The number of children living with medical complexity in the United States increases each year due to advances in medicine. These children live with serious chronic conditions, significant functional limitations and the support of medical technology such as feeding tubes and tracheostomies. Their parents face caregiver burdens (often taking on medical tasks for which they are not trained), the necessity of advocating for their child’s essential healthcare needs and coordinating many services within and outside the hospital. Parents may experience psychological distress in the form of anxiety, depression, and chronic and traumatic stress.  While healthcare systems have not yet established consistent approaches to recognizing and treating parents’ needs, providers can address the unique challenges of this population of parents and advocate for system changes in this area. 

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.

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

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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.

This presentation will aim to identify sources of caregiver guilt and will explore the ways that caregiver guilt commonly manifests in pediatric palliative care. This 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.  

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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

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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. Outside of work, Lydia enjoys spending time with her family and taking long walks with her beautiful Golden Retriever/ Great Pyrenees rescue, Scarlett. 

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Pain is a frequent and distressing symptom in children receiving hospice and palliative care. Unfortunately, patients may have inadequate pain control with some opioids. Methadone, when dosed appropriately, may improve pain control 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.

1. Analyze the potential benefits of using methadone for pain management. 
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2. Evaluate risks associated with methadone use. 
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3. Demonstrate safe methods for implementing methadone therapy in children.

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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.

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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.

1. Appreciate the context leading to the AAP’s Clinical Report “Guidance for Pediatric End-of-Life Care”
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2. Review the recommendations within the Clinical Report
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3. Identify one recommendation focus for improvement within your own clinical practice or institution

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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.

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

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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 pediatric home healthcare agencies.   

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

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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.

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.

In his spare time Dr. Macauley enjoys sailing, writing fiction, and chasing after his four kids.

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

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1. Distinguish how to normalize disabilities 

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

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

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

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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.

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. 

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1. Identify age appropriate strategies and tools to support psychosocial coping
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2. Understand a developmental science framework behind the profession of child life
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3. Demonstrate ways to promote autonomy in pediatric patients
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4. Examine the ethics of including children in medical decision making

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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.

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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.

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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.

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

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

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

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.

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

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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.