Open Letter to the Pediatric Hospice & Palliative Care Community

Tuesday, 10 November 2020

Today, more than 10 years since the passage of the 2010 Patient Protection and Affordable Care Act (ACA), the survival of Concurrent Care for Children (Section 2302) is in question again. On this day, November 10, 2020, the Supreme Court opens arguments on California v. Texas – the outcome of this case will determine the fate of the ACA. A Supreme Court decision will be approximately 2 to 3 months after the case. What is unknown is how this might impact pediatric concurrent care. We expect that if the ACA is dissolved, Section 2302 will also be dissolved.

More than 8,000 children use hospice care each year in the US. Among the children on Medicaid and CHIP (and TRICARE), their receipt of concurrent care – simultaneous treatment for the terminal illness while enrolled in hospice – has grown from 30% to over 70% in recent years. In other words, children and their families increasingly see the value of concurrent care at end of life. How will you and your state respond to these families if Section 2302 is no longer available? While we acknowledge that there has been significant challenges and variation in state implementation of concurrent care, this is a national call for action to work with your state end-of-life community (e.g., children’s hospitals, hospices, state-level hospice and palliative care associations, legislators, and Medicaid Offices) to Make-a-Plan. We offer some recommendations for short- and long-term consideration:

Options

• Private insurance – Call private insurance payers. Private insurance is increasingly covering pediatric concurrent care. If your patient is cover by private insurance, a call to the provider to ask if they will cover is an easy step. For those children on Medicaid or CHIP only, a conversation might occur with the parents about adding children to a private insurance plan. Many businesses have Benefits Open Enrollment during this time and now might be an opportunity for families to add the child to their plan.
• Open access hospice – Identify the hospices in your community that provide open access hospice, which mirrors concurrent care, might be an option for these children if they are enrolled in the hospice or could transfer to this hospice.
• Grant/philanthropy resources – Check on whether there are temporary financial resources at your organization to cover the gap in service that would occur if there is no concurrent care.
• Medicaid Early & Periodic Screening, Diagnostic, and Treatment (EPSDT) – Explore Medicaid EPSDT. Work with your state Medicaid Office to add concurrent care as a designated EPSDT service for children.
• Legislation – Legislate pediatric concurrent care. A long-term option is to legislate concurrent care through a state-level bill. Some states allow for legislative changes to their Medicaid program. A conversation with your state hospice association legislative representative might provide guidance on your specific state options.

We are running out of time. We now need action. We encourage you to gather key stakeholders and start these conversations about what will happen if children in your state lose concurrent care services. Make-a-plan and be ready to offer solutions to your state Medicaid Offices. We are here to work with you and thank you for your efforts. Please visit our site for updates.

Signatures:

Lisa C. Lindley, PhD, RN, FPCN, FAAN, Associate Professor & Nightingale Endowed Faculty Fellow, College of Nursing, University of Tennessee, Knoxville

Sarah Friebert, MD Director, Haslinger Family Pediatric Palliative Care Division, Akron Children’s Hospital; Professor of Pediatrics, Northeast Ohio University College of Medicine

Jennifer Bartz Hero’s Path Palliative Care, President, Board of Directors

Jessica Keim-Malpass, PhD, RN Associate Professor, University of Virginia School of Nursing, School of Medicine, Pediatrics

Christy Torkildson, PhD, RN, PHN, FPCN

Carly Levy, MD, FAAP, FAAHPM Associate Professor of Pediatrics, Program Director, Hospice and Palliative Medicine Fellowship, Division of Palliative Medicine Sidney Kimmel Medical College, Thomas Jefferson University, A.I. duPont Hospital for Children

Rachel B. Levi, PhD Licensed Psychologist, CA PSY 19594

Debra Lotstein, MD, MPH, FAAP, FAAHPM Associate Professor, USC Keck School of Medicine; Chief, Division of Comfort and Palliative Care, Department of Anesthesia and Critical Care Medicine

Alexis Morvant, MD, MA, FAAP, Chief, Pediatric Palliative Care at Children’s Hospital New Orleans; Assistant Professor of Clinical Pediatrics, LSU Health Sciences Center, School of Medicine

Kristine Pantke, LCSW Hospice Social Workers, Capital Caring

Tara Hoit, BA, Director of Children’s Programs, Capital Caring Kids

Ashley C Kiefer, MD, Pediatric Palliative Care at Children’s Hospital New Orleans; Assistant Clinical Professor of Clinical Pediatrics, LSU Health Sciences Center, School of Medicine

Jori Bogetz, MD Acting Assistant Professor, Division of Bioethics and Palliative Care, Department of Pediatrics, University of Washington School of Medicine

Pamela S. Hinds, PhD, RN, FAAN The William and Joanne Conway Chair in Nursing Research; Executive Director, Department of Nursing Science, Professional Practice, and Quality Outcomes; Research Integrity Officer, Children’s National Hospital

Melanie Cozad, PhD Assistant Professor, Health Services Policy and Management Arnold School of Public Health University of South Carolina

Katherine Patterson Kelly, PhD, RN Nurse Scientist, Department of Nursing Science, Professional Practice, and Quality Nursing Research and Translation Children’s National Hospital; Associate Professor of Pediatrics George Washington University, School of Medicine and Health Sciences

Christine A. Fortney, PhD, RN Assistant Professor, Martha S. Pitzer Center for Women, Children & Youth, The Ohio State University, College of Nursing; Nurse Scientist, Nationwide Children’s Hospital

Kim Mooney-Doyle, PhD, RN, CPNP-AC Assistant Professor, University of Maryland, School of Nursing, Department of Family and Community Health

Rebekah Halpern PA-C, MS Member, PPC Taskforce

Paige Wakefield, BSN Hospice Nurse, Capital Caring

Lindsay Ragsdale, MD, FAAP, FAAHPM Chief, Division of Pediatric Palliative Care, Kentucky Children’s Hospital, University of Kentucky

Salimah H. Meghani, PhD, MBE, RN, FAAN Professor & Term Chair of Palliative Care Department of Biobehavioral Health Sciences New Courtland Center for Transitions and Health; Senior Fellow, Leonard Davis Institute of Health Economics, University of Pennsylvania

Elizabeth A. Lucas MSN, CNP, PMHNP-BC Professor of Nursing, Macomb Community College

Carolyn S. Richar, RN, MDiv, CHPN Chief Mission Officer, Capital Caring Health

Ann Armstrong-Dailey Founding Director, Children’s Hospice International

Solimar Santiago-Warner, LCSW, CPLC, Pediatric Palliative Care Task Force/ NHPCO; Social Work Hospice and Palliative Care Network; DSW Candidate ’22, Silver School of Social Work, New York University

Janet A. Deatrick, PhD, FAAN Professor Emerita of Nursing, University of Pennsylvania, School of Nursing

Kristin James, LCPC, Executive Director, Greater Illinois Pediatric Palliative Care Coalition

Betsy Hawley, Executive Director, Pediatric Palliative Care Coalition

Cynthia J. Bell PhD, RN Associate Professor, Wayne State University, College of Nursing

Jackelyn Boyden, PhD, MPH, RN Postdoctoral Research Fellow, Children’ Hospital of Philadelphia, Roberts Center for Pediatric Research

Dawn Marie Pares Program Coordinator, Seattle Children’s Hospital

Anne Anderson RN, CHPPN Nurse Coordinator, Palliative Care Program, Seattle Children’s Hospital

Kathleen (Kitty) Montgomery, PhD, RN, PCNS-BC, CPHON Assistant Professor, UW-Madison, School of Nursing

Altonia Garrett, MBA, MHA, RN, ACHE VP, Public Affairs and Strategic Partnerships, Capital Caring

Allison Kuchar MSHCA, MBA, CHES, CEOLS Patient Advocate, Business Development & Marketing, Capital Caring

Bridget M. Pekrul, MD Hospice & Palliative Medicine, GBMC HealthCare, Inc

Heather Carlino, MSN, CRNP, Clinical Lecturer B, Clinical Site Coordinator for Pediatric Acute Care NP Program, NNP Program, Pediatric and Neonatal CNS Program, University of Pennsylvania, School of Nursing

Donald Carlino, Director, Regional Corporate Relations, American Cancer Society, Inc., Northeast Region

Connie M. Ulrich, PhD, MSN, RN, FAAN Lillian S. Brunner Chair, Professor of Bioethics and Nursing, University of Pennsylvania, School of Nursing; Department of Medical Ethics and Health Policy Salzburg Global Fellow

Dannell Shu Pediatric Palliative Care Expert + Parent + Advocate+ Speaker + Writer + Blogger + HealthCare Educator

George J. Knafl, PhD, Emeritus Professor, Research, University of North Carolina at Chapel Hill, School of Nursing

Erica Kaye, MD, MPH Assistant Member, Division of Quality of Life and Palliative Care, St. Jude Children’s Research Hospital; Associate Program Director UTHSC Hospice and Palliative Medicine Fellowship Program

Devon Dabbs Project Director, PPC Task Force, National Coalition for Hospice and Palliative Care

Susan Thrane, PhD, RN, CHPN Assistant Professor, Martha S. Pitzer Center for Women, Children, and Youth, The Ohio State University, College of Nursing

Shenita Penn, RN, MSN, CPN, CPPS, CPHQ Pediatric RN Case Manager, Capital Caring

Amy Calligan, RN RN Case Manager, Capital Caring

Robin Borges RNCHPN RN Case Manager, Capital Caring

Demi Oliver PPCNP-BC, RNCM Pediatric Nurse Practitioner, Capital Caring

David M. Steinhorn MD, FAAP Pediatric Palliative Care Consultant Director, Pediatric and Perinatal Program Development, The Elizabeth Hospice

Monica Delaney ATR-BC, LPC Child & Family Clinical Services Specialist, Capital Caring

Mary Beaven LCSW Social Worker, Capital Caring

Lori Butterworth, MED Founder and Executive Director, Jacob’s Heart Children’s Cancer Support Services; Co-Founder, Children’s Hospice & Palliative Care Coalition of California

Mary Tiso, RN, MS, CNL, CHPPN Alliance Kids Committee Chair, Gilchrist Kids

Sarah Jackson, MSW, LICSW Clinical Manager, Providence Hospice, Carousel & Stepping Stones

Lisa Humphrey, MD Director, Hospice & palliative Medicine, Nationwide Children’s Hospital

Melody Brown Hellsten, DNP, APRN, PPCNP-BC,CHPPN Pediatric NP Pediatric Palliative Care Team; Assistant Professor, Baylor College of Medicine, Department of Palliative Care, Texas Children’s Hospital

Gina Santucci, MSN, APRN-BC Pediatric NP, Pediatric Palliative Care Team; Clinical Faculty Baylor College of Medicine, Department of Palliative Care, Texas Children’s Hospital

Khaliah A. Johnson, MD Division Director, Pediatric Palliative Care, Assistant Professor, Department of Pediatrics, Emory University, School of Medicine

Natalie Coleman, MS, RN, CNL, CHPPN Pediatric Team Manager, Gilchrist Kids

Julie Ward, RN, BSN Pediatric Home Care Nurse, Gilchrist Kids

Erin Bull, RNC-NIC, BSN, CPLC, CHPPN Pediatric Home Care & Admissions Nurse, Gilchrist Kids

Adele Black, MSW, LCSW-C Pediatric Social Worker, Gilchrist Kids

Donald J. Hone, MDiv, BCC Pediatric Team Chaplin, Gilchrist Kids