Kari Kendall, MD / Dominic Nardi, MD / Jessica Zavadil, MD, PhD

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Addressing shifting goals of care near the end of life is a challenge that is significantly complicated by the prognostic uncertainty inherent to neonatal neurologic injuries. Despite best efforts to prepare families for a range of possible outcomes, patients often surprise us, and families’ beliefs about their illness and goals of care may evolve over time. In this presentation, we will utilize an impactful clinical case to demonstrate the importance of ongoing assessment of a family’s understanding and goals of care. We will additionally describe strategies to address family distress in the face of unclear prognostic information and to navigate shifting goals of care as patients near end of life.

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1. To explore the challenges of prognostic uncertainty in neonatal neurologic conditions.

2. To discuss the importance of and strategies for continual re-evaluation of goals of care over time, to ensure alignment of the treatment plan with potentially shifting goals of care.

3. To discuss tools for addressing family distress in the setting of uncertainty.

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Kari Kendall, MD

Dr. Kendall is a Pediatric Palliative Care physician at Riley Hospital for Children and an Assistant Professor of Clinical Pediatrics at Indiana University School of Medicine. Her special interests within Pediatric Palliative Care include ethics and shared decision-making in Palliative Care and education. Outside of work, she enjoys cooking, live music, and exploring new restaurants.

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Dominic Nardi, MD

Dr. Nardi received his medical degree from the University of Missouri-Kansas City. He then went on to complete his Pediatrics residency at Washington University in St. Louis and Palliative Care fellowship at the University of Utah. He is a Pediatric Palliative Care physician at Riley Hospital for Children and an Assistant Professor of Clinical Pediatrics at Indiana University School of Medicine. His special interests within Palliative Care include clinical ethics and symptom management in children with severe neurologic impairment.  

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Jessica Zavadil, MD, PhD

Dr. Zavadil is a Pediatric Palliative Care physician at Riley Hospital for Children and an Assistant Professor of Clinical Pediatrics at Indiana University School of Medicine. Her special interests within Pediatric Palliative Care include pediatric hospice access and the shared decision-making process. Outside of work, she enjoys cooking and hiking.

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‍_{Originally presented in January 2026.}

Jenni Linebarger, MD, MPH, FAAP, FAAHPM / Samuel Kaplan, MD, MPH

Description:

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.
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Learning Objectives:

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

Jenni Linebarger, MD, MPH, FAAP, FAAHPM

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

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.

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_{Originally presented in November 2024.}

Kim Mooney-Doyle, PhD, RN, CPNP-AC / Lisa C. Lindley, PhD, RN, FPCN, FAAN / Erika Ventura Castellon, BSN, RN

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‍Youth with serious illness are increasingly moving into adolescence and young adulthood. The process of pediatric-to-adult transition and the experiences of youth and their families during this transition has not been fully explored. In this webinar, we will review evidence to date on the pediatric-to-adult health transition for adolescent and young adults with serious illnesses and describe potential impacts of social determinants of health.

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Objectives:

1. Describe potential impacts of Social Determinants of Health on pediatric-to-adult health transition

2. Discuss how families are both a determinant of health and affected by social determinants of health during pediatric-to-adult health transition

3. Consider the relevance of Social Determinants of Comfort to the care of youth and their families across the pediatric-to-adult health transition trajectory

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Kim Mooney-Doyle, PhD, RN, CPNP-AC

Kim Mooney-Doyle, PhD, RN, CPNP-AC
Dr. Kim Mooney-Doyle is an assistant professor at the University of Maryland School of Nursing in Baltimore, MD. The goal of her research is to enhance family health in the context of serious pediatric illness and medical complexity. She is particularly interested in promoting health equity for families. Her research has been funded by the National Institutes of Health, the University of Maryland School of Nursing, and the Oncology Nursing Society Foundation.
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Erika Ventura Castellon, BSN, RN

Erika Ventura Castellon - BSN, RN
Ms. Erika Ventura Castellon is a pediatric nurse in solid organ transplantation at Medstar-Georgetown University Hospital in Washington, D.C. and a third-year PhD student at the University of Maryland School of Nursing. She explores the experiences of Latino/a/x caregivers of children who receive solid organ transplants and the predictors of their quality of life.

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Lisa C. Lindley, PhD, RN, FPCN, FAAN

Lisa Lindley, PhD, RN, FPCN, FAAN
Dr. Lisa Lindley is a child health services and policy researcher whose work has been funded by the NIH and AHRQ. Her research focuses on health care systems and policy interventions that promote high quality, accessible, and equitable care for children and their families at the end of life.

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_{Originally presented in June 2024.}

Kristen Moyer, MD, MTS, FAAP / Ann Pilarte, MSW, LSW, APHSW-C

Overview:

‍Community-based hospice organizations are essential in providing home-based support to children and families facing life-limiting illness, especially those living in rural communities. Using case vignettes and the experiences of one community-based pediatric hospice interdisciplinary group, this webinar will explore hospice best practices for communication and collaboration with a child’s whole care team -- from hospital to community to home -- and how hospice organizations might leverage internal and community-based resources to support families, including volunteers, bereavement specialists, and philanthropic or charitable organizations.

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Learning Objectives:

1. Discuss hospice best practices in assisting a child and family as they transition from the acute care setting (hospital) to home.

2. Explore opportunities for engagement and collaboration between hospice and the major "players" of a child's care team.  

3. Describe how hospice organizations might leverage resources to support pediatric patients and families with anticipatory grief and assist with legacy building.

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Presenters:

Kristen Moyer, MD, MTS, FAAP

Dr. Moyer completed her undergraduate and graduate medical training at the University of North Carolina-Chapel Hill and a Master of Theological Studies from Duke Divinity School. Dr. Moyer went on to complete residency in Internal Medicine-Pediatrics and served an additional year as chief resident in Internal Medicine at Yale-New Haven Hospital. She completed her training in 2018 with a combined adult/pediatric Hospice and Palliative Medicine fellowship at The Ohio State University Medical Center and Nationwide Children’s Hospital. Dr. Moyer has practiced both consultative pediatric palliative medicine in the hospital setting (Nationwide Children’s Hospital, Columbus, OH, 2018-2020) and community-based adult and pediatric palliative medicine and hospice (Hospice & Community Care, Lancaster, PA, 2020-present). She currently serves as Pediatric Medical Director for Hospice & Community Care, overseeing the growth and development of the Sunflower Pediatric Program. She also serves on the board of directors of the Pediatric Palliative Care Coalition. Dr. Moyer and her husband have three children, ages 5, 3, and 1.

Ann Pilarte, MSW, LSW, APHSW-C

Ann is a licensed, master level social worker at Hospice and Community Care in Lancaster, PA.  Ann holds a certification as a Palliative and Hospice Social Worker by the Social Work Hospice & Palliative Care Network and a multidisciplinary certificate in Pediatric Palliative Care from the Shiley Haynes Institute.  She has attended the ELNEC Pediatric Summit.  Ann received her Masters of Social Work from West Virginia University and her Bachelor of Arts in Sociology from Susquehanna University.

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_{Originally presented in May 2023.}

This presentation will describe how to conduct pediatric advance care planning safely, the best timing from the adolescent patient's perspective, and the immediate and one-year outcomes from participating in the FACE-HIV and FACE-TC randomized clinical trials.

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Maureen Lyon | Children’s National Medical Center & The George Washington University School of Medicine and Health Sciences

Overview:

This presentation will describe how to conduct pediatric advance care planning safely, the best timing from the adolescent patient's perspective, and the immediate and one-year outcomes from participating in the FACE-HIV and FACE-TC randomized clinical trials. The primary outcome is the family's accurate understanding of their adolescent's end-of-life treatment preferences. Secondary outcomes include participant satisfaction, willingness to limit treatments in some end-of-life situations, and families' appraisal of their caregiving. The intersectionality of gender and poverty on study outcomes will also be presented. Implications and Next Steps will be discussed.
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Learning Objectives:

1. Describe methods for conducting pediatric Advance Care Planning (pACP) safely

2. Describe the FAmily CEntered (FACE) pediatric Advance Care Planning (pACP) intervention for adolescents with HIV/AIDS & Cancer

3. Describe the immediate and long-term efficacy of FACE pACP on patient and family-reported outcomes, as well as documentation in the electronic health record
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About the Presenter:

Maureen Lyon, Ph.D., FABPP | Children’s National Medical Center & The George Washington University School of Medicine and Health Sciences

Dr. Maureen Lyon is a Professor of Pediatrics in the Department of Pediatrics at George Washington University School of Medicine and Health Sciences; and Clinical Health Psychologist at the Center for Translational Research at Children’s National Hospital in Washington, D.C. Dr. Lyon’s research focuses on advance care planning interventions for persons living with serious illness, including cancer and HIV. Recently completed research include a National Institute of Nursing Research (NINR)/National Institutes of Health (NIH) funded 5-year clinical trial of FAmily CEntered pediatric advance care planning for teens with cancer (FACE-TC pACP); an NIH administrative supplement to examine the intersectionality of gender and poverty in advance care planning outcomes; and an American Cancer Society funded study adapting the FACE protocol for Spanish speaking teens with cancer. Our ongoing trial is a NIH/NINR funded 2-year pilot trial of FACE-Rare for family caregivers of children with rare diseases who are unable to communicate.

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_{Originally presented in August 2022.}

‍Creating and Applying Individualized Transition Plans: Learning Your New Normal

Sue McCarthy, Bereaved Parent & Advocate | Kate Donovan, Boston Children's Hospital | Denise Currier, Boston Children's Hospital | Janet Duncan, Courageous Parents Network

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‍Overview:

Teaching is an integral part of the discharge process especially for the child being discharged from a high-acuity unit or ICU with new technologies, medications or therapies . Clinicians often focus on the technical aspects of interventions such as feedings, changing dressings or managing breathing supports. What is often overlooked are the real life realities of a medicalized home - where the supplies will be kept or the machines plug in? How will the parents manage the complex care and coordination necessary all by themselves?

Developed by a parent and clinician partnership, the CAITLYNN Project, uses family experiences to address the increased care requirements and safety concerns associated with the transition from hospital to home for the medically complex child.
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Learning Objectives:

1. Understand the gaps in the traditional discharge process and the impact on the lived family experience.

2. Learn about the CAITLYNN Project’s pre-discharge home assessment model

3. Identify what is the ‘medicalized home’ from the family perspective
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About the Presenters:

Susan McCarthy, Bereaved Parent, Advocate

Experience/Areas of Interest: complex medical care, pediatric palliative care, home care nursing, epilepsy, home parenteral nutrition program, and bereavement

Sue lives in Walpole with her husband, Joe, and is a mom to three children: Matthew, Daniel, and Caitlin. At the age of 1, Caitlin was diagnosed with mitochondrial disease and at the age of 5, with Rett Syndrome. Caitlin spent a great deal of time at Boston Children’s, both inpatient and outpatient, and received excellent care from the Gastroenterology, Epilepsy, Complex Care, Palliative Care, Neurology, Nephrology, Orthopedics, Endocrine, Home Parenteral Nutrition, and the C.A.P.E team. Sadly, Caitlin passed away in March 2020. Sue and Joe remain deeply grateful to all of the doctors and nurses at Boston Children’s who cared for Caitlin for so many years, and look forward to continuing to support the hospital.

Sue is particularly passionate about projects which aim to help children with complex medical needs both inpatient and at home. In many ways, Sue pioneered a hospital-at-home model for Caitlin, doing the research and advocacy work so that Caitlin’s needs were met and so that Caitlin was able to live as normal a life as possible at home with her family. Sue hopes to use her knowledge and experience to help other families in similar situations.

Connected with her work as an FAC member, Sue currently serves on the Practice, Quality, and Outcomes Council, Emergency Department Specialty FAC, the Safety Committee for Central Lines and Catheters, the IPASS/FAC family centered rounds project, and presented as a parent voice at the 2019 Patient Safety Forum.
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Kate Donovan, Boston Children's Hospital

Kate is the Clinical Director of Innovation for the Innovation Digital Health Accelerator, Simulation Program, and Department of Pediatrics at Boston Children’s Hospital. As a serial idea generator, she works to combine technology and human-centered design to improve the healthcare experience for patients and families both in the hospital and home environment. Dr. Donovan has been instrumental in bringing extended reality (XR) technology to Boston Children’s for a variety of use cases including patient distraction and clinical education. She is the founder of the mARk app, an augmented reality (AR) smartphone application that places durable medical equipment in the home environment to expose patients and families to the size requirement, use, and sound prior to delivery. Kate is also co-founder of Health Voyager, a virtual reality (VR) app dedicated to educating children undergoing gastroenterology procedures on their personalized disease findings.  Kate heads Hacking Pediatrics, a group whose mission is to bring together passionate innovator from diverse areas of expertise such as medicine, technology, and business to build solutions for children and their families through healthcare hackathons.

Dr. Donovan holds a BS in chemistry and biology from Harvard University, a MS in computer science from MIT, an MBA from MIT Sloan School of Management, and a Ph.D in technology and innovation from MIT. Continually inspired by our future leaders, she is actively involved in numerous youth community programs throughout the Boston area and works diligently to expose children of all ages and backgrounds to music and diverse STEM education.
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Denise Currier, Boston Children's Hospital

Denise is a Pediatric Nurse Practitioner in the Intermediate Care Program at Boston Children’s Hospital. In 1998 Denise graduated from the Boston College (BC) Connell School of Nursing with a Bachelor's in Nursing. As a new nurse, Denise worked at Tuft’s Medical Center in Boston on the inpatient adult psychiatric unit where she had worked as a mental health worker during college.

Denise’s goal was always to work with children and in 1999 she was given the opportunity to work at Boston Children’s on an inpatient pediatric medical unit specializing in pulmonary and endocrine medicine. In 2004 Denise joined the inaugural team to help establish the Intermediate Care Program (ICP), a 4 bed higher intensity medical unit focusing on the acute care of patients with bronchiolitis, status asthmaticus, and diabetic ketoacidosis. Upon completion of her Master’s of Nursing in the Pediatric Nurse Practitioner Program from BC in 2005, Denise worked with leadership to establish a new PNP role in the ever growing ICP. During her over decade and a half career in the ICP, Denise has gained expertise in the care of high acuity pediatric patients and has also established herself as a resource for those caring for high complexity patients.
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Janet Duncan, Courageous Parents Network

Janet is a Certified Pediatric Nurse Practitioner who helped found the Pediatric Advanced Care Team of Dana-Farber Cancer Institute and Boston Children’s Hospital. She worked as a bedside nurse and educator with families who had children diagnosed with cancer and later in her palliative care role, with families of children with diverse diagnoses of a serious illness. She continues to feel passion and find meaning in  supporting families and children through her work with CPN.

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_{Originally presented in January 2022.}

Conrad Williams, MD, Kristin James, LCPC

Overview:

With the growing emphasis on value-based payments in healthcare, there is significant potential for enhanced access to pediatric palliative care services. This discussion will highlight the challenges to access of PPC services in traditional reimbursement models, and it will discuss existing state models that have been developed. Finally, a process for exploring policy and legislative opportunities to develop alternative payment strategies will be discussed.

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Objectives:

1. Describe the barriers to access of PPC services due to current healthcare reimbursement models

2. Discuss existing alternative payment strategies for PPC services

3. Develop a structured process for exploring policy and legislative opportunities to develop alternative payment strategies for PPC delivery

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About the Presenters:

Conrad Williams, MD, FAAP, FAAHPM, is the medical director of the palliative care program at the Medical University of South Carolina Children’s System. He leads an interdisciplinary team in caring for children with serious illnesses and their families. Prior to joining the faculty at MUSC, he served as medical director for the PANDA Palliative Care Team at Children’s National Health System in Washington, DC. He also was the medical director for Chesapeake Kids, the pediatric team at Hospice of the Chesapeake in Maryland.

Kristin James, LCPC is the Executive  Director with Greater Illinois Pediatric Palliative Care Coalition (GIPPCC).  She has specialized in working with families coping with illness, trauma and  loss for over twenty five years. Kristin has provided clinical consultation  and extensive training, advocacy and education to medical teams, community  agencies, and school systems throughout the Chicagoland area.  Kristin  developed a benchmarked program for Pediatric Bereavement Care at Lurie  Children’s Hospital/Children’s Memorial Hospital and is nationally recognized  as an expert in grieving children and bereaved parents.

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_{Originally presented in November 2021.}

Lisa Lindley

Overview:

Until the Patient Protection and Affordable Care Act (ACA) was enacted ten years ago, there were two care choices for children given six months to live: continue treatment or cease treatment and enter hospice. The ACA added a third choice by mandating concurrent care be offered to Medicaid and Children’s Health Insurance Program (CHIP) patients. However, there is limited evidence about the impact of this end-of-life care delivery model on patient and family outcomes.

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Objectives:

1. Review the medical, nonhospice services used by children using concurrent hospice care.

2. Examine the effect of concurrent hospice care on care continuity.

3. Examine the effect of concurrent hospice care on care coordination.

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About the Presenter:

Lisa Lindley, PhD, RN, FPCN, FAAN is a child health services and policy researcher. Her research focuses on health care systems and policy interventions that promote quality, accessible care for children and their families at end of life. Dr. Lindley has expertise in advanced statistical techniques, data management, and claims-based data. She is the recipient of a NIH pre-doctoral fellowship (T32), AHRQ dissertation award(R36), NIH career development award (K01), and NIH research project grant (R01)in support of her research work.

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_{Originally presented in July 2021.}

Kerri Padgett, Janet Duncan, Julie Hauer, Alyssa Siegel, Barbara Swoyer

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Overview:

Before a medically complex, fully dependent child turns 18 years old, parents need to make a mental shift to address the needs of the child as an adult. To continue making medical decisions for a fully dependent adult child, legal guardianship will need to be addressed. Also, the child's medical care will likely need to be transitioned to adult providers. These processes can be daunting and overwhelming and parents look to providers for support. Pediatric providers need to understand the logistical and the emotional challenges faced by families. This will allow for improved outcomes and for the patient, family and provider.

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Objectives:

1. Identify 3 essential things to consider for the fully dependent child turning 18 years old

2. List 3 strategies to create a pathway for transition of medical care from pediatrics  to adult

3. Understand the supports families need during this transition process and beyond

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About the Presenter:

Kerri Padgett, Community Manager, worked with  children with complex medical needs for many years before becoming a parent  to one herself. Since Kai’s passing, Kerri has remained a part of this  community through her work as a pediatric massage therapist, blogger and  advocate for families of children with complex medical needs. 

Janet Duncan, MSN, RN, CPNP, is a Certified Pediatric Nurse Practitioner who helped found the Pediatric Advanced Care Team, a pediatric palliative care consult service of Boston Children’s Hospital and Dana-Farber Cancer Institute in 1997. She retired in 2017 and began doing medical provider outreach for Courageous Parents Network.

Julie Hauer, MD ,Julie is board certified in Pediatrics and in Hospice and Palliative Medicine. Julie is currently the medical director of a long-term and respite care facility for children and young adults with severe neurological impairment and associated complex care needs. She has written a book on the medical and palliative care needs of such individuals: Caring for Children Who Have Severe Neurological Impairment: A Life With Grace.

Alyssa Siegel, MD, is a general pediatrician and the Clinical Director of New Jersey Transition to Adult Coordinated Care at The Children's Hospital of Philadelphia. NJTACC is a consultation program designed to assist patients with intellectual and developmental disabilities navigate the challenging transition from pediatric to adult medical care and social support services. Dr. Siegel was a member of the workgroup that developed website materials for Courageous Parents Network entitled, Planning Transition from Pediatric to Adult Providers for the Fully Dependent Child.

Barbara Swoyer, Parent, is a volunteer, advocate, blogger and written contributor for the community of families caring for children with rare disease. She and her husband are the parents of two adult children, the youngest of whom has a diagnosis of Dravet Syndrome and Secondary Mitochondrial Dysfunction. Barbara is active with the Dravet Syndrome Foundation as a member of the Caregivers of Adults with Dravet Syndrome advisory group. She has a particular interest in palliative care and health care transition issues, and is a founding parent advisory board member and frequent contributor for the Courageous Parents Network.

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_{Originally presented May 2021.}

Marta Friedman, Christy Torkildson

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Overview:

This webinar will offer an overview of using POLST/MOLST in pediatric care, and is applicable to both seasoned and novice POLST users. The presenters will focus on how a POLST can be used as a tool to speak with parents about goals of care and what different states are doing with POLST, across different settings of care.

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Objectives:

1. Participants will be able to describe different ways to identify the three main sections of the POLST/MOLST Form

2. Participants will be able to discuss the value of this tool in multiple settings

3. Participants will be able to discuss the use of this tool in defining goals of care

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About the Presenters:

Marta Friedman, LCSW, ACHP-SW, JD is currently with the PACT (Palliative Care) team at UCSF Benioff Children's Hospital Oakland. She is the Social Worker on the PACT Team and the Bereavement Coordinator for the hospital. She has been working in Palliative Care for more than 18 years, engaging in direct service, program and policy development, education, and advocacy on both the micro and macro levels. Marta was an early adopter of the POLST form when it first became available in2009.Providing the venues and tools for voices to be heard is a constant and immutable priority.

Christy Torkildson, PhD, RN, PHN, FPCN is a palliative care provider with 20+ years experience in multiple settings focused on palliative care and hospice with a focus on pediatrics. She worked with the Coalition for Compassionate Care in California on the original implementation of the POLST in the in the mid 2000s and most recently worked with the Coalition to update the curriculum and train healthcare professionals in the use of the POLST for the pediatric population.

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_{Originally presented in March 2021.}

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

Overview:

In this talk, we will review the current state of pediatric palliative/hospice care, including the overlap between palliative and complex care principles. We will explore the medical neighborhood as a common ground to offer seamless, integrated care across the continuum for children with serious illness, incorporating palliative/hospice principles as well as primary care. Strategies to conceptualize collaborative involvement without duplication or territoriality will also be examined.

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Objectives:

1. Accurately describe the concept and purpose of the medical neighborhood for seriously ill children

2. Identify three unique benefits pediatric palliative and hospice care can provide to the medical neighborhood for seriously ill children.

3. Describe the role of primary palliative care in the care of children with medical complexity, and how pediatric palliative and hospice care teams can facilitate this role

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About the Presenter:

Sarah Friebert, MD, is the founder and director of the Haslinger Family Pediatric Palliative Care Center and the Expressive Therapy Center at Akron Children’s Hospital. The Center hosts an accredited palliative care fellowship program and held Advanced Certification in Palliative Care from The Joint Commission. 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. She is consulting Pediatric Medical Director for Hospice of the Western Reserve and for the National Hospice and Palliative Care Organization, and Program Director in the Center for Healthcare Services Delivery Research and Innovation at the Rebecca D. Considine Research Institute at Akron Children's Hospital.

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_{Originally presented in February 2021.}

Kim Bower, Debra Lotstein, Krishelle Aurele

Overview:

In this webinar we will define telemedicine (TM) and review what is known about it from the literature. Through sharing examples from two different pediatric palliative  care (PPC) practices, we will review key aspects of providing TM and share outcomes from these experiences. We will also look forward to the use of TM in the future as medicine generally, and PPC specifically, adapts to a post-COVID world.

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Objectives:

1. Define telemedicine within in the context of telehealth interventions

2. Summarize the literature on the use of TM for PPC  

3. Use two example of TM programs to demonstrate key elements of implementing this model of care and explore future opportunities and challenges in the use of TM for PPC in a post-COVID world

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About the Presenters:

Kim Bower, MD - Medical Director, San Diego office of Blue Shield of California Promise Health Plan
Rady Children’s Hospital

Dr. Kim Bower is the medical director for the Palliative Care Program at Blue Shield of California and is a palliative care physician at Rady Children’s Hospital San Diego(RCHSD). She lead the development of the telemedicine within the RCHSD home-based palliative care program and the expansion of telemedicine into the outpatient clinics.

Debra Lotstein, MD, MPH - Children’s Hospital Los Angeles (CHLA) 
Keck School of Medicine, University of Southern California

Dr. Debra Lotstein is Chief of the Division of Comfort and Palliative Care in the Department of Anesthesiology Critical Care Medicine at Children’s Hospital Los Angeles (CHLA) and an Associate Professor of Clinical Pediatrics at the Keck School of Medicine, University of Southern California. Dr. Lotstein oversees the clinical, educational and research activities of CHLA’s interdisciplinary efforts, and is an attending physician for the team’s inpatient and outpatient clinical services. Her research focuses on improving access to home-based hospice and palliative care for children with serious illness. 

Krishelle Aurele, MD - University of California, San Diego Jacobs Medical Center
Rady Children’s Hospital

‍Dr. Krishelle Marc-Aurele works as a neonatologist at the University of California, San Diego Jacobs Medical Center and a palliative medicine specialist at Rady Children’s Hospital. She is an Associate Professor of Pediatrics and the Program Director for the Neonatal-Perinatal Fellowship

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_{Originally presented in January 2021.}

Lisa C. Lindley, PhD, RN, FPCN, FAAN

This webinar will be a discussion of the benefits and challenges of pediatric concurrent care over the last decade.

Objectives:

1. Review background of concurrent care
2. Identify challenges and benefits of concurrent care
3. Explore implication of concurrent care

‍About the Presenter:

Dr. Lindley is a child health services and policy researchers. Her research focuses on health care systems and policy interventions that promote quality, accessible care for children and their families at end of life. Dr. Lindley has expertise in advanced statistical techniques, data management, and claims-based data. She is the recipient of a NIH pre-doctoral fellowship (T32), AHRQ dissertation award (R36), NIH career development award (K01), and NIH research project grant (R01) in support of her research work.

_‍

_{Originally presented in August 2020.}

Dr. Sarah Friebert, MD

In this talk, we will review the current state of pediatric palliative/hospice care, including the overlap between palliative and complex care principles. We will explore the medical neighborhood as a common ground to offer seamless, integrated care across the continuum for children with serious illness, incorporating palliative/hospice principles as well as primary care. Strategies to conceptualize collaborative involvement without duplication or territoriality will also be examined.

‍

Objectives:

1. Accurately describe the concept and purpose of the medical neighborhood for seriously ill children

2. Identify three unique benefits pediatric palliative and hospice care can provide to the medical neighborhood for seriously ill children.

3. Describe the role of primary palliative care in the care of children with medical complexity, and how pediatric palliative and hospice care teams can facilitate this role

‍

About the Presenter:

Dr. Sarah Friebert, MD

Sarah Friebert, MD, is the founder and director of the Haslinger Family Pediatric Palliative Care Center and the Expressive Therapy Center at Akron Children’s Hospital. The Center hosts an accredited palliative care fellowship program and held Advanced Certification in Palliative Care from The Joint Commission. In 2012, the Haslinger Center received the Circle of Life Award from the American Hospital Association, a national award honoring innovative programs in palliative and end-of-life care. 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. From 2012-2015, Dr. Friebert was a co-Principal Investigator for a Centers for Medicare & Medicaid Health Care Innovation Award examining care coordination for children with complex medical conditions. She is consulting Pediatric Medical Director for Hospice of the Western Reserve and for the National Hospice and Palliative Care Organization, and Program Director in the Center for Healthcare Services Delivery Research and Innovation at the Rebecca D. Considine Research Institute at Akron Children's Hospital. She also founded and serves as faculty for the hospital’s Addiction Services Program.

_{Originally presented in April 2020.}

Parag Shah, MD

The webinar will give an introduction to health care transition for medically complex children to adult care. This will include formal and academic definitions and best practices, along with a review of the common tools used by pediatric institutions to help ensure patients receive a smooth transition.  We will cover some leading institutional resources providing support for transition to adult care, and finally cover some of the many social programs that exist and change when youth enter the adult world.

Objectives:

1. Express the formal definition of "transition to adult care"

2. Describe some facilitators of good transition practices

3. List some resources available to help families and providers plan for transition to adult care

About the presenter:

Parag Shah, MD, MPH Medical Director, Chronic Illness Transition Program Ann & Robert H. Lurie Children's Hospital of Chicago

Dr. Shah is a general pediatric hospitalist working at the Ann & Robert H. Lurie Children's Hospital of Chicago. He serves as the medical director of the Chronic Illness Transition Program, which runs a life skills program, a transition clinic and a workforce development program for young adults to help them ease their transition to adulthood and adult healthcare.  In addition, the team conducts consults to other medical divisions and collaborates with community organizations to enhance transition to adult care services.

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_{Originally presented in September 2018.}

Jody Chrastek & Diane Knust

Many communities across the country are facing a shortage of pediatric nurses and social workers needed to adequately address the needs of children in their communities who could benefit from hospice and palliative care services.  In response to this growing gap, hospice and home health agencies are working to train and prepare their adult staff to care for children.

This webinar will provide practical and evidence-based information and resources on how agencies and their staff can increase their competencies and confidence in providing pediatric palliative care and in turn help to ensure that children and families in their area have the support and care they need to live life as fully as possible and remain connected and safe at home in their communities.

About the presenters:

Joan "Jody" Chrastek, RN, DPN, CHPN, FPCN PACCT Coordinator Fairview Home Care and Hospice, Minnesota

Jody Chrastek is the PACCT (Pediatric Advanced Complex Care Team) Coordinator for Fairview Home Care and Hospice. The program works in close collaboration with University of Minnesota Masonic Children’s Hospital. She was born and brought up in India and trained as a nurse in Scotland. She has worked as a midwife and hospice nurse in the UK, India and the USA with adults and children. She has worked in hospice and palliative care for over 30 years, 20 of those in Pediatrics. Her Doctorate in Nursing Practice work focused on Pediatric palliative care. She has published and presented nationally and internationally on hospice and palliative care particularly in pediatrics.  She has contributed to text books such as the most recent Oxford Textbook of Palliative Care for Children and the Textbook of Interdisciplinary Pediatric Palliative Care.pediatric residents and medical students. Diane Knust, MSW, LISW Medical Social Worker Fairview Home Care and Hospice, Minnesota

Diane Knust, MSW, LISW has been a social worker for 30 years. Diane’s experience is 1/3 management/consulting, 1/3 adjunct professor, and 1/3 direct practice.  Her practice experience includes working homeless adults and children, developing subsidized housing programs, and employment programs with Catholic Charities.   Her career switched populations in 1995 when she became case management program manager for the Minnesota AIDS Project, supervising case management for adults and children living with HIV, developing pediatric case management program, and Midwest HIV pediatric monthly consultation program as well as other trainings. Diane spent 12 years teaching at the University of Minnesota, University of St. Catherine, Metropolitan State University, and University of Wisconsin in River Falls.  Courses developed and taught included: violence against women and children, domestically and internationally at the bachelor and graduate level, chemical dependency 101, International Social Work 101, Case Management with Special Populations and Senior Seminars for field work.  Diane is currently working as a medical social worker for Fairview Home Care and Hospice and has created social services component to our PACCT team.  Diane has been published in various HIV social service journals and violence against women journals

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_{Originally presented in March 2018.}

Deborah A. Lafond & Kathy Perko

Caring for infants, children, adolescents and young adults with serious illnesses is challenging, especially when defining goals of care. Advance care planning (ACP) can be complex due to multiple factors, such as surrogate decision makers, developmental changes over time, uncertain trajectories of pediatric serious illness, and lack of knowledge regarding how to begin ACP conversations, how to talk with parents/guardians who may be young themselves with little experience with death, and often ACP discussions need to happen multiple times due to developmental and disease changes.  This webinar will discuss creative ways to engage patients and families in discussions to document goals of care and how to mitigate challenges in ACP.

OBJECTIVES:

1. Define the similarities and differences between advance care planning, advanced directives and Medical Orders for Life Sustaining Treatments (MOLST)/Physician Order for Life Sustaining Treatments (POLST)

2. Define terminology frequently used when discussing resuscitation status with patients and families

3. Discuss strategies for children, adolescents and young adults to discuss and document goals of care

4. Identify strategies for non-verbal and neurologically impaired children, adolescents and young adults to discuss and document goals of care

About the presenters:

Deborah A. Lafond, DNP, PPCNP-BC, CPON, CHPPN, FHPN Clinical Director PANDA Palliative Care Team Children’s National Health System Washington, DC

Dr. Lafond is a board-certified Hospice and Palliative Pediatric Nurse and is the Clinical Director of the PANDA Palliative Care Team at Children’s National Health System in Washington, DC.  She has been an active APHON member since 1990 and is the past chair of the APHON Evidence Based Practice and Research Committee.  She completed her DNP studies in 2012 at the University of Maryland with a research focus in early integration of palliative care in pediatric hematopoietic stem cell transplant. She was selected as a Sojourns Scholar in palliative care with the Cambia Health Foundation in 2015 to present. Dr. Lafond’s current projects include participating as a co-investigator with Dr. Pamela Hinds on an RO1 funded study titled “Being a Good Parent to My Seriously Ill Child” and investigating the experience of primary palliative care on families and clinicians using photovoice methodology.

Kathy Perko, MS, PPCNP-BC, CPON, CHPPN, CPLC, FHPN Program Director Bridges Pediatric Palliative Care OHSU Doernbecher Children’s Hospital Portland, Oregon

Kathy Perko is a pediatric nurse practitioner and the Program Director of Bridges Palliative Care at OHSU Doernbecher Children’s Hospital in Portland, OR.  Kathy is both an ELNEC and EPEC (Education in Palliative and End of Life Care-Pediatrics) national trainer.  She is certified in Pediatric Hospice and Palliative Care and Perinatal Loss Care (through NBCHPN).   In her role as Program Director of the Bridges Program, she provides pain and symptom management, as well as, psychosocial and spiritual support to children and their families, and facilitates conversations about palliative and end of life care with care providers both in the hospital and the community. Ms. Perko has authored chapters in the Pediatric Oncology Palliative and End-of-Life Care Resource manual, published by APHON.  And she is well known locally and nationally as a speaker in pediatric palliative care.

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_{Originally presented in April 2019.}

Chrissy Salley, PhD / Panel of Fathers

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.

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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.

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Chrissy Salley, PhD

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.

Panel of Fathers

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‍_{Originally presented in November 2025.}

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.

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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.

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Khaliah Johnson, MD

Khaliah Johnson received her medical degree at Stanford University in Palo Alto, CA in 2007. She then went to train in General Pediatrics at the Johns Hopkins Hospital in Baltimore, MD.  Her desire to serve children and families facing complex, life-threatening illness led her to pursue fellowship training in Pediatric Palliative Care at the Children’s Hospital of Philadelphia. Upon completing fellowship in 2012, Dr. Johnson joined the Pediatric Advanced Care Team at Children’s Healthcare of Atlanta to help expand pediatric palliative care services available to children in Georgia.  She now serves as Division Chief for Pediatric Palliative care at Children’s Healthcare of Atlanta and Emory University’s Department of Pediatrics and spends part of her clinical time at Grady Medical Center, providing palliative care at the largest pediatric HIV clinic in the United States.

Dr. Johnson’s particular career interests are in community-based pediatric care, health equity, healthcare advocacy, and developing strategies to improve access to high-quality palliative care services to marginalized populations.  Dr. Johnson was prestigiously named a Cambia Health Foundation Sojourns Scholar in 2021, where her work focuses on addressing racism in pediatric serious illness. She has experience in community-based participatory research and has lobbied on Capitol Hill at the state and federal levels for health care legislation impacting children and families facing serious illness.

Her commitment to serving the underserved extends beyond her roles at Emory and Children’s Healthcare of Atlanta, as she consistently remains engaged in outreach to youth and the homeless through volunteer efforts and church ministries and is the founder of the non-profit initiative in rural Kenya, We are Wendo.(https://www.wearewendo.com).

Arika Patneaude, MSW, LICSW, APHSW-C

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.  

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_{Originally presented in June 2025.}

Jenifer Matthews, MD

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Overview:

Structural competency is the capacity for health professionals to recognize and respond to health and illness as the downstream effects of broad social, political, and economic structures. Join us as we discuss these concepts through a pediatric palliative care case and examine how structures affect our practice of healthcare.

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Learning Objectives:

1. Identify the impact of structures on individual and community health, as well as in the healthcare system
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2. Define and describe structural competency as a framework using a shared vocabulary
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3. Articulate strategies to respond to the influences of structures in the health care setting and beyond, specifically in the settings of pediatric palliative and hospice care delivery

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Presenter:

Jenifer Matthews, MD

Dr. Jen Matthews is an Integrative Pediatrician at UCSF Benioff Children’s Hospital Oakland. Dr. Matthews completed an Integrative Medicine Scholars Program at the UCSF Osher Center for Integrative Medicine and is trained in acupuncture as well as pediatric hypnosis. She has a special interest in caring for kids and teens who need support to cope with and health from chronic pain and integrates herbal medicine, acupuncture, as well as mind-body modalities. In her research, Matthews studies how best to implement pediatric acupuncture and integrative medicine in caring for children who are underserved by traditional and complementary medical systems. She additionally has co-created a curriculum for pediatric residents to gain exposure to Integrative Medicine including Integrative Pediatric Pain Management as well as examining our role as healers in the current medical landscape. She has been a member of the organization, Integrative Medicine for Underserved, for many years and her overall goal is to improve health equity and improve access to integrative health services for all children. Dr. Matthews is currently working towards a Master’s degree in Traditional Chinese Medicine.

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_{Originally presented in November 2023.}

Kate Ostrander, MD, FAAP / Grace N. Slater, MD, FAAP

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Overview:

In this webinar, the presenters will discuss an innovative communication tool for responding to discrimination in real time in the clinical setting, while aligning with patients around care and supporting teammates.

Interdisciplinary medical teams experience macroaggressions and discrimination every day. Even when coming from patients who are suffering from serious illness, a skillful and timely response is imperative to set reasonable limits on behavior and to support our diverse team members. Come learn more about an innovative communication tool for responding to discrimination in real time in the clinical setting, while aligning with patients around care and supporting teammates. You’ll hear about the results of the project used to develop it, and get to engage with the tool itself, so you can leave the webinar having practiced new skills to bring to your own work environment.

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Learning Objectives:

1. Recognize the frequency of discriminatory comments in the health care setting and summarize its effect on teams
   
   
2. Describe a the Realign Respond Repair framework for responding to discriminatory comments from patients/families
   
   
3. Apply Realign skills to respond to varying family emotion underlying discriminatory comments as presented in simulated cases
   
   
4. Develop Respond phrases for direct responses to discrimination as presented in simulated cases
   
   
5. Utilize the FRAME skill to structure a team debrief as presented in simulated cases
   
   
6. Report motivation to employ Realign-Respond-Repair skills in the next month

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Presenters:

Kate Ostrander, MD, FAAP

Dr. Kate Ostrander is a Pediatric Palliative and Hospice Medicine Physician on the Pediatric Advanced Care Team at the University of Vermont Children's Hospital, where she cares for children and families facing serious illness in the inpatient, outpatient, and home based settings. She is working to grow access to Palliative and Hospice care throughout Northern New England by collaborating with regional healthcare and community organizations. She completed her medical training at Tufts University and pediatric residency at the University of Vermont, where she practiced as a pediatric hospitalist prior to completing her Pediatric Hospice and Palliative Medicine Fellowship at the University of Pittsburgh. Her academic interests include teaching inter-professional communication skills for serious illness, developing systems and methods for medical team debriefing and bereavement, physician and trainee reflective practice, and community engagement in pediatric training. In her fellowship, Kate and her co-fellow Grace, developed a communication framework for responding to discrimination in interdisciplinary teams, and also developed an educational framework to teach the use of it. Their QI data related to the project won best poster at a local medical education conference, and their framework has been featured as workshops at multiple, international professional meetings.

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Grace N. Slater, MD, FAAP

Dr. Grace Slater is a Pediatric Hospice and Palliative Medicine physician and Pediatric Hospitalist at UTSW Children’s Medical Center Dallas. She completed her medical training at University of Illinois College of medicine at Peoria and pediatric residency at the Medical College of Wisconsin. She completed her Pediatric Hospital Medicine and Hospice and Palliative Medicine fellowships at UPMC Children’s Hospital of Pittsburgh. Dr. Slater is a dedicated teach​er of current and future physicians about diversity, equity, and inclusion and has co-led the development and implementation for DEI curricula for faculty at UPMC Children’s Hospital of Pittsburgh. Her current research focuses on DEI and cultural competency, specifically creating innovative curricula to bolster physician communication skills surrounding responding to discriminatory comments. In the past year Dr. Slater and Dr. Kate Ostrander of University of Vermont have developed a communication framework for responding to discrimination with interdisciplinary teams which has been featured as a workshop at national and international professional meetings.

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_{Originally presented in October 2023.}

Dawn Graeme, DPT / Christine Burke, MA, Ms. Wheelchair America 2022

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Overview:

Utilizing the Models of Disability and personal anecdotes, the presenters will illustrate how we can better provide equitable and inclusive care for all our patients and their families.

When seeing a child with medical complexity, often only the tubes and attached medical devices are seen and not the child. In Palliative and Hospice Care, one of our strongest tenets is to help our patients live until they die, focused on quality of life. However, if a child has a challenging medical condition or disability, assumptions may be made as to what a quality life can or does entail. Utilizing the Models of Disability and personal anecdotes, the presenters will illustrate how we can better provide equitable and inclusive care for all our patients and their families.

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Learning Objectives:

1. Distinguish how to normalize disabilities

2. Illustrate how providers see the child vs. the diagnosis

3. Correlate firsthand experiences navigating the medical system as parent/child vs. patient/medical provider

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Presenters:

Dawn Graeme, DPT

Dawn graduated from San Jose State with a Bachelor’s in Health Science in 1979, then in 1981, went to the University of California, San Francisco for her certificate in Physical therapy. In 2009, Dawn went back to school for her Doctorate in Pediatric Physical Therapy at Drexel University. Over the past 40 years she has worked in nearly every setting in which PT is needed. Dawn has extensive experience in orthopedics and rehabilitation, but her dream job came in 2000 when she started work in early intervention for a local school district. Working with families and their new babies was a gift beyond words. It wasn’t long before Dawn’s work at the school district led to working with older students and becoming more involved with the equipment required to allow them to access the educational environment. Working with students with mobility needs, and often in conjunction, communication needs allowed her to meet some of her favorite people with incredible skills. Students were the teachers when it came to using the latest technology to speak, write, and create. In December 2021, Dawn retired from working in public education, with a lifetime of memories and friends. In 2013, Dawn began teaching anatomy and physiology to nursing students. She is currently an assistant professor at Unitek College and is working with a team on a developing Physical Therapy Assistant Program. Dawn is honored to be the “Queen Mother” to Ms. Wheelchair America, who has led her on a journey far beyond anything she ever imagined.

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Christine Burke, MA, Ms. Wheelchair America 2022

For as long as she’s been able to talk, Christine has never been afraid to speak her mind. At the age of three she got up in front of the March of Dimes saying “My name is Christine and I use a wheelchair, and now I’m going to eat my mac n’ cheese,” proudly solidifying her role as a disabled advocate.

By the time she was six, her performing began. The pinnacle of Christine’s childhood came at the age of 10 when her mom took her to her first day playing youth wheelchair basketball at the Bay Area Outreach and Recreation Program (BORP) in Berkeley, CA. Here Christine not only learned the skills needed to run a successful pick and roll, but the chance to interact, learn and develop with people who were just like her. With the help of her peers, she learned how to navigate airports with her basketball chair and luggage, pop down curbs when no curb cutout was available, see the country and realize that she could live an independent and full life.

In 2007 Christine attended the University of Arizona, after receiving a scholarship to play on the Nationally ranked U.S. Women’s Wheelchair Basketball team. In her second year at the U of A she joined the wheelchair tennis team and become a writing skills coach for incoming minority students. The group of new students she mentored included first generation college students, international students and students with disabilities. In 2010 Christine  transferred to the University of the Pacific in Stockton, CA. While U of A is known for their competitive adaptive athletics program, she was able to reconnect with her passion for the disability community at the UOP.

As a Communications Major, she had the unique opportunity to study the impact of the media on the disability community and present her findings at a research conference of her peers and outside professionals. Christine graduated cum laude in 2012. Her life became the true definition of “this is real life” when, after nearly a decade in the corporate world, Christine landed a role as a talent manager representing high profile Deaf and Disabled talent at C Talent Management in Los Angeles. Christine proudly uses her Ms. Wheelchair America 2022 platform to help put disability back in diversity.

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_{Originally presented in August 2023.}

‍Arshia Madni, St. Jude Children's Research Hospital | Elizabeth Hawkins, St. Jude Children's Research Hospital | Sylvia Miranda, Medical Interpreter
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Overview:

This talk is an interdisciplinary approach to cultural humility in clinical care.  You will learn from a palliative physician, interpreter, and chaplain about all aspects of care for patients and families who are from diverse backgrounds.
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Learning Objectives:

1. Define cultural humility and its role in clinical care

2. Explore barriers to culturally inclusive care

3. Obtain skills in navigating challenging discussions
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About the Presenters:

Arshia Madni MD FAAP

Dr. Madni is an instructor with a dual appointment in the pediatric hematology-oncology hospitalist program as well as palliative care at St. Jude Children’s Research Hospital (SJCRH).  Her research interests are in the areas of quality improvement in palliative care and cultural humility.  She is heavily involved in diversity and inclusion at her institution as well as at the national level. She is currently chair of the South and East Asian Forum of the American Academy of Hospice and Palliative Medicine.

Elizabeth Hawkins, MDiv, BCC, CT

Elizabeth currently serves as a staff chaplain covering the Bone Marrow Transplant Unit and as liaison to the Quality of Life (palliative Care) team at St. Jude Children’s Research Hospital, a position she has held since January, 2020. She has been Board Certified from BCCi since 2013 and is commissioned and endorsed by the Greek Orthodox Archdiocese of America. Most of her professional life has been spent exploring spiritual care needs of pediatric patients, their family and staff. She is passionate about exploring the integration of religion and spirituality within the medical context. When not working, Elizabeth enjoys running, being outdoors, exploring the world, and spending time with her two young sons and husband.

Sylvia Miranda, Pharm D, CHI™, CMI

Sylvia is a nationally certified medical interpreter in Spanish and English. Sylvia earned a Pharm D degree from the Universidad Salvadoreña Alberto Masferrer. She holds 2 National Board Certifications as a Medical Interpreter. Her professional experience includes working as a pharmaceutical representative for Pfizer and Novartis Pharmaceuticals; Sylvia also was the Cardiovascular Specialist for Interventional devices for Boston Scientifics in El Salvador, during her tenure.

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_{Originally presented in February 2022.}

Kaitlyn O'Donnell, MSW, LCSW

Overview:

In clinical practice with the transgender and gender non-conforming population, a historically marginalized and mistreated population, it is vital for clinicians to practice from a place of awareness, education, and cultural humility. This presentation provides a strong foundation of knowledge for educated clinical interactions, including basic terminology, information about the disparities faced by this population, and guidance for engaging in sensitive clinical practice with cultural humility, including at end-of-life, and establishing safer environments, both in healthcare settings and when care providers are in the home.

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Objectives:

1. Define distinctions between gender, sex assigned at birth, and sexuality and terms relevant to the transgender and gender non-conforming population

2. Understand disparities faced by this population and why this understanding is important to health outcomes

3. Learn tangible skills and resources to improve clinical interactions and environments and understand the importance of appropriate clinical interactions

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About the Presenter:

Kaitlyn O’Donnell, MSW, LCSW, OSW-C (they/them; she/her)is a Pediatric Oncology Clinical Therapist with Inova Life with Cancer. Kaitlyn has also served in clinical and supervisory roles within palliative and end-of-life care at Inova Fair Oaks Hospital, UCSD, and Nationwide Children’s Hospital. Kaitlyn is a current fellow in NYU’s Zelda Foster Studies in Palliative and End-of-Life Care Fellowship program. Kaitlyn’s areas of focus are pediatric palliative and end-of-life care and clinical work with LGBTQ+ adolescents and young adults. Kaitlyn maintains extensive professional and community involvement with and advocacy for the LGBTQ+ population, with attention to care for transgender and gender non-conforming individuals. Kaitlyn lives in Northern Virginia with her spouse and their pets.

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_{Originally presented in August 2021.}

Brittany Maldonado-Gosline

Overview:

There are a myriad of constellations that make up a family...and, within each family, a unique identity of “sibling”, one that fiercely loves and walks alongside you regardless of the shared or unshared DNA. This webinar presents a unique case study through which participants will discover ways families identify their own family constellation and the identity of each unique sibling. Participants will learn practical and compassionate ways to address the unique experience of those grieving alongside their beloved brothers and sisters. Participants will also learn how to include siblings from diverse backgrounds and how to support them within an interdisciplinary team. Participants will evaluate different methods to support and serve siblings from diverse backgrounds.

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Objectives:

1. Participants will learn how to identify and compassionately address the needs of siblings in non-traditional and multicultural families.

2. Participants will gain perspective on how to include siblings and support them in a home and clinical setting during the sibling’s unique experience..

3. Participants will learn tools to appreciate and respond to unique family dynamics and separate their prejudices regarding traditional family that will encourage a whole family support model.

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About the Presenter:

Brittany Maldonado-Gosline, is an advocate for grieving children. Although she  brings eight years of experience starting and raising $42M in private capital  for businesses focused on sustainability and well-being, Brittany’s most  treasured asset is her willingness to share the experience of loving and  losing her little brother, Corbin to cancer with other bereaved siblings at  Jacob’s Heart. As the current Deputy Director of Jacob's Heart Children's  Cancer Support Services, Brittany works closely with the board, staff, volunteers,  and most importantly, her tribe of forever siblings, to forge a sustainable  path for Jacob’s Heart families now and in the future.

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_{Originally presented in June 2021.}

Sabrina F. Derrington, MD, MA, HEC-C

This presentation will discuss the ways in which clinical ethics and palliative care overlap in the care of seriously ill children and their families - as well as the important ways in which they differ. The speaker will touch on common ethical dilemmas that arise in pediatric palliative care practice, using case examples to illustrate the application of relevant ethical frameworks. Specific topics will include parental requests for non-disclosure, "elective" requests for withdrawal of life-sustaining therapies, and disagreement between parents and medical teams about suffering and how best to address it.

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Objectives:

1. List differences and synergies between clinical ethics and palliative care for children with serious illness and their families.

2. Apply ethical frameworks including principalism, ethics of care and narrative ethics to common challenges in palliative care.

3. Understand when a clinical ethics consult can be helpful for palliative care teams, patients, and families.

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About the Presenter:

Sabrina F. Derrington, MD, MA, HEC-C

Dr. Derrington obtained her medical degree from the University of California at Davis, and holds a master's degree in Bioethics and Health Policy from Loyola University. She completed her residency and fellowship at Children's Hospital Los Angeles, and has practiced pediatric critical care and palliative care for 9 years. In addition to her clinical roles, she chairs the ethics committee at Lurie Children's Hospital in Chicago and oversees clinical ethics consultation and ethics education for the hospital. Her research interests include improving health equity, understanding the impact of social determinants of health on post-ICU outcomes, integrated communication curricula for pediatric trainees, and addressing staff burnout through narrative medicine practices.

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_{Originally presented in June 2020.}

Chrissy Salley, PhD / Panel of Fathers

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.

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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.

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Chrissy Salley, PhD

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.

Panel of Fathers

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‍_{Originally presented in November 2025.}

Esther Ammon, MSW, LCSW, APHSW-C / Stacy Remke, MSW, LICSW, APHSW-C / Akilah Burford, MSW / Allie Shukraft, MSW, MAT, APHSW-C / Erin Bonsall, MSW Student

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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.

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Learning Objectives:

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.

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Esther Ammon, MSW, LCSW, APHSW-C

Esther Ammon is a licensed clinical social worker and Director of the Pediatric Palliative Care and Family Guidance programs at Stanford Medicine Children's Hospital. A graduate of NYU, she completed a post-grad certificate in palliative and end of life care at Smith College as well as a leadership fellowship in palliative care through the Zelda Foster Studies program. Esther has her advanced certification in palliative and hospice social work (APHSW-C)and has served as a content expert for the American Case Management Association(ACMA) Compass Training in Palliative Care as well as Education in Palliative and End of Life Care (EPEC) for Veterans Health Administration employee education. Esther is a trainer with the Serious Illness Care Program (SICP)through the Stanford School of Medicine and has contributed to curriculum development for the Education in Palliative and End of Life Care (EPEC) taught in Ethiopia. She is a proud Board member of the Social Work Hospice and Palliative Care Network as well as the American Case Management Association, Northern California chapter.

Stacy Remke, MSW, LICSW, APHSW-C

Stacy Remke is a Senior Clinical Teaching Specialist at the University of Minnesota’s School of Social Work. Her clinical experience includes 27 years as a pediatric social worker, assisting children with life threatening and chronic, complex conditions and their families in home, community and hospital settings. She was a founder of the palliative care service at Children’s Hospitals and Clinics of Minnesota, one of the first pediatric palliative care programs in the US. Stacy was a Co-Investigator for the NCI funded curriculum development project, “EPEC-Pediatrics” and has taught the curriculum nationally and internationally. Stacy has contributed extensively to the knowledge base for the field of pediatric palliative care. She served on the national Advisory Board for NHPCO’s ChiPPS Pediatric interest group, and as a faculty member for Center to Advance Palliative Care’s (CAPC) PCLC at Children’s Minnesota. Stacy served on the Board for Social Work Hospice and Palliative Network (SWHPN), is a certified hospice and palliative care social work specialist (APHSW-C). As a member of The International Workgroup on Death, Dying and Bereavement (IWGDDB)she is focusing on grief literacy, child loss and childhood bereavement issues. She has been inducted into the National Academies of Practice as a Fellow.

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Akilah Burford, MSW

Akilah Burford, MSW, a native of Oakland, CA, pursued a double major in Sociology and Feminist Studies during her undergraduate years at UC Santa Cruz. Her dedication led her to work for two years (2015 – 2017) with women and children facing homelessness and experiencing IPV at Building Futures with Women and Children. In 2019, Akilah obtained her MSW with a focus on Children and Families Services and a Pupil Personnel Services Credential from UC Berkeley. Her passion for Palliative Care and Oncology emerged during her dual internship at UCSF Benioff Children’s Hospital from 2018 to 2019, solidifying her commitment to supporting and advocating for this population. Akilah earned a Certificate in Pediatrics Bioethics in May 2023. She Joined the Stanford Children’s team as an Oncology Social Work Clinician in December 2019, and then Pediatric Palliative Care in 2024. Akilah proudly embraces her dream role as a Palliative Care & Ethics Specialist. Outside of work, Akilah finds joy in providing support to others and cherishes quality time with her family, friends, and partner. Her interests include exercising, Pilates, traveling, exploring new restaurants, creating memories with her niece and nephew, and passionately supporting NFL games (Go 9ers!).

Allie Shukraft, MSW, MAT, APHSW-C

Allie Shukraft is a seasoned Pediatric Palliative Care Social Worker at Atrium Health Levine Children’s Hospital, a role she has held since 2008. With a Master of Social Work (MSW)and a Master of Arts in Teaching (MAT), as well as certification as an Advanced Palliative and Hospice Social Worker (APHSW-C), Allie brings a wealth of expertise to her practice. Her professional journey began in education as ahigh school English teacher, an experience that has profoundly influenced her approach to palliative care. Allie’s background in creative writing, evidenced by her bachelor’s degree in creative writing, allows her to integrate artistic expression into her work. She frequently employs creative language, poetry, and analogies to enhance communication with patients and families, enriching the palliative care experience. In addition to her clinical practice, Allie has made significant contributions to the field through various leadership and editorial roles. She has served on the Board of Directors for the Social Work Hospice and Palliative Care Network (SWHPN), including notable positions on the Executive Committee as Vice Chair and Chair, and participation in Governance, Education, Nominating, and Finance Committees. Her editorial contributions include serving on the Editorial Board for the Journal of Social Work in Palliative and End-of-Life Care, as well as being an author and editor for the Pallimed blog. Allie has also co-authored chapters in key palliative social work textbooks and journals and has been a presenter at numerous national, state, and regional hospice and palliative care conferences over the past 16years. Outside of her professional endeavors, Allie enjoys a range of personal interests including cooking, listening to music and audiobooks, weightlifting, and spending quality time with her dogs.

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Erin Bonsall, MAT, MSW Student

Erin Bonsall, BS, MAT Originally from Boston, Erin Bonsall graduated from Wingate University in 2008 with a Bachelor of Science in Human Services and a minor in Family Studies. In December 2011, she earned her Master’s in Teaching (MAT) and went on to teach at the elementary and preschool levels. Erin also gained experience tutoring children ESL from China. Currently, she is in her final year of the MSW program at UNC Charlotte, where she is at the top of her class and has been inducted into the Phi Alpha Honor Society for her academic excellence. As an IBH scholar, she is learning to work within interdisciplinary teams to provide holistic, whole-person care to patients. Erin holds a certificate in play therapy, specializing in supporting caregivers and children with serious, complex medical issues. She previously interned in Complex Care at Levine Children’s Hospital and is now completing a Palliative Care internship, where she has discovered a passion for pediatric palliative care. Upon graduation, Erin plans to pursue her LCSW and continue working in palliative care to support children and families through serious illnesses.

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_{Originally presented in February 2025.}

Gabrielle Langmann, MD, MS

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‍Dr. Langmann reviews a framework for defining and managing anxiety in seriously ill children and adolescents based on developmental stage and overall prognosis. Comprehensive assessment and management strategies that leverage the entire interdisciplinary team will be reviewed, including non-pharmacologic and pharmacologic interventions.

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Learning Objectives:

1. Demonstrate a framework for defining anxiety in seriously ill children and adolescents based on developmental stage and overall prognosis.
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2. Plan a comprehensive strategy for management of anxiety in seriously ill children and adolescents which includes non-pharmacologic and pharmacologic interventions.
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3. Appreciate the unique roles of supportive and palliative care interdisciplinary team members in the assessment and management of anxiety in children and adolescents with serious illness.

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Presenter Bio:

Dr. Langmann is a clinician-educator and Clinical Assistant Professor of Medicine with the Supportive & Palliative Care Program at the University of Utah. She practices inpatient palliative medicine at the University of Utah Health Science Center and Huntsman Cancer Hospital, where she has the privilege of working with learners across the interdisciplinary team. She completed internal medicine-pediatrics residency training as well as a fellowship in hospice and palliative medicine at the University of Pittsburgh Medical Center, where she also completed a master's degree in medical education. She has special interests in palliative care for adults living with childhood-onset serious illnesses and their families, as well as pain and symptom management for patients with comorbid serious illness and substance use disorder(s).

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^{Original presented in September 2024.}

Michelle Freeman, MD / Deana Deeter, CRNP / Nicole Hahnlen, RN
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‍Hope is an essential attribute for families navigating a child’s life-threatening medical condition. Too often, healthcare professionals misunderstand the hopes shared by families. A family’s expressed hope may cause us to worry that our message has not been heard, or worse, that a family is “in denial”. Members of the Hummingbird Team will discuss the importance of hope and highlight families’ ability to “hold both”- hope and prognostic awareness. This webinar will offer tools and communication strategies for exploring hope and will discuss how to integrate a family’s hopes into a child’s plan of care.

1. Define hope—discuss what hope is and what it is not.
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2. Discuss the role hope plays for parents and the difference between parent and clinician views of hope.
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3. Explain the concept of “holding both” hope and prognostic awareness.
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4. Discuss tools and communication strategies for exploring hope and how to integrate hopes into the plan of care.

Michelle Freeman, MD

Michelle Freeman is the medical director of the Hummingbird Program, which is the Pediatric Palliative Care Program of the Children’s Hospital.  She spends her days working alongside her Hummingbird team colleagues, rounding in the hospital, seeing patients and families in the clinic, and managing hospice care for our pediatric hospice patients.  She and her colleagues in the Hummingbird Program provide palliative care consults and supportive services to babies, children, teens, and young adults with serious, potentially life-limiting illnesses and their families, as well as providing perinatal palliative care consults to expecting families.  She is interested in complex medical decision making, helping families and medical teams to curate our medical care to best meet the goals of care of seriously ill children.  She is also interested in utilizing the multidisciplinary approach of pediatric palliative medicine and the many other disciplines in the hospital and clinic to help improve the quality of life of children with serious illness and their families.

Deana Deeter, CRNP

Deana Deeter is the nurse practitioner and program manager for the Hummingbird Program at Penn State Health Children’s Hospital. She completed her pediatric nurse practitioner training at The Ohio State University. Deana has been working in pediatric palliative care with the Hummingbird team since 2011, and prior to that she worked as a nurse practitioner in pediatric oncology for 5 years. She holds certifications in Hospice and Palliative Pediatric Nursing, Pediatric Oncology Nursing, Pain Management Nursing, and Functional Medicine.

Nicole Hahnlen, RN

Nicole Hahnlen is the nurse coordinator of the Hummingbird Program at Penn State Health Children’s Hospital. She completed her bachelor of science in nursing from the Pennsylvania State University. She also earned a bachelor of arts in family studies from Messiah University. Before she became a nurse, Nicole worked as a child life specialist specializing in immunology and grief & bereavement support for school-aged children.  Nicole holds certification in hospice and palliative pediatric nursing. She also serves on the executive board of the Pediatric Palliative Care Coalition in Pennsylvania.  

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_{Originally presented in April 2024.}

The purpose of this talk is to highlight the growing population of parents as long-term caregivers who experience significant psychological distress and trauma; to offer the most advanced guidance to all providers about how to recognize and treat this population; and to offer our own leadership experiences within the hospital setting to improve care for children and their families.

Sandra Clancy, PhD; Justine Dellaria, MSW, LICSW

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Learning Objectives:

1. Recognize the impact on families and parents of caring for children with complex medical needs
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2. Understand the support needs of this population of parents and families
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3. Learn how the speakers (a medical social worker and a parent) have themselves undertaken program developments and led change to enhance care and supports for this population

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Presenters:

Sandra Clancy, PhD

Sandra was Program Manager and Patient Advocate in the Coordinated Care Clinic and Supportive and Palliative Care Service at MassGeneral Hospital for Children (MGHfC) for 15 years. Currently, she is overseeing a grant-funded project in which these two services more closely collaborate to provide comprehensive care to the hospital’s most seriously ill patients. She is part of a research team in the MGHfC Center for Child and Adolescent Health Policy Research that is investigating the effects on parents of caring for a child with medical complexity and parents’ understanding of pediatric palliative care. She is Chair of the hospital’s Patient and Family Advisory Council. She co-authored several academic articles and has given numerous talks at conferences. She served as Chair of the Professional Advisory Board of The Courageous Parents Network, a non-profit dedicated to supporting parents of children with life-limiting illnesses and is an active member of Children and Youth with Special Healthcare Needs Research Network.

Justine Dellaria, MSW, LICSW

Justine holds a Master’s degree in Social Work from Boston College and completed her studies while interning at Boston Medical Center (BMC). Justine went on to work at BMC as a medical social worker in various departments including inpatient trauma and general surgery and in their Cancer Center as an outpatient social worker for patients with malignant and non-malignant blood disorders and cancer and facilitated several support groups for adults managing those conditions. Justine continued her career working for Massachusetts General Hospital (MGH) as the Pediatric Intensive Care Unit Social Worker. In that role, Justine worked with colleagues to institute an interdisciplinary team huddle to optimize care delivery to PICU families with complex psychosocial stressors. Justine also spearheaded a reorganization of the multidisciplinary response to a child passing, focusing on the coordination of care and resources provided to families. Continuing at MGH, Justine worked on the Pediatric Palliative Care Team, furthering her education by completing the Harvard Medical School Center for Palliative Care course: Palliative Care Education and Practice (PCEP), and helped in establishing a full time Pediatric Palliative Care Social Work position. Justine has since transitioned to work for the Child Protection Program at MGH and provides expert consultation to staff around concerns of child maltreatment. Justine is trained in Critical Incident Stress Debriefings (CISD) and has led debriefings in her various roles for staff as a form of psychological first aid to minimize symptoms of traumatic stress in frontline workers. Justine has been recognized as a Clinical Scholar at MGH and has extensive experience working with families in crisis and coping with the emotional and social impact of illness. Justine currently teaches a medical social work course: The Integration of Behavioral Health in Medical Care Practice, at Boston College Graduate School of Social Work and has established a private practice in the community working with individuals with various mental health needs, relationship issues, life transitions, and coping with medical complexities for themselves or their children.

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_{Originally presented in January 2023.}

The results of a phenomenological qualitative study using photo voice to interview sibling/parent dyads to better understand the lived experience of being a sibling to a child with SNI will be discussed.

Danielle Jonas | New York University Silver School of Social Work

Overview:

The results of a phenomenological qualitative study using photo voice to interview sibling/parent dyads to better understand the lived experience of being a sibling to a child with SNI will be discussed. Key findings will be highlighted, as well as take away points for providers in regards to how to best meet the needs of these siblings.
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Learning Objectives:

1. Advocate for the inclusion of Perinatal Palliative Care in multidisciplinary fetal care

2. Outline Goals of Care conversations in the prenatal period

3. Discuss the functional and therapeutic roles of creating a Perinatal Palliative Care Birth Plan

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About the Presenter:

Danielle Jonas, MSW, LCSW | New York University Silver School of Social Work

Danielle Jonas is a social work researcher focused on pediatric palliative care and specifically the care of children with severe neurologic impairment and their families. She is currently a PhD student at New York University Silver School of Social Work. Danielle completed the interdisciplinary pediatric palliative care fellowship through Boston Children’s Hospital and the Dana Farber Cancer Institute in 2015, earned her MSW from Indiana University in 2014, and earned a BA in Psychology and History for Indiana University in 2012. She serves on the Social Work Hospice and Palliative Care Network (SWHPN) board and has presented nationally on various topics related to pediatric palliative care and the social work role within the field of pediatric palliative care. She has also co-authored several textbook chapters on topics such as Social Disparities in Pediatric Palliative Care and Bioethics in Pediatric Palliative Care Social Work. In addition to her academic work, Danielle currently conducts private practice psychotherapy and bereavement counseling for children, families and adults. She previously served as the pediatric palliative care social worker and bereavement coordinator at Children’s Hospital Los Angeles.

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_{Originally presented in June 2022.}

Family caregivers of children with medical complexity (CMC) are responsible for providing and arranging the majority of their child's care with inadequate support from health care systems.

Justin Yu | Children's Hospital of Pittsburgh of UPMC
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Overview:

Family caregivers of children with medical complexity (CMC) are responsible for providing and arranging the majority of their child's care with inadequate support from health care systems. How CMC caregivers' experiences impact their emotional well-being is under-described. In this talk, we will review the existing literature, our team's current research, and plans for next steps to improve the health and well-being of this critical caregiver population.
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Learning Objectives

1. Participants will be able to describe the unique challenges caregivers of CMC experience.

2. Participants will be able to differentiate between what we know and don't know about CMC caregiver emotional well-being.

3. Participants will be able to identify high-priority next steps  the pediatric palliative care field must take to support this caregiver population.
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About the Presenter:

Justin A. Yu, MD, MSc | Children's Hospital of Pittsburgh of UPMC

Dr. Justin Yu is a board-certified physician-researcher in Pediatrics, Internal-Medicine, and Hospice and Palliative Care Medicine and an Assistant Professor at the University of Pittsburgh School of Medicine. He works with the Supportive Care team at the Children’s Hospital of Pittsburgh of UPMC. His research focuses on improving the health and well-being of children with medical complexity and their family caregivers. He is currently supported by the National Palliative Care Research Center's Kornfeld Scholars Program.

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_{Originally presented in April 2022.}

Brittany Maldonado-Gosline

Overview:

There are a myriad of constellations that make up a family...and, within each family, a unique identity of “sibling”, one that fiercely loves and walks alongside you regardless of the shared or unshared DNA. This webinar presents a unique case study through which participants will discover ways families identify their own family constellation and the identity of each unique sibling. Participants will learn practical and compassionate ways to address the unique experience of those grieving alongside their beloved brothers and sisters. Participants will also learn how to include siblings from diverse backgrounds and how to support them within an interdisciplinary team. Participants will evaluate different methods to support and serve siblings from diverse backgrounds.

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Objectives:

1. Participants will learn how to identify and compassionately address the needs of siblings in non-traditional and multicultural families.

2. Participants will gain perspective on how to include siblings and support them in a home and clinical setting during the sibling’s unique experience..

3. Participants will learn tools to appreciate and respond to unique family dynamics and separate their prejudices regarding traditional family that will encourage a whole family support model.

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About the Presenter:

Brittany Maldonado-Gosline, is an advocate for grieving children. Although she  brings eight years of experience starting and raising $42M in private capital  for businesses focused on sustainability and well-being, Brittany’s most  treasured asset is her willingness to share the experience of loving and  losing her little brother, Corbin to cancer with other bereaved siblings at  Jacob’s Heart. As the current Deputy Director of Jacob's Heart Children's  Cancer Support Services, Brittany works closely with the board, staff, volunteers,  and most importantly, her tribe of forever siblings, to forge a sustainable  path for Jacob’s Heart families now and in the future.

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_{Originally presented in June 2021.}

Vicki Jay, CEO - National Alliance for Grieving Children
No matter the age, children anticipate, experience, and grieve the death of loved ones. Participants will explore the developmental understanding of death through the eyes of a child. Developmentally appropriate tools will be shared to encourage inclusion and involvement of younger family members in the illness and anticipated death of their loved ones as well as the grief process that follows.

‍Objectives:

1. Recognize developmental understandings of death
2. Identify rationale, tools and resources to build a continuum of care from diagnosis to end of life and beyond
3. Apply tools to support children and teens through the death & dying process of loved ones and locate resources to support children and teens experiencing the death of a loved one

‍About the Presenter:

Vicki Jay serves as CEO for the National Alliance for Grieving Children. Ms. Jay was founding director of Rays of Hope Children’s Grief Center in Midland Texas. Her nineteen-year hospice career included End-of-Life Community Education Director and ten years as Founder and Executive Director of Rays of Hope Children’s Grief Center. She is recognized for her role in children’s advocacy and for her strengths in public speaking and community education. Jay has received many awards and recognitions for her work with nonprofits and in the field of bereavement, including the National Jefferson Award for Community Service, a prestigious national recognition honoring community and public voluntarism in America. Recipients are “ordinary people who do extraordinary things without expectation of recognition.” A graduate of Texas Tech University, Jay currently resides in Midland, Texas. In addition to her professional and community roles, Jay cherishes her role of wife, mother, friend and recently “Nana.”

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_{Originally presented in October 2020.}

Lori Wiener, PhD

Meaghann Shaw Weaver, MD, MPH, FAAP

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Palliative providers often face the daunting task of finding suitable words to explain a life-threatening illness or death to a loved child or grandchild. Children's storybooks have the potential to facilitate communication for children living with a serious illness and for children coping with the impending or recent death of a loved one. This session will provide examples of how books can be used to help children to address physical changes; communicate their fears, worries, hopes; and safe ways to say good-bye (legacy work) while reassuring they will be remembered.

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Objectives:

1. Introduce the use of children’s storybooks as tools to foster preparatory communication and bereavement care for children and for the young-at-heart.

2. Summarize the ways that children’s storybooks depict end of life with revealed trends in ethnic and religious content representation.

3. Address challenges and other tools to enhance communication about progressive illness, dying and death.

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About the Presenters:

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Lori Wiener, PhD

Dr. Lori Wiener is co-director of the Behavioral Science Core and Head of the Psychosocial Support and Research Program at the pediatric oncology branch of the National Cancer Institute. As both a clinician and behavioral scientist, Dr. Wiener has dedicated her career to the fields of oncology and pediatric HIV/AIDS. At NCI Pediatric Oncology Branch, she developed a robust clinical and research program that has focused on critical clinical issues such as parental coping, lone parenting, transnational parenting, emotional consequences of medically required isolation, sibling and sibling donor experiences, graph versus host disease, and end-of-life planning. Dr. Wiener has also dedicated a substantial part of her career to applying knowledge from her clinical experience and psychosocial studies to create innovative resources such as books, workbooks, therapeutic games and an advance care planning guide for children, adolescents and young adults. Each of these resources are distributed worldwide and widely utilized in pediatric centers. Dr. Wiener has published extensively with over 200 peer review papers and books chapters, co-edited the Pediatric Psycho-Oncology: A Quick Reference on the Psychosocial Dimensions of Cancer Symptom Management, New York, NY: Oxford University Press, 2015 and Pediatric Psychosocial Oncology: Textbook for Multi-disciplinary Care, Springer International Publishing, 2016. She has been part of the leadership team that has developed the first evidence-based psychosocial standards of care for children with cancer and their family members.

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Meaghann Shaw Weaver, MD, MPH, FAAP

Dr. Meaghann Weaver serves as Chief of the Division of Pediatric Palliative Care at the Children’s Hospital and Medical Center in Omaha, Nebraska. Meaghann majored in African Studies and Theology before attending medical school, pediatric residency, pediatric hematology/oncology fellowship, and then palliative care and hospice fellowship. She has an MPH with global epidemiology focus. Meaghann is interested in supportive care and complex symptom management, health equity for patients in low-resource settings, spirituality in healthcare, caregiver resilience, global health, and implementation science. She values team science and palliative care research.

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_{Originally presented in July 2020.}

David M. Steinhorn, MD

Jana Din

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The participants will learn about ways to guide families to a mindful state using both conventional MBSR approaches and indigenous approaches that rely upon a sonic drive such as drumming.  The participants will see how these approaches have been applied in the hospital setting in work with critically ill and dying children.   Additionally, the participants will have an opportunity to experience the approach to mindfulness that the presenters are championing in their clinic work.

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Objectives:

1. The participant will be able to define mindfulness and list at least three approaches to aid in achieving a mindful state.

2. The participants will be able to define the transpersonal state and explain how it relates to mindfulness.

3. The participant will experience a short mindful journey in transpersonal space.

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About the Presenters:

David M. Steinhorn, MD  

Professor of Pediatrics
Medical Director, PANDA Palliative Care Program
Children’s National Medical Center

‍‍Jana Din

Jana Din has provided over 100 shamanic healing services for critically ill children, their families and the medical clinicians that care for them, in a unique collaboration with David Steinhorn, MD, ICU and hospice physician.  It is Jana’s privilege to provide shamanic healing in hospitals, hospices and around the nation, to help patients, families and healthcare providers discover the spiritual meaning in the challenges and experiences a person faces when seriously or terminally ill. 

Jana captivates and inspires audiences nationwide with her poignant, often heart rending stories of healing the human spirit in the midst of working with patients and families who are facing the most agonizing times of their lives.

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_{Originally presented in May 2020.}

Dr. Abby R. Rosenberg

Patients and families facing serious pediatric illnesses face a unique and challenging experience, including disruption of normal physical, mental and social development. The impacts can be long-lasting. Patients, siblings, and parents may be at risk for anxiety, depression and post-traumatic stress. In some cases they may be less likely to achieve milestones such as attending school, gaining independence or forming close friendships. In this session you will learn ways to help children, teens, and young adults – and their parents – become more resilient in the face of serious health problems. The goal is to equip patients and families with skills that improve their outcomes and help them lead happier, more fulfilling lives.

Objectives:

1. Describe resilience theory and how it does (or does not) relate to pediatric experiences

2. Describe a novel tool to promote resilience in pediatric patients and parents

3. Describe clinical questions to ask patients and families in order to help them feel more resilient.

About the Presenter:

Abby R. Rosenberg, MD, MS, MA  Assistant Professor of Pediatrics at the University of Washington, with joint appointments in the divisions of Bioethics & Palliative Care, and Hematology/Oncology.    

Dr. Rosenberg is an Assistant Professor of Pediatrics at the University of Washington, with joint appointments in the divisions of Bioethics & Palliative Care, and Hematology/Oncology.  She received her MD from Stanford University and did her pediatrics residency and fellowship training at Seattle Children’s and the University of Washington. She is currently the director of the Palliative Care and Resilience research program at Seattle Children’s Research Institute, and the director of Pediatrics in the University of Washington Cambia Palliative Care Center of Excellence.  Her scholarship focuses on the intersection of medical, psychosocial, and bioethical issues involved in the care of children, adolescents, and young adults with serious illness. Specifically, she and her team endeavor to create evidence-based palliative care interventions to promote patient and family resilience.  Current projects include NIH-funded randomized trials to test her novel resilience intervention in populations of teens with advanced cancer.

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_{Originally presented in March 2019.}

Dr. Kathy Davis

School is often described as the work of a child.  That work is often significantly interrupted by serious or life-limiting illness, hospitalizations and treatments.  Despite the inability to maintain an on-going school focus, many seriously ill children continue to want and need opportunities for continued growth and development.  Cognitive, emotional, psychological and social development continues to be at the core of the child’s self-identity and requires cultivation and attention.  Research suggests poor outcomes for some adults who were children with serious or life-limiting health conditions.  When compared to peers or siblings, those discrepancies have been suggested in a wide-range of areas including high school graduation, post-secondary education, employment rates and ability to obtain health insurance, interactions with peers in friendship and romantic encounters, less frequent marriage, more frequent divorce, and becoming parents less often.  These outcomes are not surprising when considering the depth and breadth of learning that occurs in preschool through high school, and how that knowledge may be impacted with excessive time away from school and other activities.

This webinar will focus on specific ways to help children continue to succeed in school, activities and the community despite a serious illness.  Strategies for collaboration with school administrators, teachers, coaches, activity directors, clergy and others will be highlighted with a goal of maintaining the youngster’s well-being throughout their journey.  For some, this approach will enhance the transition into successful adulthood and, for others, the ability to be evaluated alongside their siblings and peers may add a quality to life that cannot be achieved otherwise.

OBJECTIVES:

1. Identify primary areas of development that may be impacted for children with serious or life-limiting health conditions enabling consideration when developing palliative care supports for school age children.

2. Apply knowledge regarding Individualized Education Programs (IEPs) and Section 504 of the Rehabilitation Act plans (504 plans) and employ strategies to request the appropriate school plan for each child.

3. Create effective collaborative partnerships with school and community persons who are interacting with and influencing the quality of life of pediatric palliative patients, resulting in those persons as part of the core pediatric palliative care team.

About the Presenter:

Kathy Davis, PhD, MSEd, is a Professor of Pediatrics at The University of Kansas Hospital System (TUKHS).  She has 45 years of experience working with young people with chronic and life-limiting illnesses in the areas of education, child life, palliative care and ethics.  Dr. Davis provides nonpharmacologic pain management, chronic illness management, education and instruction in coping strategies, palliative care and end-of-life support and ethics consultation to hospitalized and outpatient youngsters, their families, schools and communities.  She practices comprehensive pediatric palliative care that extends beyond the hospital or healthcare setting and reaches out to address the child’s various natural environments of school, worship, athletics, activities, friendships and family.  In addition, Dr. Davis supports women expecting babies with potentially life-limiting birth anomalies and their family members; counsels children whose parent or close loved one is nearing end-of-life at TUKHS; and provides bereavement follow-up after a death involving or affecting an infant or child.

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Originally presented in June 2019.

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Yelena Zatulovsky & Dana Richmond

“Who is coming for me today?”  When there is a chronically and/or terminally ill child, siblings become accustomed to the focus placed on the sick child by the adults around them.  They are often silent sufferers and disenfranchised grievers because, within the context of this scenario,  their place is poorly defined.  Even more so, most clinicians are not equipped – whether by time, resources, or education/experience – to support the siblings within the family unit.  With research demonstrating that 1 in 7 Americans will lose a parent or sibling before they turn 20, there has been growth in programs that provide developmentally-appropriate education surrounding illness, death and support through the journey.  It is time to place emphasis on the dialogue and training to support these beloved children.

This webinar will highlight the experiences of siblings, as told by the siblings themselves, and will examine the evidence-based interventions, strategies, and obstacles towards an effective framework of support that empowers and honors siblings.

Objectives:

1. Increase understanding of the experiences and perspectives of siblings.

2. Identify elements, approaches, and curriculum in supporting the needs of the sibling population.

3. Increase understanding of patterns of communication and collaboration to shift from intent to intentional.

About the presenters:

Yelena Zatulovsky, MA, LCAT, MT-BC, CCLS, HPMT Vice President, Patient Experience Seasons Healthcare Management, Inc.

Yelena Zatulovsky has over 15 years of bedside experience working with patients and families at the end-of-life.  In addition to hospice and palliative care, Yelena is Licensed as a Mental Health Practitioner, board-certified as a Child Life Specialist, and holds an advanced designation as a Hospice & Palliative Care Music Therapist.  Along with Yelena’s clinical work, Yelena currently serves on the ChiPPS (NHPCO’s Children’s Project on Palliative/Hospice Services) Advisory Council, served on the Children's Advisory Board of HPCANYS, contributed a training module to the HIPPC (HPCANYS Initiative for Pediatric Palliative Care) curriculum, has multiple published articles, and has presented at multiple conferences nationwide.  In 2011, Yelena's music therapy work, along with that of several colleagues, was featured in the New York Times and in 2014 Yelena was honored as one of Jewish Week’s 36 Under 36.

Dana Richmond, OT, Bereaved Sibling, Kessler Institute for Rehabilitation Founder of Elle Foundation

Dana Richmond is an Occupational Therapist and founding member of the Elle Foundation. Dana has worked in a variety of settings with many different populations to become a well rounded therapist. Currently working in inpatient rehab at Kessler Institute for Rehabilitation in West Orange NJ. The mission of the Elle Foundation is to create memories of joy for children battling a recurrence of cancer. As a sibling of a child who has passed away from cancer Dana is looking forward to sharing her personal experience to raise awareness and give siblings a voice.

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_{Originally presented in February 2019.}

Amanda K. Borchik, MDiv, BCC

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‍Spirituality is often misunderstood in the pediatric palliative care context, due to the individualistic nature of how children and adolescents experience and express their spiritual life. The presenter will provide an overview of children’s spirituality in theory and practice, exploring how relationship, connection, and expression are central to the child’s unique spiritual experience. Strategies for partnering with interdisciplinary teammates to ensure the environment of care nurtures the spirit of the child will be shared.

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Learning Objectives:

1. Understand the theoretical foundation of children’s spirituality
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2. Identify how spirituality can be experienced and expressed in children and adolescents with life-limiting illness, including existential limits
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3. Name practical ways of nurturing spiritual expression for children and adolescents in the pediatric palliative care setting

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Presenter Bio:

Amanda Borchik is a spiritual care researcher, author, and board-certified chaplain at Monroe Carell Jr. Children’s Hospital at Vanderbilt. Specializing in pediatric palliative care, Amanda is an advocate for supporting the natural spiritual expression of children with life-limiting illness at the national and international level through her service to AAHPM’s Pediatric State of the Science, National Coalition for Hospice and Palliative Care- Pediatric Division, and the Pediatric Chaplains Network.

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^{Originally presented in August 2024.}

This presentation will discuss the importance of addressing spiritual health, particularly spiritual distress in the care of pediatric patients with serious illness and their families.

Christina Puchalski | The George Washington University School of Medicine and Health Sciences

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Overview:

The presentation will discuss the importance of addressing spiritual health, particularly spiritual distress in the care of pediatric patients with serious illness, and their families, guidelines which support addressing spiritual issues with patients, and strategies for integrating spiritual care in clinical practice.

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Learning Objectives:

1. Discuss the concept of a generalist specialist module in spiritual care.

2. Explain the importance of addressing spiritual distress in clinical care.

3. Identify communication strategies for eliciting spiritual issues.

4. Develop a whole person assessment and treatment or care plan.

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About the Presenter:

Christina Puchalski, MD, OCDS, FACP, FAAHPM | The George Washington University School of Medicine and Health Sciences

Dr. Puchalski is the founder and Executive Director of the George Washington University’s Institute for Spirituality and Health (GWish) and Professor of Medicine at The George Washington University in Washington, DC.  She is a fellow of the American College of Physicians and the American Academy of Hospice and Palliative Medicine.  Through her innovative curricular development including the development of the widely used spiritual history tool FICA she continues to break new ground in the understanding and integration of spiritual care in healthcare settings as an essential element of whole-person care which has led to the development of Interprofessional Spiritual Care Education Curriculum (ISPEC).  Dr. Puchalski is author of  Time for Listening and Caring: Spirituality, Care of the Seriously Ill and Dying, and co-author of Making Health Care Whole and The Oxford Textbook of Spirituality and Health. In 2018, Dr. Puchalski was named as one of “30 Visionaries” in the field by the American Academy of Hospice and Palliative Medicine.

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_{Originally presented in September 2022.}

Betty Ferrell, F.A.A.N., F.P.C.N., M.A., Ph.D

Gay Walker, RN, CHPN

Spiritual Care is one of 8 domains of quality palliative care as defined by the National Consensus Project Clinical Practice Guidelines. This session will describe the spiritual needs of children and their families as they face serious illness and the end of life.

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Objectives:

1. Describe research related to spiritual needs of children and their families facing serious illness and death.

2. Identify opportunities for improving the assessment of spiritual needs.

3. Recognize spiritual care as essential for all clinicians involved in pediatric palliative care. 

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About the Presenters:

Betty Ferrell, F.A.A.N., F.P.C.N., M.A., Ph.D

Dr. Betty  Ferrell has been in nursing for 42 years and has focused her clinical expertise and research in pain management, quality of life, and palliative care. Dr. Ferrell is the Director of Nursing Research & Education and a Professor at the City of Hope Medical Center in Duarte, California. She is a Fellow of the American Academy of Nursing and she has over 450 publications in peer-reviewed journals and texts. She is Principal Investigator of a Research Project funded by the National Cancer Institute on “Palliative Care for Patients with Solid Tumors on Phase 1 Clinical Trials” and Principal Investigator of the “End-of-Life Nursing Education Consortium (ELNEC)” project. She directs several other funded projects related to palliative care in cancer centers and QOL issues. Dr. Ferrell was Co-Chairperson of the National Consensus Project for Quality Palliative Care.   Dr. Ferrell completed a Masters degree in Theology, Ethics and Culture from Claremont Graduate University in 2007. She has authored eleven books including the Oxford Textbook of Palliative Nursing (5 th Edition, 2019) published by Oxford University Press. She is co-author of the text, The Nature of Suffering and the Goals of Nursing published in 2008 by Oxford University Press and Making Health Care Whole: Integrating Spirituality into Patient Care (Templeton Press, 2010). In 2013 Dr. Ferrell was named one of the 30 Visionaries in the field by the American Academy of Hospice and Palliative Medicine. In 2019 she was elected a member of the National Academy of Medicine.

Gay Walker, RN, CHPN

Gay Walker is the former Program Director for Trinity Kids Care Pediatric Hospice in Los Angeles, California and currently a consultant and speaker for pediatric palliative and end-of-life issues. With over 30 years of nursing experience, Ms. Walker has performed successfully in a wide variety of medical environments and management positions, including supervising clinical services at Rush Presbyterian Hospital in Chicago. 

For the past 20 years, she has been actively involved in leading-edge hospice and palliative care services for children and their families. Ms. Walker continues to develop productive and effective hospice programs, services and curriculum in conjunction with the industry’s leading innovators. She has published the Oxford Textbook of Palliative Care Nursing, the recent Springer publication of Handbook of Long Term Care of the Childhood Cancer Survivor, the International Journal of Palliative Nursing, and the Journal of Palliative Medicine; including an abstract for the general assembly of AAHPM/HPNA in the developing field of spirituality and children. She has been an ELNEC faculty since 2006 and enjoyed the privilege of teaching throughout the world regarding the needs of seriously ill children and their families.  She recently received Compassionate Bereavement Certification.

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_{Originally presented in March 2020.}

Rev. Travis C. Overbeck

In this presentation we will discuss the role of the Chaplain in working with the interdisciplinary team as well as how we go about providing spiritual care to pediatric patients and other children in the family system.  Additionally, we will discuss faith development by age and stage, as well as practical and creative ways to engage pediatrics in conversations around their own spirituality and emotions.

OBJECTIVES:

1. To better understand the role and function of the chaplain with the IDG team as well as how to best utilize the chaplain on your team.

2. To acquire practical tools and skills necessary in providing spiritual care with pediatric patients.

3. To become more aware of how to as well as comfortable in providing spiritual care to children.

About the presenter:

Rev. Travis C. Overbeck, M.Div. Chaplain Seasons Hospice and Palliative Care

Rev. Travis Overbeck earned his Bachelors in Religious studies from California State University, Long Beach in 2007, and then went on to earn his Masters of Divinity from Princeton Theological Seminary in 2010.  Travis is an ordained minister in the Presbyterian Church U.S.A.  With over 15 years experience working with children, teens, and congregations in various ministerial settings, Travis currently serves as a hospice chaplain with Seasons Hospice and Palliative Care in Los Angeles.  Most recently, Travis was invited to join the ChiPPS (NHPCO’s Children’s Project on Palliative/Hospice Services) committee to present at NHPCO’s annual interdisciplinary conference

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_{Originally presented in May 2019.}

Dr. Elisha Waldman

In times of illness and in health, the role of spirituality can be a crucial coping mechanism, even in young children. For a child facing a life-threatening illness, the experience can raise profound spiritual questions of meaning and connection. Spirituality may influence how they experience their illness and play a crucial role in decision-making.

In this webinar, we will explore children's spiritual development and needs, both in terms of theology and practical application for integrating spiritual support for children into your own medical practice.

About the presenter:

Dr. Elisha Waldman, MD

Dr. Waldman is associate chief, division of pediatric palliative care, at the Ann and Robert H. Lurie Children’s Hospital of Chicago. He was formerly medical director of pediatric palliative care at the Morgan Stanley Children’s Hospital at Columbia University Medical Center in New York. He received his BA from Yale University and his medical degree from the Sackler School of Medicine in Tel Aviv. He also trained at Mount Sinai Medical Center and Memorial Sloan Kettering Cancer Center in New York, and at Boston Children’s Hospital. His writing has appeared in Bellevue Literary Review, The Hill, The Washington Post, The New York Times, and Time. He lives in Chicago. Dr. Waldman's book, This Narrow Space was released on January 30, 2018. We're thrilled to have his expertise and experience for this exciting webinar.

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_{Originally presented in January 2018.}

Allison Kestenbaum, BCC-PCHAC, ACPE

Pediatric palliative medical providers care for patients and families facing stressful and emotionally overwhelming illnesses, treatments and prognosis. This session explores methods for communicating with compassion while cushioning the emotional and spiritual well-being of medical providers. Through interactive methods of self-reflection, participants will examine their reflexive responses to suffering. They will practice utilizing self-awareness to offer authentic and connecting verbal and non-verbal responses to those in their care.

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1. Understand the emotional, physical and spiritual impact of actively listening to other people’s concerns and challenges.

2. Develop strategies for deeper and more effective compassionate communication

3. Support sustainable professional practice and well being for pediatric palliative caregivers.

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Allison Kestenbaum, BCC-PCHAC, ACPE

Allison Kestenbaum is the Supervisor of Spiritual Care and Clinical Pastoral Education at UC San Diego Health. She is an Associate Clinical Professor in Health Sciences in the Department of Medicine and Affiliate Faculty at the Sanford Institute for Empathy and Compassion at UCSD. She is a Board Certified Chaplain (NAJC and APC) with Advanced Certification in Hospice and Palliative Care (PCHAC). She is also a Certified Pastoral Educator (ACPE). Allison conducts research about palliative and spiritual care education and is founding faculty at SpiritualAIM.org.  She has worked at UC San Francisco Health, Jewish Theological Seminary and UJA-Federation of New York.   She was the first chaplain to receive a Sojourns Scholar Award for palliative care leaders. She is a mom of two school aged children.

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_{Originally presented in February 2026.}

Colleen Cicchetti | Ann & Robert H. Lurie Children’s Hospital, Audrey Stillerman | UIC, Ann & Robert H. Lurie Children’s Hospital, Megan Lerner | Ann & Robert H. Lurie Children’s Hospital

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Overview:

This presentation will build upon a core understanding of trauma and how childhood experience connects to health. Discussion will describe a range of traumatic experiences and how it may manifest itself in children and families, including the unique experiences related to a medical diagnosis. The session also acknowledges the impact on staff and participants will be introduced to simple practices to promote provider well-being and to help with emotional regulation for self and for families.

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Learning Objectives:

1.  Increased capacity to explain the importance of adopting a trauma lens for palliative care health professionals and educators

2.  Increased capacity to embed best-practice strategies for adopting trauma responsive (healing centered) approaches within the Palliative Care Team to support patients, families and staff

3.  Increased access to strategize to support provider well-being for staff working in this setting

About the Presenters:

Colleen Cicchetti, PhD

Dr. Colleen Cicchetti is the Executive Director of Center for Childhood Resilience (CCR), a Clinical Psychologist at Ann & Robert H. Lurie Children’s Hospital of Chicago, and an Associate Professor at Northwestern University’s Feinberg School of Medicine. Dr. Cicchetti has over 30 years of experience in hospital, outpatient and community settings. She is passionate about and committed to addressing health disparities and decreasing exposure to violence and trauma for children and families through innovative, healing centered public health strategies and multidisciplinary collaboration.

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Audrey Stillerman, MD

Dr. Audrey Stillerman is Medical Director for UIC Office of Community Engagement’s School Health Centers and Clinical Assistant Professor of Family and Community Medicine. Since 1991, Dr. Stillerman has provided comprehensive care for families in community health centers and other public settings while advocating for equity. Dr/ Stillerman received additional training in Family Therapy, Mind/Body Medicine and meditation practices. She is Phase 2Certified in the Child Trauma Academy’s Neurosequential Model of Therapeutics. A co-founder of the Center for the Collaborative Study of Trauma, HealthEquity, and Neurobiology (www.thencenter.org), Dr. Stillerman is also an Advisory Council member of the Illinois ACEs Response Collaborative and the proud mother of two beloved daughters.

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Megan K. Lerner, LCSW

Megan Lerner graduated with a masters degree in social work from Washington University in St. Louis with concentrations in children, youth and families and mental health. Following graduation, Ms. Lerner began working for Ann & Robert H. Lurie Children’s Hospital of Chicago where she has been in practice for 15 years. Ms. Lerner is nationally certified as a Trauma Focused Cognitive Behavioral Therapy (TF-CBT) provider, and has expertise in individual, family and group-based interventions for youth with trauma-related disorders. Ms. Lerner is also trained in Attachment, Regulation and Competency (ARC), Trauma and Grief Component Therapy for Adolescents (TGCTA), Bounce Back, Cognitive Behavior alI intervention for Trauma in Schools (CBITS), and is certified to teach yoga to children

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_{Originally presented in October 2022.}

This presentation will discuss the importance of addressing spiritual health, particularly spiritual distress in the care of pediatric patients with serious illness and their families.

Christina Puchalski | The George Washington University School of Medicine and Health Sciences

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Overview:

The presentation will discuss the importance of addressing spiritual health, particularly spiritual distress in the care of pediatric patients with serious illness, and their families, guidelines which support addressing spiritual issues with patients, and strategies for integrating spiritual care in clinical practice.

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Learning Objectives:

1. Discuss the concept of a generalist specialist module in spiritual care.

2. Explain the importance of addressing spiritual distress in clinical care.

3. Identify communication strategies for eliciting spiritual issues.

4. Develop a whole person assessment and treatment or care plan.

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About the Presenter:

Christina Puchalski, MD, OCDS, FACP, FAAHPM | The George Washington University School of Medicine and Health Sciences

Dr. Puchalski is the founder and Executive Director of the George Washington University’s Institute for Spirituality and Health (GWish) and Professor of Medicine at The George Washington University in Washington, DC.  She is a fellow of the American College of Physicians and the American Academy of Hospice and Palliative Medicine.  Through her innovative curricular development including the development of the widely used spiritual history tool FICA she continues to break new ground in the understanding and integration of spiritual care in healthcare settings as an essential element of whole-person care which has led to the development of Interprofessional Spiritual Care Education Curriculum (ISPEC).  Dr. Puchalski is author of  Time for Listening and Caring: Spirituality, Care of the Seriously Ill and Dying, and co-author of Making Health Care Whole and The Oxford Textbook of Spirituality and Health. In 2018, Dr. Puchalski was named as one of “30 Visionaries” in the field by the American Academy of Hospice and Palliative Medicine.

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_{Originally presented in September 2022.}

‍Stress is an inevitable part of life -- especially for those of us who are caregivers in our personal and professional lives.

Miriam Stewart | Children's Hospital of Philadelphia

Overview:

Stress is an inevitable part of life -- especially for those of us who are caregivers in our personal and professional lives. We all encounter moments that challenge us, stretch us, or bring up strong feelings. The good news is that there are tools that can make it easier to manage stress in a healthy way so that it does not lead to distress or illness. In this webinar, palliative care physician and mindfulness teacher Miriam Stewart will discuss practical tools for managing stress and strategies for fitting these tools into our busy lives. Participants will have the opportunity to learn brief mindfulness practices and experience a guided meditation as part of the session.
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Learning Objectives:

1. Define stress and eustress and understand your stress phenotype
2. Name and enact the three phases of a mindfulness practice
3. Incorporate three brief mindfulness and self-care practices into the workday
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About the Presenter:

Miriam Stewart

Dr. Stewart is an attending physician on the palliative care and complex care hospitalist teams at the Children’s Hospital of Philadelphia, where she also serves as the Director of Physician Wellbeing.  She is a mindfulness practitioner and teacher and is one of the co-founders of CHOP’s Mindfulness Collaborative.

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_{Originally presented in March 2022.}

Lori Butterworth, M.Ed.

Kelly Johnson, PhD, RN, NEA-BC

Objectives:

1. Identify key factors that lead to burnout
2. Determine their own personal risk for burnout
3. Delineate compassion fatigue and moral distress in relation to moral resilience and professional satisfaction 
4. Evaluate resilience-building interventions to mitigate burnout at the personal and institutional levels

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About the Presenters:

Lori Butterworth, M.Ed.

Lori Butterworth is an advocate for children, dedicated to ensuring that every child with a life-threatening illness receives compassionate, family-centered care that allows them to live well and die with dignity. In 1998, she founded Jacob’s Heart Children’s Cancer Support Services to provide emotional, practical, financial and bereavement support to families of children with cancer with particular focus on addressing the needs of low-income families living in the rural, agricultural areas of Central California. In 2002, she co-founded the Children’s Hospice & Palliative Care Coalition, a state-wide coalition to open access to hospice and palliative care for children in California, spearheading healthcare policy initiatives including the enactment of the Nick Snow Children’s Hospice and Palliative Care Act and the Concurrent Care for Children provision the Affordable Care Act. Lori earned a master’s degree in education and is currently pursuing a second master’s degree in Psychology from Harvard University conducting research on workplace burnout and post-traumatic growth.

Kelly Johnson, PhD, RN, NEA-BC

Kelly Johnson is the Vice President of Patient Care Services and Chief Nursing Officer at Lucile Packard Children’s Hospital Stanford. She has more than 22 years of chief nursing officer experience. She most recently served as the Dori Biester Chair in Pediatric Nursing and senior vice president and chief nursing officer at Children’s Hospital of Colorado. Johnson began her career in health care as an RN, advanced practice nurse, and manager. She holds a BSN from the University of Northern Colorado, MSN from the University of California San Francisco with specialization in Neuroscience and Family Health (FNP), and a PhD from the University of Colorado Anschutz Medical Campus, College of Nursing in Health Outcomes. From 1993-2008, Johnson served as Vice President for Patient Care Services and Chief Nursing Officer at Craig Hospital, which is a world-renowned, premier center for specialty rehabilitation and research for people with spinal cord and traumatic brain injury.

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_{Originally presented in February 2020.}