Since 2018, the Pediatric Palliative Care Webinar Series has been providing high quality educational programming for the entire interdisciplinary team. These past webinars are now available for viewing. We encourage you to use these recorded webinars for individual or group staff training, IDT meetings or any time you need to bring an expert into your organization’s training room.
Webinar recordings are $25 each ($30 for 2023 webinars). Upon purchase, you will receive a link to download the video. That link/video is yours to keep. There is no time limit on viewing. At this time, CE is not available for viewing the archived webinars.
Purchase 4 Webinars at the same time and receive 25% Off use code: ARCHIVE4
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
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.
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
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.
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.
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
Originally presented in October 2022.
Conrad Williams, MD, Kristin James, LCPC
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.
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
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.
Originally presented on November 16, 2021
Dr. Debra Lotstein
In this presentation, Dr. Lotstein and Ms. Albers, will share ways that Expressive therapies can increase the quality of life of children with serious illness and their families. They will also describe how these therapies can impact care provided by the rest of the interdisciplinary team, and review ways that Palliative care providers might highlight the value of the expressive therapies to payors.
1. Understand who provides expressive therapies and what is provided in both hospital and home settings.
2. Explore the psychosocial benefits of expressive therapies to children with serious illness
3. Describe the ways expressive therapies can add value to the work of the interdisciplinary palliative care team.
About the presenters:
Debra Lotstein, MD, MPH Director, Division of Comfort and Palliative Care, Children’s Hospital Los Angeles; Associate Professor of Pediatrics, University of Southern California
Dr. Lotstein is dedicated to improving the quality of life for children with serious illness, their families, and the health professionals who care for them. She is the Director 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 Pediatrics at the Keck School of Medicine, University of Southern California. As the director, Dr. Lotstein oversees the Division's clinical, educational and research efforts. She is an attending physician for the team’s inpatient and outpatient clinical services. In 2017, she was named a Sojourns Scholar of the Cambia Health Foundation, a national initiative to identify and cultivate the next generation of palliative care leaders. As a Sojourns Scholar, she is working to improve access to home-based hospice and palliative care for children. Dr. Lotstein received her medical degree from Stanford University and completed her combined residency in internal medicine and pediatrics at Cedars Sinai Medical Center in Los Angeles. She is triple Board-certified in pediatrics, internal medicine, and hospice and palliative medicine. In addition, she was a health services research fellow in the Robert Wood Johnson Clinical Scholar’s Program and received a master’s degree in public health from UCLA.
Nicole F. Albers, MA, LMFT, ATR-BC Team Lead - Expressive Arts and Therapies Team, Children’s Hospital Los Angeles
Nicole Albers is a licensed Marriage and Family Therapist and Board Certified Art Therapist who has worked at Children’s Hospital Los Angeles since 2011. She serves as the Team Lead for the Mark Taper –Johnny Mercer Artists Program. She graduated with a Master’s degree in Marriage and Family Therapy and Art Therapy from Loyola Marymount University in 2003. Prior to working at CHLA, she worked with children in residential treatment facilities, providing services to families in foster care, probation, and collaborating with public schools. Nicole has embraced her work with the pediatric population and has a passion for working with children: with Sickle Cell Disease, Cystic Fibrosis, and those awaiting organ transplants. She has introduced and presented on Art Therapy at local and statewide conferences, Grand Rounds, as well as speaking at universities. Nicole maintains her own personal art practice outside the hospital, and enjoys using mixed media, assemblage, and black and white photography.
Originally presented on October 17, 2019
Arshia Madni, St. Jude Children's Research Hospital | Elizabeth Hawkins, St. Jude Children's Research Hospital | Sylvia Miranda, Medical Interpreter
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.
1. Define cultural humility and its role in clinical care
2. Explore barriers to culturally inclusive care
3. Obtain skills in navigating challenging discussions
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 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 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.
Originally presented in February 2022.
Dr. Audrey Foster-Barber
Many children in hospice have neurologic symptoms at the end of life, whether their underlying disorder is primarily neurologic or as a late complication of a malignancy or other medical issue. We will review common causes of neurologic symptoms, including agitation or irritability, seizures, and tone abnormalities. We will discuss approaches to management of these symptoms, including nonpharmacologic and pharmacologic treatments that can be achieved in the home or hospice setting.
1. Identify risk factors for seizures at the end of life
2. Understand the natural course of a prolonged procedure at home, and approaches to comfort measures
3. Identify risk factors for neurological-irritability and approaches to treatment
4. Recognize the ways that hypertonia or movement abnormalities can cause discomfort, and understand pharmacologic and nonpharmacologic approaches
About the presenter:
Dr. Audrey Foster-Barber
Dr. Audrey Foster-Barber is Associate Professor of Neurology at UCSF. She is an expert in pediatric neurology who has a special interest in treating problems related to seizure, pain, movement disorder and neurogenetic disorders. She is outpatient director of the Pediatric Brain Center at the Benioff Children's Hospital, San Francisco, Program Director for the Child Neurology Residency at UCSF, and Vice Chair of Education for the Department of Neurology. She is additionally board certified in Hospice and Palliative Medicine, and works with the pediatric hospice team at Hospice By the Bay. Foster-Barber graduated from Harvard College, where she earned an undergraduate degree in biology. At UCSF, she earned a medical degree and doctorate in biochemistry with an emphasis on neuroscience. She also completed a residency in pediatrics and child neurology at UCSF. She is the recipient of the UCSF Medical Center Exceptional Physician Award, several teaching awards, and the Child Neurology Society Gold Humanism Award for 2018. In her treatment of children with neurological disorders, she strives to maximize their quality of life and developmental potential while supporting patients and families on their journey wherever it takes them.
Originally presented on June 21, 2018.
Lori Butterworth, Emily Johnston, Janelle Molina
Despite an increase in specialized pediatric palliative care programs there remain inadequacies in end of life (EOL) care for children. This presentation will review the perspectives of 28 Spanish- and English-speaking bereaved parents who detailed qualitative experiences about their children’s end of life care. Parents' perspectives from the study highlight the importance of 1) supporting home death and low medical intensity of EOL care, 2) policies/programs that allow families to spend as much time with their child at EOL as possible, and 3) continuing care at EOL and beyond.
1. Identify quality markers for end of life care for children, from bereaved parents’ perspective
2. Describe barriers to parents spending time with their children at the end of life
3. Gain practical insights about parent preferences for location of death and what factors influence those preferences (culture, economics, proximity to the hospital, availability of resources)
About the Presenters:
Lori Butterworth MEd, MA has been a leading advocate for children's health and wellbeing for more than two decades. She currently serves as the CEO of AIM Youth Mental Health, the Founder of Jacob's Heart Children's Cancer Support Services, and Co-Founder and Steering Committee member of the Children's Hospice & Palliative Care Coalition of California.
Emily Johnston, MD is a pediatric oncologist with a clinical focus on solid tumors and research focus on disparities in end-of-life care. She is originally from Iowa, went to Carleton College in Minnesota for undergraduate before heading to Stanford for her medical training (medical school, residency, and fellowship). She joined the UAB faculty back in July of 2018.
Janelle Molina, BS works on Phase IV clinical studies within Clinical Operations at Gilead Sciences. Jannelle is dedicated to improving the lives of patients on clinical trials, based on previous work in pediatric oncology as well as the passing of her best friend from ovarian cancer. Raised in the Bay Area as a first generation Mexican-American, she has learned to navigate care for underinsured, uninsured, and recently arrived immigrants within her community.
Originally presented on October 19, 2021
Lori Wiener, PhD
Meaghann Shaw Weaver, MD, MPH, FAAP
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.
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.
About the Presenters:
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.
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.
Originally presented on July 21, 2020
Jenny Goldhammer, John Mark, Lily Rich
Children experience their world through play, creativity, and imagination. It is how they learn and process, and provides mastery over their environment. Play becomes all the more important when faced with adversity or trauma. In a medical setting, expressive therapies can be used to help children understand and process their illness and can even have a tangible effect on their physical symptoms and overall wellness. This course will provide an introduction to the broad range of expressive therapy options that can be used as a part of a child's medical care. Through case examples and sample interventions, the presenters will share ways in which imagery, song, words, and other forms of creativity can help a child process and express feelings related to their health and treatment.
1. Introduce a broad range of expressive therapy options that can be used in addition to traditional therapeutic and pharmaceutical interventions
2. Demonstrate how expressive therapy interventions can help children express underlying thoughts and feelings about their treatment
3. Describe how guided imagery may help children with pain, anxiety and relaxation as coping strategies4) Explain at least three expressive therapy interventions that attendees can apply to their work
About the Presenters:
Jenny Goldhammer, MM, MT-BC is a board-certified Music Therapist at UCSF Benioff Children's Hospital, San Francisco. She works with patients in the Intensive Care, Transitional Care, and Medical/Surgical Units. She received a B.A. in music with a minor in brain and cognitive sciences from the University of Rochester, and her M.A. in Music Therapy from Drexel University. Jenny is a strong believer in person-centered therapy and strives to meet each patient where they are that day through music and play.
John Mark, MD is the Program Director for the Pediatric Pulmonary fellowship program, Associate Program Director for the Pediatric Integrative Medicine fellowship and the Medical Director for the Coordinating and Optimizing Resources Effectively (CORE) Program at Packard Children’s Hospital, Stanford University. This innovative program assists with care coordination and communication with all health care providers for children with complex medical needs. Dr. Mark utilizes non-conventional approaches with patients who have chronic illnesses such asthma and cystic fibrosis. He is interested in nutrition and the mind/body approach to healing in an effort to decrease dependence on medication.
Lily Rich, PsyD volunteered at Jacob’s Heart during her first year of college and helped grow our programs back in 1999. Inspired by what she learned at Jacob’s Heart, Dr. Rich went on to receive her doctorate in clinical psychology from Argosy University in 2008 and has been working with clients in the San Francisco and Santa Cruz areas since 2009. In 2012 she transitioned from a position at Mills Hospital where she worked with seniors, adults and adolescents through her program, Healing at Home. Dr. Rich returned to Jacob’s Heart in 2015 to serve as a clinical psychologist and direct our counseling services.
Originally presented on September 23, 2021
Melissa Hunt, Jessica Sturgeon
Children with life-limiting conditions have complex, frequently-changing medication regimens. Medication information is complicated to relay and difficult for patients/families to understand. Education must be engaging and developmentally appropriate for the patient. Interdisciplinary teams should work together to combine the medication knowledge with excellent patient-focused communication skills. This session will walk through three complicated pediatric cases, focusing on interdisciplinary communication strategies to ensure effective and accurate discussions with patients and families regarding medication plans.
1. Identify key hospice medications used to manage symptoms in children.
2. Utilize at least three (3) techniques to communicate proper use of hospice medications to children and families in accurate and developmentally appropriate ways.
3. Distinguish different communication strategies throughout the cognitive stages of development.
About the Presenters:
Melissa Hunt, PharmD is a pediatric clinical pharmacist with Optum Hospice Pharmacy Services where she serves on interdisciplinary teams and provides medication and symptom management consults and education. She is a member of the Pediatric Pharmacy Association and serves on the Pediatric Advisory Council of NHPCO and the Pediatric Palliative Care Task Force for the National Coalition for Hospice and Palliative Care.
Jessica Sturgeon, MT-BC, HPMT is a Board-Certified Music Therapist with a Certificate in Hospice and Palliative Care Music Therapy. Specializing in pediatrics, Jessica has served as a pediatric-specialized music therapist in home-based hospice, palliative care, and bereavement programs for Treasure Coast Hospice and currently also acts as a music therapist at Seasons Hospice. Jessica currently sits on the Pediatric Advisory Council through NHPCO.
Originally presented on April 20, 2021
This presentation will provide professionals with education and tools on how to involve children in decision making commensurate with their development, medical knowledge, and interest in participating in their medical treatment.
This presentation will provide professionals with education and tools on how to involve children in decision making commensurate with their development, medical knowledge, and interest in participating in their medical treatment. Theories of developmental science, psychology, and thanatology will be used to foster understanding of how to develop child-centered strategies and tools to use in your practice to address the unique needs of the pediatric palliative care patient and their family.
1. Identify age appropriate strategies and tools to support psychosocial coping
2. Understand a developmental science framework behind the profession of child life
3. Demonstrate ways to promote autonomy in pediatric patients
4. Examine the ethics of including children in medical decision making
Dr. Korie Leigh is an Associate Professor and Program Director in the Thanatology Department at Marian University, the Director of Family Services at Hero's Path Palliative, and a practicing Certified Thanatologist and Certified Child Life Specialist in her private practice. She has spent over 17 years working in pediatric palliative and hospice care providing psychosocial and grief support to children and their families. Dr. Leigh has presented at national, regional, and international conferences on topics of legacy building in pediatric end-of-life care, child life practice in hospice, contemporary approaches in grief, and other thanatology-related topics. Dr. Leigh has authored several articles and recently co-authored a chapter in the newly published Child LIfe in Community Settings textbook. Her debut book titled What does grief feel like is set to be released with Free Spirit Publications in April of 2023.
Jennifer Mangers-Deans has been actively engaged in the Pediatric Hospice & Palliative Care field since 2010 where she started the first Child Life program for hospice in the state of Illinois. Since then she has been involved in work with the National Hospice & Palliative Care Organization (NHPCO) in updating the standards of Care for Pediatric Hospice & Palliative Care and working with the state of Illinois on legislation measures for reimbursement for hospice and palliative care. She speaks both at the state level and nationally on the importance and benefits of Pediatric Hospice & Palliative Care including education, program needs, and reimbursement processes. She was the manager of the Pediatric Program at JourneyCare for 5 years before becoming the Director of Pediatric and Serious Illness Services at Lightways in July 2022. In 2011 she created a small group of child life professionals working together to help each other in the Hospice & Palliative care world. In 2022 that group grew to form the Child Life Hospice & Palliative Network (CLHPN) with the support of GIPPCC (Greater Illinois Pediatric Palliative Care Coalition). This network focuses on education and training, professional collaboration, and advocacy for child life specialists in hospice & Palliative Care.
Originally presented in September 2023.
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.
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.
Originally presented on March 19, 2019
Dr. Jennifer Mack
This talk will center on experiences of adolescents and young adults with life-threatening illnesses, including their end-of-life care experiences and their needs for communication and engagement in decision-making.
1. To understand care experiences of adolescents and young adults (AYAs) at the end of life
2. To identify AYA needs for communication about life-threatening illness
3. To consider AYAs’ needs for involvement in decision-making, and clinician behaviors that support their involvement
About the presenter:
Jennifer Mack, MD, MPH Associate Chief, Population Sciences for Pediatric Hematology/Oncology Boston Children’s Hospital/Dana-Farber Cancer Institute
Dr. Mack received her medical degree from Harvard Medical School 1998. She subsequently completed her residency in Pediatrics and her fellowship in Pediatric Hematology Oncology at Children's Hospital, Boston and the Dana-Farber Cancer Institute in Boston, MA. In 2005, Dr. Mack received a Masters in Public Health from the Harvard School of Public Health. She is an attending physician at Dana-Farber Cancer Institute and Boston Children's Hospital, the co-Director of Population Sciences at Boston Children's, and Associate Chief for Pediatric Oncology Population Sciences at Dana-Farber. She is also an Associate Professor of Pediatrics at Harvard Medical School. Her research interests are in parent-physician and patient-physician communication, health care equity and quality, and palliative care.
Originally presented on July 18, 2019.
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.
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.
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 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.
Originally presented in May 2023.
Methadone, when dosed appropriately, may improve pain control for children even when other opioids have been insufficient. Providers are often hesitant to prescribe methadone for children due to somewhat complex pharmacology. Attendees will apply knowledge gained from this session to patient case studies, increasing confidence and understanding when to initiate, monitor, and care for children on methadone safely and effectively.
Melissa Hunt, PharmD, BCPPS is a board-certified pediatric clinical pharmacist with Optum Hospice Pharmacy Services where she serves on interdisciplinary teams and provides medication and symptom management consults and education. She is a member of the Pediatric Pharmacy Association and serves on the Pediatric Advisory Council of NHPCO and the Pediatric Palliative Care Task Force for the National Coalition for Hospice and Palliative Care.
Originally presented in March 2023.
The presenter will highlight the role of music therapy to support caregiver coping and will discuss how music therapists can provide meaningful opportunities for connection and beauty. The use of clinical case studies and consented media examples will be incorporated to further demonstrate these concepts. This presenter will discuss the ways in which overarching frameworks and concepts from this presentation can be integrated into clinical work by interdisciplinary providers. Recommended techniques that can be utilized in the home setting to support and respond to caregiver guilt of patients and families receiving palliative / and or hospice care will be provided.
Lydia Westle, MMT, MT-BC, Music Therapy Clinical Expert
1. Define, describe and identify sources of caregiver guilt
2. Identify interdisciplinary interventions to enhance caregiver coping
3. Identify basic tools and techniques that can be utilized in the home setting to support and respond to caregiver guilt of patients and families receiving palliative and/or hospice care
Lydia Westle, MMT, MT-BC has been working professionally as a Board Certified Music Therapist for 12 years and currently works in the role of Music Therapy Clinical Expert at Children’s Hospital of Philadelphia. In Lydia’s current position, she maintains a clinical caseload working directly with patients and families with a variety of chronic and acute medical diagnoses and also partners with the Manager of Creative Arts Therapy to support leadership/administrative tasks. Lydia has earned both a Bachelor's and Master's in Music Therapy from Temple University and has additionally obtained specialized training to become a Certified Hospice and Palliative Care Music Therapist. Since coming to CHOP, Lydia has developed a strong passion for providing music therapy to pediatric patients and families receiving palliative care and end of life care, with a particular clinical interest in legacy building and memory making interventions. Lydia is honored to have had the opportunity to present regionally, nationally and internationally on these topics and is currently in the process of writing as a contributing author for the 2n edition of "Music Therapy at End of Life," which is anticipated to be published in 2023.
Originally presented in February 2023.
Nicole C. Hahnlen & Deana Deeter
Many patients diagnosed with Trisomy 18 are living longer than once predicted. What has changed in this population? This session will highlight current research on Trisomy 18 and explore opportunities for providing meaningful care in a patient population fraught with difficult decision-making and uncertain outcomes.
1. Describe clinical features and contemporary outcomes for children with Trisomy 18
2. Discuss factors influencing decision-making for both families and professionals
3. Identify challenges in providing medical care to children with Trisomy 18 that is congruent with the family’s identified goals
About the presenters:
Deana Deeter, CRNP, CHPPN, CPON, RN-BC Penn State Hershey Children’s Hospital Hummingbird Program Manager
Deana Deeter graduated from The Ohio State University with MS in Nursing in 2006 and Bachelors in Agriculture in 2003. Deana worked for 8 years as a nurse practitioner in pediatric palliative care, and prior to that worked for almost 5 years as a nurse practitioner in pediatric hematology/oncology. Deana completed the Pediatric ELNEC Train the Trainer program in 2009, and have taught portions of the course for the past 6 years. She holds certifications in pediatric hospice and palliative nursing (CHPPN), pediatric oncology nursing (CPON), and pain management nursing (RN-BC).
Nicole Hahnlen RN, CHPPN Penn State Children's Hospital Hummingbird Program Nurse Coordinator
Nicole Hahnlen is the nurse coordinator of Hummingbird Program, the pediatric palliative care program at Penn State Children’s Hospital. She is an executive board member of the Pediatric Palliative Care Coalition. Nicole holds a B.S. in nursing from the Pennsylvania State University and a B.A. in family studies from Messiah College.
Originally presented on November 21, 2019
Shayna Stiles and Brandi O'Brien, NP
This webinar will serve to help participants gain an understanding and appreciate for the complexities of caring for children with life-limiting illness. We will explore the development of pediatric concurrent care in California, the regulatory requirements and how our organization meets the needs of this special population. Ultimately, we hope to impart an appreciation for pediatric hospice, concurrent care and the team(s) who care for this population.
1. Gain an understanding and differentiate between pediatric concurrent care, hospice and waiver programs
2. Identify examples of current pediatric hospice and concurrent care patients
3. Explore how pediatric hospice/concurrent care differs from adult hospice programs
About the presenters:
Shayna Stiles, Executive Director Providence TrinityCare
Shayna Stiles has been the Executive Director of Providence TrinityCare since 2017. Prior to this, she served as Director of Operations for Providence TrinityCare and as Manager for TrinityKids Care, a pediatric program of Providence TrinityCare. As a hands-on leader with an analytical, innovative, performance-driven with over 27 years of progressive experience in healthcare systems, Ms. Stiles is highly adept at identifying, recommending and implementing creative tools, policies and procedures to streamline medical operations and positively impact growth. Under her leadership, the program has seen the development and implementation of a state pediatric waiver program and grew the pediatric programs by 50%, and TrinityKids Care has evolved into the leading provider for pediatric hospice and palliative care in Los Angeles and Orange counties and the only hospice program in the area to be staffed by a dedicated pediatric interdisciplinary team. Excelling at collaborating with all levels of staff and support systems to motivate teams to accomplish strategic priorities and initiatives, she brings meaningful and measurable results in an ever changing health care environment.
Brandi O'Brien, NP Pediatric Nurse Practitioner Providence TrinityKids Care Hospice
Brandi O’Brien is a Pediatric Nurse Practitioner for Providence TrinityKids Care Hospice. She is board certified in pain management, oncology, hospice and palliative care, public health and as a Nurse Practitioner in both Acute Care Pediatrics and Adult/Gerontology. Ms. O'Brien is an active member on the research council of the National Board of American Society of Pain Management Nurses and a boad member of the local chapter. Her education includes a Master’s degree from the University of California, San Francisco and a Post master’s degree from California State University, Los Angeles. She has experience in teaching locally and nationally in pain management, palliative care and oncology. She has also developed standardized protocols including Opioid Induced Constipation, Sleep Hygiene implementation of a pain resource nurse steering committee. Her past nursing experience includes oncology, bone marrow transplant, pain management, hospice and palliative care and infusion care. This year, Ms. O'Brien will be working jointly with another pediatric palliative care provider on research regarding care coordination across the continuum. In her free time, she enjoys triathlons and traveling.
Originally presented on May 15, 2018
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.
Maureen Lyon | Children’s National Medical Center & The George Washington University School of Medicine and Health Sciences
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.
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
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.
Originally presented in August 2022.
In this webinar we will discuss end of life protocols through the lens of creating legacy with the goal to integrate medical practicalities with the wishes, hopes and beliefs of the child and family.
Nichole Stangel | Children's Wisonsin
In this webinar we will discuss end of life protocols through the lens of creating legacy with the goal to integrate medical practicalities with the wishes, hopes and beliefs of the child and family. Holistic protocols can provide the best possible end of life experience and foster healing for the family and health care team.
1. Recognize the variety of definitions of legacy and legacy-making
2. Understand the difference between memory making items and legacy
3. Name three reasons why legacy-making might be considered as a foundational theoretical practice for EOL protocols
4. Identify two tangible legacy-making interventions that can be used in a hospital setting
Children’s Wisconsin, Bereavement Coordinator/CISM Coordinator
Originally presented in July 2022.
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.
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.
Originally presented on April 16, 2019
Dr. Scott Maurer
In this webinar, we will review the available data on decision making in pediatric palliative care. We will also discuss barriers to decision making, as well as a method to help providers think through difficult decisions with parents of children who have life-limiting illness.
About the presenter:
Scott Maurer, MD
Dr. Maurer provides palliative care consultative services to patients on all services in the hospital. He focuses on advanced care planning, decision making support, pain and symptom management, care coordination, end-of-life, and bereavement care for pediatric patients with life-limiting illness. Together with colleagues from the supportive care team, obstetrics, genetics, and neonatology, Dr. Maurer co-founded a perinatal palliative care program at the University of Pittsburgh. He also serves as the pediatric palliative care course director for the University of Pittsburgh palliative care fellowship program, and provides teaching to pediatric residents and medical students. Dr. Maurer has mentored numerous medical students, residents, and fellows in clinical and research palliative care projects. He is active in both institutional and cooperative research projects in pediatric palliative medicine, and has spoken at national and international conferences about how to better care for children requiring palliative medicine services. Dr. Maurer received his medical degree from Oregon Health & Science University in 2004, completed a pediatric residency at the University of Washington, and a fellowship in pediatric hematology/oncology with palliative care training at St. Jude Children’s Research Hospital. He is board certified in pediatrics, pediatric hematology/oncology, and hospice and palliative medicine.
Originally presented in February 20, 2018
Janet Duncan, MSN, CPNP
Providers and parents want to make the “best” decisions for a child with a serious illness. Ideally in shared decision-making, providers and families each have space to give and receive information, articulate and consider the options before them, and to discuss their thoughts and feelings honestly and respectfully.
This process is not straight-forward and is filled with thinking and logic alongside emotion and hope.
How can we participate meaningfully? How can we deconstruct what families hear and think? How can we facilitate/share/enhance the best decision-making on behalf of the beloved, unique child sometimes in the face of parental indecision and prognostic uncertainty?
About the Presenter:
Janet Duncan 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 began her career at the bedside of pediatric oncology patients and later learned from children with diverse illnesses and their families. She retired in 2017 however began doing medical provider outreach for Courageous Parents Network in spring of 2019 to return to her passion of supporting families and those who care for them.
Originally presented on January 23, 2020
Dr. Elissa Miller
This webinar will discuss the history of medical marijuana and the current medical marijuana laws in the United States. We will also discuss current evidence and recommendations for medical marijuana use in pediatric palliative care.
About the presenter:
ELISSA MILLER, MD Chief, Division of Palliative Medicine Nemours/Alfred I. duPont Hospital for Children Wilmington, Delaware
Dr. Miller is the Chief of the Division of Palliative Medicine at the Nemours/Alfred I duPont Hospital for Children in Wilmington, Delaware. She attended medical school at the University of Rochester School of Medicine and Dentistry in Rochester, New York. Dr. Miller completed her pediatrics training at the Children’s Hospital of Philadelphia, Pennsylvania. After finishing her pediatrics residency, she went on to complete a fellowship in Pediatric Hospice and Palliative Medicine at the Children’s Hospital of Philadelphia. In 2011, she joined the faculty at Nemours and started the hospital’s palliative care program. Since joining Nemours, Dr. Miller has built a thriving interdisciplinary palliative care team and created curricula for pediatric residents and fellow palliative care education. She has presented nationally and regionally on a number of topics.
Originally presented on October 18, 2018
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
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.
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
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.
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.
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.
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.
Originally presented in January 2022.
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.
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.
Originally presented on Februry 21, 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.
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.
Originally presented on June 20, 2019
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.
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.
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.
Originally presented on June 16, 2020
Rachel Zoffness, PhD
This course will cover basic pain neuroscience education, how to “explain pain” to youth and parents, and how to incorporate user-friendly metaphors when treating pediatric pain. This talk also offers an introduction to Cognitive Behavioral Therapy (CBT) for pediatric chronic pain and illness, outlining how to explain and implement a biopsychosocial approach to treatment, techniques used in CBT, and patient psychoeducation.
1. Learn how to teach the biopsychosocial model of pain management to pediatric patients and their caregivers.
2. Learn how to “explain pain” to youth and families using neuroscience and metaphor.
3. Discuss 3 CBT strategies used in pediatric pain management.
About the Presenter:
Rachel Zoffness, PhD is a pediatric pain psychologist and Assistant Clinical Professor at the UCSF School of Medicine, where she teaches a pain education course for residents. She sits on the board of the American Association of Pain Psychology, where she founded the Pediatric Division, and piloted the Psychology Today column “Pain, Explained.” Her book, The Chronic Pain and Illness Workbook for Teens, is the first of its kind to offer pain education and evidence-based pain management techniques for teens/young adults. Her second book for adults and health providers comes out in 2020. More resources and information about Dr. Zoffness can be found at zoffness.com.
Originally presented on September 15, 2020
Blyth Lord, EdM & Nancy Frumer Styron, JD, PhD
In this webinar, we will share important information for providers regarding an understanding of anticipatory grief and the challenges of parenting a child who is dying, as well as parental bereavement following the death of a child. The webinar will include symptoms of grief, seeking support and normalizing the parents' experience. This will better equip providers to work with patients during this challenging course of care.
1. Recognize the many aspects of grief
2. Understand the meaning of anticipatory grief
3. Identify some of the symptoms of anticipatory grief
4. Identify at least three issues parents face following the death of a child
5. Appreciate the importance of support for parents and siblings before and following the death of a child, and name three types of support available to families.
About the Presenters:
Blyth T. Lord, EdM
Blyth Lord is the founder and executive director of Courageous Parents Network, a nonprofit web and mobile platform that empowers parents caring for children with serious illness, including the promotion of pediatric palliative care. Blyth's daughter, Cameron, died of Tay-Sachs disease in 2001. Blyth is also co-chair of the AAP's Section on Hospice and Palliative Medicine's Parent Advisory Group. Prior to founding Courageous Parents Network, Blyth worked for over 20 years as a television producer, including positions at WGBH in Boston and ABC News in Washington, DC. She produced the award-wining film, Cameron's Arc, with the American Academy of Pediatrics to educate doctors in working with families from the time of diagnosis through to the end of life. Blyth is currently serving as the Board President for the patient disease group at National Tay-Sachs and Allied Disease. Blyth received her BA in History from Yale College and has a Master's in Education from Harvard.
Nancy Frumer Styron, Jd, PsyD
Nancy Frumer Styron is a licensed psychologist and the clinical director of The Children's Room, a bereavement center in Arlington, MA. Nancy comes with a background in pediatric psychology and a specialty in oncology. For over 20 years, she has seen patients and their families who have been affected by diagnosis, treatment, loss and death as she worked in outpatient services at The Dana-Barber Cancer Institute and at Boston Children's Hospital. she also served as the training director for graduate students in the fields of social work and psychology at Dana-Farber and continues in that role at The Children's Room. Nancy has taught graduate students at the Massachusetts School of Professional Psychology in the area of Health Psychology and has a private practice in Lexington, MA. Nancy has been a meditation practitioner for over 25 years and has a particular interest in teaching meditation to children along with mindful parenting. Nancy has interests in training in the areas of grief and loss, and the importance of leadership in many forms. She holds a BA from the University of Michigan, an MA from Lesley University, a JD from Boston College Law School and a PsyD from Massachusetts School of Professional Psychology.
Originally presented on November 13, 2018.
David M. Steinhorn, MD
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.
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.
About the Presenters:
David M. Steinhorn, MD
Professor of Pediatrics
Medical Director, PANDA Palliative Care Program
Children’s National Medical Center
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.
Originally presented on May 21, 2020
Kaitlyn O'Donnell, MSW, LCSW
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.
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
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.
Originally presented on August 26, 2021
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
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.
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.
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.
Originally presented in September 2022.
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
Originally presented on March 20, 2018
Dr. Melissa Hunt
Seizures are one of the most common symptoms seen in pediatric patients receiving hospice or palliative care. Managing seizures is often complex and can be overwhelming for healthcare providers. While collaboration with a pediatric neurologist is ideal for treating these patients, it isn’t always possible. Therefore, hospice and palliative care practitioners must develop some familiarity with the various treatment options. Through case examples, this session will review possible causes of seizures, discuss non-pharmacological and pharmacological treatment options based on seizure type, and evaluate potential therapy adjustments that may be necessary as patients approach end-of-life.
1. Identify potential causes of pediatric seizures and common seizure types
2. Discuss targeted pharmacological and non-pharmacological treatment options
3. Evaluate treatment options as patients approach end-of-life
About the Presenter:
Melissa Hunt, PharmD
Dr. Melissa Hunt graduated from the St. Louis College of Pharmacy with her Bachelor of Science and Doctorate of Pharmacy degrees and then completed an American Society of Health-Systems Pharmacists (ASHP) accredited pediatric pharmacy practice residency at Norton (Kosair) Children’s Hospital in Louisville, KY. Dr. Hunt worked as a clinical pharmacy specialist in a pediatric intensive care unit prior to joining Optum Hospice Pharmacy Services, where she now serves as the Pediatric Clinical Pharmacist. In her role with Optum, Dr. Hunt serves on pediatric interdisciplinary teams, provides clinical consults on pediatric patients, and presents educational programs for staff and clients. Dr. Hunt co-authored the Pediatric Palliative Care Consultant. She is a member of the National Hospice and Palliative Care Organization (NHPCO) and serves on the Children’s Project on Palliative/Hospice Services (ChiPPS) pediatric advisory council. In addition, she is a member of numerous pharmacy organizations including Pediatric Pharmacy Advocacy Group (PPAG).
Originally presented on January 22, 2019
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
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.
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.
Originally presented in March 2022.
Dr. Stefan J. Friedrichsdorf
We live in one world, which is divided by two opioid crises: Much of the world suffers not from abuse of opioids, but absence of them. Withholding evidence-based analgesia to children with serious illness is not only unethical, but causes immediate and long-term harm. Opioids are associated with many side effects and are potentially lethal - but, no other analgesics equal in potency and effect have been discovered or developed to reduce pain and suffering. The potential risks in the safety of analgesics is real, but very manageable and cannot justify denying administration of opioids to patients with severe tissue injury and/or serious illness.
1. Explore multi-modal analgesia for children with serious illness
2. Describe how multiple agents, interventions, rehabilitation, psychological and integrative therapies act synergistic for more effective pediatric pain control with fewer side effects than single analgesic or modality
3. Evaluate assumptions about opioid use in children during the current “opioid epidemic”
About the presenter:
Stefan J. Friedrichsdorf, MD, FAAP
Dr. Friedrichsdorf is the medical director of the Department of Pain Medicine, Palliative Care and Integrative Medicine at Children’s Minnesota – one of the largest and most comprehensive programs of its kind in the country. He is president-elect of the Special Interest Group on Pain in Childhood of the International Association for the Study of Pain (IASP). Dr. Friedrichsdorf sees patients in the hospital, in the interdisciplinary pain clinic or palliative care clinic, or in the community. He is associate editor of the Journal of Pain and Symptom Management, the 2010-2017 principal investigator of a National Institutes of Health (NIH) / National Cancer Institute (NCI) multisite study on the creation, implementation and evaluation of a Pediatric Palliative Care Curriculum (EPEC-Pediatrics: So far trained 687 clinicians from 54 countries) and in 2008 he founded and since then directs the annual Pediatric Pain Master Class, a unique week-long intensive course for interdisciplinary health professionals (trained 600 clinicians from 40 countries). Dr. Friedrichsdorf received his MD degree from the Medical University of Lübeck, Germany, completed his pediatric residency at the University of Witten/Herdecke, Germany (Children’s Hospital Datteln), and undertook his fellowship in Pediatric Pain Medicine & Palliative Care at the University of Sydney, Australia (Children's Hospital at Westmead). He is a Diplomate of the American Board of Pediatrics, double-boarded in Pediatrics (Germany, USA), and is trained in teaching pediatric hypnosis.
Originally presented on September 19, 2019
This talk will explore strategies, barriers, and goals for a broader implementation of palliative care for those living with SCD.
Anne Marsh | University of Wisconsin School of Medicine and Public Health
Sickle cell disease is an inherited blood disorder that can profoundly impact a patient’s quality of life. Sustainable, quality and accessible palliative care, integrated into the medical home of all patients with SCD, is a treatment model that could help minimize suffering and improve the patient experience. This talk will explore strategies, barriers, and goals for a broader implementation of palliative care for those living with SCD.
1. Recognize common medical complications of sickle cell disease.
2. Consider the role of palliative care in the care of patients with sickle cell disease
3. Appreciate how issues of race and class can shape perceptions and assumptions about patients with SCD.
Dr. Marsh is an Associate Professor of Pediatrics at the University of Wisconsin School of Medicine and Public Health where her clinical practice involves both benign hematology and pediatric palliative care.. She enjoys being part of a team that delivers quality, compassionate care to children who are faced with serious illness. She believes in taking a whole-person approach to wellness, believes that it is in connection that we thrive, and believes that both patients and caregivers benefit from fostering programs within healthcare systems that value, honor and reward compassion.
Originally presented in November 2022.
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
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 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.
Originally presented in January 2023.
Kristin James, LCPC, Executive Director, Greater Illinois Pediatric Palliative Care Coalition
Betsy Hawley, MA, Executive Director, Pediatric Palliative Care Coalition- Pennsylvania
The death of a child creates a wave of emotional trauma that reverberates through families, schools, faith communities, sports teams, and entire communities. Healthcare providers have a unique opportunity to build partnerships with funeral professionals in the emotional and complex responsibility of guiding a family through many difficult decisions that can shape the final moments and memories of a family and their community following the death of a child. This session will present findings from an innovative project that brought together hospital, hospice, funeral service, grief professionals and parents to examine best practices for the continuum of care following the death of a child.
1. Describe how to build partnerships with funeral professionals and grief specialists to facilitate the continuum of care
2. Identify legacy building and memorialization activities unique to children
3. Describe a communication plan and transition of care protocol that promotes healing for families and staff
About the Presenters:
Kristin James, LCPC
Kristin James currently coordinates the Greater Illinois Pediatric Palliative Care Coalition and has specialized in working with families coping with illness, trauma and death for over twenty years. Kristin has provided clinical consultation and extensive training, advocacy and education to medical teams, community agencies, and school systems throughout the Chicagoland area. She is an experienced clinician and has provided individual, family, and group counseling. 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. She has also participated in and published numerous research studies. Ms. James received her Masters in counseling from Loyola University.
Betsy Hawley, MA
Betsy Hawley is the Executive Director of the Pediatric Palliative Care Coalition, a Pennsylvania statewide coalition. She has 25 years of experience in nonprofit management in both healthcare and community development. Betsy speaks extensively across Pennsylvania and nationally on coalition building and pediatric palliative care. She is a member of the Pediatric Leadership Team of the National Hospice and Palliative Care Coalition and serves a member of the Patient Quality of Life Coalition.
Originally presented on November 17, 2020
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.
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 on August 20, 2020
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.
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.
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.
Originally presented on July 20, 2021
Dr. David Munson
Dr. Munson will describe the challenges that have resulted from our ever improving ability to diagnose problems in utero. Specifically, the webinar will explore how to apply principles of palliative care to effectively support a woman who learns her fetus has a life limiting condition. In addition, one model of a fetal palliative care program will be described as a way to practically implement these principles.
1. Identify the unique challenges facing a woman who learns her fetus has a life limiting condition.
2. Learn how to apply the principles of palliative care to the perinatal period.
3. Develop a communication tool box and practical interventions to effectively support a woman and her family when their fetus has been diagnosed with a life limiting condition.
About the presenter:
Dr. David Munson is the Medical Director of the Newborn/Infant Intensive Care Unit at The Children's Hospital of Philadelphia, and an Associate Professor of Pediatrics at the Perelman School of Medicine at the University of Pennsylvania. Dr. Munson is board certified in Neonatal and Perinatal Medicine, and also in Hospice and Palliative Medicine. He has combined these interests as the Medical Director of the Fetal Palliative Care Initiative in the Center for Fetal Diagnosis and Treatment at CHOP.
Orginally presented on April 17, 2018
Lori Butterworth, M.Ed.
Kelly Johnson, PhD, RN, NEA-BC
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.
Originally presented on February 18, 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.
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
Originally presented on May 23, 2019
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.
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.
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 teacher 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.
Originally presented in October 2023.
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.
Originally presented on January 23, 2018
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.
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.
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.
Originally presented on March 12, 2020
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.
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.
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.
Originally presented on June 22, 2021
In this webinar, the presenters will review the 2022 American Academy of Pediatrics report outlining best practices for Pediatric End-of-Life Care.
Dr. Linebarger and Dr. Boss will review the 2022 American Academy of Pediatrics report outlining best practices for Pediatric End-of-Life Care, focusing especially on the days and hours leading up to and following a child's death. Topics will include family supports, serious decision-making, pain and symptom management, and interdisciplinary teamwork.
Renee Boss, MD, MHS, is the Rembrandt Foundation Professor of Pediatric Palliative Care, Professor of Neonatology, and Core Faculty at the Johns Hopkins Berman Bioethics Institute at Johns Hopkins School of Medicine. Dr. Boss cares for seriously ill children, especially those with repeated and prolonged hospitalizations, and supports families who face challenging medical decisions. Her research targets parent-clinician communication. She is a member of the Executive Committee of the American Academy of Pediatrics Section on Hospice and Palliative Medicine.
Jenni Linebarger, MD, MPH, is the Division Director of Palliative Care at Children’s Mercy Kansas City and Associate Professor of Pediatrics at the University of Missouri – Kansas City. Dr. Linebarger directs the Palliative Care Team (PaCT) at Children’s Mercy, supporting a growing number of patients and families with serious illness. She serves as the site director for the pediatric Hospice and Palliative Medicine fellowship and recently completed 4-years as Chair for the American Academy of Pediatrics Section on Hospice and Palliative Medicine.
Originally presented in April 2023.
This webinar will highlight the perinatal palliative care birth plan and how it acts as an advance care planning tool for families facing complicated pregnancies and one which has both therapeutic and functional roles in communication and family empowerment.
Amy Brown Schlegel | Nationwide Children's Hospital and The Ohio State University College of Medicine
Families facing life-limiting or complex fetal diagnoses face the challenge of navigating goals of care for a baby that they have yet to meet. With the support of perinatal palliative care teams, parents can create a space for grief, advocate for value-driven care, and honor the life of the child during ongoing pregnancy and into the newborn period. The perinatal palliative care birth plan acts as an advance care planning tool for families facing complicated pregnancies and one which has both therapeutic and functional roles in communication and family empowerment.
Dr. Amy Schlegel is an Assistant Professor of Clinical Pediatrics at Nationwide Children’s Hospital and The Ohio State University College of Medicine. She obtained her medical degree at the University of Minnesota and completed her training in Pediatrics and Neonatal-Perinatal Medicine at the University of Pittsburgh Medical Center, where she also obtained a Master of Science degree in Medical Education. She practices Neonatal-Perinatal Medicine within the Division of Neonatology, providing patientcare to critically ill and complex neonates at Nationwide Children’s Hospital, The Ohio State University Medical Center, and The Fetal Center at Nationwide Children’s Hospital. Dr. Schlegel has an interest in taking care of medically complex newborns and supporting families in understanding and caring for their child following identification of critical or complex illness. She is the director of the Perinatal Palliative Care Program at Nationwide Children's Hospital and works closely with the Advanced Illness Management Team, Nationwide Children's Hospice and Home-based Palliative Care Program, and the regional Ohio Fetal Medicine Collaborative in this capacity. Dr. Schlegel is a clinician educator and teaching faculty within the pediatric residency, neonatal-perinatal fellowship and pediatric palliative care fellowship programs. Her academic and educational interests include communication skill development and longitudinal palliative care involvement for families facing complex fetal diagnoses.
Originally presented in May 2022.
Kim Bower, Debra Lotstein, Krishelle Aurele
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.
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
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
Originally presented on January 19, 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.
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.”
Originally presented on October 22, 2020
Dr. Sarah Friebert, MD
Director, Haslinger Family Pediatric Palliative Care Division, Akron Children's Hospital
Professor of Pediatrics, Northeast Ohio University College of Medicine
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.
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:
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.
Originally presented on February 16, 2021
Kerri Padgett, Janet Duncan, Julie Hauer, Alyssa Siegel, Barbara Swoyer
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.
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
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.
Originally presented on May 20, 2021
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.
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.
Originally presented on September 25th, 2018
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
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.
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.
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.
Originally presented in April 2022.
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
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.
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
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.
Originally presented in June 2022.
Marta Friedman, Christy Torkildson
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.
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
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.
Originally presented on March 16, 2021
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.
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.
Originally presented in November 2023.
This webinar will provide concrete tools for analysis and resolution of critical situations when parents request treatment that may not help (and may potentially harm) their child.
Unlike in adult medicine—where sometimes there may be an ethical concern that families are “giving up too soon” on a patient—in pediatrics the concern is almost always the opposite: parents requesting treatment that may not help (and may potentially harm) the child. In those situations, palliative care and hospice teams may experience moral distress and be unsure how to navigate complex ethical and interpersonal issues, and where to turn for help. This webinar will provide concrete tools for analysis and resolution of these critical situations.
1. Identify ethical obligations to a pediatric patient and the family
2. Explore the distinctions between moral distress, moral uncertainty, and moral angst
3. Formulate a practical approach to responding to parental requests for potentially non-beneficial treatment
Robert Macauley is Cambia Health Foundation Endowed Chair in Pediatric Palliative Care at Oregon Health and Science University. He received his B.A. from Wheaton College and M.D. from Yale. Following residency training in pediatrics at Johns Hopkins, he was a pediatric hospitalist in Connecticut and Director of Pediatrics at Kuluva Hospital in Uganda, before joining the faculty at the University of Vermont, where he directed both the Department of Clinical Ethics as well as the Pediatric Advanced Care Team. He joined the faculty at OHSU in 2017. He also holds a Master of Studies in Philosophical Theology from Oxford University, Masters of Divinity and of Sacred Theology from Yale Divinity School, and a Master of Fine Arts in Fiction from Vermont College of Fine Arts. He is also a Life Fellow of Clare Hall, University of Cambridge.
Dr. Macauley’s work focuses on pediatric palliative care, clinical ethics, and spirituality. He currently serves as chair of the American Board of Internal Medicine Hospice and Test-Writing Committee, and formerly served on the board of directors of the American Academy of Hospice and Palliative Medicine, as well as chair of the Committee on Bioethics of the American Academy of Pediatrics. He has published articles on topics ranging from civil disobedience in the practice of medicine to the role of surrogate decision-making following a suicide attempt, in journals such as the Hastings Center Report and the Journal of Clinical Ethics. His comprehensive textbook Ethics in Palliative Care: A Complete Guide was published by Oxford University Press in 2018.
Originally presented in June 2023.
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.
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
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.
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.
Originally presented in August 2023.