. (2022) found that black patients had 2.54 times the odds of having at least one negative
descriptor in the history & physical notes such as agitated, non-compliant, combative, dificult, or refused.
27
These
are just two examples, and although these studies were done on adult patients, we can extrapolate how this
language can stigmatize if not pediatric patients, their family members.
As we strive to provide equitable, accessible, inclusive care to our patients and families, NHPCO’s Code of Ethics
also calls us to “acknowledge, appreciate, support, and remain sensitive to all staff and volunteers, with respect to
all their identities and experiences.”
22
We need to be as accepting of our staff and volunteers as we need to be of
our patients and their families.
The bottom line? Words do matter. Consider the picture you paint.
Additional resources may be found at:
Academy of Hospice and Palliative Medicine Diversity, Equity & Inclusion: https://aahpm.org/membership/
diversity
American Academy of Pediatrics issues their position paper AAP Diversity and Inclusion Statement “Words
Matter: AAP Guidance on Inclusive, Anti-Biased Language: https://www.aap.org/en/about-the-aap/american-
academy-of-pediatrics-equity-and-inclusion-efforts/words-matter-aap-guidance-on-inclusive-anti-biased-
language/
American Psychological Association Equity, Diversity, and Inclusion: https://www.apa.org/about/apa/equity-
diversity-inclusion
Hospice and Palliative Nurses Association Diversity, Equity, Inclusion, & Belonging: https://www.
advancingexpertcare.org/education-events/on-demand-education/22diversity-equity-inclusion-belonging/
National Association for Home Care & Hospice Diversity, Equity, & Inclusion: https://nahc.org/archive/diversity-
equity-inclusion/
National Association of Social Workers Diversity, Equity & Inclusion: https://www.socialworkers.org/About/
Diversity-Equity-and-Inclusion
National Hospice and Palliative Care Organization Diversity Tools & Resources: https://www.nhpco.org/
education/tools-and-resources/diversity/
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Pediatric Resources: https://www.nhpco.org/pediatrics
Wolfe, I., Moore, B., Bush, L., Knackstedt, A., Derrington, S., Hoehn, K. S., Johnson, L-M., Porter, S., & Brown, A. C.
(2023). Antiracism: An ethical imperative. Pediatrics, 152(3): e2022059804. https://doi.org/10.1542/peds.2022-
059804.
References
1. American Academy of Hospice and Palliative Medicine. (2020). Statement on racism in Healthcare. http://
aahpmblog.org/articles/aahpm-statement-on-racism-in-healthcare/
2. American Academy of Pediatrics (2021). Words matter: AAP guidance on inclusive, anti-biased language.
https://www.aap.org/en/about-the-aap/american-academy-of-pediatrics-equity-and-inclusion-efforts/
words-matter-aap-guidance-on-inclusive-anti-biased-language/
3. American Academy of Pediatrics. (2022). Children with medical complexity. https://www.aap.org/en/patient-
care/children-with-medical-complexity/
4. American Psychology-Law Society Practice Committee. (2021). Race in forensic evaluations: The AP-LS practice
committee offers practical considerations (APA Division 41). American Psychology-Law Society. https://ap-ls.
org/resources/guidelines/#dnldts27801
5. Berry, J. G., Hall, M., Cohen, E., O’Neill, M., & Feudtner, C. (2015). Ways to identify children with medical
complexity and the importance of why. Journal of Pediatrics, 167(2):229-237. https://doi.org/10.1016/
jpeds.2015.04.068.
6. Berry, J. G., Hall, D. E., Kuo, D. Z., Cohen, E., Agrawal, R., Feudtner, C., Hall, M., Kueser, J., Kaplan, W., & Neff, J.
(2011). Hospital utilization and characteristics of patients experiencing recurrent readmissions within children’s
hospitals. Journal of the American Medical Association, 305(7):682-690. https://doi.org/10.1001/jama.2011.122
7. Berry, J. G., Hall, M., Neff, J., Goodman, D., Cohen, E., Agrawal, R., Kuo, D., & Feudtner, C. (2014). Children with
medical complexity and Medicaid: Spending and cost savings. Health Affairs, 33(12); 2199-2206. Https://doi.
org/10.1377/hlthaff.2014.0828.
8. Bjur, K. A., Wi, C-I., Ryu, E., Crow. S. S., King, K. S., & Young, J. J. (2019). Epidemiology of children with multiple
complex chronic conditions in a mixed urban-rural US community. Hospital Pediatrics, 9(4):281-290. https://doi.
org/10.1542/hpeds.2018-0091.
9. Bower, K., Lotstein, D., & Torkildson, C. (2022). How one state is working towards equitable access to pediatric
palliative care. Pediatric e-Journal, 69: 46-49. https://www.nhpco.org/wp-content/uploads/Issue_69_
Pediatric_E-Journal.pdf
10. California Health and Human Services (2024). Department of health care access and information [Data sets}.
California Department of Health and Human Services. https://data.chhs.ca.gov/
11. Children’s Hospice and Palliative Care Coalition of California, (2024). https://chpcc.org/resources
12. Davis, H. A., Weaver, M. S., Torkildson, C., & Lindley, L.C. (2023). Understanding adult hospices caring for
children in California, 2018-2021. American Journal of Hospice and Palliative Medicine, 0(0. https://doi.
org/10.1177/10499091231204941
13. Feudtner, C., Christakis, D. A., & Connell, F. A. (2000). Pediatric deaths attributable to complex chronic
conditions: A population-based study of Washington state, 1980-1997. Pediatrics, 106 (1), 205-210.
14. Feudtner, C., Faerber, J. A., Rosenberg, A. R., Kobler, K., Baker, J. N., Bowman, B. A., Wolfe, J. & Friebert, S.
(2021). Prioritization of pediatric palliative care ield-advancement activities in the United States: Results of a
national survey. Journal of Pain and Symptom Management, 62(3):593-598. https://doi.org/10.1016/j.
jpainsyman.2021.01.007
15. Feudtner, C., Hays, R. M., Haynes, G., Geyer, J. R., Neff, J. M., & Koepsell., T. D. (2000). Deaths attributed to
pediatric complex chronic conditions: National trends and implications for supportive care services. Pediatrics,
107(6), e99. https://doi.org/10.1542/peds.107.6.e99
16. Flowers, N., Casey, W., Curd, J., Featherstone, R., Martin, J., Perez, A. (2024). The art of documentation: What is
necessary and what is too much when telling a patient’s story [PowerePoint slides}. National Hospice and
Palliative Care Organization Social Work Community Chat. https://higherlogicdownload.s3.amazonaws.com
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17. Goddu, A. P., O’Conor, K. J., Lanzkron, S., Saheed, M. O., Saha, S., Peek, M. E., Haywood Jr., C., & Beach, M. C.
(2018). Do words matter? Stigmatizing language and the transmission of bis in the medical record. Journal of
Internal Medicine, 33(5): 685-691. https://doi.org/10.1007/s11606-017-4289-2.
18. Kuo, D. Z., Hall, M., Agrawal, R., Cohen, E., Feudtner, C., Goodman, D. M., & Neff, J. M. (2015). Comparison of
health care spending and utilization among children with Medicaid Insurance. Pediatrics, 136(6): e1521-e1529.
https://doi.org/
19. Leyenaar, J. K., Schaefer, A. P., Freyleue, S. D., Austin, A. M., Simon, T. D., Van Cleave, J., Moen, E. L., O’Malley, A.
J., & Goodman, D. C. (2022). Prevalence of children with medical complexity and associations with health care
utilization and in-hospital mortality. Pediatrics, 176(6). https://doi.org/10.1001/jamapediatrics.2022.0687
20. Marcewicz, L. J, Kavalieratos. D., Kunihiro, S., Curseen, K. A., & Johnson, K. (2023). A different lens: Using a
critical race theory framework to discuss racial differences in palliative care. Journal of Pain and symptom
Management, 65(3): E266-E267. https://doi.org/10.1016/j.jpainsymman.2022.12.057.
21. McPhee, J. (2024, April 2). Evaluating and framing risk in forensic evaluations of legally involved youth: Careful
considerations of anti-blackness, trauma, and mitigating further harm. [Video). Law and Mental Health
Webinar Series, University of New Mexico, School of Medicine: Psychiatry and Behavioral Sciences. https://
www.youtube.com/watch?v=5rt7tZAMmh8&list=PL2Z5F_4X2pTFe0imkZE3gy46pxFH73FEa&index=2
22. National Hospice and Palliative Care Organization, (2023). Hospice and palliative care code of ethics. National
Hospice and Palliative Care Organization. https://www.nhpco.org/wp-content/uploads/Code_Ethics.pdf
23. National Hospice and Palliative Care Organization, (2021). Disparities and inequities in pediatric palliative/
hospice care. Pediatric e-Journal, 64. https://www.nhpco.org/wp-content/uploads/ChiPPS_E-Journal_Issue_64.
pdf
24. National Hospice and Palliative Care Organization, (2023). Pediatric Facts and Figures, 2023 edition. https://
www.nhpco.org/wp-content/uploads/NHPCO_Pediatric_Facts_Figures_2023.pdf
25. Simon, T. D., Berry, J. Feudtner, C., Stone, B. L., Sheng, I., Bratton, S. I., Dean, J. M., & Srivastava, R. (2010).
Children with complex chronic conditions in inpatient hospital settings in the United States. Pediatrics, 126(4):
647-655. https://doi.org/10.1542/peds.2009-3266.
26. State of the Science of Pediatric Palliative Care, December 11-12, 2023, National Institute of Health, Eunice
Kennedy Shriver National Institute of Child Health and Human Development.
27. Sun, M., Oliwa, T., Peek, M. E., & tung, E. L. (2022). Negative patient descriptors: Documenting racial bias in the
electronic health record. Health Affairs, 41(2). https://doi.org/10.1377/hltaff.2021.01423
28. Riggs-Romaine, C. L. R., & Kavanaugh, A. (2019). Risks, beneits, and complexities: Reporting race & ethnicity in
forensic mental health reports. International Journal of Forensic Mental Health, 18(2), 138–152. https://doi.org/
10.1080/14999013.2018.1531094
29. Weaver, M. S., Chana, T., Fisher, D., Fost, H., Hawley, B., James, K., Lindley, L. C. Samson, K., Smith, S. M., Ware,
A., & Torkildson, C. (2023). State of the service: Pediatric palliative and hospice community-based service
coverage in the United States. Journal of Palliative Medicine, 26(11), 1521–1528. https://doi.org/10.1089/
jpm.2023.0204
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Crowdsourcing Pediatric Palliative Care and
Elevating the Pediatric Voice: The Story Behind
the National Coalition for Hospice and Palliative
Care’s Pediatric Division (Formerly The National
Pediatric Palliative Care Task Force)
Holly Davis, MS, APRN
AVP of Clinical Services
VIA Health Partners
Charlotte, NC
davish@hpccr.org
Cheryl A. Thaxton, DNP, APRN, CPNP, FNP-BC, CHPPN, FPCN, ACUE, FAANP
Associate Dean, Professor, & Graduate Education Chair
College of Nursing
UNT Health Science Center
Fort Worth, TX
Rachel Thienprayoon, MD, MSCS, FAAP, FAAHPM
Chief Clinical Wellness Oficer
Cincinnati Children’s Hospital
Associate Professor of Anesthesia and Pediatrics
Cincinnati, OH
rachel.thienprayoon@cchmc.org
Devon Dabbs, BBA
Director, Pediatric Division
National Coalition of Hospice and Palliative Care
Essex, CT
Crowdsourcing (def.) “an effort to solve problems, generate ideas, or complete tasks
through collective intelligence and collaborative efforts.”
In 2019, a convening of national pediatric palliative care (PPC) leaders determined that a pediatric-speciic national
task force was critical to establishing alignment across the ield and strengthening the ield’s capacity to deliver
services. In response, with generous support from the Cameron and Hayden Lord Foundation, the National
Coalition for Hospice and Palliative Care (NCPHC) launched a grant-funded initiative, the National Pediatric PPC
Task Force, in the fall of 2020.
The Task Force’s multi-disciplinary membership was comprised of diverse and emerging PPC leaders with
representatives from NCHPC’s member organizations,
1
aligned stakeholder organizations including the American
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Academy of Pediatrics, American Psychological Association, Association for Child Life Professionals, Network of
St
ate Coalitions, and family advocates.
Charged with identifying feasible action items to improve access to high-quality palliative care for children and
adolescents, members “crowdsourced” and leveraged their collective expertise to advance relevant national PPC
initiatives, legislation, and policies, and forge partnerships to develop educational and informational PPC resources.
NCHPC launched a concerted and successful effort to secure pediatric representation on national platforms
focused on or aligned with palliative care including four NASEM (National Academies of Sciences, Engineering, and
Medicine) workshops. Members actively worked to strengthen their representative organizations’ commitment and
understanding of pediatric palliative care, and pediatric representatives now sit on NCHPC’s four standing
workgroups—Advocacy, Communications, Equity & Inclusion, and Quality.
In December 2022, following the Dobbs vs Jackson ruling, the Task Force published a set of PPC guiding principles
reconirming its commitment to supporting all pediatric palliative care providers, children, and their families. This
action was prompted by concerns voiced by PPC stakeholders, particularly perinatal palliative clinicians. Response
to the guiding principles was powerful. Several PPC clinicians wrote to thank the Task Force for the “important”
and “timely” communication while sharing irsthand experiences and observations on the impact the decision was
having on individuals’ autonomy to make their own healthcare decisions and their ability to practice evidence-
based, compassionate medicine.
Last November, in recognition of the Task Force’s proven value to the ield, the NCHPC’s Board of Directors
unanimously voted in support of transitioning the Task Force to an organizational Pediatric Division.
Then Chair Rachel Thienprayoon, MD, summarized the impact of the transition, stating, “For decades pediatric
palliative care leaders have sought to establish a formal body, which can advocate on behalf of the ield and increase
access to services. We are exceedingly grateful to the National Coalition and its Board of Directors for supporting our
efforts and for providing us with a home to continue this important work.”
The Task Force oficially became a Division on January 1, 2024, and members from the Task Force now serve in the
Pediatric Division.
The Pediatric Division remains focused on collaboratively advancing the ield of pediatric palliative care by serving
as or identifying subject matter experts, assessing needs, breaking down silos, forging partnerships, and
advocating for critical change. Members recognize the need to be responsive and take the initiative on key issues,
but the Division is not insular in its approach. It is broadening and strengthening its relationships with mission
aligned organizations. It is also prompting and facilitating thought-provoking discussions about relevant and
critical PPC topics including pediatric concurrent care and how it aligns and differs from adult concurrent care
service, federal policy opportunities to create national consistency and access to PPC services, and the value and
need to elevate the parent voice and engage families to promote equity, access, and quality. These conversations
will continue to inform the Pediatric Division’s advocacy actions going forward.
Members of the Pediatric Division continue to meet virtually each month to discuss key issues and initiatives and
formulate strategies to address them. To stay informed about the Pediatric Division’s activities and opportunities
for participation and engagement, we encourage you to sign up for NCHPC’s Coalition Edition. If you have
questions about the Pediatric Division and our work, please contact Devon Dabbs, director of NCHPC’s Pediatric
Division, at [email protected].
The Pediatric Division is chaired by Holly Davis, APRN. Rachel Thienprayoon, MD, serves as past chair and Melissa
Hunt, PharmD is chair elect. The work of the Pediatric Division is generously funded by the Cameron and Hayden
Lord Foundation and Y.C. Ho/Helen & Michael Chiang Foundation.
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A Children’s Respite Home is Where the Heart is
Kasey Kaler
Communications Strategist
National Center for Pediatric Palliative Care Homes/
Children’s Respite Homes of America
and
Jonathan Cottor, MBA, MPH
Founder/CEO
National Center for Pediatric Palliative Care Homes/
Children’s Respite Homes of America
Scottsdale, AZ
A Glaring Gap in Services
Caring for children with signiicant medical complexities is a demanding task that requires continuous and intensive
care. This can leave parents and caregivers exhausted, with no place or person to turn to for rest or sleep. Relatives
and friends who step up to help do not typically have the skills or training to provide the required care. While
medical advancements have extended the lifespan of some children with life-limiting conditions, it also means that
families are expected to provide much of the child’s daily care for even longer periods.
Currently, an estimated one million children in the U.S. are living with very complex medical conditions, nearly one
percent of all U.S. kids. Their intensive needs account for over a third of all children’s healthcare spending and 40%
of all child hospital deaths.
Being “medically fragile” and “sick” are distinctly different. The majority of a medically fragile child’s life is spent
living in the family’s own home, not in a hospital or nursing home, which are utilized for periods of sickness. Cancer,
muscular dystrophy, or thousands of “rare genetic diseases” typically have no cures, no treatments, and may
dramatically shorten a child’s life.
Families and caregivers are exhausted, stressed, and feeling lonely and isolated from a lack of support. Primary
insurance eludes coverage, deferring to a state’s Medicaid system for those who are enrolled. There is simply a
severe lack of providers available to deliver care.
For Elli and her family, inding the right resources has been an arduous journey. Elli is a 22-month-old child with a brain
abnormality who was living in New Jersey with her parents as her sole caregivers. Without support, they could not
work, shuttling back and forth to appointments, leaving them only a few hours each week to run errands and rest.
Historically, the U.S. healthcare system has primarily focused on supporting aging adults and individuals with
disabilities, leaving children’s care mainly in the hands of parents. While major cities in the U.S. have welcomed the
establishment of children’s hospitals, which have become centers of excellence with specialists for children with
complex medical conditions, a signiicant gap has emerged in dedicated children’s respite services and resources for
families when their child is living at home.
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“This is such a niche ield of pediatric, palliative, and respite care. We had to ind the doctors comfortable enough
even saying palliative to us. And that was just one hurdle.” Elli’s mom said. “When we did ind a doctor in Jersey
who was pediatric palliative trained, she couldn’t even be our baby’s doctor because she was heading the inpatient
part of a children’s hospital.”
Elli’s parents and the doctor worked hard to ind creative solutions but ultimately fell into the system’s cracks.
“Other than admitting her into the inpatient unit, there was no way to make respite happen for insurance
purposes,” mom said. “She would not qualify because she doesn’t have a trach[eostomy] or a G-tube.”
Those cracks in the system back many parents against the wall, expecting them to become full-time caregivers and
stay breadwinners.
Elli’s dad found a hint of help through their private insurance, providing several days and hours’ worth of home
health aides. But when his employer switched insurance plans, that support disappeared, and suddenly, mom
needed more help than ever from dad.
“At that point, we had been doing that for about 20 months straight with very little sleep, and my husband ended
up losing his job,” Mom said. “So, we just didn’t know where to go.”
Leading by Example
In the early 2000s, dedicated pediatric respite, palliative, and hospice programs emerged in the U.S. These
programs were inspired by successful care models established in the United Kingdom in the 1980s, starting with the
world’s irst dedicated children’s hospice home, Helen House, in Oxford, England. Efforts to improve the quality of
life for children on life-limiting journeys had started even earlier, with some success in developing in-home services
or ancillary programs in adult facilities. However, in the U.S., due to a lack of clear licensing and Medicaid
reimbursement funding for pediatric care, launching dedicated pediatric “Homes” required relying solely on
philanthropic strategies.
The irst two dedicated pediatric “Homes” that emerged were George Mark Children’s House in San Leandro,
California, and Ryan House in Phoenix, Arizona. Each house was founded by passionate leaders who understood
the glaring need for respite for parents and caregivers for children with signiicant medical complexities. The
founding teams quickly learned the challenges of opening these programs within the current U.S. healthcare
system. They relied on communicating the story of the real need for these homes, and private philanthropy. These
founding programs became mentors, and along with other leaders who had begun pursuing care homes in their
communities, came together as a coalition known as “Like Houses.”
In 2018, Crescent Cove in Brooklyn Center, Minnesota, became the third dedicated pediatric “Home” inspired by the
U.K. models to open its doors. Another variation, A Rosie Place for Children in South Bend, Indiana, focuses on
providing overnight respite in a free-standing facility and has been actively sharing knowledge within the Like
House Coalition since its opening in 2011.
The goals of these dedicated pediatric “Homes,” are twofold. First, they aim to become an extension of a family’s own
home, providing essential support and care for children with life-limiting conditions and their whole families. Second,
they serve as models for other communities seeking to establish similar initiatives. By sharing their knowledge and
experiences, these programs collaborate to enhance the quality of life for children on life-limiting journeys.
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Forming a Collaborative Center
By the summer of 2021, there was growing momentum to establish a national collaborative Center to share
knowledge and address the challenges of opening pediatric care homes in communities across the country. Because
no other national or state organization is positioned or prioritizing resources to address the need of provider
growth at a local level, the National Center for Pediatric Palliative Care Homes (NCPPCH) was established,
welcoming community-based program leaders passionate about driving change to come together and share a
common vision to grow the community-based provider network.
Children’s Respite Homes of America (CRHA), https://childrensrespitehomes.org/, aims to raise awareness about
the need for respite services for medically fragile children and their families. CRHA is the public face and fundraising
arm of NCPPCH. By creating a uniied brand, CRHA ampliies the voices of grassroots programs and shares the
stories of unmet needs in families.
The NCPPCH organization, https://www.ncppch.org/, focuses on educating professionals about community-based
respite and palliative and hospice care, aiming to create a collaborative national center for learning and addressing
policy gaps. NCPPCH champions practical needs to scale, strengthen, and sustain these important care models
around business model optimization, licensing, and reimbursement methods. This is about closing the gap by
building provider capacity.
NCPPCH also collaborates with other like-minded associations, organizations, and coalitions that share a common
purpose to enhance the quality of life for medically fragile children and families and improve healthcare delivery
systems, recognizing that together, we’re a powerful voice.
A Mission to Scale, Strengthen, and Sustain
Currently, there are 54 dedicated children’s respite homes in the United Kingdom, compared to only a handful of
known homes in the United States, despite the latter having nearly ive times the population. To achieve the same
level of family access to these critical care models would mean that someday, there will be at least 266 homes
across the U.S. There is still so much work to be done!
Founders of new community providers can be anyone; what is common is a deep connection to this vulnerable
population. Often, their dream struggles to take shape because they lack experience or knowledge on the business
side of how to form an organization, become a nonproit, develop effective boards, create strategic plans, and
fundraising. They feel excited and relieved to discover they are not alone.
The overall goal is to develop the U.S. healthcare system to support these programs inancially and operationally,
ensuring their continued existence and impact in serving the needs of children with complex medical conditions and
their families.
Education and awareness are essential in this journey
“Every story shared, every policy inluenced, brings us closer to a world where our children’s needs are understood
and met,” Jonathan Cottor, CEO and Founder of NCPPCH, said. “The awareness raised is our voice, reaching out to
those who can make our dream of accessible respite care a reality.”
CRHA’s awareness efforts have already begun to reach new passionate leaders who are connecting with NCPPCH
for inspiration and help to realize their dreams of opening a dedicated respite home in their community. Recently
formed home programs in a number of U.S. cities, “Emerging Homes,” can now leverage the expertise of NCPPCH’s
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Government Affairs and National Advisory Councils to more clearly shape their own vision and business plans,
which create a more aggressive timetable towards opening. CRHA’s social media campaigns are working to reach
more passionate leaders to expand this vital care network, including Elli’s doctor in New Jersey, who has connected
with NCPPCH to discover more ways to expand these services in her area.
CRHA’s website, https://childrensrespitehomes.org/, maintains an up-to-date map of the existing and emerging
conversations with new passionate leaders who are part of this national collective. This is an easy reference to ind
passionate leaders in cities nationwide. Encouraging others to become involved and creating forums of support are
ways the community-based home provider network will expand to support more families.
A Future Hope
The need for dedicated children’s respite services and support for medically fragile children and their families is
clear. By taking action, a more inclusive and supportive healthcare system that meets the needs of all children,
including those with signiicant medical complexities, can be a reality. Every new home that opens gives care access
to 5,000 children and families.
“Early on, especially in our situation, my husband and I were allergic to the idea of hope. There’s no hope for a cure
or hope that she will live on and lead a typical life. So we didn’t want that word involved. But now, I think our hopes
are more modest. They are really to make sure that if you end up in a situation like ours, you’re way more supported
than we were,” Elli’s mom said. “We’re sort of in the dark ages of caring for the families as a whole when they have
medically complex kids. So that’s kind of the hope, and it’s like a future hope. And it’s something we’re just seeing
scraps of right now. These things will happen, but hopefully, the country is more prepared.”
A community-based children’s respite home is an extension of a family’s own home and a temporary haven. If you
want to get involved and learn more about existing programs, emerging programs, or where talks of additional
homes are happening, please visit https://childrensrespitehomes.org/ or https://www.ncppch.org/.
We invite you to join our mission to scale, strengthen, and sustain community-based children’s respite, palliative,
and hospice home programs. Together, we can ensure that every family with a medically fragile child has access to
the respite services they need and deserve.
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P
rescribed Pediatric Extended Care
Judy Zeringue, MAPL, BSN, RN, CPLC, CHPPN
Urology Nurse Navigator
Palliative Care Champion
Children’s Hospital
New Orleans, LA
Judy.Zeringue@LCMCHealth.org
“Prescribed Pediatric Extended Care (PPEC) can be a lifeline for families with children with special needs.”1 These
programs are also called (PDHC) Pediatric Day Health Care. They are specialized care that offers support for
medically complex children. Such children require skilled nursing and therapies to support their needs. This is a
specialized Medicaid beneit, based on eligibility. The level of support varies by state as these programs have been
established and continue to grow. The need for this support is signiicant.
PPEC or PDHC are community based, family-centered, non-residential settings designed to provide compassionate,
skilled medical care and therapies for medically fragile children who experience chronic health conditions. Some of
these children may be supported/dependent on medical technology to sustain their lives. These centers provide support
for families through education and expert medical care to meet the individual child’s special needs.1 This Medicaid
beneit allows for patients who experience complex medical conditions to receive medical care in a non-residential
setting. Children who meet the eligibility requirements may be covered from birth through age 21 years old.
Services which are offered for care may include Nurses, Psychosocial Support, Childcare Therapist, Physical
Therapy, Occupational Therapy, Speech Therapy, and Transportation. This nurturing environment offers
compassionate care and therapies to support those with special needs.
NBC live, on January 19, 2024, ran an insightful story to provide a unique insight on “The Rise of Medical Daycares
in the U.S.”
2
It shares the perspective that these medical Daycares offer unique skills to meet the needs of children
who experience complex medical issues and may be supported with medical technology.
https://youtu.be/kfZncE-YvYk?si=L7X66qP9CCQfdyaZ/
The NBC report highlighted the fact that only about 20 states have
facilities in which a Medicaid funded program covers the cost of the day
care. PPEC programs are most prominent in Florida and Texas. Based
on the individual state, Louisiana has PDHC while Mississippi has PPEC.
Regardless of the model a state adopts, eligibility requirements
remain consistent. To qualify for this beneit, a child must be
medically dependent or technologically dependent. Their special
needs are due to complex medical conditions and they require
continual care.
Resources and respite are important contributions to these care models. Children who experience medical
challenges may be cared for by skilled caregivers outside of the home. These children may receive therapies in this
setting, and it provides a source of socialization. It also provides needed support for caregivers. An assurance that
these medically fragile children are well cared for may allow a parent to have employment, care for family needs,
and be a source of respite for a few hours. This support in communities allows support for those providing care for
our most fragile and vulnerable children.
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Guidelines for the State of Florida PPEC are provided as follows. https://ahca.mylorida.com/medicaid/child-
health-services/prescribed-pediatric-extended-care-ppec/
“Prescribed Pediatric Extended Care (PPEC) centers allow Medicaid eligible children from birth through age 20 with
medically-complex conditions to receive continual medical care in a non-residential setting. When approved,
children can attend a PPEC up to a maximum of 12 hours per day while receiving nursing services, personal care,
developmental therapies, and caregiver training.”
Pediatric Day Health Care (PDHC) facilities and Prescribed Pediatric Extended Care (PPEC) are licensed by the
speciic State. As an example, according to the guidelines in the State of Louisiana, https://ldh.la.gov/page/
pediatric-day-health-care-facility#:~:text=%22Pediatric%20day%20health%20care%20facility,children%20
who%20requre%20close%20supervision/
“Pediatric day health care facility” means a facility that may operate seven days a week, not to exceed twelve hours
a day, to provide care for medically fragile children under the age of twenty-one, including technology dependent
children who require close supervision.“
The concurrent care Provision of the of the Affordable Care Act allows children with Medicaid coverage to receive
disease-directed therapies while enrolled in hospice.”
3 (p. 47)
According to the NHPCO, “Concurrent care is for all
children with a life-limiting diagnosis to continue to receive curative or life-prolonging treatment along with hospice
care, avoiding the impossible choice between life-prolonging and hospice care.”
4
This concept is often misunderstood with those hospices who more often care for adult patients. Adults would not
be eligible for curative treatment while simultaneously receiving hospice. Because of concurrent care, pediatric
patients covered by Medicaid can receive support from hospice while enrolled in medical daycare or PPEC if they
meet eligibility requirements.
Prior to the affordable care act, to enroll in hospice, which requires a prognosis of 6 months, one would give up the
right to pursue medical treatment. For children, with the signing of the Affordable Care Act in 2010 for Concurrent
Care, they may be eligible to pursue continued treatment and qualify for the support of hospice. Children who
experience complex chronic conditions (CCC) can beneit signiicantly with the additional support of PPEC or
pediatric medical day care. “Children with CCCs and their families live with the lifelong joys of having a child with
special needs and also the challenge of life-threatening and life-limiting illness”
3 (p.466)
As caregivers for these special
children, PPEC or PDHC can provide an important support system to care for these children with expertise and can
offer all the supportive therapies and socialization to help optimize their quality of life.” In the United States,
advances in pediatric healthcare continue to reduce childhood mortality while allowing children with complex illness
to live longer.”
3 (p.466)
This additional support for the family can allow them to focus on sharing sacred time with their
loved ones and providing the best care possible to enhance their quality of life.
References
1. Maragh, C. Caicedo, C. Prescribed Pediatric Extended Care: A guide for nurses. Nursing 52(8):p 48-50, August
2022. DOI:10.1097/01.NURSE.0000839808.47152.5d.
2. NBC Live https://youtu.be/kfZncE-YvYk?si=L7X66qP9CCQfdyaZ/
3. Wolfe, J., Hinds, P., & Sourkes, B. (2022). Interdisciplinary Pediatric Palliative Care (2nd ed.). Oxford University
Press.
4. NHPCO (National Hospice Palliative Care Organization) https://www.nhpco.org/palliativecare/pediatrics/
pediatric- concurrent-care/
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Pediatric Long-Term Care: A Place and a Role
Matthew R. Misner, DO, MS, MAPS
Pediatric Hospice Physician/Bioethicist
Center For Hospice Care
Mishawaka, Indiana
misnerm@chcare.org
The need to provide available care to children with medical complexity (CMC) is high. As more and more children
require treatments that may involve multiple medications, as well as medical technology and equipment, parents
now regularly face the dificult choice of placing their child in a long-term facility (Alon et al, 2022). Supporting the
family’s decision to care for their child at home is prudent, but the topic of pediatric long term acute care (LTAC)
use deserves consideration.
LTACs are health facilities that usually admit complex patients as transfers from other acute care units such as
ICUs. The reasons for admission might include the need for mechanical ventilator weaning, providing IV antibiotics,
treating malnutrition, or addressing complex wound care (Munoz-Perez, 2009). Typical facility guidelines require
that patients stay for a minimum of 25 days and then must adhere to any federal or state mandates that stand in
order to assure the safety of those admitted.
Of course, pediatric patients are only part of the LTAC patient population. The number of adult patients needing
LTAC intervention is increasing. An estimated one in seven older hospitalized patients will transfer to an LTAC
facility as opposed to returning home (Makam et al, 2018). This accounts for over 130,000 stays and approximately
$5.3 billion in Medicare spending annually. Constructing more LTAC facilities helps to meet this need with a noted
estimated 8.8% increase rate per year. To put this in perspective, there were only 192 available facilities in 1997 with
a utilization of 38.1/100,000, yet this number increased to 408 in 2006 demonstrating an increased utilization rate
of 99.7/100,000 (Khan, 2010).
The American Academy of Pediatrics (AAP) acknowledges a similar need for children. In the last decade alone, over
13% to 18% of children continue to exhibit some level of special need (Cohen, 2011). CMC represent a speciic subset
population who often require more intense treatment that often includes ventilatory support. Furthermore, the
group represents diverse individuals who may exhibit congenital or acquired multisystem disease, those with
neurologic conditions and associated functional impairment, or even pediatric cancer patients (2011, p. 529). As the
number of these children increase, this simultaneously leads to a greater utilization of hospitals to meet the need.
For instance, hospitalization rates for CMC increased signiicantly from 1991 to 2005 and continues today (Burns,
2010). However, unlike their adult counterparts, children do not necessarily have the option of transferring to a
LTAC after their hospitalization terminates. Home care nursing (HCN) provides an alternative route for reentry
purposes, but national shortages compound the situation (Maynard, 2019). Hospitals must then assume the
responsibility to provide continual care and this in turn increases overall costs and discharge days (DD). One study
notes this fact and demonstrates a worsening trend since 2001 (p. 6).
Furthering the dificulty of the situation, the need for LTAC assistance to children is unmeasurable. No deinitive
data exist to evaluate the number of facilities available or their locations (Alon et al, 2022). This in part is due to
the fact that many of the children are receiving care within adult facilities as opposed to free-standing pediatric
centers. Although facilities certiied by Medicare and Medicaid are federally mandated to report a minimum set of
data, this only applies to adult or geriatric patients. Any relevant information assigned to pediatric patients, such
as treatments and issues related to their diagnoses, is not reportable (2022, p.1).
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Other known barriers do exist and further hinder the pediatric LTAC discussion. Health care-associated infections
(HAIs) periodically emerge and increase morbidity, hospitalizations, and mortality among children living in these
facilities (Murray et al, 2015). Many of these infections are invariably passed through the use of medical devices,
such as tracheostomies, that help the children needing them. Most of the infections are viral in nature including
parainluenza and inluenza. Although following guidelines can help to alleviate transmission, one study notes the
fact that staff members who leave the facilities will always serve as a potential reservoir for future outbreaks
(2015, p. 758). Another valid concern for some parents and staff considering the option of placing a child on a LTAC
unit is the risk for potential abuse. This may include the issue of patient neglect. The State Operations Manual
deines neglect as the “failure of the facility, its employees, or service providers to provide goods and services to a
resident that are necessary to avoid physical harm, pain, mental anguish, or emotional distress” (U.S. Federal
Government). Although each individual state is mandated to document the use of bedrails and restraints,
frequency of physician visits, medication use and distribution, and other protective information, it is often
challenging to maintain secure environments for children, and this creates a chasm that parents are
understandably reluctant or unable to bridge.
Despite the challenges that exist, a growing number of facilities do attempt to meet the needs of children by
providing long-term care either permanently or during transitional periods. One such facility that deserves much
credit for the care it provides to medically challenged children is the Ashley House in Spokane, Washington. It was
created in 1989 to provide pediatric care to many who were either staying in hospitals for extended periods of time,
resided in adult facilities, or were placed out of state for care (Dreher, 2021). The facility now serves many diverse
children ranging from infancy to early adulthood. Protections are assured and full interaction rights of family and
friends are maintained. Other organizations helping CMC include Children’s Healthcare Organization of Northern
California (CHONC), Ranken Jordan Pediatric Bridge Hospital in St. Louis, Blythedale Children’s Hospital in
Winchester, NY, Broward Children’s Center in Pompano Beach, FL, St. Mary’s Hospital for Children in Bayside, NY,
and Harmony Street at ILIFF in Dunn Loring, VA.
Another beneit of pediatric LTAC facilities is that they provide the opportunity for respite care when needed. This
form of assistance relieves stressful and emergent situations for families who receive in-home services for CMC
(Indiana Department of Child Services Child Welfare Manual, 2017). Families are allowed care for periods ranging
from twenty-four hours up to 5 days at different intervals throughout the year.
In conclusion, advocating for the parental right to take care of their children at home is a sound decision. However,
this may become a challenging feat with a medically complex child. Allowing parents the opportunity to seek
alternatives outside of a PICU or adult LTAC facility makes good sense. Children deserve the security and comfort
of being with their peers and parents need assurance that they’ve made the right decision to place. Advocating for
pediatric LTAC use on both a state and federal level is prudent in that more and more children ind themselves in
need of this service. Although we as medical care givers may not cure CMC of their medical conditions, we can
provide them with a more functional environment to advance and develop. Pediatric LTACs provide one avenue to
make this a reality.
Many blessed thanks go to several Pediatric Action Council (PAC) members for their helpful assistance: Christy
Torkildson, Jessica Sturgeon, Melissa Hunt, and Oralea Marquardt. I would also like to include Dr. Bradd Hemker for
his insight about this topic as well.
References
Alon, L., Boss, R. D., & Seltzer, R. (2022). Long-Term Care for children with medical complexity: A call for data.
Pediatrics, 149(6), 1–3. https://doi.org/10.1542/peds.2021-054952
Burns, K. H., Casey, P. H., Lyle, R. E., Bird, T. M., Fussell, J. J., & Robbins, J. M. (2010). Increasing prevalence of
medically complex children in US hospitals. Pediatrics, 126(4), 638–646 https://doi.org/10.1542/peds.2009-1658
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Cohen, E., Kuo, D. Z., Agrawal, R., Berry, J. G., Bhagat, S. K., Simon, T. D., & Srivastava, R. (2011). Children with
medical complexity: An emerging population for clinical and research initiatives. Pediatrics, 127(3), 529–538 https://
doi.org/10.1542/peds.2010-0910
Dreher, A. (2021, June 14). Ne
w Group home in South Spokane for medically fragile kids set to open this winter. Spokesman.com https://www.
spokesman.com/stories/2021/jun/14/new-group-home-for-medically-fragile-kids-opens/
Kahn, J. M. (2010). Long-term acute care hospital utilization after critical illness. JAMA, 303(22), 2253. https://doi.
org/10.1001/jama.2010.761
Makam, A. N., Nguyen, O. K., Xuan, L., Miller, M. E., & Halm, E. A. (2018). Longterm acute care hospital use of
nonmechanically ventilated hospitalized older adults. Journal of the American Geriatrics Society, 66(11), 2112–2119.
https://doi.org/10.1111/jgs.15564
Maynard, R., Christensen, E., Cady, R., Jacob, A., Ouellette, Y., Podgorski, H., Schiltz, B., Schwantes, S., & Wheeler, W.
(2019). Home health care availability and discharge delays in children with medical complexity. Pediatrics, 143(1).
https://doi.org/10.1542/peds.2018-1951
MunozPrice, L. S. (2009). Longterm acute care hospitals. Clinical Infectious Diseases, 49(3), 438–443. https://doi.
org/10.1086/600391
Murray, M. T., Pavia, M., Jackson, O., Keenan, M., Neu, N. M., Cohen, B., Saiman, L., & Larson, E. L. (2015). Health
care–associated infection outbreaks in pediatric long-term care facilities. American Journal of Infection Control,
43(7), 756–758. https://doi.org/10.1016/j.ajic.2015.03.010
State Operations Manual Appendix PP. (n.d.-b) https://www.cms.gov/medicare/provider-enrollment-and-
certiication/guidanceforlawsandregulations/downloads/appendix-pp-state-operations-manual.pdf
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Toward A Definition Of Adult Hospices Caring
For Children
Heather A. Davis, PhD
Health Policy Post-Doctoral Research Fellow
PedEOL Care Research Group
College of Nursing,
University of Tennessee, Knoxville
Knoxville, TN
and
Lisa C. Lindley, PhD, RN, FPCN, FAAN
Associate Professor | Nightingale Endowed Faculty Fellow
PrincipalInvestigator, PedEOL Care Research Group
College of Nursing,
University of Tennessee, Knoxville
Knoxville, TN
Introduction
Oficial deinitions of adult hospices in the U.S. academic literature have proved dificult to identify. A search of the
literature found several deinitions of adult hospice care, but not of adult hospices caring for children. The Code of
Federal Regulations (CFR) (C.F.R, 1983) and the Centers for Medicare and Medicaid Services (CMS) (Centers for
Medicare and Medicaid Services, 2023) provide their own deinitions of hospice which include private or public
agencies and organizations that provide hospice care. Hospice care is further deined as care to those who are
terminally ill and includes palliative and other supportive services during an individual’s time at end-of-life. CMS’s
deinition applies additional regulations to those who qualify for these services under Medicare and/or Medicaid.
Additionally, states usually have a state-speciic statutory deinition of hospice facility which includes the necessity
of licensure and certiication to operate (Untitled California Assembly Bill No. 1847, 2014).
While it is assumed that those who qualify for hospice care under Medicare are adults, there is no speciication as
to what adult hospices and/or pediatric hospices are in the CFR’s or the CFM’s deinitions. This is important
because it vitally aids in understanding the service provisions available to children, who live in areas where pediatric
hospice is geographically unavailable or otherwise not accessible. Therefore, we examined the differences between
the provision provided by adult hospices who care for children and those provided by pediatric hospices in order to
establish a deinition for adult hospice and pediatric hospice.
Criteria guidance for hospice provision to children and young adults
(pediatric hospice)
What hospices that provide care to children should offer to children and young adults at end-of-life is well
documented in the literature (Vossel, 2023; Chambers et al., 2022; Shaw, et al., 2022; Johnston et al., 2017; Hospice
Management Advisor, 2001). It is helpful to review the guidance laid out in the literature, so that a set of criteria
may be developed by which to discern the differences between adult hospice and pediatric hospice.
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This guidance includes:
Inclusion of pediatric wings at hospice inpatient centers, which may or may not be facilities licensed under larger
hospice organizations, and which are staffed 24 hours a day, 7 days a week, have suficient administrative staff,
and are accessible via transportation for children and their families
Provision of comforting, calm, relaxing, welcoming, age-appropriate physical environments including (but not
limited to) home-like rooms, appropriately sized furniture, furniture and spaces which allow family members to
stay overnight with their child, outdoor spaces, and play spaces
Undertaking of a risk adjustment of end-of-life care intensity measures because higher rates may be appropriate
in pediatrics
Provision of both respite and end-of-life care, and the range of stafing which is allowable under concurrent care
may be shared between the respite and hospice pediatric patients; it is especially important that the hospice has
a pediatric hospice medical director who is available twenty-four hours a day, seven days a week, and may make
daily rounds if needed
Provision of age-appropriate symptom assessment and treatment, support, clinical care, and services, i.e., a
dedicated team of pediatric providers, who are clinically educated and certiied to provide pediatric hospice care
including full-time equivalent registered nurses, licensed practical nurses, certiied nursing assistants, and child
life specialists
Provision of bereavement support and training for parents and siblings, creation of sibling assessment tools,
surveys to assess bereaved parent outcomes
Effective coordination with local children’s hospitals, pharmacists with pediatric prescribing experience, and
pediatric providers
Support of patients and operational costs (if possible) through a variety of reimbursement and funding, including
funding in addition to Medicare or Medicaid with consideration of between hospice programs/children’s hospitals
cost co-sharing partnerships
Differences between adult hospices and pediatric hospices
To establish a deinition for adult hospices and pediatric hospices, it is helpful to examine how researchers and
advocates (NHCPO, 2023; Shaw, et al., 2022; Johnston, et al., 2017; Hospice Management Advisor, 2001) have
investigated differences between the two types of hospices and what their indings have been.
They identiied:
That adult hospices who care for children often have limited beds available for pediatric patients
That the provider team assigned to pediatric patients had little training or experience in caring for children at
end-of-life, and though patients may receive care from a pediatric hospice medical director, the remainder of
their care came from the adult provider team
That children often are admitted to hospice before a diagnosis is made, have a wider range of diseases/illnesses,
die more slowly than adults, and have different admission criteria due to access to concurrent care, making adult
hospice systems and procedures of care often inadequate for pediatric patients’ circumstances
That the family dynamic in hospice is different from that of adult hospice patients, with decision-making roles
reversed between parent and child, and requiring the need for age-appropriate communication
Johnston and colleagues (2017) referenced the National Hospice and Palliative Care Organization’s (NHPCO) 2015
Adult Hospices Facts & Figures stating, “While 78% of adult hospices that care for children, most only care for 1 to
20 patients annually and only 37% have formal pediatrics training” (p. e876). Additionally, the authors’ stated that
children and young adults spend much more time in hospice compared to adults (103 days versus 66 days) (p.
3875). In their most recent report on the state of pediatric hospices, NHCPO’s needs assessment showed that less
than 5 pediatric patients per day were the daily average service size of children while the average duration of stay
was just under 147 days (NHCPO, 2023).
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Towards a Definition of Adult Hospices Caring for Children
In the absence of an oficial deinition of adult hospices caring for children, we recently published a paper deining adult
hospices in California. For the purposes of that study, we deined adult hospices as hospices which treat less than ive
children per year, (Davis et al., 2023). The questions received by the pediatric hospice and palliative community
prompted to us to re-examine the literature and provide a working deinition that may encourage pediatric hospice
providers, agencies, organizations, coalitions, and researchers to develop an oficial deinition of adult hospices.
Edwards et al. (2021) provided a deinition of adult hospices in the UK, which includes the groups who are covered
in adult hospice provision (adults, life-limiting conditions, end-of-life), the types of organizations that operate adult
hospices, the funding sources for those organizations, and the types of hospice services that are provided. This
deinition assisted us with our considerations. The criteria highlighted beginning on page one provide detailed
information on what should be considered a pediatric hospice. Therefore, it may be considered, to a certain degree,
that the lack of this same criteria aids us as well.
However, because some adult hospices do care for children in the US, the number of children adult hospices care for
must be a primary factor. Here the NHCPO (2015) provides a helpful maximum number, twenty, which may be
considered. There are additional ways adult hospices may support children, such as working with local children’s
hospitals and other health providers, organizations, and agencies to undertake the care of children, most often in
the home. This may affect the understanding of or agreement on what deines adult hospice regarding the number
of children served. With this in mind, and based on our clinical and research expertise, we have determined that the
deinition listed in our paper is the deinition which we believe is best.
Therefore, we propose the following deinition of adult hospices caring for children:
“A hospice provider who offers end-of-life support and services, either at home or in a facility primarily for adults
and who cares for less than 5 seriously-ill infants, children, and young adults per year.”
We believe that determining an accepted and agreed-upon deinition of adult hospice will beneit children and their
families, pediatric hospice and palliative care providers, administrators, researchers, and funders. For example, this
may help the pediatric hospice and palliative care community in gaining resources and funding for training of adult
hospice providers to care for children. Perhaps with more opportunities for this training, more adult hospices may
undertake caring for pediatric patients with serious illness.
We encourage a dialogue about this deinition within the community and advocate for its use.
References
Centers for Medicare & Medicaid Services (CMS). (2023, September 6). Hospices. Centers for Medicare & Medicaid
Services. https://www.cms.gov/medicare/health-safety-standards/certiication-compliance/hospices
Chambers, L., Hodgson, J., Major, N., Sieff, A., Whateley, R. (2022, February). Evaluation of the Together for Short
Lives ‘Improving Transition for Young People Programme’. Together for Short Lives. https://www.
togetherforshortlives.org.uk/app/uploads/2022/06/IT4YP-Evaluation-Report-FINAL.pdf
Davis, H.A., Weaver, M.S., Torkildson, C, Lindley, L.C. (2023) Understanding adult hospices caring for children in
California, 2018-2021. American Journal of Hospice and Palliative Medicine. E-pub. doi:10.117/10499091231204941
Edwards, Z., Chapman, E., Pini, S., & Bennett, M. I. (2021). Understanding the role of hospice pharmacists: A
qualitative study. International Journal of Clinical Pharmacy, 43, 1546-1554.
Hospice Care, 42 C.F.R. § 418 (1983). https://www.ecfr.gov/current/title-42/chapter-IV/subchapter-B/part-418
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Hospice Management Advisor. (2001). Don’t try to treat children with the adult hospice model. Hospice
Management Advisor. https://www.reliasmedia.com/articles/71813-don-8217-t-try-to-treat-children-with-the-
adult-hospice-model
Johnston, E. E., Rosenberg, A. R., & Kamal, A. H. (2017). Pediatric-speciic end-of-life care quality measures: An
unmet need of a vulnerable population. Journal of Oncology Practice, 13(10), e874-e880.
National Hospice and Palliative Care Organization (NHCPO). (2023, June). NHPCO Pediatric Facts and Figures.
National Hospice and Palliative Care Organization. https://www.nhpco.org/wp-content/uploads/NHPCO_
Pediatric_Facts_Figures_2023.pdf
Shaw, T., Berkel, C., Bernatavicius, W., & Berger, K. (2022). “If We Build It, Will They Come?” A cohort study of family
utilization of a pediatric-speciic hospice home.Journal of Palliative Medicine,25(9), 1361–1366. https://doi.
org/10.1089/jpm.2021.0513
Untitled California Assembly Bill No. 1847, §1250, 144, 95 (2014). http://www.leginfo.ca.gov/pub/13-14/bill/asm/
ab_1801-1850/ab_1847_bill_20140718_chaptered.pdf
Vossel, H. (2023, July 6). Hospices Must Leap Hurdles to Provide Pediatric Inpatient Care. Hospice News. https://
hospicenews.com/2023/07/06/hospices-must-leap-hurdles-to-provide-pediatric-inpatient-care/
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State of Pediatric Palliative Care, Oklahoma
Rachna May, MD
Section Chief, Pediatric Palliative Medicine
Associate Professor of Pediatrics
Oklahoma University Health Sciences Center
Oklahoma City, OK
and
Amanda Page, MD
Director, Pediatric Complex Care
Associate Professor of Pediatrics
Oklahoma University Health Sciences Center
Oklahoma City, OK
The state of Oklahoma has one pediatric palliative medicine program, founded in 2015. At present, our pediatric
palliative care team sees patients at Oklahoma Children’s Hospital OU Health in Oklahoma City, the state’s only
pediatric tertiary care hospital. Our team consists of 3 physicians, 1 APRN, and 1 LCSW/bereavement coordinator.
In addition to inpatient consults, the team also sees patients in the perinatal setting, runs a telehealth clinic, and
provides palliative care services to a local pediatric subacute care facility. Our team partners with a local hospice
agency to allow for patients to transition home at end of life should they desire. The hospital provides our team
with excellent support services from psychology, child life, and chaplaincy.
For the past year, our team has been traveling around the state to provide palliative care education to pediatric
health care providers, funded by a grant through Blue Cross/Blue Shield. To date, over 200 health care
professionals have attended. Additionally, we host fourth year medical students, residents, and palliative care
fellows on elective rotations with our team. In the last two years, we have sent 3 residents to palliative care
fellowship.
In 2024, we moved to a continuous care model for our chronic, complex patients with higher order respiratory
needs, such as tracheostomy and home ventilation. The complex care team, currently staffed by one physician and
one respiratory therapist, is housed in the Section of Palliative Medicine. The complex care team works closely with
patients and families to ensure a safe transition home. During this lengthy process, the team also focuses on
development and quality of life, empowering patients and families to go on walks outside and attend story time in
the sunlit hospital atrium. Patients transition back and forth between the palliative medicine and complex care
team, depending on their present needs.
Between the two services, the Section of Palliative Medicine sees approximately 400 patients annually. Work
remains to be done to capture all the children that would beneit from our services; we continue to strive to expand
our services to ill this gap.
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Statewide Pediatric Palliative Care Coalitions
Betsy Hawley, MA
Executive Director
Pediatric Palliative Care Coalition
Pittsburgh, PA
and
Christy Torkildson, PhD, RN, PHN, FPCN
Executive Director,
Children’s Hospice and Palliative Care Coalition of California
Phoenix, AZ
Christy.[email protected]
Statewide Pediatric Palliative Care Coalitions (SPPCCs) play a crucial role in ensuring that equitable palliative and
end-of-life care is available in all areas of every state across the country. While national initiatives help guide this
newly emerging ield, it is really on the state and local level that families needing pediatric hospice and palliative
care for their children see the impact. And it is on a state level where community-based pediatric hospices and
palliative care programs need support, resources, advocacy, and training.
SPPCCs are often a forum for emerging clinical leaders to learn how they can signiicantly impact health policy by
addressing the needs in their state for their patients, their families, and providers. They provide a platform for
networking that leads to resource and expertise sharing in organizations across a state. Coalitions ensure that the
reach of end-of-life care for children can extend across an entire state, not just in the urban areas covered by
tertiary medical centers. Collaborative efforts of SPPCCs have also creatively addressed needs that overlap
geographic boundaries.
Presently, we have 29 states with some form of a SPPCC, including two regional coalitions—the Northwest
Pediatric Palliative Care Coalition and the Gulf States PPC Consortium—which demonstrate remarkable
collaboration across multiple states. Some states, like Vermont and Massachusetts, have government-staffed
programs, while others are afiliated with established organizations, such as statewide hospice or serious illness
coalitions. Moreover, 16 states have identiied individuals as “PPC champions,” highlighting grassroots dedication to
advancing pediatric palliative care.
In recent years, we have observed a surge in collaborative efforts among SPPCCs. Bi-monthly networking calls have
become invaluable opportunities for information sharing, covering topics ranging from engagement with state
foster care systems to navigating billing mechanisms for concurrent care. Formal collaborations have also
emerged, such as PPCC of Pennsylvania serving as iscal sponsors for three other SPPCCs (CA, OH, and CT) and
exploring shared service models. The PPC Webinar Series, a SPPCC collaborative effort, continues to serve as a
strong educational platform. https://www.ppcwebinars.org/
Advocacy remains a focal point, with SPPCCs actively lobbying for improved reimbursement models and raising
awareness through advocacy days and partnerships with adult-focused groups. SPPCCs often focus on cultivating
and maintaining relationships with state legislators, policy makers, and government oficials so that they can react
quickly to opportunities for input and action. Through collaboration and partnership with key stakeholders, SPPCCs
have successfully spearheaded legislation and/or instituted federal waivers that authorize in-home PPC services in
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Florida, California, Colorado, New York, Vermont, Massachusetts, Illinois, and Michigan. The charge to implement
concurrent care for children under the Affordable Care Act has largely been led by SPPCCs. Other advocacy actions
prompted and/or supported by SPPCCs include a school mandate to honor POLST (MI), extending the prognosis
for hospice eligibility from 6 months to 1 year (MI), paid family leave for family caregivers (PA), an amendment of
the state hospice provisions to protect and preserve pediatric concurrent care (LA), and extending concurrent care
for young adults in hospice on their 21st birthday (CA).
Looking ahead, SPPCCs have a signiicant opportunity to amplify their impact through continued collaboration,
partnership, and prioritizing the pediatric voice in advocacy efforts. By broadening their stakeholder base and
sustaining collaborative initiatives, these coalitions are poised to drive substantial progress in pediatric palliative
care nationwide.
Find up to date contact information for SPPCC’s and PPC Champions.
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Application of the Logic Model to Build A
Statewide Pediatric Palliative Care Coalition
Eileen R. O’Shea, DNP, APRN, PCNS-BC, CHPPN
Director, Kanarek Center for Palliative Care Nursing Education
Professor of Nursing
Egan School of Nursing and Health Studies
Fairield University
Fairield, CT
eoshea@fairield.edu
Charlotte Delmonico, BSN
Fairield University
and
Lisa McCabe, MSN, APRN, PCNS-BC, CCRN, NPD-BC, NC-BC, CHPPN
Executive Board Member of the PPCC-CT
Logic Models have long been beneicial for facilitating effective program planning, implementation, and evaluation
(Kellogg Foundation, 2004). Typically, this tool provides a convenient way of mapping a program using two main
components—the process side and the outcome side. The process segment outlines the program’s inputs (resources),
activities, and outputs (direct products), while the outcome segment delineates the anticipated impacts of the
program, including short-term, intermediate, and long-term effects (CDC, 2017). Logic models may also incorporate
underlying assumptions and contextual factors inluencing the program or intervention (CDC, 2017).
When considering the development of a statewide pediatric palliative care coalition, a small group of passionate
pediatric healthcare providers and leaders came together to brainstorm what it would take to develop a sustainable
program. In this case, applying the logic model was a productive mechanism to strategize and initiate a map, linking
activities and processes to future outcomes, program impact, and evaluation. The following describes one state’s
journey in developing a pediatric palliative care coalition.
Case Study
The American hospice movement was founded in 1974 in Branford, Connecticut (CT), with the establishment of
Connecticut Hospice (NHPCO, 2024). Despite the signiicant strides made by adult hospice programs since the
state’s pioneering role in their development, pediatric hospice and palliative care have lagged behind.
Nearly 7,500 CT children live with complex medical conditions that limit their life expectancies and incur a
substantial annual inancial burden for families of $82,000 per child (PedEOL, 2023). Additionally, CT has two
nationally ranked children’s hospitals, Yale New Haven Children’s Hospital (YNHCH) and Connecticut Children’s
Medical Center (CCMC), equipped with pediatric palliative care programs. However, despite these acute care
resources, critical gaps exist for children and their families when they transition care back to their homes. The
sparse availability of community-based pediatric palliative care programs leaves families unequipped to navigate
the complexities of caregiving. This lack of care continuity further contributes to their relentless emotional,
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inancial, and physical strains. It is imperative to address these gaps so that children and their families receive
high-quality holistic care not limited by prognoses or care settings.
Connecticut’s Work Plan
Figure 1: Connecticut’s Pediatric Palliative Care Map
Process: Inputs, Activities, and Outputs
A logic model was used to establish a pediatric palliative care coalition in CT and create a work plan informed by a
diverse group of stakeholders familiar with historical challenges and gaps in current resources in the state. The
stakeholders included:
Pediatric palliative care physicians
Advanced practice nurses
Registered nurses and one student nurse
Hospice leaders
Chaplain
Bereaved parents
Virtual monthly meetings were held over a period of several months to accommodate participants from various
locations. The discussions were primarily focused on identifying the present challenges (situation) facing community-
based pediatric palliative care in CT. Historically, this ield has been under-recognized and lacking adequate support,
similar to other states. The stakeholders from CT have articulated the issues as multifaceted, encompassing limited
public awareness, healthcare provider unfamiliarity, and the overall scarcity of resources, including inancial support,
for families and caregivers. The lack of public awareness regarding the existence of pediatric palliative patients has
led to misconceptions and hindered the development of essential support structures.
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Additionally, the CT stakeholders verbalized that while healthcare providers may be adept in adult palliative care,
they often lack the specialized knowledge required to address the unique concerns of the pediatric patient
population. Stakeholders concluded that there is a profound disconnect between the needs of these vulnerable
patients and the resources available to them. Thus, these discussions led to the irst three bullets of information in
the CT Logic Model under “Situation” (See Figure 1).
Utilizing the systematic lowchart provided by a Logic Model template, stakeholders began to plan for the
necessary inputs (resources) that would need to be invested to form a coalition. The highest priorities were to
obtain funding and establish partnerships to learn about best practices, strategies, and activities to achieve
results. Additionally, assumptions were made, such as the existence of an interested and supportive community
that would be willing to volunteer their time and expertise.
Outputs, the tangible results of activities— or “what we get from our actions” (CDC, 2017)— documented our
Coalition’s early progress. At the end of six months, our group had developed partnerships within our state,
including the CT Nurses Association and the CT Chapter of Hospice and Palliative Nurses Association, and had
received an invitation to meet with the Palliative Care Advisory Council within the CT Department of Public Health
to report on our early achievements. Furthermore, this Coalition sought collaboration and mentorship with the
Pediatric Palliative Care Coalition from Pennsylvania (PPCC-PA) from its inception. PPCC-PA is known as a
national leader of palliative care state coalitions. Learning best practices and signiicant infrastructure support
have rapidly launched this state coalition into operation of our work plan, with an eye on our short-, intermediate-,
and long-term outcomes.
Outcomes: Short, Medium, and Long-term
From the foundation of deining who we are (mission) and what we hope to accomplish (vision), we move into the
next phase of actualizing our goals and outcomes. Large group work is transitioning to committees that can focus
on our short-term outcomes of increasing provider knowledge (i.e., education), public awareness/networking, and
advocacy (i.e., medium and long-term outcomes [See Figure 1]).
Through our partnership with the PA coalition and a generous grant from the Kanarek Family Foundation, we have
offered monthly educational webinars at no cost to participants. The webinars provide an opportunity to educate
clinicians and raise awareness about pediatric palliative care. We are working to expand our invitation list to a
broader community through collaborations with children’s hospitals, home care and hospice agencies, hospice and
palliative care professional organizations, pediatric practices, parent groups, and academic settings. It is a slow
process of making contacts and establishing relationships, often one at a time, as we bring awareness of our
Coalition and the needs of children in our state to the greater community.
Concerning advocacy efforts, we recently provided written testimony for a raised bill requiring the Department of
Public Health to create a plan to establish a hospice program for children in CT. We engaged our colleagues at the CT
Nurses Association to guide us and look forward to ongoing collaborations. We are now tracking bills of interest to
our Coalition within our state government. Once our advocacy committee is fully established, we will engage other
stakeholders, such as the state Medicaid program, in mutual education and understanding of the needs of children
and the payment system as they currently are. These necessary action steps (activities) align with the medium
outcome to develop and publish pediatric palliative and hospice care state plans with Coalition involvement and both
long-term goals (outcomes). Thus, the CT stakeholders can see how efforts are strategic in achieving our goals.
The creation of a website for our Coalition provides an excellent opportunity to increase public awareness of the
work of our organization, as well as a chance to introduce the community to currently available resources. From
this outreach, we aim to build enhanced relationships with community stakeholders and create a network for CT
families to share and seek assistance. Further, community support will be essential to guide our Coalition in
prioritizing our efforts and fundraising to sustain the work of the Coalition.
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The key to our success will be maintaining an engaged and active community of individuals from various backgrounds,
disciplines, and perspectives to inform and enhance our efforts. Through in-person retreats and networking activities,
celebrations of success, and other interactive events, we hope to maintain interpersonal connections within the group
to inspire, motivate, and retain our membership and collaborative partnerships well into the future.
References
Centers for Disease Control and Prevention, Division for Heart Disease and Stroke Prevention. (2017). Evaluation
guide: Developing and using a logic model. https://www.cdc.gov/dhdsp/evaluation_resources/guides/logic_model.
htm#print
National Hospice and Palliative Care Organization. (2024). History of hospice. https://www.nhpco.org/hospice-
care-overview/history-of-hospice/
PedEOL Care Research Group. (2023, March 10). Fact sheet: Connecticut: Sick kids [Infographic].
W.K. Kellogg Foundation. (2004). Logic model development guide. https://www.naccho.org/uploads/downloadable-
resources/Programs/Public-Health-Infrastructure/KelloggLogicModelGuide_161122_162808.pdf
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ELNEC Palliative Care Education for Nurses
Vanessa Battista DNP, MBA, CPNP-PC, CHPPN, FAAN, FPCN
Senior Director of Nursing, Palliative Care
Fellowship Director, Palliative Care Adult Nurse Practitioner Fellowship
Psychosocial Oncology and Palliative Care
Dana Farber Cancer Institute
Boston, MA
and
Betty Ferrell, PhD, CHPN, FAAN, FPCN
Professor & Director
Division of Nursing Research and Education
City of Hope
Duarte, CA
BFerr[email protected]g
Introduction
The recognition and acceptance of palliative care as a distinct specialty over the past few decades has aided both
the expansion of services offered to individuals living with serious illness and their families, and the number of
educational resources available to clinicians. Despite this growth, a demand for services still exists throughout the
world, and seriously ill children remain the population most underserved in hospice and palliative care (Cormack et
al., 2023). Also, the increase in the number of children living with serious illness globally, along with the increased
complexity of their illness, suggests that pediatric palliative care services will continue to increase over time. This
demand for increased palliative care services necessitates that all clinicians caring for seriously-ill children and their
families be adequately prepared to deliver high quality pediatric palliative care and that palliative care education
should be a part of clinical education across all specialties (Cormack et al., 2023). This is especially true for nurses,
who are an integral part of the care that seriously-ill children and their families receive and spend more time with
patients than any other health care professional (Battista & Sciacca, 2023).
In response to the need for nurses to have adequate training in providing palliative and hospice care, in 2000, the
End-of-Life Nursing Education Consortium (ELNEC) curriculum (www.aacnnursing.org/elnec) was created at City
of Hope (Duarte, CA) in collaboration with the American Association of Colleges of Nursing (AACN) (Washington,
DC) as a global education initiative to improve palliative care for nurses and other healthcare professionals
(Cormack et al., 2023). The irst ELNEC course was launched in 2001 and the project continues to provide training
in palliative care for nursing students and practicing nurses, including undergraduate and graduate nursing faculty,
continuing education providers, staff development educators, specialty nurses in pediatrics, oncology, critical care,
geriatrics, and advanced practice nurses, as well as other clinicians (AACN, 2004). Since 2001, the program has
grown tremendously and provided 301 courses in all 50 states, 114 countries, and education for 47,404 individuals as
Trainers who in turn have educated over 1,528,471 individuals.
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ELNEC Pediatric Curriculum and Dissemination
The ELNEC curriculum (www.aacnnursing.org/elnec) began with a Core curriculum intended for nurses caring for
adult patients and also included pediatric content. From the initial launch it was apparent that a Pediatric speciic
curriculum was needed and in 2003 ELNEC Pediatrics was launched. The curriculum follows the National
Consensus Project (NCP)/Clinical Practice guidelines for palliative care with modules including Introduction to
Pediatric Palliative Care, Pain Management, Symptom Management, Grief/Loss/Bereavement, Cultural Aspects of
Care, Communication, Ethics and Care at the End of Life. The ELNEC Pediatric curriculum is updated annually and
in recent years a module was added on Neonatal Care and Perinatal Care. This relects the growing attention to
palliative care in these pediatric settings. These modules address the unique aspects of Neonatal and Perinatal
care including anticipatory grief, death rituals, as well as support for bereaved parents.
ELNEC Pediatrics is also offered in an online format through Relias (www.reliasacademy.com). The online format is
valuable for education in settings with limited ability for travel to in person conferences and is often used as a part
of initial staff training. The ELNEC team hosts an in-person ELNEC-Pediatric “Train the Trainer” course each year
and the Hospice and Palliative Nursing Association (HPNA) hosts an online ELNEC Pediatric course each year. The
need for Pediatric palliative care training continues to grow due to many factors including the growth of Pediatric
hospice and palliative care programs and the expansion of palliative care into more pediatric populations. As the
beneits of palliative care to children, families and health systems continue to be well documented it will be
important to continue to expand this education.
ELNEC Advanced Practice Registered Nursing (APRN)
In addition to the simultaneous need for increased palliative care services for seriously-ill individuals and education
for nurses came the need for more specialized training in palliative care speciically for advanced practice
registered nurses (APRNs). Numerous palliative care teams throughout the county are led by APRNs, which includes
nurse practitioners (NP’s), clinical nurse specialists (CNS), midwives, and certiied registered nurse anesthetists
(CRNA’s) (www.aacnnursing.org/elnec) who demonstrate leadership not only in the clinical arena but also as
leaders in education, administration, and research (Battista and Sciacca, 2023). There are several factors that
distinguish the role of the APRN from that of the registered nurse (RN), including educational preparation, scope of
practice, ability to independently manage patients and in many instances prescribe medication, and, as such,
APRNs working in the palliative and hospice setting also require distinct specialized training.
In 2013, more than a decade after the creation of the irst ELNEC course, the irst ELNEC APRN course, supported by
Cambia Health Foundation, was launched in Anaheim, CA, with 115 ARPNs, representing 26 states, in attendance
(www.aacnnursing.org/elnec). The APRN curriculum includes both an adult and pediatric track and course participants
receive advanced education in topics as such as pain and symptom assessment and management and communication
skills. Modules include Introduction to Palliative Nursing, Advanced Pain Management, Communication, Final Hours,
Symptoms, Education/Teaching Strategies, as well as special topics such as Quality Improvement, Leadership, Well-
Being, Financial Management, and Education (www.aacnnursing.org/elnec). This curriculum is also updated annually
and relects the current needs of the expanding role of the palliative and hospice care APRN. Similar to the educational
needs of the palliative and hospice RN, the need for pediatric speciic APRN education continues to grow as the need
for pediatric palliative care services increases and becomes more widespread.
Similar to ELNEC Pediatrics, the ELNEC Graduate Curriculum for master’s and Doctor of Nursing Practice (DNP)
students also became available in an online format through Relias (www.reliasacademy.com) in 2019. This
curriculum was speciically designed to meet the American Academy of Colleges of Nursing (AACN) G-CARES
competencies for advanced practice primary palliative care and similar to the ELNEC Undergraduate/New
Graduate online curriculum, contains six one-hour interactive modules with available content applicable to APRNs
across all population areas (www.reliasacademy.com). The modules include cases, videos including ARPNs
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demonstrating primary palliative care skills such as leading goals of care or advance care planning conversations,
pain and symptom management, and leadership.
International ELNEC – Pediatrics
The need for Pediatric palliative care is an international priority with low resource countries being of special need.
The wide range of childhood illnesses causing symptoms and quality of life concerns, high rates of mortality, and
the incidence of serious pediatric illnesses such as HIV/AIDs, malaria, and infectious diseases create a demand for
this care. The ELNEC curriculum has been used in 114 countries and most of these countries have included the
Pediatric curriculum due to these needs in low resource countries. International clinicians have used the ELNEC
Pediatric curriculum and adapted it to it the drug availability in their countries and to relect cultural
considerations and the available workforce. Many international Pediatric courses have also included a large
involvement of physicians who are also eager to advance pediatric care in these countries with such high needs.
Summary
The need for palliative care services for children living with serious illness and their families continues to increase
and necessitates increased training and resources for nurses and APRN’s working in palliative and hospice care. The
need for Pediatric Palliative Care training will continue and is critical to insure a workforce for quality care.
Pediatric Clinicians across all areas beneit from palliative care knowledge to integrate in their care and the ELNEC
curriculum has served to meet this educational need for nurses and other healthcare professionals for over 23
years. Hospice and Palliative Care providers, as specialists in their ield, will continue to develop this ield and
extend it to new pediatric populations and the expanding ELNEC curriculum will continue to enhance this growth
by serving to meet the needs of nurses and APRN’s providing high quality pediatric palliative care.
References
1. Cormack, C., Battista, V., Haskamp, A., & Thaxton, C. (2023). The Expansion of Pediatric Palliative Care
Education: Where are We Now? National Hospice and Palliative Care Organization (NHPCO) E-journal, 71
2. American Association of Colleges of Nursing (2024). ELNEC Curricula. Pediatric. Accessed April 7, 2024, from
www.aacnnursing.org/ELNEC/About/ELNEC-Curricula.
3. Battista, V. & Sciacca, K. (2023). Professional Standards and the Role of the Advanced Practice Registered
Nurse in Hospice and Palliative Care. Journal of Hospice & Palliative Nursing, 25(5), 249-254. https://doi.org/
10.1097/NJH
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The Evolution of Child Life in Hospice &
Palliative Care
Jennifer Mangers-Deans, MHA, MS, CCLS
Certiied Child Life Specialist
Co-founder, Child Life Hospice & Palliative Network (CLHPN)
Huntley, IL
and
Alyssa Friedberg, M.Ed., CCLS, GCCA-C
Certiied Child Life Specialist
Co-Founder, Child Life Hospice & Palliative Network (CLHPN)
Chicago Child Life Consulting
Chicago, IL
alyssafriedber[email protected]
Certiied Child Life Specialists (CCLS) serve as pillars of strength, providing invaluable emotional support and
guidance to young patients and their families during times of uncertainty and distress. They offer a holistic
approach to care, recognizing the innate resilience of children and the importance of addressing their emotional
and developmental needs. Their goal is to minimize the stress and anxiety that children and families may
experience. Historically, they have worked primarily in hospitals. However, the profession has evolved to meet the
growing demand in various healthcare settings.
In 2011, a hospice organization in Illinois hired a CCLS to create the irst child life program for pediatric hospice and
palliative care in Illinois. The goal was to provide emotional support, education, therapeutic play, sibling support,
and legacy building focused on children diagnosed with a terminal illness and their families. Identifying other
professionals engaged in this work was challenging. Many were working in one-person programs. In 2013, an online
group was established to foster communication, collaboration, and camaraderie among CCLS in hospice &
palliative care. The aim was to diminish the sense of isolation experienced by many individuals and foster a
community where resources, ideas, and care-related needscould be shared and discussed.
By 2022, that group had grown to over 200 members working with children at the end of life. Through this group,
many areas of interest have been identiied for research. A needs assessment was conducted of the community,
with results that provided great insight into the ield’s current landscape. It showed that, as the need for child life
services becomes more widely identiied, CCLS have been inding new ways to deliver services to children and
families. Many CCLS have branched out from the hospital setting and are now providing services to community-
based organizations in full-time, part-time, consulting, and private practice capacities. This shift represents an
exciting new trend in the ield, that will ultimately beneit children and families, along with the organizations that
choose to partner with CCLS.
The future for CCLS in the ield of hospice and palliative care will beneit from ongoing research to ensurethat the
work continues to be evidenced-based and is rooted in the needs of children and families. CCLS need research and
data to support their advocacy around implementing new programs and obtaining additional positions, all with the
goal of being able to provide support to as many children as possible. It was found in the needs assessment that
many CCLS in hospice and palliative care are concerned with burnout and stafing, so having data to support the
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need for additional CCLS is key. There is also a need for research around DEI in the ield, as the most recent needs
assessment identiied a widely homogenous ield. Future research in this area will help push the profession of child
life forward, making services more accessible to families who need them most.
It is an exciting time of change and progress in the ield of child life, especially within hospice and palliative care.
There’s ample opportunity for growth, which will continue to beneit both organizations and families.
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Psychologists in Pediatric Palliative Care: The
Future is Bright
Amanda L Thompson, PhD
Chief, Pediatric Psychology
Director, Pediatric Programs
Life with Cancer
Inova Schar Cancer Institute
Fairfax, VA
Amanda.[email protected]
Pediatric palliative care (PPC) is an interdisciplinary profession by deinition, and a culture of collaboration is
foundational to how we care for patients and families. For some time, social workers and chaplains have been
recognized (rightfully so) as core and essential members of the PPC team;
1
psychologists, however, have not yet
been consistently integrated into PPC practices.
2,3
Further, pediatric psychologists, despite their extensive training
and expertise in the care of young patients with serious medical conditions, have been underrepresented in PPC
clinical models, national guidelines, and training programs.
1,2
A group of passionate and dedicated providers have
been working to change this narrative, to expand understanding of psychology’s role in PPC and how we contribute
to research, clinical care, education/training, advocacy, and more.
First things irst: “pediatric psychology,” a subspecialty of both child clinical psychology and health psychology, is
the interdisciplinary ield of research and practice that addresses physical, behavioral, and emotional development
as it interacts with health and illness in children, adolescents, and families. Pediatric psychologists have expertise in
child development, family system approaches, behavioral interventions, and the interaction between psychological
factors and physical health in children and families. This training and expertise allows us to distinguish between
normative adaptation to illness and clinical symptoms that may beneit from intervention. We do so through
evidence-based biopsychosocial assessment of mental and behavioral health conditions, evaluating the
developmental, physical, emotional, social, environmental, cultural, spiritual, and family systems factors
contributing to patient presentation.
4
Pediatric psychologists are adept at selecting and tailoring instruments that
are suitable for busy medical settings, considering cost effectiveness, time eficiency, and ease of use,
5
as well as
mitigating confounding variables inherent to disease and medical treatment processes. Interventions delivered by
pediatric psychologists are evidence-based and focused on alleviating emotional and physical suffering. Notably,
pediatric psychologists excel in addressing some of the most prevalent and distressing symptoms reported by
children with serious illness including pain,
6,7
sleep/fatigue,
8
and anxiety/fear.
9
Despite the training and skills that position pediatric psychologists as integral to the care of youth with serious
medical illness, less than one-quarter of PPC programs in the United States have psychology representation within
the interdisciplinary team (IDT), with psychology only formally integrated into 17% of those programs.
10
Instead,
over three quarters of psychologists engaged in PPC work are members of medical subspecialty teams with patient
populations that frequently utilize PPC services (e.g., hematology/oncology, cardiology, NICU; 10). Identiied
barriers to psychology integration into PPC include lack of funding, overlapping roles with other psychosocial
providers, absence of institutional/departmental support, and limited understanding of and/or recognition about
the services psychologists can provide to enhance the care provided by interdisciplinary PPC teams.
10
Therefore, in order to deine the role and unique skillset of psychologists practicing in PPC, support psychology’s
systematic inclusion as part of PPC teams, and standardize best practices among the PPC psychology workforce, a
working group of nine pediatric psychologists developed core competencies for psychologists practicing in PPC.
11
These
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competencies, published in 2023, underwent extensive interdisciplinary review by a diverse group of PPC professionals
and parent advocates and covered cluster areas of Science, Application, Education, Interpersonal, Professionalism, and
Systems. Each cluster includes essential competencies (i.e., knowledge, skills, attitudes, roles) and related behavioral
anchors (i.e., examples of concrete application), thereby highlighting psychology’s unique contributions to and value in
PPC. A full table of the competencies are available in the supplemental materials of the original publication,
11
but a small,
amended excerpt from the “Application” cluster is provided below by way of example:
Psychology Competencies for Pediatric Palliative Care-Application Cluster (excerpt, amended)
Domain Essential Competency Behavioral Anchors
Assessment Assesses suffering (physical
and existential) caused by
common symptoms
associated with serious
illness, including depression,
anxiety, pain, nausea/
vomiting, constipation,
fatigue, dyspnea, delirium,
and agitation
Integrates behavioral observations, caregiver report, patient
report, and known medical factors to conceptualize patients’
symptom presentations
Critically evaluates appropriateness of existing psychosocial
instruments within the context of confounding factors (e.g.,
physical symptoms directly resulting from medical diagnosis,
biological aspects of the dying process)
Assesses for delirium in seriously ill patients, accurately
differentiating symptoms that mirror emotional/adjustment-
related presentations (e.g., agitation, spontaneous tearfulness)
Assesses the biopsychosocial,
developmental,
environmental, spiritual, and
family systems factors that
can impact children with
serious illnesses
Identiies how culture, self-identiication of racial group and
gender, sexual orientation, religion and spirituality, context (e.g.,
social drivers of health, systemic racism/inequitable systems),
and the intersectionality of these constructs may inluence
patient and family communication and decision-making in the
context of a serious illness
Contextualizes patients’ presentations within knowledge of
known cognitive and developmental differences observed in
certain PPC populations
Assesses patients’ understanding of their medical diagnosis,
treatment, and prognosis relative to their developmental level
Evaluates gross cognitive capabilities to screen for impairment
and refers for comprehensive neuropsychological/
developmental testing if indicated
Intervention Implements evidence- based
biopsychosocial interventions
focused on improving quality
of life and supporting
patients and families’ coping
throughout the youth’s illness
trajectory
Teaches non-pharmacological strategies for symptom
management (e.g., nausea, pain, fatigue, dyspnea) and relief
including diaphragmatic breathing, hypnosis, imagery, and
biofeedback-assisted relaxation training
Utilizes evidence-based therapy approaches with patients and
caregivers, such as cognitive-behavioral therapy, acceptance-
commitment therapy, motivational interviewing, meaning-
making, and dignity therapy to address anxiety, depression,
medical traumatic stress, existential distress, etc.
In making competencies explicit, we join our colleagues in other disciplines who have deined their roles within PPC
and hope to promote better understanding among other healthcare professionals and within healthcare systems
of the contributions of PPC psychologists and how our unique skillsets in empirically based assessment,
intervention, and research add value to the IDT.
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Building off the momentum from the competency development, a subset of the Competencies Working Group
authors published a companion paper in the Journal of Pain and Symptom Management earlier this year to make the
case to our medical colleagues for psychologists as critical members of PPC teams.
12
We highlighted evidence that:
1. Children with serious medical illnesses are at increased risk for the development of mental and physical health
symptoms, including depression, anxiety, pain, nausea/emesis, fatigue, delirium, and dyspnea,
13,14
and that
psychosocial distress is associated with decreased quality of life;
15
2. Symptoms respond to psychological treatments and intervention. That is, psychology involvement for youth
with serious medical illness reduces the distress associated with depression, anxiety, and other mental health
concerns; decreases suffering related to physical symptoms; prevents or mitigates the exacerbation of illness;
and promotes adherence to treatment regimens;
16
and
3. Psychology involvement saves money by decreasing hospital lengths of stay and overall hospital costs.
17
We also discuss pediatric psychologists’ expertise in research design and implementation and contributions to
team education, dynamics, and well-being.
Slowly but surely, we are starting to see a shift toward increasing recognition of mental healthcare as a core
feature within palliative care overall and pediatric palliative care speciically, and with that shift, a need for
psychology support on IDT teams. In the past year alone, we have seen an increase in PPC programs hiring
psychologists onto their teams. We hope to see this trend continue, and encourage institutional leaders (i.e., chiefs,
program directors) to utilize the PPC psychology competencies to create nuanced and thorough job descriptions
and to assess potential candidates’ knowledge, skills, and attitudes. We have also worked to have an increased
presence of psychology at national conferences and on national committees, work groups, and task forces so that
we have a voice and literal “seat at the table” alongside our medical and psychosocial colleagues who are deining
the future of pediatric palliative care, research, and education. For example, pediatric psychologists are now
represented on the Pediatrics Council of the American Academy of Hospice and Palliative Medicine and the
Pediatrics Division of the National Coalition for Hospice and Palliative Care, are active members of the Pediatric
Palliative Care Research Network and the Network of Pediatric Palliative Care Educators, and are Sojourns Scholar
Leadership Program Award recipients—this was not the case a mere 5 years ago.
As the tides are beginning to turn, we are excited about opportunities for psychology’s role in PPC moving forward.
We still have work to do, but we are committed to increased integration of psychologists as members of the IDT
and view this as an important direction for the future of the ield. Together, we have the opportunity to broaden
and deepen the scope of services provided by PPC teams and to improve the experience of and outcomes for
children with serious medical illnesses and their families.
If you are considering integrating a psychologist into your IDT, we provide you with some initial points of
consideration and guidance:
12
Model of Integration: There are several options to consider when looking to incorporate psychology services within
PPC. In a consultative model, psychologists working in medical subspecialties (e.g., oncology, cardiology, NICU) can
offer external expertise to the palliative care team through ad-hoc clinical consultations. An embedded model, in
contrast, involves psychologists being formally integrated within the palliative care service as a core member of
the team. Each model has different implications for interdisciplinary collaboration, hospital resource allocation,
acceptance and timing of services, and more. The consultative model, although widely adopted in pediatric
hospitals, may create barriers to collaboration among consulting services (e.g., potential communication gaps,
limited integration contributing to more fragmented patient care, limited interdisciplinary understanding).
18
Needs Assessment and Data Collection: Data on speciic psychological support needs within hospital
departments/units along with a cost-effectiveness analysis should be compiled. Consider including patient
volumes, payor mixes, psychology per-patient reimbursement potential, and unique value added of psychology in
relation to other possible service options.
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Business Plan: Developing a detailed business plan outlining roles, responsibilities, and outcomes is crucial, as is
addressing concerns about stafing and budget constraints. Interdisciplinary collaboration beneits (supported
by patient testimonials) can demonstrate the holistic impact of psychologists’ inclusion. Addressing concerns
about long-term sustainability ensures a well-rounded proposal.
We welcome ongoing partnerships with our interdisciplinary team members in the ield and have extraordinary
gratitude for those who have and continue to champion inclusion of psychology services for children with serious
illness and their families. Our future is stronger together!
References
1. National Consensus Project for Quality Palliative Care. Clinical practice guidelines for quality palliative care, 4th
edition. National Coalition for Hospice and Palliative Care; Richmond, VA. https://www.nationalcoalitionhpc.org/ncp.
2. Rogers MM, Friebert S, Williams CS, Humphrey L, Thienprayoon R, Klick JC. Pediatric palliative care programs
in US hospitals. Pediatrics. 2021;148(1). doi: 10.1542/peds.2020-021634.
3. Feudtner C, Womer J, Augustin R, Remke S, Wolfe J, Friebert S, Weissman D. Pediatric palliative care programs in
children’s hospitals: A cross-sectional national survey. Pediatrics. 2013;132(6):1063-70. doi: 10.1542/peds.2013-1286.
4. Palermo TM, Janicke DM, McQuaid EL, Mullins LL, Robins PM, Wu YP. Recommendations for training in
pediatric psychology: Deining core competencies across training levels. J Pediatr Psychol. 2014;39(9):965–984.
doi: 10.1093/jpepsy/jsu015
5. Roberts MC, McNeal RE. Historical and conceptual foundations of pediatric psychology. Handbook of pediatric
psychology. 1995; The Guilford Press.
6. Birnie KA, Noel M, Parker JA, et al. Systematic review and meta-analysis of distraction and hypnosis for
needle-related pain and distress in children and adolescents. J Pediatr Psychol. 2014;39:783-808.
7. Fisher E, Heathcote L, Palermo TM, de C Williams AC, Lau J, Eccleston C. Systematic review and meta-analysis
of psychological therapies for children with chronic pain. J Pediatr Psychol. 2014;39:763-782.
8. Zhou ES, Vrooman L, Manley PE, Crabtree VM, Recklitis CJ. Adapted delivery of cognitive-behavioral treatment
for insomnia in adolescent and young adult cancer Survivors: A Pilot Study. Behav Sleep Med. 2017;15:288–301
9. Silverman WK, Hinshaw SP. The second special issue on evidence-based psychosocial treatments for children
and adolescents: A 10-year update. J Clin Child Adolesc Psychol. 2008;37:1-7.
10. Hildenbrand, A. K., Amaro, C. M., Gramszlo, C., Alderfer, M. A., Levy, C., Ragsdale, L., Wohlheiter, K., & Marsac,
M. L. (2021). Psychologists in pediatric palliative care: Clinical care models within the United States. Clinical
Practice in Pediatric Psychology, 9(3), 229–241. https://doi.org/10.1037/cpp0000402
11. Thompson AL, Schaefer MR, McCarthy SR, Hildenbrand AK, Cousino MK, Marsac ML, et al. Competencies for
psychology practice in pediatric palliative care. J Pediatr Psychol. 2023. doi:10.1093/jpepsy/jsad007.
12. Thompson, A.L., Kentor, R.A., Schaefer, M.R., McCarthy, S.R., Psychologists as pivotal members of the pediatric
palliative care team.Journal of Pain and Symptom Management. 2024. doi.org/10.1016/j.
jpainsymman.2024.02.006
13. Berry L, Cardoni M, Soliman A, Abdelmonem M, Mohamed A. High prevalence of physical and psychological
distress among children with cancer: A call for early integration of pediatric palliative care. Pediatrics. 2018;142.
14. Nibras S, Kentor R, Masood Y, Price K, Schneider NM, Tenenbaum RB, Calarge C. Psychological and psychiatric
comorbidities in youth with serious physical illness. Children. 2022;9:1051.
15. Rosenberg AR, et al. Quality of life in children with advanced cancer: A report from the PediQUEST study. J Pain
Symptom Manag. 2016;52(2):243-253.
16. Roberts MC, Steele RG. Handbook of Pediatric Psychology (5th ed.). 2018. The Guilford Press.
17. McGrady ME, Joffe NE, Pai ALH. Earlier pediatric psychology consultation predicts lower stem cell
transplantation hospital costs. J Pediatr Psychol. 2017;43:434–442.
18. Moynihan KM, Snaman JM, Kaye EC, Morrison WE, DeWitt AG, Sacks LD, Thompson JL, Hwang JM, Bailey V,
Lafond DA, Wolfe J, Blume ED. Integration of pediatric palliative care into cardiac intensive care: A champion-
based model. Pediatrics. 2019;144(2):e20190160.
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Spiritual Care Education to Support Pediatric
Palliative Care
Judy Zeringue, MAPL, BSN, RN, CPLC, CHPPN
Urology Nurse Navigator
Palliative Care Champion
Children’s Hospital
New Orleans, LA
Judy.Zeringue@LCMCHealth.org
Spiritual care is an important aspect of total patient/family/caregiver care. “It is as important for health care
professionals to talk with patients (family/caregiver) as it is to address the physical aspects of care.”
1
It is
important to consider the difference between Spirituality and Religion. Spirituality is a much broader concept. It
may be thought of as a person’s search for meaning in their lives and purpose. These people may ind strength and
hope in relationships or nature, to name just a few. Religion may or may not be a component based on the
individuals’ beliefs and that which brings meaning or purpose to their life.
Spiritual care is about being honest, sincere, and authentic, thereby permitting our compassionate humanity to
impact another in need. “Religion is one way, one very important and signiicant way, that we express our
spirituality.”
2
Spirituality may be expressed in different ways. Perhaps the beauty of nature, the joy of hearing a
child’s laughter, the gentle touch of shaking hands or offering a hug, praying or sitting attentively in silence with
one experiencing grief. All are unique means of experiencing our unique spirituality. “Beyond religion, with all that it
offers some people, there is the broad sense of spirituality or faith that is an outgrowth of one’s beliefs about life.”
3
There are many religions in the world. Each brings their unique beliefs, rituals, and practices to consider with
impending death and after death. These beliefs may impact health care decisions as well as considerations at time of
death and bereavement practices. An understanding and openness to learn with cultural humility is what is important
to support a patient/family/caregivers’ beliefs, meeting them where they are and supporting them throughout their
journey. If they desire a speciic ritual or sacrament, we may offer to facilitate contact with their speciic faith leader
through our Chaplain. Respect this sacred time with compassionate presence and dignity for those served.
The NCP (National Consensus Project) deines spirituality as a “Dynamic and intrinsic aspect of humanity through
which persons seek ultimate meaning, purpose, transcendence, and experience relationship to self, family, others,
community, society, nature, and the signiicant or sacred.”
4
As clinicians, an important skill set to develop is refraining from judgement and being open to those entrusted to
your care. Empathetic listening and compassion can be a source of hope and strength in even the most dificult
moments. Leaning in with sincerity and presence is often a vital link in rapport building and trust. Providing
empathetic listening, being attentive and present to patients /family/ caregivers demonstrates compassion. If
desired by a family, share in prayer to meet the speciic needs to provide comfort and hope. Be attentive and
respect the beliefs of those you serve with great compassion.
Spiritual care should be an important assessment performed on all patients, on admission and throughout the
illness journey. “Although some may experience spiritual distress, others may have a spiritual transformation or
experience spiritual growth and health.”
5
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An individual’s faith is based on their unique inner strengths and may be as distinct in meaning and value as every
individual who holds this concept within. “Spiritual care concerns the total person and recognizes the
interdependence and connectedness of mind, body, and spirit. It provides a dynamic resource for healing and
wholeness by paying attention and responding to the unique needs, goals, and resources of each care recipient.”
6
Research has demonstrated how nurses trained in spiritual care can help identify a patient/ family/caregiver’s need
for spiritual support. They can assist in incorporating spiritual support into the care plan and collaborating with
spiritual care providers.
7
Spiritual support is essential in providing holistic care and serving those entrusted to our
care with respect and dignity.
Some educational opportunities are provided below for professional growth in spiritual care.
ISPEC- Interprofessional Spiritual Care Education Curriculum (ISPEC- Peds) https://smhs.gwu.edu/spirituality-
health/program/transforming-practice-health-settings/interprofessional-spiritual-care-education-0/
Relias Academy offers (ISPEC) ONLINE COURSE
Spiritual education offered through SCA- Spiritual Care Association.
https://www.spiritualcareassociation.org/
https://www.spiritualcareassociation.org/education.html/
Important Information About the SCA Learning Center
The Online Learning Center uses a state-of-the-art learning management system
Earn a certiicate of completion and continuing education hours for each course completed.
The price for Self-Guided Courses is $145 for SCA members and $345 for non-members.
SCA offers two Palliative Care Certiicate Courses to help you deliver quality spiritual care to palliative care
patients. Allow 6 months to complete:
Fundamentals of Spiritual Care in Palliative Care-30hrs
Advanced Practice Spiritual Care in Palliative Care- 25hrs
The Center to Advance Palliative Care (CAPC) is another great source for educational information, including many
resources which support spiritual care. https://www.capc.org/search/?q=Spiritual+care+education/
A Prayer for God’s Children
Dear Heavenly Father,
We know you are here with us, that you surround us with your love and grace.
You give a sense of peace and hope, which can only come from You.
God of love, ever caring, stand by us in our times of need. Be our hope and bring us peace.
Watch over your beautiful children and grant them your mercy, healing, and strength.
Help us to trust in You, knowing with full conidence, you have a special plan for each of us.
Keep us strong in faith, hope and love. Guide those entrusted to provide care and support.
Give us courage and strength to support and bring hope and love to your beautiful children and their families. Your
children are precious in your sight and beloved to all who know them.
All these things we humbly ask through Christ Our Lord, Amen.
“Let the children come to me, and do not hinder them; for to such belongs the kingdom of God.”
~ Luke 18:16
Submitted to NACC for World Health Day 2022
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References
1. Puchalski CM. Making health care whole: Integrating spirituality into health care. New Age Books: 2012.
2. Ferrell, B. HPNA Nursing Manuals “Spiritual, Religious, and Cultural Aspects of Care.” Oxford University Press,
2016.
3. Wicks, R. J. Overcoming secondary stress in medical and nursing practice: A guide to professional resilience...
and personal well-being. Oxford University Press, 2021.
4. National Consensus Project for Quality Palliative Care. Clinical practice guidelines for quality palliative care
(4th ed.). Richmond, VA: National Coalition for Hospice and Palliative Care; 2018. https://www.
nationalcoalitionhpc.org/ncp
5. Ferrell, B., & Paice, J. Oxford textbook of palliative nursing. Oxford University Press, 2019.
6. Hall, E, Hughes, B, & Handzo, G. Spiritual care: What it means, why it matters in health care. HealthCare
Chaplaincy Network. 2018.
7. Ferrell, B., Wittenberg, E., Battista, V., & Walker, G. Nurses’ experiences of spiritual communication with
seriously ill children. Journal of Palliative Medicine, 2016: 19(11): 1166-1170.
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The Case For Enhanced, Proactive Professional
Grief Care For Pediatric Hospice And Palliative
Care Professionals
Dianne Gray, B.S.
CEO, Hospice & Healthcare Communications
Global Ambassador
International Childrens Palliative Care Network
Naples, FL
dgray@hhccommunications.com
In 1983, psychiatrist and hospice pioneer, Dr. Elisabeth Kubler-Ross authored the book, On Children and Death.
Though she had been asked to write on the topic for years, publishers pushed back asking who would want to read
a book about children dying and grieving. Yet Elisabeth had a different take on the topic. Her book would implore
readers to consider the thoughts, emotions, needs, and inner spiritual workings of dying children and their
siblings,thus positioning the child as the teacher, not the student.
The book also focused on the relationship between the seriously-ill child and their treasured belongings, the child’s
capacity to understand their imminent passing (often ahead of the parents), symbolic language of dying children,
and much more. The publication was ahead of its time because it also exposed what many in the pediatric hospice
and palliative care ield know to this day: The world largely cannot bear to stare a dying child in the face and is even
less tolerant of being in the presence of the inordinate pain and suffering children endure as part of the seemingly
unjust nature of pediatric disease.
In short, On Children and Death invited readers to explore their own discomfort with the fragility of life while also
opening the door to lipping the medical model of traditional pediatric healthcare on its head. In her book and in her
work, seriously-ill children were the educators and the voice to be considered in a world where the medical model
largely positioned the physician at the top of the professional healthcare low-chart.
Thankfully, much of that has changed and care teams now often, though not always, provide space for the child to
have a voice in their own care and end-of-life experience where possible. But the services available for dying
children, their caregivers, and professional care teams is not equal to that for dying adults in most of the world and
that inequity is what deserves highlighting as we look toward the future of pediatric hospice and palliative care.
Case Study:
In 2005, a 14-year-old child died following 18 days of palliative sedation and the removal of nutrition and hydration
which allowed natural death, all guided under the local hospice’s direction. The hospice had suggested this course
following 11 days of intractable pain and suffering. Following multiple consults with several physician-specialists in
the UK and the US, it was determined that the rare disease was most likely taking its course though no one was
sure death was imminent.
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P
rofessional care:
For the last 4 1/2 years of the family’s 10-year-experience caring for the child with a rare disease, the child received
care in the home from a local home healthcare agency. The area hospice oversaw the care and contracted with the
agency because like many hospices, there was limited specialized pediatric hospice nursing care available in the
region. At that time, the family had two nurses on a rotating shift, each providing three eight-hour shifts per week.
Other nurses would ill in where possible, with the brunt of the care placed on the primary custodial parent who
was also a single-parent caregiver of another healthy, younger child in the household.
When the seriously-ill child died, one of the two nurses left the ield immediately. Shortly thereafter, she entered a
residential rehabilitation program for alcohol abuse, stating that her almost-ive-years with the child left her
feeling emotionally ill-equipped to bear witness to the immense pain and suffering of the child. She then divorced
and her fractured family struggled, then regained stability in the ensuing years.
The other primary nurse for the child also left the pediatric hospice ield in the months that followed, vowing to
never care for a child facing end of-life again. Her 4 1/2-year experience of observing profound sufferingand under-
managed pain jeopardized her mental health which lead her to seek in-patient counseling out-of-state.
More Recently
A few years ago, I gave a presentation on Pediatric Palliative Care at the National Institute of Health (NIH). During
the Q&A following the presentation, one of the CEO attendees raised her hand. She asked for input because one of
her nurses recently had died by suicide. Her concern, then, echoes what I have heard from other providers in the
ield throughout my 19-year career. “What can we do to support our pediatric hospice and palliative care clinicians
and teams,” she asked as she approached the stage, her eyes illed with tears?“ The rest of my team is emotionally
spent. It breaks my heart and I also don’t want them to quit.”
In another instance, a hospice CEO texted me late one night, politely asking if she could call me. She then shared
how she “just can’t do it anymore.” In tears, she explained how she felt she had failed a family because a pediatric
patient had endured a complicat
ed, painful death. She felt her ability to process this family’s suffering was beyond
her capacity.
Last year, a hospice’s seasoned social worker exited the ield following a pediatric patient’s mother who died by
suicide one month after the child’s death. The social worker was a cherished and respected professional who
couldn’t bear to think that she “missed something.”There were limited professional grief resources in place and no
extended bereavement care for the social worker.
These are just a few of the many professional grief experiences shared with me over the years. Bearing witness to
the unique, profound suffering that accompanies children and their family members as they face acute pain and
the emotional and spiritual suffering inherent in most pediatric serious illnesses, death, and grief journeys is beyond
the scope of expertise for most hospice care providers. The responsibility and role of pediatric hospice and palliative
care team member is often a complex, heavy load to carry.
Lanise Shortell, RN, Administrator of Pediatric Hospice and Palliative Care of Georgia shares, “Professional grief is
unique. It is disenfranchised grief, in a way. It is a natural human response to grieve the loss of patients we serve.
The challenging part is managing professional loss with ongoing personal losses. Our world is in a state of ongoing
grief. The compounded impact of professional and personal loss can betoo much to bear. Without a fresh lens to
emotionally sustain professionals working in the end-of-life space, we will continue to see stafing shortages and
poor-quality care when families need our support and clinical excellence the most.”
Providers of pediatric hospice and palliative care need a substantial increase in the scope and coverage under the
employer-sponsored professional bereavement beneits that correlate to the length of time of service, role, and
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responsibility inherent in the provision of care of seriously-ill and dying children and their families. Several hospice
executives have shared that pediatric hospice and palliative care nurses receive 1:1 what adult professional
providers do under professional bereavement care and services, with little to no expansive conversation
surrounding the fact that children are often on service for years at a time. As well, more children are living longer
due to enhanced care opportunities and advanced technologies that keep seriously-ill children alive longer. Who is
going to care for these children in the months and years ahead?
It’s time to reframe what strength looks like in professional grief management. Many employers are implementing
self-care/repair int
o job descriptions and professional expectations.
This may look like increasing PTO days off yearly, allowing paid days or consistent self-repair activities such as
massage, yoga, counseling, and/or nature days. This approach includes rewarding employees for self-care activities
through yearly evaluations and pay raises. Implementing both cognitive and somatic strategies to manage
professional grief is a proactive stance that anticipates and attends to the very real human response to losing
patients we care for.
If we are not proactive in our response to professional grief, it becomes compounded until there is no space left for
providers to process loss. When unacknowledged, professional grief burns out each member of the IDT team, thus
endangering both the families served and the programs that organizations have spent hundreds of thousands (or
more) to build.
What does real support look like?
Having professional counselors debrief with the IDT monthly
Monthly outdoor nature experiences with days off allotted to attend these experiences
Evidence-based yoga and breath work opportunities
All blended into job requirements
In closing, “unattended grief is at the core of pediatric hospice stafing shortages nationwide,” shared Shortell.
“Accessible avenues to metabolize professional grief are required to sustain practitioners that sustain the at-risk
families we serve.”
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Concurrent Care Payor Relationships:
Development and Maintenance
Allison Kuchar, MSCHA, MBA, CHPO, CEOLS
Executive Director, Children’s Programs
Capital Caring Health; Capital Caring Kids
Falls Church, VA
and
Jessica Sturgeon, CLS, MT-BC, HPMT, NICU-MT
Director, Pediatric Care Coordination
Capital Caring Health; Capital Caring Kids
Falls Church, VA
jsturgeon@capitalcaring.org
Introduction
Implementation of concurrent care through the Affordable Care Act has signiicantly
increased the accessibility of
hospice services for medically eligible children and made it possible for hospice providers to offer a higher level of care
and support to children and their families with complex medical needs. While the provision requires states to make
hospice services available to individuals under the age of 21 eligible for Medicaid and CHIP programs while expecting
states to continue to pay and provide disease alerting and/or life prolonging interventions after hospice election,
established guidelines on how to interpret and implement this model of care are still lacking. As a result, many
programs throughout the country have adapted innovative care models to relect adult hospice standards and/or
hospital palliative care programs, with consideration of concurrent delivery and pediatric nuances. Both the
development and adjustment to these care models requires considerable and ongoing networking, relationship building,
and collaboration with state, commercial, and private payor stakeholders. The expectations outlined in Provider
Services Agreements, Memorandums of Understanding, and other established understandings between the hospice
provider and each individual pay source are inarguably the single most important catalyst for the initiation,
maintenance, sustainability, and growth of hospice programs who care for children and their families at end-of-life.
This article aims to provide an overview framework for hospices seeking to develop and strengthen relationships with
pay sources by incorporating speciic guidelines for concurrent care implementation, decreasing barriers to care, and
improving care quality for mutual patients that have proven effective with a community-based and non-for-proit
pediatric hospice program.
Affordable Care Act and Medicaid
Starting under
the 2010 Affordable Care Act, Section 2302, children enrolled in Medicaid can have curative and/or
life-prolonging treatment at the same time as hospice care. Concurrent care allows for children and families to access
additional support in an era of changing and increasing prognostic uncertainty for often incurable, progressive, and
complex life-limiting conditions. In care application, the hospice provider manages and pays for all services included in
the hospice plan of care, with other providers managing needs outside of the hospice plan of care. Section 2302 not
only requires state payors to allow concurrent care but expects them to continue to pay for life-prolonging and/or
curative
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treatments, while still reimbursing the hospice provider
at the daily level of care per diem. Beyond an overarching
understanding about access to concurrent services and cost responsibility, pathways of implementation, expectations
surrounding care delivery, and adjustments to eligibility criterion are determined between the hospice provider and
state payor. This often requires additional research and relationship-building between the hospice agency and Medicaid
ofices to determine ongoing collaboration expectations, points of contact, and concurrent care boundaries for age,
treatment, and/or coverage. With ever-changing regulations and hands in healthcare, the establishment and consistent
communication becomes crucial in the ongoing relationship with hospice agencies and Medicaid-managed programs.
Relationship Investment with Pay Source Stakeholders
The hospice organization must irst determine which person, or team, (i.e., “Pediatric Care Coordinator/ Pediatric
Champion”) will be responsible for managing and nurturing pediatric/concurrent care directed relationships with
pay sources. Depending on the knowledge base within the organization, initial efforts may require investment to
learn more about concurrent care implement
ation and care delivery practices. Engaging with hospice organizations
with dedicated pediatric programming and acclimating to NHPCO’s Concurrent Care Implementation Tool Kit are
the best places to start. The following framework has been developed to aid identiied “Pediatric Champion(s)”
initiate and strengthen relationships with pay sources to decrease barriers to care, improve care quality, and
demonstrate inancial stewardship in the care of pediatric patients.
Research of Pay Sources
Through research, the agency can identify both existing and potential pay sources within the service area.
Prioritization is a key element in initial research into potential pay sources and their support of concurrent care
utilizations. Initial research and development of concurrent care programming should prioritize by:
1. Those with federal directives to honor concurrent care i.e. Medicaid, Tricareas they will likely have programmatic
and inancial outlines conducive to offer guidance and support in reimbursement and coordination.
2. Payors who insure children as the primary beneiciaryfor easier accessibility to coverage information and feedback.
3. Commercial payers i.e. Anthem Blue Cross, United Healthcare, etc. and efforts should be directed towards the
most frequent pay source for the hospice’s patient population and/or pay sources with largest market share in
the hospice’s service area.
Understanding of Requirements and Guidelines
Prior to initiating contact with pay source stakeholders, it is essential to understand the existing requirements and
guidelines of each pay source, including eligibility criteria, billing processes, reimbursement rates, and if beneiciary
election of hospice results in any alterations to coverage beneits. This familiarization should also extend to state-
level nuances, as outlined in Medicaid State Plan Amendments. For example, will hospice election alter the plan in
any way that could prevent access to treatment or care? This information can be obtained through connection with
other local/state-based programs as well as other nationally based models for care. It’s also crucial to engage with
relevant personnel within your organization (Patient Accounts, Senior Billing/Contracting, etc.) to obtain a copy of
each insurance pay rate agreement and Provider Participation Agreement. By gaining access to participating
provider resources there is a greater capacity to navigate the needs vs wants re: payor reimbursement and
strategy. Additionally, there is the opportunity to gather as much information as possible from online or other
resources that include NHPCO toolkits, listservs, and honorable resources such as this e-journal.
Identify, Engage, and Educate
The hospice agency must identify key pay source stakeholders andinitiate contact to begin building relationships.
Most often, the insurance case manager and insurance representative (connected with an existing patient) will
present the most immediate opportunities for initial rapport building. These individuals are many times the
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facilitator of connection to the director of Case Management, Clients Relation Provider, and Medical Director. The
“pediatric champion” or coordinator can then begin to offer ongoing education and training t
o pay source
stakeholders about the services and beneits of hospice care, accessibility, value of services offered, and the
concurrent care delivery model. This must occur at the individual case management, group case management, and
medical director level, often in that order. Ongoing education will be likely as information and personnel are
updated. By offering repeated opportunities for discussion, there is a minimization of an immediate denial or shift
in policy and can promote a more collaborative environment to continue meeting the needs of the patient.
Imbedding Payors into Care Models
During the imbedding process, it is crucial to clarify communication channels and expectations of the anticipated
partnership between program/agency and payor. While the Provider Participation Agreement acknowledges
payment for services can be made to the hospice provider and outlines services covered by the plan, expectations
surrounding communication, care delivery expectations, and other nuances speciic to pediatric concurrent care
are not deined. At the minimum, engagement must occur between the hospice and key stakeholders to:
1. Clarify the processes the hospice must follow when a concurrent care patient is readmitted to the hospital.
2. Establish the frequency of care communication and collaboration between the hospice provider and pay source
stakeholders
3. Identify the best point person within the pay source to aide in resolution of concurrent care access and billing
related issues and
4. Determine any requirements for special reporting for concurrent care patients. For example;
Health Services for Children with Special Needs (HSCSN) DC Medicaid plan requires submission of a “Panda
Passport” (i.e., return to hospital plan) prepared by the Children’s National Medical Center Inpatient
palliative care team for inclusion in the initial hospice authorization submission.
Tricare requires the hospice RN Case manager to complete and submit a monthly report on a template
speciic to Tricare beneiciaries.
5. Establish clear communication channels and intervals for check-ins will help address any issues or concerns in a
timely manner and main positive relationships with pay sources.
These expectations can be further outlined in a Memorandum of Understanding if not included in the Provider
Participation Agreement. Any changes to the aforementioned would then need to be communicated to all parties
involved for consistency.
Demonstrate Compliance and Quality
Ensuring compliance and high-quality care to patients and monitoring performance outcomes demonstrates
effectiveness of service. Additionally, it produces quantiied data-driven insights for reimbursements and referrals
which not only supports the renewal of the Provider Participation Agreement but builds further trust with pay
sources and encourages referrals. At the highest levels of collaboration, opportunities emerge to advocate for:
1. Service pay rate increase; Ex: Quality data demonstrating a reduction in beneiciary re-hospitalizations after
hospice election results in major, favorable inancial conditions for the pay source. This produces negotiating
power for the hospice when broaching conversations with the pay source about increased reimbursement for
high-value, cost-effective services.
2. Amendments to the Provider Participation Agreement
3. Adjustments to eligibility criteria that promote earlier access
4. Incorporation of eligibility indicators into the insurer’s utilization management framework
5. Development of innovative and effective care models for children with complex and advanced illness
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Ongoing Concurrent Care Management and Collaboration
The current interpret
ation of concurrent care adopted by Capital Caring Kids is to provide, at minimum, the basic
pillars of hospice care with the intent of maintaining relationships and coordination with the patient’s primary care
team, specialists, and hospital(s) of choice. In addition, we work closely to provide continued education in the
community to better understand how concurrent care can be of beneit to those with life-limiting conditions as we
recognize the resiliency, complexities, and ever-changing treatment options that come with pediatric conditions. By
doing so, we hope to continue targeting those that have a limited prognosis earlier in their disease trajectory to
better provide support and start dificult conversations while also fully engaging the care team in the ongoing
management of care and holistic care of the child and family.
Following the traditional hospice model of care, the nurse case manager is the primary conduit for assessment and
management of the child’s care in the home. Their vantage point provides the opportunity for accurate reporting to
other entities for, inclusive of insurance case managers, private duty nursing companies, and durable medical
equipment providers. Additionally, in a concurrent and collaborative model, the nurse case manager would further
have accessible channels to report updates, concerns, and changes to the child’s outside providers (primary care
physician, specialists, attending medical director of record, etc.). Capital Caring Kids has developed a model to
offer partnership with outside providers in the overall care management in hopes of limiting trips to the specialist
ofice, emergency department, and/or hospital. Knowing that care collaboration can often be time-sensitive and
demanding, a delineation of responsibilities for ongoing follow up and reporting has become vital. Given the need
for accurate and timely clinical reporting, the nurse case manager maintains the responsibility of following up and
coordinating directly with the hospice/attending medical directors and providers while the patient is receiving
routine hospice care at home as well insurance case managers should there be question of clinical utilization. The
collaboration and coordination with providers, hospital staff, insurance authorization, and other providers has
fallen under the development of a Pediatric Care Coordination position to aid in navigating the concurrent care
space. This position allows for more lexibility to provide more in-depth education and direction with each child’s
speciic concurrent care policy and utilization while also serving as a main contact for providers and hospitals to
interface with as needed. That information is then distributed to the appropriate contact/team member to follow
up on as needed, thus allowing the care team to focus on care provided to the patient and family.
Coordination of Concurrent Care
Ongoing collaboration and coordination of care is essential in maintaining productive relationships with payor sources
and exemplifying the beneits of concurrent hospice care. Maintaining accurate record of treatments, hospitalizations,
care team providers, and DME/medications can assist in allocating resources where they are needed most for the
family while also representing a fuller, more accurate representation of the child’s medical journey.
Hospitalizations
Hospitalizations can prove to be one of the most daunting aspects of ongoing care coordination with families and
can serve as a barrier to electing concurrent care through payor sources. There is a delicate line in honoring the
hospice regulations set and maintained for the adult-based population while also keeping in line with a concurrent
care model for care. The procedure used by the Capital Caring Kids team provides contact between the pediatric
hospice program and hospital systems to navigate that balance. This allows the pediatric care team to maintain
consistency with their own schedules while updates and collaboration can be maintained by the point of contact.
When a pediatric patient is admitted to a hospital, whether it be for an emergent or planned need, the point of
contact provides immediate support in offering updates from the hospice team in current goals of care,
medication, and family needs. This ongoing collaboration allows for insight as appropriate to advocate for the
patient/family in ways aligned with their journey at home. This may include the coordination with the hospital-
based palliative care, primary care, and inpatient care teams. Due diligence is completed when a patient is
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hospitalized to ascertain appropriateness for continued hospice enrollment versus discharge secondary to extended
hospitalizations at approximately 14 days (about 2 weeks) in accordance with hospice regulation and in agreement/
collaboration with the insurance policy recommendations. The current Medicaid-related policies in the DC metro
area have maintained agreement to allow ongoing hospice support and authorization during these hospitalizations
in good faith that the coordination of care will promote better utilization of services and hopeful decrease in
hospitalizations and/or inpatient stay.
Throughout the hospitalization, updates are provided to the hospice care team and discharge/clinical paperwork is
obtained at discharge to be reviewed and stored in the hospice medical record for ongoing care management/
adjustment. If a child was discharged due to an extended hospitalization, an expedited re-enrollment is facilitated
by the hospice team in coordination with both the hospital and inpatient care team. Moving forward, the hospice
team continues to encourage and empower families to access 24/7 triage nursing for symptom management and
coordination to minimize future hospitalization and update visit frequencies as appropriate. The Capital Caring
Kids team has found this to be a successful approach as indicated in comments made by families, providers, and in
a noted decrease of overall hospitalizations in the progression of their hospice journey.
Durable Medical Equipment and Supplies
A beneit offered to payor sources is the division of responsibility for ongoing medical support for the hospice
enrollee inclusive of Durable Medical Equipment (DME) and supplies. Although a somewhat dificult area to
navigate, a clearly deined list of covered and non-covered items that can be agreed on by both parties will aid in
the delineation of inancial responsibilities. Pediatric hospice can, at minimum, cover the basic equipment and
supply needs mirrored in the adult population including oxygen, hospital bed, and assistive devices for ADLs.
However, many pediatric patients referred to and enrolled in concurrent hospice care may come on board with
existing DME and supplies in place. At that time, the hospice company can provide opportunities for reconciliation
and switch out equipment as indicated or appropriate. In the cases where more specialized equipment is needed, or
supplies have been fulilled regularly, ongoing management would remain in place as it was prior to the hospice
admission. The overarching consideration for delineation is carefully considered based on the hospice diagnosis and
goals of care. For children in pursuit of concurrent care, curative and/or life prolonging care needs remain managed
outside of hospice. For a child in pursuit of comfort care, hospice becomes the managing party for all needs.For
concurrent care patients, as care needs progress and goals of care evolve, there may be opportunities for hospices
to have more management of equipment whether it be the addition of items or the transition of ownership. There
is also always the option to explore supplemental support for supplies to offset any inancial obligation for the
family. In partnership with payors, this can provide another bridge for accessing the beneits of concurrent care as
supply costs can be offset when there is a clear and distinctive need. It is important to keep the lines of
communication open with payors and supply companies to recognize individual needs and differences in the plan of
care needed for the pediatric patient while also offering ongoing education on hospice management capacities.
Medication
Medication management is an additional grey area where ownership can be dificult to deine. Those medically
complex children that are often eligible for concurrent hospice care have high medication utilization and need.
Given the regulations followed by hospice agencies regarding the palliation of symptoms, there need to be clearly
deined parameters regarding the ongoing management of medication and prescribing when a pediatric patient is
admitted onto hospice. In many cases, an initial reconciliation can be completed by identifying if the mediation is
deemed concurrent vs palliative in nature. Those pain, anxiety, and respiratory medications typically covered by
hospice agencies would expect to be managed by the hospice team once enrollment occurs. However, those
medications seen as concurrent (even if they are palliative) would need continued oversight by the primary
providers. These may include medications such as: preventative treatment, chemotherapy and chemotherapy-
related medication, nebulizers, clinical trial protocol medication, and others. Having a clinical champion to help
navigate medication management is crucial to promote consistency in coverage across the board.
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Pain management is a role typically taken on by the hospice team. However, it is common for referred pediatric
patients to have an established pain management routine in place. Open and transparent conversations need to be
ongoing between the primary team and hospice team regarding pain management with the hope of enacting a
one-prescriber system to decrease concerns of misuse or divergence while also honoring a payor’s request for
appropriate allocation of resources to the hospice team. In most cases, controlled narcotics used for pain
management should be logged and reported to all providers for awareness with one-prescriber (typically the hospice
physician) taking on management. If possible, a contract should also be established with the family while on hospice
services to promote educated, appropriate, and safe use. This combined will help improve communication with
patients and other providers, mitigate/palliate the pain while on hospice services, and hopefully improve the function
and quality of life to limit (CDC 2023) the need for ongoing hospital and/or ED visits.
Conclusion
Though the interpretation and utilization of concurrent hospice care can vary state-to-state, the establishment of
relationships, expectations, and coordination remain a vital part of how hospice is offered to children nationally.
The fundamental collaboration between agency and payor can set programs up for success and, hopefully, promote
longevity in accessing end-of-life care for the pediatric population.
References
Centers for Disease Control and Prevention. (2023, September 26). CDC’s Clinical Practice Guideline for prescribing
opioids for pain. Centers for Disease Control and Prevention. https://www.cdc.gov/opioids/healthcare-
professionals/prescribing/guideline/index.html
Ernecoff NC,Anhang Price R. Concurrent care as the next frontier in end-of-life care.JAMA Health
Forum.2023;4(8):e232603. doi:10.1001/jamahealthforum.2023.2603
Keim-Malpass J, Cozad MJ, Svynarenko R, Mack JW, Lindley LC. Medical complexity and concurrent hospice care: A
national study of Medicaid children from 2011 to 2013. J Spec Pediatr Nurs. 2021 Oct;26(4):e12333. doi: 10.1111/
jspn.12333. Epub 2021 Apr 3. PMID: 33811725; PMCID: PMC8547133.
Lindley LC, Cozad MJ, Mack JW, Keim-Malpass J, Svynarenko R, Hinds PS. Effectiveness of pediatric concurrent
hospice care to improve continuity of care. Am J Hosp Palliat Care. 2022 Oct;39(10):1129-1136. doi:
10.1177/10499091211056039. Epub 2021 Dec 4. PMID: 34866426; PMCID: PMC9166145.
National Hospice and Palliative Care Organization. (2023, May 4). Pediatric concurrent care. NHPCO. https://www.
nhpco.org/palliativecare/pediatrics/pediatric-concurrent-care/#:~:text=Concurrent%20care%20is%20for%20
all%20children%20with%20a,the%20impossible%20choice%20between%20life-prolonging%20and%20
hospice%20care.
U.S. Department of Health and Human Services. (2022). How clinical trials work. National Heart Lung and Blood
Institute. https://www.nhlbi.nih.gov/research/clinical-trials/how-studies-work
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Items of Interest!
Please help us keep the items of interest up-to-date. Share your news, upcoming conferences, or webinars.
Are there particular podcasts that may be of interest to our readers? Send any items of interest to Christy at
Christy.T[email protected]. Thank you.
1. Pediatric Palliative Care Webinar Series for 2024 has been announced. Calendar and more information,
including how to register can be found at www.ppcwebinars.org
2. NHPCO Releases 2024 Pediatric Palliative and Hospice Care Needs Assessment
Are you a hospice or palliative care provider or organization who has cared for at least one pediatric patient
during the last four years? If so, complete the 2024 Pediatric Palliative and Hospice Care Needs Assessment.
The Needs Assessment is a product of the National Hospice and Palliative Care Organization’s Pediatric
Advisory Council with the goal to gain a better understanding of the organizations and providers caring for
pediatric patients with serious illnesses throughout the United States. The needs assessment helps create
resources and support advocacy. You do not need to be an NHPCO member to complete the survey. Any
questions can be directed to the Pediatric Advisory Council at [email protected]
3. Attend NHPCO’s Pediatric Webinar Series
Join the faculty for a two-part webinar miniseries that will cover the journey of pediatric hospice and palliative
care from its history to envisioning a holistic, patient-centered future, as well as introduce a toolkit to help
providers navigate coverage for concurrent care with private insurers for pediatric patients. Each webinar will
be held on May 9 and May 23 from 2 p.m. to 3 p.m. ET and will be 1 hour in length.
4. UPCOMING Conferences:
The 2024 NHPCO Leadership Conference will be in September 2024.
More information can be found on the NHPCO website
Have a conference to submit/share – send us the information to Christy.T[email protected].
5. Subjects and Contributors for Future Issues of this E-Journal
Our future issues will be centered on the following main themes. If you have any thoughts about these or any
other topics, contributors, or future issues, please contact Christy at Christy.T[email protected] or Melissa
Hunt at [email protected].
Issue Topics: 2024
Let us know your ideas! What topics would you like to see addressed in the Pediatric e-Journal? Issues will be
distributed in February, May, August, and November.
Issue #76: Social media, technology, communication
Issue #77: Home Care
6. NHPCO Pediatric Website Pages have been updated for easier searching!
NHPCO Palliative Care Online Resources: NHPCO has a variety of pediatric hospice and palliative care
resources available at www.nhpco.org/pediatrics. Also, more palliative care resources are available at www.
nhpco.org/palliativecare, including:
Community–Based Palliative Care
Legal and Regulatory Resources
Webinars and Courses
Brochures in English and Spanish for families
Plus, more for NHPCO members
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7. Questions about Concurrent Care? Dr. Lisa Lindley and her team have created a wonderful website full of
resources and information. You can access all the information for Pediatric End-of-Life Care Research at
https://pedeolcare.utk.edu/
8. Palliative Care Programs and Professionals: Founded in 1978, National Hospice and Palliative Care
Organization (NHPCO) is the world’s largest and most innovative national membership organization devoted
exclusively to promoting access to hospice and palliative care and to maintaining quality care for persons
facing the end of life and their families. Join NHPCO Today!
Individual Palliative Care Membership
Palliative Care Group Application - Save by registering your entire team
Note: Many of the pediatric resources are open access as a community service by NHPCO and membership is not
required. However, we would love to have you join our community of vested professionals focused on quality palliative
and hospice care throughout the lifespan!
Do you have a resource that would be helpful for others to know about? Please send the information to Christy at
Christy.T[email protected] and we will add it to the Items of Interest.
Previous Items of Interest
9. Did you know that the State Coalitions from Pennsylvania, Illinois and California, with support from the Shiley
Haynes Institute for Palliative Care and the HAP Foundation, host monthly, affordable webinars with
continuing education units available? You can register for one or the entire series, with discounts for multiple
registrations. For more information, review the PPC website.
10. On that same note, did you know there was a network of state coalitions and folks interested in helping with or
starting a state coalition for Pediatric Palliative Care? For more information, contact Betsy betsy@ppcc-pa.org
11. End-of-Life Nursing Education Consortium (ELNEC) project has several upcoming courses; if you are faculty,
you can get free access to the curriculum for your program/courses you teach.
12. Recently, the California Advocacy Network for Children with Special Health Care Needs announced their
foundation had committed to increasing access to journal articles that may be dificult for family members
and non-proit staff to access to improve “effective and equitable systems” as “access to scholarly work is
essential to system improvement.” More information can be found on the California Advocacy Network for
Children website. It may be helpful to contact your state’s chapter to determine what resources they may have!
13. Courageous Parent’s Network has a wealth of resources for parents, caregivers, and providers. The list is too
long to add here so please check out CPN’s website.
14. The Pediatric Palliative Care Coalition of Pennsylvania, the Greater Illinois Pediatric Palliative Care Coalition,
and the Funeral Service Foundation have created a community resource to guide families through the funeral/
memorialization planning process:
When a Child Dies: Planning Acts of Love & Legacy
This resource is available in both English and Spanish and is FREE, thanks to generous funding from the Funeral
Service Foundation. You pay only a nominal shipping fee. More information can be found at When A Child Dies.
15. Pediatric Go Wish Together: A conversation game for parents and pediatric caregivers; developed by Meghan
Potthoff, Ph.D., APRN-NP, PPCNP-BC, CPNP-AC in collaboration with Coda Alliance. This game is “developed
to help parents navigate the unimaginable journey of their child’s illness.” “It is a tool that provides parents and
providers a way to think and talk about what’s most important to the child”. More information can be found at
Pediatric Go Wish Together
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16. Have you heard of the new organization PallCHASE: Palliative Care in Humanitarian Aid Situations and
Emergencies? Their primary ambition is the relief of suffering, and their purpose “To work in partnership
through a visible and effective network to advocate for palliative care integration in humanitarian situations or
emergencies…”. Please visit their website for more information, healthcare professional training and resources
in a variety of languages! Check out their website!
17. Another great new group is the Child Life in Hospice and Palliative Care Network, which provides child life
specialists working in hospice or palliative care access to resources, education, research, and networking
opportunities to establish and provide best practice care for patients and families experiencing a serious illness.
They are requesting that interested members ill out a brief survey, sign up today at CLHPN
18. A Toolkit of Autism, Grief, and Loss Resources by Hospice Foundation of America
The toolkit will include a variety of materials and resources, such as:
suggestions for responding to the grief experiences of autistic adults;
ways to provide for choice and inclusion in rituals;
tips for communicating the news of death;
social stories on grief for adults;
videos about grief, including interview clips with autistic adults and their families;
two complimentary continuing education (CE) programs for professionals; and much more!
19. A resource for pregnancy or infant loss is Share: Pregnancy & Infant Loss Support. Share was started in 1977 in
response to the urging of one bereaved family by Sr. Jean Marie Lamb, OSF. Initially providing support groups,
they now offer online support groups, education, and support for families and caregivers.
20. The Pediatric Palliative Care Coalition of Pennsylvania (PPCC) has made a new resource available – a Sibling
Grief and Bereavement Toolkit. This Toolkit has been developed to address the needs and concerns of children
and teens who have experienced the death of their sibling with medical complexities. Please see the associated
article in this edition! Below is a link to the toolkit and one of the activities – “Make a Feelings Chart”.
View the PPCC Sibling Grief and Bereavement Toolkit.
Toolkit Activity
For children who are grieving the loss of their siblings, returning to school can be a dificult transition. Check out
this month’s highlighted activity from the toolkit that may help children and teens in the upcoming school year.
Make a Feelings Chart by downloading the activity. PPCC invites you to share this information with parents,
caregivers, medical professionals, providers, therapists, etc.
21. Pediatric Hospice and Palliative Care Resources:
CaringInfo, a program of the National Hospice and Palliative Care Organization, provides free resources to
help people make decisions about end-of-life care and services before a crisis. www.caringinfo.org
NHPCO’s Palliative Care Resource Series includes pediatric palliative resources like:
Communication Between Parents and Health Care Professionals Enhances
Satisfaction Among Parents of the Children with Severe Spinal Muscular Atrophy
Consideration for Complex Pediatric Palliative Care Discharges
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Songs of the Dying: The Case for Music Therapy in Pediatric Palliative and
Hospice Care
Nonpharmacological Pain Management for Children
Sibling Grief
Pediatric Pain Management Strategies
Communicating with a Child Experiencing the Death of a Loved One: Developmental Considerations
In an effort to standardize the medication coverage process for children receiving concurrent care, the
NHPCO Pediatric Advisory Council developed a new resource for providers titled
Determination of Hospice Medication Coverage in CHILDREN.
22. Trends in Pediatric Palliative Care Research
Every month, PedPalASCNET collects new pediatric palliative care research. For past lists visit their blog,
browse in their library, or join the Zotero group. View the New Citation List in their library.
23. Palliative Care Resources for Nurses, Patient Care Support Staff, and Families of Patients by Life and Death
Matters, https://lifeanddeathmatters.ca/ offers texts, workbooks and resources for providers and family
members. Although primarily focused on adults they reference across the lifespan with sound principles that
are useful no matter the age of your patients.
The text, workbook and companion resources support nurses and nursing students (in Canada and USA) to
develop the knowledge, skills, and attitudes for integrating a palliative approach and providing excellent
end-of-life care.
Essentials in Hospice and Palliative Care: A Practical Resource for Every Nurse
Textbook: 978-1-926923-11-6 | Workbook: 978-1-926923-11-6
https://lifeanddeathmatters.ca/product/palliative-care-nurse/
The text, workbook and resources, based on national competencies, will help nurses:
Develop best practice interactions
Decrease fears and increase conidence and competence in caring for the dying person and family
Develop ethically and culturally competent practices with touchstones and by relating experiences
Also available for this title: Videos, Podcasts, PowerPoint™ Presentations and NCLEX-style questions
Please note the archived issues are available as a community-service by NHPCO and
can be found at www.nhpco.org/pediatrics or by reaching out to Pediatrics@nhpco.org.
