CHOP Open-access Medical Education: Palliative Care Course Presentations

This seminar focuses on pediatric palliative care and was delivered in Salzburg, Austria, from Aug. 27 – Sept. 2, 2017. The lectures are prepared by Children’s Hospital of Philadelphia staff in weeklong modules that are prepared in affiliation with the American Austrian Foundation Open Medical Institute and presented in Salzburg, Austria. The lectures of this seminar are presented in the order of the live event.

Introduction to Pediatric Palliative Care

At the end of this session, learners will be able to understand the difference between primary and specialty palliative care. In addition, learners will be able to describe two differences between palliative care for children and palliative care for adults.

Pediatric Assessment

At the end of this session, learners will be able to explain the importance of assessing the family and the team in order to accurately assess the patient, give examples of clinical situations in which the goals of the family shape the tools used for clinical assessment, and explain the benefits and burdens of validated assessment tools.

Presenter: Gina Santucci, RN, MSN, FNP, APRN-BC

Psychosocial Assessments in Pediatric Palliative Care

At the end of this session, learners will be able to identify key components of a psychosocial assessment, discuss the importance of a spiritual assessment, identify barriers to assessment, and recognize potential risk factors that may influence a patient or family’s coping and decision-making.

Non-opioids and Non-pharmacological Approaches to Pain Management

At the end of this session, learners will be able to explain the role of adjuvants in the WHO pain ladder, identify three non-opioid options for managing neuropathic pain, and describe three complementary therapies used in pain management.

Presenter: Gina Santucci, RN, MSN, FNP, APRN-BC

Pharmacologic Approaches to Pain: Opioids

At the end of this session, learners will be able to identify two steps of the WHO pain ladder and describe the key concepts of treating pain in a child, describe three common myths you may be asked to address in your practice regarding opioids, identify the most common opioids used in pediatrics and practice basic conversions between opioids, and understand how to choose an opioid for a patient based on route of administration and side effects.

Communication Session I: Giving Serious News

At the end of this session, learners will be able to demonstrate a framework for giving serious news, recognize the importance of responding to emotion when giving serious news, and explain the fundamental communication skills of Ask-Tell-Ask, NURSE and giving a clear headline.

Support of Parents and Anticipatory Grief

At the end of this session, learners will be able to define and identify the importance of patient- and family-centered care, identify ways to support parents in communicating to their children about death and dying, identify interventions and resources for parents, and describe how hope, guilt and grief play a role in communication with and support of parents.

Communication Session II: Mapping Values and Goals of Care

At the end of this session, learners will be able to describe shared decision-making as a method of decision-making support, develop the skills to learn about a patient’s and family’s values, recognize the potential challenges of discussions about including palliative care in treatment plan, and learn a cognitive map for transitioning goals of care to include palliative care.

Ethical Issues in Pediatric Palliative Care

At the end of this session, learners will be able to describe the standards for ethical decision-making for children including the best interest standard and the doctrine of double effect, determine who has the authority to make decisions for children at the end of life, and identify the ethical issues with withdrawal of life sustaining therapies at the end of life and how it is distinct from euthanasia.

Recent Research in Palliative Care

At the end of this session, learners will be able to describe research findings related to safety of PCAs and health-related quality of life of pediatric cancer patients, describe the differences in dying children who receive palliative care versus those who do not, identify variation in good parent beliefs when caring for seriously ill children, describe parental and patient experiences with serious conversations, and describe research on Trisomy 13 and 18 life expectancy and parental experiences.

Cardiac Case Study: Hypoplastic Left Heart Syndrome

At the end of this session, learners will be able to describe the three management strategies for infants born with hypoplastic left heart syndrome, explain how social media may influence a family’s experience of their child’s illness, and recommend a weight appropriate dose of morphine to treat dyspnea in an opiate naïve child.

Presenter: Gina Santucci, RN, MSN, FNP, APRN-BC

Illustrating the Art of Pain and Symptom Management

At the end of this session, learners will be able to practice converting oral morphine equivalents into other opioid medications, practice converting opioids into long-acting opioids and understand how to choose which long-acting opioid to use, and understand incomplete cross-tolerance seen across opioids.

Caring for the Dying Child

At the end of this session, learners will be able to understand the importance of an interdisciplinary approach to care at the end of life for a child, identify three symptoms seen at the end of life and three tools available to treat these symptoms, define palliative sedation and identify the medications used for palliative sedation, and delineate a stepwise plan for a compassionate removal of technological support.

Presenters: Shefali Parikh, MD, Gina Santucci, RN, MSN, FNP, APRN-BC

Pediatric Palliative Care Program Development

At the end of this session, learners will be able to understand elements of strategic planning and be able to complete a SWOT chart, list the components of the PPC business plan, develop a strategy to implement PPC with limited resources, select and implement a core set of relevant program metrics, and understand the natural cycles in the life of a PPC team and identify tools for increasing team resilience.

Presenters: Shefali Parikh, MD, Gina Santucci, RN, MSN, FNP, APRN-BC

Bereavement in Pediatric Palliative Care

At the end of this session, learners will be able to define bereavement, describe the tasks of mourning and grief, understand the importance of cultural sensitivity, describe debriefings and how they may be useful for staff, and explain support and interventions for bereaved families.

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