How do you approach the pediatric patient who wants to be home for their death and is too medically complicated or unstable to get there in a private vehicle? Join us to learn more about the why, who, what and how of “palliative care transport”. We will share the foundational components and highlight experiences from the past decade of utilizing a standard Palliative Transport policy at a tertiary care center.

1. Define “Palliative Care Transport” – the why, who, and what
   ‍
2. Develop a strategy for providing a palliative care transport – the how
   ‍
3. Describe experiences from over a decade of having a palliative care transport policy

Jenni Linebarger, MD, MPH, is the Division Director of Palliative Care at Children’s Mercy Kansas City and an Associate Professor of Pediatrics at the University of Missouri – Kansas City. Dr. Linebarger directs the Palliative Care Team at Children’s Mercy, supporting a growing number of patients and families with serious illness. During her service on the American Academy of Pediatrics Section on Hospice and Palliative Medicine executive committee, she co-authored the AAP Clinical Report “Guidance for Pediatric End-of-Life Care”.

Samuel Kaplan MD, MPH is a board-certified pediatrician who recently completed a Pediatric Hospice and Palliative Medicine Fellowship at Children’s Mercy Kansas City and the University of Kansas Medical Center. Dr. Kaplan will soon be starting in a new role at Nemours Children’s Hospital as a member of their Diagnostic Referral Service. He received his MD and MPH from Tulane University in New Orleans and completed his residency at The Children’s Hospital of Pittsburgh where he was on the Pediatric Advocacy, Leadership, and Service (PALS) track.

Thurs, January 16, 2025

Transforming Communication with Motivational Interviewing: A Primer for Pediatric Palliative Care Clinicians

Rachel Kentor, PhD

‍

Tues, February 18, 2025

‍Psychosocial Screening, Assessment and Intervention: The Role of the Pediatric Palliative Care Social Worker

Esther Ammon, MSW, LCSW, APHSW-C

Stacy Remke, MSW, LICSW,APHSW-C

Akilah Burford, MSW

Allie Shukraft, MSW, MAT, APHSW-C

Erin Bonsall, Social Work Student

‍

Tues, March 18, 2025

‍Medical Marijuana Therapy in Pediatric Palliative Care

Sarah Friebert, MD, FAAP, FAAHPM

‍

Tues, April 22, 2025

Equipping Families to Engage in Shared Decision-Making

Kate Nelson, MD, PhD

Jennifer Siedman, M.Ed

‍

Tues, May 20, 2025

Navigating Difficult Conversations

Danielle Eaves, MPH, CCLS, CTRS, CPH,GC-C

Emmalee Tresnan, MSW, CCLS, GC-C

‍

Tues, June 17, 2025

Addressing Health Equity and Racism in Pediatric Serious Illness  

Khaliah Johnson, MD

Arika Patneaude, MSW, LICSW, APHSW-C

‍

Thurs, August 21, 2025

Deprescribing in Children: Is it Even Possible?

Melissa Hunt, PharmD, BCPPC

‍

Thurs, September 18, 2025

Living in the Gray: A Case Series of “Everything But” for the Chronically, Critically Ill Child and Their Families

Jaime Jump, DO, FAAP

Faith Kinnear, APRN, CPNP-AC

Katie Evans, LCSW
‍

Tues, October 21, 2025

Using Photo-Narratives to Enhance Humanistic Care

Jori Bogetz, MD

Colleen Young, Family Advisor

‍

Thurs, November 20, 2025

The Father Experience in the Pediatric Healthcare System

Chrissy Salley, PhD

Panel of Fathers

Dr. Kentor will provide an overview of the philosophy and principles of Motivational Interviewing (MI) and how they can be effectively applied in daily pediatric palliative care clinical practice, introducing foundational MI techniques and exploring strategies for navigating patient/family resistance. Additionally, ethical considerations will be discussed to help practitioners navigate complex decisions while supporting patient autonomy. Attendees will gain practical insights and resources for integrating MI into their clinical practice to enhance patient-and family-centered care.

1. Explain the philosophy of Motivational Interviewing (MI) and its relevance to pediatric palliative care.
   ‍
2. Acquire introductory familiarity with foundational MI techniques and identify opportunities for integrating these methods into routine clinical practice.
   ‍
3. Evaluate ethical considerations in utilizing MI with vulnerable populations (e.g., those facing end of life) and discuss strategies for navigating sensitive scenarios.

‍

Dr. Rachel Kentor is an Assistant Professor in the Department of Pediatrics at Baylor College of Medicine. As a pediatric psychologist embedded within the Palliative Care team at Texas Children’s Hospital, she delivers evidence-based assessment and intervention for children, adolescents, and young adults facing chronic and life-limiting medical conditions. Dr. Kentor earned her Ph.D. in Clinical Psychology with a focus on Healthcare Systems Management from Eastern Michigan University before completing her predoctoral internship and postdoctoral fellowship in pediatric psychology at Baylor College of Medicine/Texas Children’s Hospital in Houston, TX.

This presentation will highlight the role of integrated behavioral health on a pediatric palliative care team and the applications/implications for a pediatric palliative care social work practice. This discussion will focus on the role clarity, definition and operations grounded in PPC social work. A case example will be utilized.

1.  Review the model of integrated behavioral health and applications/implications for PPC social work practice.

2. Explore inconsistencies in PPC social work role definition and scope or work.

3. Identify ways to optimize psychosocial care on interdisciplinary PPC teams.

‍

In this session, we will discuss our clinic’s 6-year history of using medical marijuana for children with palliative care needs. We will explore basic pharmacology of medical marijuana and the endocannabinoid system, review indications and legal/regulatory implications, describe our clinic’s process, outline common pediatric drug-drug interactions with medical marijuana, and present curated retrospective data of our experience using this therapy.

1. Describe the basics of the endocannabinoid receptor system in humans and the physiologic effects of medical marijuana, especially in children.
   ‍
2. Outline general considerations and process for commencing and monitoring medical marijuana therapy in children with palliative care needs in one pediatric clinic.
   ‍
3. Discuss general diagnoses, dosing, risks/considerations including legal/regulatory concerns, monitoring, and documentation processes.

‍

Sarah Friebert, MD, is the founding director of the Haslinger Family Pediatric Palliative Care Center and the Expressive Therapy Center at Akron Children’s Hospital, and currently serves as the director of research as well as of the division’s accredited fellowship training program. Dr. Friebert received her medical training at Case Western Reserve University’s School of Medicine. She completed her residency in pediatrics at the Children’s Hospital of Philadelphia, and her fellowship in pediatric hematology/oncology at Rainbow Babies and Children’s Hospital.

She is Professor of Pediatrics at Northeast Ohio Medical University (NEOMED) and past president of Akron Children’s Hospital’s medical staff. In 2009, she was awarded the Children’s Miracle Network Achievement Award for her transformational work. In 2011, she became the first chair holder of the Sarah Elizabeth Friebert Pediatric Palliative Care Endowed Chair. She also founded and serves as faculty for the hospital’s Addiction Services Program. Since 2018, Dr. Friebert has held a certificate to recommend medical marijuana in the state of Ohio and has an active caseload of patients receiving medical marijuana therapy.

‍

Participating in decision-making is challenging for parents and can cause conflict. Underneath tensions often lie unarticulated expectations about how shared decision making should, or could, unfold.  Pediatric palliative care teams can help families recognize their own patterns and advocate for support of their decision-making needs.

1.  Articulate a non-medical metaphor to explain the process of shared decision-making to families.

2. Explore how to help parents identify their own decision-making preferences.

3. Offer strategies families can use when the clinician’s approach does not match the family’s processing style.

‍

Kate Nelson, MD PhD, is a clinician-scientist on the palliative care team at the Hospital for Sick Children and an Assistant Professor of Paediatrics at the University of Toronto in Ontario, Canada. She runs the IDEA lab (Integrating Data, Experience and Advocacy) to support families navigating medical uncertainty.

‍

Jennifer brings her experience as an educator and development professional to her role in engaging patient and caregiver organizations, industry partners and healthcare clinicians. A bereaved mom, she serves as president of Ben’s Dream: Sanfilippo Research Foundation and has worked with researchers and patient advocacy groups worldwide to fund and advance gene therapies to the clinical trial stage. In addition to co-authoring Supporting Families Considering Participation in a Clinical Trial, she has been recognized with a Boston Celtics Heroes Among Us award, Global Genes RARE Champion of Hope, and Sanofi TORCH Award.

Child Life Specialists Danielle Eaves Hernandez and Emmalee Tresnan will discuss the importance of providing support to pediatric palliative care families through difficult conversations and decisions. Developmental considerations will be discussed along with education on how the interdisciplinary team can facilitate conversations and empower families to have these honest discussions with their children. Case studies will be presented to highlight topics including diagnosis, hospitalizations, surgeries, treatment options, decline and end-of-life conversations.

1. Identify the importance of supporting all aspects of difficult conversations as members of the interdisciplinary care team.
   ‍
2. Review developmentally appropriate language and honest communication for children, young adults and family members.
   ‍
3. Discover one recommendation focus for improvement within your own clinical practice or institution.

‍

Danielle Eaves Hernandez is a Certified Child Life Specialist, Certified Therapeutic Recreation Specialist, certified in Public Health, and certified grief counselor in Jacksonville, Florida. Danielle has worked at Community Hospice & Palliative Care since her graduation from University of Florida in 2008. Danielle received her master’s in public health from University of North Florida in 2017. She works with pediatric hospice and palliative patients and their families in the community-based setting. Danielle has presented on the state level, nationally and internationally on the value child life specialists add to care for individuals and their families facing life-threatening and life-limiting illness. She is a Child Life Responder for Child Life Disaster Relief providing support to children in Northeast Florida and on deployments when crisis occurs. Danielle currently serves on behalf of the Association of Child Life Professionals on the National Coalition for Hospice and Palliative Care- Pediatric Coalition.  Her mission is to raise awareness of the role child life specialists serve in palliative and hospice care both as an integral member of the interdisciplinary palliative team as well as the importance of the child life specialty profession outside the hospital walls.

‍

Emmalee Tresnan is a Social Worker, Certified Child Life Specialist, and Certified Grief Counselor in Jacksonville, Florida. Emmalee has worked for the last eight years at Community Hospice and Palliative Care as a Child Life Specialist serving the adult and pediatric patients and children. Emmalee received her master’s in social work in August 2023 and completed her certification in grief counseling in 2024. Emmalee is working towards her clinical licensure in social work and is expected to become a Licensed Clinical Social worker in 2025. Emmalee is now working for the Tom Coughlin Jay Fund Foundation as the Program Manager serving pediatric oncology families. Emmalee has presented at local and national conferences on the importance of child life specialists in community-based settings. Emmalee serves as a child life responder for Child Life Disaster Relief, a Red Cross volunteer and a member of the National Coalition for Hospice and Palliative Care Pediatric Coalition. She has also been involved in supporting and running bereavement camps for children since 2017.    

‍

This session will consider the unique ways health inequalities impact children facing serious illness. Literature and narrative medicine will be used to highlight experiences of historically marginalized patients. Attendees will be introduced to the intersections of palliative care, communication and anti-racism skills to improve care for marginalized patients across the illness spectrum.

1. Consider the unique ways health inequities impact people facing serious illness.

2. Reflect on the experiences of historically marginalized patients using literature and narrative medicine.

3. Introduce palliative care, communication, and anti-racism skills to improve care for marginalized patients across the illness spectrum.

‍

Arika Patneaude is a Licensed Independent Clinical Social Worker, Ethnic Minority Mental Health Specialist and Cambia Sojourn Scholar. She has worked extensively in social services since 1992, including adult mental health, housing services for unhoused people, medical social work including solid organ transplant, grief and bereavement, and pediatric palliative care. Ms. Patneaude was born into a family that not only valued but actively engaged in social justice. It was here that her deep foundation for engaging in culturally responsive care and challenging systems of oppression as a clinician was defined and solidified.

Ms. Patneaude is a Clinical Assistant Professor at the University Of Washington School Of Social Work, a Clinical Ethicist, and the Director of the Bioethics, Palliative Care and Journey Programs at Seattle Children’s Hospital. Additionally, Ms. Patneaude provides consultation and coaching to individuals and programs on engaging in culturally responsive practice across settings.

Ms. Patneaude has been an invited lecturer, keynote speaker and panel member on such topics as supporting patients and families at the end of life, cultural humility, and cultural responsiveness in healthcare, inclusive of ethics, palliative care, mental health and grief and bereavement.   

‍

Often families of pediatric patients prefer continuing curative-focused or life-prolonging medications after hospice election with Concurrent Care. However, there is often a burden associated with having the opportunity to continue medications during hospice. In many cases the question is, "How can we provide the best care possible for these children without having unnecessary or unbeneficial medications as part of the treatment protocol?"  In this presentation, Melissa will discuss possible strategies for discontinuing non-essential medications as children approach end of life.

1. Identify medications to consider for discontinuation.
   ‍
2. Integrate strategies for discontinuing non-essential medications.
   ‍
3. Provide suggestions on how to frame this conversation with families/caregivers. 

‍

Melissa Hunt, PharmD, BCPPS is a board-certified pediatric clinical pharmacist who has worked with Optum Hospice Pharmacy Services where she served on interdisciplinary teams and provided medication and symptom management consults and education.  She serves on the Pediatric Advisory Council of the Alliance (formerly NHPCO), as co-chair of the Pediatric E-Journal workgroup, and chair-elect of the Pediatric Division of the National Coalition for Hospice and Palliative Care. She serves as instructor in the pediatric palliative care graduate certificate program at the University of Maryland.

There has been an increase in the number of patients pediatric providers care for that are chronically, critically ill. These patients often receive high level care from parents, guardians and nurses at home including advanced airway management, airway clearance, ventilator support, tube feedings and complex medication regimens. This is care that often cannot be provided on every floor in large pediatric specialty hospitals requiring admission to higher levels of care units. Due to the intensive care provided in these units it can be challenging to streamline communication amongst inpatient providers and provide care the parent or guardian feels is best for their child.

Parents may be labeled as challenging or in denial but often are struggling to agree on a path forward with their current providers. Strategies such as parallel planning, hoping for the best and preparing for everything else, shared decision making, setting limits of care when not in crisis, multidisciplinary rounds and family meetings are some of the ways to meet families where they are and progress their child's care forward. Admittedly it takes time to build this trust, and we will discuss some strategies for aligning with the family and overcoming barriers in cases where the provider team(s) doesn't agree or the patient has a significant change from baseline making prior goals unachievable.

We plan to illustrate these strategies through three case studies that highlight that alignment is not agreement; asking parents how they do it at home; making recommendations for time limited trials of interventions before revisiting sensitive topics like tracheostomy. We will discuss improved communication about family goals as a way to decrease moral distress of staff caring for these patients over multiple admissions as they get sicker and are admitted more frequently. Lastly, we'd like to demonstrate ways to respect the family wishes at the end of life including location of death, optimal symptom control and parental desires to present or not.

.1.   Explore strategies to understand a family's hopes, wishes and worries for their chronically and often critically ill child and what they perceive to be prolonging life versus prolonging death.

2.  Utilize a communication toolkit through case studies to help align with families and progress their child's care forward.

3.  Identify ways to help mitigate staff moral distress in caring for patients and families that may have different care plans at home.

4.  Recognize that families caring for chronically, critically ill children at home are likely to have thought about their child’s death. This should be explored during periods of calm and respected as much as possible when their child is dying.

‍

Jaime Jump is an Assistant Professor of Pediatrics in the Divisions of Critical Care and Palliative Care at Baylor College of Medicine/Texas Children’s Hospital. She is currently the medical directory of respiratory therapy at Texas Children’s Hospital, West Campus and the associate program director of the hospice and palliative medicine fellowship. Jaime is passionate about medical education, namely palliative care in the pediatric intensive care unit and care of the pediatric chronically critically ill population.

‍

‍

Faith Kinnear is a pediatric nurse practitioner who spent the first 6 years of her career as a bedside nurse traveling in pediatric oncology and bone marrow transplant. When Faith pursued her Master’s Degree at the University of Pennsylvania, she specialized in Pediatric Oncology and Palliative Care. Her NP career began at Children’s National Medical Center where she spent 5 years in Neuro Oncology. After relocating to Texas, Faith took the opportunity to learn how to care for the critically ill pediatric patient for five years, and for the last five years has had the honor of starting palliative care at West Campus and Woodlands Campus at Texas Children's Hospital while continuing to work in critical care. Her passion remains focused on caring for patients and families in the most challenging days of their lives.

‍

Katie Evans is a licensed clinical social worker with a career in both adult and pediatric medical social work. She attended The University of Texas at Austin where she completed both a bachelor’s degree and master’s degree in social work. She found her passion in pediatric medical social work, with a strong focus on critically ill and medically complex patients and families. Katie has had the opportunity over the last 5 years to learn and apply more long term palliative care interventions within the medically complex population and as part of a palliative care team. She continually strives to best support critically and chronically ill patients and families within her scope and as a member of their care team.

‍

Jori Bogetz and Colleen Young will explore what photo-narratives are and how they have been used in serious illness care for children and families. They will discuss research from parents and multidisciplinary clinicians about photo-narrative implementation and impact. They will also describe innovative work that is being done to incorporate photo-narratives into broadly accessible technology supports for patients and caregivers.

1. Define photo-narratives and how they are being used in pediatric serious illness care.

2. Explore a family's experience with photo-narratives to further humanistic care for their child.

3. Identify innovative ways photo-narratives are being incorporated into technology for broader access and implementation.

‍

Jori F. Bogetz is an Assistant Professor of Pediatrics at the University of Washington School of Medicine, the Associate Director of Research at the Treuman Katz Center for Pediatric Bioethics and Palliative Care, and an attending physician in pediatric palliative care at Seattle Children’s Hospital. Dr. Bogetz completed her pediatric residency and an Academic General Pediatrics Fellowship at Stanford University and a Pediatric Hospice and Palliative Medicine Fellowship at MGH/Harvard University/Boston Children’s Hospital. Her research focuses on improving care for children with severe neurological impairment and their families through interventions that support high quality communication and family-centered care. Dr. Bogetz has received funding for her research from the National Institutes of Health Eunice Kennedy Shriver National Institute of Child Health and Human Development, the Cambia Health Foundation, the National Palliative Care Research Center, the Seattle Children’s Research Institute, and the Lucile Packard Foundation for Children’s Health. Dr. Bogetz has published 50 papers in peer reviewed journals and contributed to 4 foundational textbooks in her field. She serves as a member-at-large on the National Academies of Science, Engineering, and Medicine Roundtable on Quality Care for Patients with Serious Illness.

‍

Colleen Young has been a Family Advisor at Seattle Children's Hospital for the past 2 years. Her son, Kevon, is 6 years old and was diagnosed with SPTAN1 Gene Mutation, a rare genetic condition. Kevon is nonverbal and uses a communication device. He is wheelchair dependent, has a GJ tube and a trach and vent. He was also diagnosed with epilepsy and microcephaly. Kevon loves music and being with his siblings. 

Colleen has worked closely with palliative care on various projects. As a family advisor, Colleen has been on many parent panels, facilitated parent panels, and participates with other families as part of a teaching program for first year residents. She enjoys being a family advisor because it is her safe space to share Kevon’s story and experiences. As a Family Advisor, Colleen has had the opportunity to meet many people from all walks of life, educate families and medical staff, and gain knowledge from other families’ experiences.

In addition to Kevon, Colleen has two other children who are nine and three. Her family loves exploring the outdoors and spending time together.

‍

Separate from how mothers and fathers may differ in their response to pediatric illness and disability is the question of whether and how clinicians respond differently to mothers and fathers. The perspective of fathers as caregivers is often underrepresented in exploration and discussion of how best to support caregivers navigating their child’s illness journey.  Fathers’ stories about their experience with the healthcare system, specifically as fathers, can be illuminating and prompt exploration of ways to engage them constructively on behalf of the well-being of the child and family. Dr. Chrissy Salley of Courageous Parents network will facilitate a conversation with fathers who have been there.

‍

1. Describe fathers’ experiences of how they have been engaged as caregivers during their child’s health journey.

2. Identify at least two ways to strengthen provider-caregiver relationships with fathers.

3. Create an understanding of the unique needs of father caregivers to their medically complex children.

Dr. Salley brings to CPN her experience as a psychologist with expertise in delivering support and intervention to parents and caregivers of children with complex medical needs. She is actively involved in the Society of Pediatric Psychology, Division 54 of the American Psychological Association. In addition to co-authoring the Standards of Psychosocial Care for Parents of Children with Cancer, she has founded a professional group of pediatric psychologists who are committed to supporting parent caregivers through clinical intervention, research, education and outreach. Chrissy also collaborates with colleagues nationally and internationally on efforts to improve the illness experience for children and their families and publishes on these topics. Chrissy received her PhD in Clinical Psychology from The Ohio State University.