There continues to be significant data highlighting the workforce shortage in pediatric palliative care and as the number of children with chronic, complex and life-limiting illness continues to increase, the training needs of physicians and healthcare teams has increased as well. Many adult providers, family practitioners and smaller hospice teams have identified training as the leading barrier to their ability to provide end-of-life care to children. Larger systems with new or established pediatric palliative care (PPC) teams often struggle to find time for education or funding to support professional development.
A team from Pennsylvania’s Pediatric Palliative Care Coalition (PPCC), Greater Illinois Pediatric Palliative Care Coalition (GIPPCC), Children’s Hospice & Palliative Care Coalition of California (CHPCC), and the CSU Shiley Haynes Institute for Palliative Care have collaborated to offer the PPC Webinar Series to raise the visibility of pediatric palliative care and to build clinicians’ competencies and confidence in providing care to children.
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.
This talk is an interdisciplinary approach to cultural humility in clinical care.
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.
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.
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.
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.
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
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 Wisconsin
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
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.
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...
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.
More information to come
Colleen Cicchetti | Ann & Robert H. Lurie Children’s Hospital
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
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.
PPC Webinar Series Payment Options
Individual purchase without CE:
$30 individual webinar
Purchase 4 or more webinars and receive a 25% discount
Entire series: $247.50 (reflects 25% discount)
Individual purchase with CE:
$40 individual webinar
Purchase 4 or more webinars and receive a 25% discount
Entire series: $330 (reflects 25% discount)
5-10 people: $1237.50 for entire series (11 webinars)
· 5 CE registrations included. Any additional registrants above 5 people who need CE credit can register for $30/pp
11-50 people: $2475 for entire series (11 webinars)
· 11 CE registrations included. Any additional registrants above 11 people who need CE credit can register for $30/pp
All groups: Purchase 4 or more webinars reflects a 25% discount
Our system is designed so that every month a different group of 10 can attend. The group coordinator will receive a form each month to sign up individuals from your organization. For more information, please contact firstname.lastname@example.org
CE credit for nurses and social workers is available through the CSU Shiley Haynes Institute for Palliative Care.
For other disciplines, attendance certificates are provided to self report CE credit.
“CEs are provided through Cal State University San Marcos (CSUSM) Extended Learning. This provider is approved by the California Board of Registered Nursing, Provider #CEP 11422, and by the Board of Behavioral Sciences, Provider #PCE-3405 through the CSUSM WASC Accreditation (Western Association of Schools and Colleges).”
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The pricing sheet and registration form allows the group coordinator to assign individual designations regarding CE credit.
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For the 2022 PPC Webinar series we are unable to provide CME. We are, however, pleased to offer CE credit for nurses and social workers, as well as attendance certificates for other disciplines to self report, through our accreditation partner the CSU Shiley Institute for Palliative Care.
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