‍WEBINAR DESCRIPTION:

In this webinar, Dr. Nelson will integrate ideas from psychology and business to describe the use of narrative as a clinical decision-making tool. Anchored by a case about a family deciding about scoliosis surgery for their daughter with neurologic medical complexity, she will explore decision narratives from two vantage points: before the decision is made and after the outcome is known. Illustrating these pre- and post-decision narratives with published data, she will explore how both types of narrative can be useful tools in the decision-making process. Many of these strategies are used intuitively by expert clinicians—this session provides a framework so that they can be wielded more intentionally and explained to learners.

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Registration for the live event is closed. Please Click HERE to purchase a recording of the Webinar.

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LEARNING OBJECTIVES:

1. Recognize how complexity influences decision making

2. Describe how decision narratives differ if they describe a future decision or a past decision

3. Utilize pre- and post-decision narratives as decision-making tools to identify bias, to reflect with families about uncertainty, and to help families more intentionally craft their own narrative for future reflection

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

Severe Neurological Impairment (SNI) is a complex condition, and until now has come without a roadmap for caregivers. NeuroJourney.org is an educational resource for families and clinicians navigating ever-evolving SNI, integrating prognostic content on the medical and psychosocial aspects of the disease trajectory with compassionate, family-centered commentary. The primary authors and producers, a palliative care physician and a representative of Courageous Parents Network, will present this powerful tool and discuss ways that patient families and clinical learners can benefit from its use.

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Registration for the live event is closed. Please Click HERE to purchase a recording of the Webinar.

1. Identify the phases of life for a patient with severe neurologic impairment and parental needs at all phases.
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2. Describe how palliative, or "palliative-aware," care can be creatively integrated into anticipatory guidance for clinicians and patient families.
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3. Utilize NeuroJourney.org in interactions with families and in clinical education.

Julie Hauer is faculty at Boston Children’s Hospital. Her clinical expertise is focused on the rare population of children with severe neurological impairment (SNI) who have multiple co-morbidities that impact health and quality of life, resulting in complex medical care and decision-making. Her interests include symptom treatment, including pain, feeding intolerance, and dyspnea during respiratory exacerbations. Her work has included innovative symptom treatment protocols targeting the mechanisms of pain generation specific to this population. She has written a book on the medical and palliative care needs of such individuals, with a second book to be published by Oxford University Press later this year.

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

‍Decisions around the end-of-life in pediatrics are always difficult. They can become even more challenging when there is disagreement about whether palliative care or hospice is appropriate. This webinar will discuss a case that elicited significant distress and disagreement over the appropriateness of palliative care and hospice. The presentation will discuss how to respond to cases where different clinicians view palliative care as inappropriate and discuss a basic ethical framework to analyze facts and values. The webinar will conclude with strategies to engage with team members where significant distress and disagreement exist.

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Registration for the live event is closed. Click HERE to purchase a recording of the webinar.

1. Discuss a case that elicited significant distress and disagreement over appropriateness of palliative care and hospice
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2. Discuss ethical framework for how to sort through facts and values in major decision making 
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3. Discuss an approach to dealing with distress and disagreement

Dr. Ian D. Wolfe has a clinical background in burn, trauma and pediatric critical care nursing. He earned his PhD in Nursing and his MA in Bioethics with a minor in Public Health and focus on health equity, from the University of Minnesota. Dr. Wolfe completed a postdoctoral fellowship and certificate in pediatric bioethics at Children’s Mercy Kansas City. Dr. Wolfe has authored a broad range of journal articles that support his main interest which is how the intersection of social, political, and cultural systems issues affect clinical ethics and care at the bedside.  Dr. Wolfe is chair of the ethics advisory board for the ANA Center for Ethics and Human Rights. He is currently Director of Ethics at Children's Minnesota and affiliate faculty at University of Minnesota Center for Bioethics.

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Presentation date: March 21, 2024

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

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

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

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

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

The number of children needing chronic respiratory support is increasing as once-fatal conditions become treatable. Many families struggle with the decision about whether chronic home ventilation is right for their child or family. In this webinar, we will review data from families who have faced this decision and consider how their experiences should impact our counseling and support for other families.

1. Define pediatric chronic critical illness (PCCI)

2. Highlight common PCCI challenges, including decisions about chronic medical technology, 

3. Review strategies to help families and medical teams discuss the option of chronic home ventilation

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.

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

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

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

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

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

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

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

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

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

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

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

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

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

‍The expectation of a new baby is typically a joyful time in a family’s life, but many parents are left reeling when they receive the heartbreaking news that the baby they are expecting has a life-limiting diagnosis. Creating a palliative care birth plan provides expectant parents an opportunity to think through their goals of care and to communicate their wishes to the medical team. Chaplain Kat will walk participants through the important elements of a birth plan and share one family’s story.

1. Outline the usefulness - to both patients and practitioners - of birth planning for life-limiting diagnoses 
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2. Highlight the important elements of a palliative care birth plan
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3. Employ a family’s story to elucidate how a birth plan can enhance patient/ family-centered care

Rev. Kat Kowalski, MDiv, BCC is the Perinatal Palliative Care and Chaplaincy Coordinator at The Johns Hopkins Hospital in Baltimore, MD. She provides spiritual and emotional guidance to expectant parents who have received a worrisome prenatal diagnosis, helping them prepare as best they can for uncertainty. Over the last decade, Chaplain Kat has ministered to countless families experiencing the serious illness and/or death of a baby.

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

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

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

Samuel Kaplan, MD, MPH is a current Pediatric Hospice and Palliative Medicine Fellow at Children's Mercy Kansas City and The University of Kansas Medical Center-Kansas City. Dr. Kaplan received his MD and MPH from Tulane University, and completed his residency at The Children's Hospital of Pittsburgh, where he was on the Pediatric Advocacy, Leadership, and Service (PALS) track.