Reframing Hope: Pediatric Palliative Care

• Address common myths and obstacles preventing integration of Pediatric Palliative Care (PPC) services
• Evaluate how PPC involvement improves clinical outcomes of children with serious illness
• Explore hope while facing serious illness

• Learn how a Transpersonal Medicine approach can lead families to reframe their hope.
• Explore how the guided journey process, similar to guided meditation, can bring families to a mindful state, enabling them to experience renewed hope in seemingly hopeless situations.
• Experience a guided journey, as an approach to Transpersonal Medicine.

• List developmental tasks of adolescence and young adulthood
• Describe effects of a life-limiting illness on adolescents and young adults
• List common complex chronic conditions and common cancers in adolescence
• Discuss palliative care interventions for adolescents and young adults 
• Demonstrate palliative communication skills to use with adolescents and young adults

• Discuss how we can enhance our presence and our practice by re-locating and reconnecting with our original voice, allowing for a deeper understanding of self in context, and by embracing a new intentionality as to the language we use when meeting with patients and/or their loved ones.
• Understand how, when using our original voice in the clinical setting, patients and/or their loved then have the opportunity and latitude to reach in to, and speak from, their own original voices.
• Explore how drawing from one's original voice - be that providers, patients, or their loved ones - might elucidate and enhance knowing and meaning when engaging in essential conversations, such as those that can lead to completion of a POLST.

• Define your own personal culture/identity
• Identify and apply the tenets of cultural humility in your work in medicine and living in society
• Learn how to positively influence the healthy dynamics of engaging with and respecting “other” despite the differences
• Examine disparities in healthcare and identify ways providers can dismantle these inequities through conscious consideration and engagement of cultural humility

• Demonstrate approaches to goals of care conversations in pediatric oncology
• Describe the range of hopes that children, adolescents, young adults, and families experience
• Share patient stories exemplifying how embedded palliative care within oncology can support patient and family hope.

• Understand the variable prognosis of many disorders which result in severe neurologic impairment (cerebral palsy, epileptic encephalopathy), and the unpredictable nature of medical complications which impact expected survival.
• Recognize several newly treatable neurologic conditions (Spinal muscular atrophy, Adrenoleukodystrophy) and the impact these potential treatments have on the approach to care for children and families impacted by these disorders.
• Discuss an approach to other degenerative neurologic disorders which often result in survival into adulthood (Muscular dystrophy, Sanfilippo syndrome), and the role a palliative care approach can have on quality of life.

• Describe attitude change towards palliative care during pandemic
• Recognize leadership perspective on palliative care to the health care system
• How institutional palliative care research adds to utilization of palliative care services

The experience of a grieving sibling can all too often be overlooked by care teams and medical professionals focused on patient and parent care. Join our panel of bereaved young adult siblings as they share their stories and reflections related to the loss and legacy of their brothers and sisters.

They will discuss:

• How the loss of a sibling shapes development and identity;
• Witnessing and experiencing grief among family members;
• Support benefits and drawbacks from medical care teams

• Describe the role of the nurse in providing quality pediatric palliative care
• Describe the ELNEC Pediatric Project in providing palliative care education

• Provide a context and shared experiences from three chaplains caring for families after the death of their child
• Explore how bereavement and follow up spiritual care supports families

• Describe the epidemiology and outcomes of children with brain tumors
• Define the unique problems children with brain tumors face at the end of their lives
• Understand the approaches and resources necessary to take care of children with brain tumors at the end of their lives

• Empower parents and caregivers to use music with their child
• Learn creative and obtainable strategies to incorporate music in time spent with patients or loved ones receiving palliative care

• Healthcare professionals as first-responders.
• What parents need when they learn their baby has died or important decisions need to be made - being given time to process the news, avoiding information overload, preparing parents if time allows, offering choices, asking about cultural and religious needs and preferences.
• Importance of language: what to say and not to say.
• Recommendations from various parents.
• Self-care for medical providers.

• Describe attitude change towards palliative care during pandemic
• Recognize leadership perspective on palliative care to the health care system
• How institutional palliative care research adds to utilization of palliative care services

• Reframe terminology for communicating poor prognosis with patient families.
• Utilize evidence-based communication skills to discuss goals of care at end of life.
• Identify preventive strategies for communication that can reduce conflicts around medically inappropriate treatment requests at the end of life.

The loss of a child is a life-long journey that, in some cases, begins long before the child’s death and continues throughout the parent’s life. Join our panel of bereaved parents to learn how they integrate their deeply personal experiences of loss into journeys of healing and lessons for providers.

 Topics that they will address include:

• Difficult conversations with medical professionals;
• Strengths and limitations of pediatric palliative care; and
• The experience of anticipatory grief and bereavement

 Our panelists include bereaved parents Kristina Espinoza, Lakeshia Marshall, Monica Wesolowska, along with panel moderator Amie Lands who in her message to attendees says, “we want providers to know that they’re holding us in our most broken moments. They have the power to help us or hurt us further.” Join the conversation from these parents who share their stories of loss, and the hope that sustain them.

• Identify commonly encountered spiritual dilemmas in pediatric palliative care
• Recognize the impact of faith on medical decisions made my positive religious copers
• Formulate a spiritually-informed approach to transforming spiritual hope in pediatric palliative care

• Define palliative care per GMCH
• Define hope in palliative care
• The effects of play in palliative care
• Manifestation of hope through play

• Healthcare professionals as first-responders.
• What parents need when they learn their baby has died or important decisions need to be made - being given time to process the news, avoiding information overload, preparing parents if time allows, offering choices, asking about cultural and religious needs and preferences.
• Importance of language: what to say and not to say.
• Recommendations from various parents.
• Self-care for medical providers

• Understand the nature of hope and the perils of false hope
• Learn to frame hope so that it serves you well
• How to hold hope and letting go at the same time

• To better understand the different non-conventional therapies used in the treatment of chronic pulmonary disorders in children.
• To discuss strategies for “integrating” non-conventional therapies to better manage both chronic and acute respiratory symptoms.
• To discuss the evidence of non-conventional therapies in the treatment of chronic respiratory conditions in children and young adults.

• Describe bereaved parents’ perspectives about hope and “realism” in the context of advancing illness
• Discuss a framework for integrating “hope” conversations through complicated ethical decision-making
• Learn skills to better partner with patients and families who carry coexisting hope (that may sound unrealistic) and prognostic awareness in the context of a child’s progressive illness