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Online Education for Pediatric Palliative Care Providers

Since 2018, the Pediatric Palliative Care Webinar Series has been providing high quality educational programming for the entire interdisciplary team.  Past webinars are now available for purchase.  We encourage you to use these recorded webinars for individual or group staff training, IDT meetings or any time you need to bring an expert into your organization’s training room.

During this time of crisis, we are pleased to offer our library of webinar recordings to you free of charge.  Contact Betsy Hawley:  betsy@ppcc-pa.org to receive access to the webinar link.

Learn More About Our 2020 Webinar Series

Available Webinar Recordings

PPC SERIES – Don’t You Forget About Me: Caring for Siblings
Yelena Zatulovsky & Dana Richmond

“Who is coming for me today?”  When there is a chronically and/or terminally ill child, siblings become accustomed to the focus placed on the sick child by the adults around them.  They are often silent sufferers and disenfranchised grievers because, within the context of this scenario,  their place is poorly defined.  Even more so, most clinicians are not equipped – whether by time, resources, or education/experience – to support the siblings within the family unit.  With research demonstrating that 1 in 7 Americans will lose a parent or sibling before they turn 20, there has been growth in programs that provide developmentally-appropriate education surrounding illness, death and support through the journey.  It is time to place emphasis on the dialogue and training to support these beloved children.

This webinar will highlight the experiences of siblings, as told by the siblings themselves, and will examine the evidence-based interventions, strategies, and obstacles towards an effective framework of support that empowers and honors siblings.

Objectives:

1. Increase understanding of the experiences and perspectives of siblings.

2. Identify elements, approaches, and curriculum in supporting the needs of the sibling population.

3. Increase understanding of patterns of communication and collaboration to shift from intent to intentional.

About the presenters:

Yelena Zatulovsky, MA, LCAT, MT-BC, CCLS, HPMT Vice President, Patient Experience Seasons Healthcare Management, Inc.

Yelena Zatulovsky has over 15 years of bedside experience working with patients and families at the end-of-life.  In addition to hospice and palliative care, Yelena is Licensed as a Mental Health Practitioner, board-certified as a Child Life Specialist, and holds an advanced designation as a Hospice & Palliative Care Music Therapist.  Along with Yelena’s clinical work, Yelena currently serves on the ChiPPS (NHPCO’s Children’s Project on Palliative/Hospice Services) Advisory Council, served on the Children’s Advisory Board of HPCANYS, contributed a training module to the HIPPC (HPCANYS Initiative for Pediatric Palliative Care) curriculum, has multiple published articles, and has presented at multiple conferences nationwide.  In 2011, Yelena’s music therapy work, along with that of several colleagues, was featured in the New York Times and in 2014 Yelena was honored as one of Jewish Week’s 36 Under 36.

Dana Richmond, OT, Bereaved Sibling, Kessler Institute for Rehabilitation Founder of Elle Foundation

Dana Richmond is an Occupational Therapist and founding member of the Elle Foundation. Dana has worked in a variety of settings with many different populations to become a well rounded therapist. Currently working in inpatient rehab at Kessler Institute for Rehabilitation in West Orange NJ. The mission of the Elle Foundation is to create memories of joy for children battling a recurrence of cancer. As a sibling of a child who has passed away from cancer Dana is looking forward to sharing her personal experience to raise awareness and give siblings a voice.

Originally presented on Februry 21, 2019

PPC SERIES – Ensuring Psychosocial Wellness in School and the Community for the Seriously Ill Child
Dr. Kathy Davis

School is often described as the work of a child.  That work is often significantly interrupted by serious or life-limiting illness, hospitalizations and treatments.  Despite the inability to maintain an on-going school focus, many seriously ill children continue to want and need opportunities for continued growth and development.  Cognitive, emotional, psychological and socialdevelopment continues to be at the core of the child’s self-identity and requires cultivation and attention.   Research suggests poor outcomes for some adults who were children with serious or life-limiting health conditions.  When compared to peers or siblings, those discrepancies have been suggested in a wide-range of areas including high school graduation, post-secondary education, employment rates and ability to obtain health insurance, interactions with peers in friendship and romantic encounters, less frequent marriage, more frequent divorce, and becoming parents less often.  These outcomes are not surprising when considering the depth and breadth of learning that occurs in preschool through high school, and how that knowledge may be impacted with excessive time away from school and other activities.

This webinar will focus on specific ways to help children continue to succeed in school, activities and the community despite a serious illness.  Strategies for collaboration with school administrators, teachers, coaches, activity directors, clergy and others will be highlighted with a goal of maintaining the youngster’s well-being throughout their journey.  For some, this approach will enhance the transition into successful adulthood and, for others, the ability to be evaluated alongside their siblings and peers may add a quality to life that cannot be achieved otherwise.

OBJECTIVES:

1. Identify primary areas of development that may be impacted for children with serious or life-limiting health conditions enabling consideration when developing palliative care supports for school age children.

2. Apply knowledge regarding Individualized Education Programs (IEPs) and Section 504 of the Rehabilitation Act plans (504 plans) and employ strategies to request the appropriate school plan for each child.

3. Create effective collaborative partnerships with school and community persons who are interacting with and influencing the quality of life of pediatric palliative patients, resulting in those persons as part of the core pediatric palliative care team.

About the Presenter:

Kathy Davis, PhD, MSEd, is a Professor of Pediatrics at The University of Kansas Hospital System (TUKHS).  She has 45 years of experience working with young people with chronic and life-limiting illnesses in the areas of education, child life, palliative care and ethics.  Dr. Davis provides nonpharmacologic pain management, chronic illness management, education and instruction in coping strategies, palliative care and end-of-life support and ethics consultation to hospitalized and outpatient youngsters, their families, schools and communities.  She practices comprehensive pediatric palliative care that extends beyond the hospital or healthcare setting and reaches out to address the child’s various natural environments of school, worship, athletics, activities, friendships and family.  In addition, Dr. Davis supports women expecting babies with potentially life-limiting birth anomalies and their family members; counsels children whose parent or close loved one is nearing end-of-life at TUKHS; and provides bereavement follow-up after a death involving or affecting an infant or child.

Originally presented on June 20, 2019

PPC SERIES – Managing Pediatric Seizures at End of Life
Dr. Melissa Hunt

Seizures are one of the most common symptoms seen in pediatric patients receiving hospice or palliative care. Managing seizures is often complex and can be overwhelming for healthcare providers. While collaboration with a pediatric neurologist is ideal for treating these patients, it isn’t always possible. Therefore, hospice and palliative care practitioners must develop some familiarity with the various treatment options. Through case examples, this session will review possible causes of seizures, discuss non-pharmacological and pharmacological treatment options based on seizure type, and evaluate potential therapy adjustments that may be necessary as patients approach end-of-life.

Objectives:

1. Identify potential causes of pediatric seizures and common seizure types

2. Discuss targeted pharmacological and non-pharmacological treatment options

3. Evaluate treatment options as patients approach end-of-life

About the Presenter:

Melissa Hunt, PharmD 

Dr. Melissa Hunt graduated from the St. Louis College of Pharmacy with her Bachelor of Science and Doctorate of Pharmacy degrees and then completed an American Society of Health-Systems Pharmacists (ASHP) accredited pediatric pharmacy practice residency at Norton (Kosair) Children’s Hospital in Louisville, KY.   Dr. Hunt worked as a clinical pharmacy specialist in a pediatric intensive care unit prior to joining Optum Hospice Pharmacy Services, where she now serves as the Pediatric Clinical Pharmacist.  In her role with Optum, Dr. Hunt serves on pediatric interdisciplinary teams, provides clinical consults on pediatric patients, and presents educational programs for staff and clients.  Dr. Hunt co-authored the Pediatric Palliative Care Consultant.  She is a member of the National Hospice and Palliative Care Organization (NHPCO) and serves on the Children’s Project on Palliative/Hospice Services (ChiPPS) pediatric advisory council.  In addition, she is a member of numerous pharmacy organizations including Pediatric Pharmacy Advocacy Group (PPAG).

Originally presented on January 22, 2019

PPC SERIES Pain Management for Children with Serious Illness in the Context of the Opioid Epidemic
Dr. Stefan J. Friedrichsdorf

We live in one world, which is divided by two opioid crises: Much of the world suffers not from abuse of opioids, but absence of them. Withholding evidence-based analgesia to children with serious illness is not only unethical, but causes immediate and long-term harm. Opioids are associated with many side effects and are potentially lethal – but, no other analgesics equal in potency and effect have been discovered or developed to reduce pain and suffering. The potential risks in the safety of analgesics is real, but very manageable and cannot justify denying administration of opioids to patients with severe tissue injury and/or serious illness.

OBJECTIVES:

1. Explore multi-modal analgesia for children with serious illness

2. Describe how multiple agents, interventions, rehabilitation, psychological and integrative therapies act synergistic for more effective pediatric pain control with fewer side effects than single analgesic or modality

3. Evaluate assumptions about opioid use in children during the current “opioid epidemic”

About the presenter:

Stefan J. Friedrichsdorf, MD, FAAP 

Dr. Friedrichsdorf is the medical director of the Department of Pain Medicine, Palliative Care and Integrative Medicine at Children’s Minnesota – one of the largest and most comprehensive programs of its kind in the country. He is president-elect of the Special Interest Group on Pain in Childhood of the International Association for the Study of Pain (IASP). Dr. Friedrichsdorf sees patients in the hospital, in the interdisciplinary pain clinic or palliative care clinic, or in the community. He is associate editor of the Journal of Pain and Symptom Management, the 2010-2017 principal investigator of a National Institutes of Health (NIH) / National Cancer Institute (NCI) multisite study on the creation, implementation and evaluation of a Pediatric Palliative Care Curriculum (EPEC-Pediatrics: So far trained 687 clinicians from 54 countries) and in 2008 he founded and since then directs the annual Pediatric Pain Master Class, a unique week-long intensive course for interdisciplinary health professionals (trained 600 clinicians from 40 countries). Dr. Friedrichsdorf received his MD degree from the Medical University of Lübeck, Germany, completed his pediatric residency at the University of Witten/Herdecke, Germany (Children’s Hospital Datteln), and undertook his fellowship in Pediatric Pain Medicine & Palliative Care at the University of Sydney, Australia (Children’s Hospital at Westmead). He is a Diplomate of the American Board of Pediatrics, double-boarded in Pediatrics (Germany, USA), and is trained in teaching pediatric hypnosis.

Originally presented on September 19, 2019

PPC SERIES – Getting a Better Handle on Parent’s Bereavement
Blyth Lord, EdM & Nancy Frumer Styron, JD, PhD

In this webinar, we will share important information for providers regarding an understanding of anticipatory grief and the challenges of parenting a child who is dying, as well as parental bereavement following the death of a child. The webinar will include symptoms of grief, seeking support and normalizing the parents’ experience. This will better equip providers to work with patients during this challenging course of care.

Objectives:

1. Recognize the many aspects of grief

2. Understand the meaning of anticipatory grief

3. Identify some of the symptoms of anticipatory grief

4. Identify at least three issues parents face following the death of a child

5. Appreciate the importance of support for parents and siblings before and following the death of a child, and name three types of support available to families.

About the Presenters:

Blyth T. Lord, EdM

Blyth Lord is the founder and executive director of Courageous Parents Network, a nonprofit web and mobile platform that empowers parents caring for children with serious illness, including the promotion of pediatric palliative care. Blyth’s daughter, Cameron, died of Tay-Sachs disease in 2001. Blyth is also co-chair of the AAP’s Section on Hospice and Palliative Medicine’s Parent Advisory Group. Prior to founding Courageous Parents Network, Blyth worked for over 20 years as a television producer, including positions at WGBH in Boston and ABC News in Washington, DC. She produced the award-wining film, Cameron’s Arc, with the American Academy of Pediatrics to educate doctors in working with families from the time of diagnosis through to the end of life. Blyth is currently serving as the Board President for the patient disease group at National Tay-Sachs and Allied Disease. Blyth received her BA in History from Yale College and has a Master’s in Education from Harvard.

Nancy Frumer Styron, Jd, PsyD

Nancy Frumer Styron is a licensed psychologist and the clinical director of The Children’s Room, a bereavement center in Arlington, MA. Nancy comes with a background in pediatric psychology and a specialty in oncology. For over 20 years, she has seen patients and their families who have been affected by diagnosis, treatment, loss and death as she worked in outpatient services at The Dana-Barber Cancer Institute and at Boston Children’s Hospital. she also served as the training director for graduate students in the fields of social work and psychology at Dana-Farber and continues in that role at The Children’s Room. Nancy has taught graduate students at the Massachusetts School of Professional Psychology in the area of Health Psychology and has a private practice in Lexington, MA. Nancy has been a meditation practitioner for over 25 years and has a particular interest in teaching meditation to children along with mindful parenting. Nancy has interests in training in the areas of grief and loss, and the importance of leadership in many forms. She holds a BA from the University of Michigan, an MA from Lesley University, a JD from Boston College Law School and a PsyD from Massachusetts School of Professional Psychology.

Originally presented on November 13, 2018.

PPC SERIES – An Expense Worth Expressing: The Role of Expressive Arts in Pediatric Palliative Care
Dr. Debra Lotstein

In this presentation, Dr. Lotstein and Ms. Albers, will share ways that Expressive therapies can increase the quality of life of children with serious illness and their families. They will also describe how these therapies can impact care provided by the rest of the interdisciplinary team, and review ways that Palliative care providers might highlight the value of the expressive therapies to payors.

OBJECTIVES:

1. Understand who provides expressive therapies and what is provided in both hospital and home settings.

2. Explore the psychosocial benefits of expressive therapies to children with serious illness

3. Describe the ways expressive therapies can add value to the work of the interdisciplinary palliative care team.

About the presenters:

Debra Lotstein, MD, MPH Director, Division of Comfort and Palliative Care, Children’s Hospital Los Angeles; Associate Professor of Pediatrics, University of Southern California

Dr. Lotstein is dedicated to improving the quality of life for children with serious illness, their families, and the health professionals who care for them. She is the Director of the Division of Comfort and Palliative Care in the Department of Anesthesiology Critical Care Medicine at Children’s Hospital Los Angeles (CHLA) and an Associate Professor of Pediatrics at the Keck School of Medicine, University of Southern California.   As the director, Dr. Lotstein oversees the Division’s clinical, educational and research efforts. She is an attending physician for the team’s inpatient and outpatient clinical services. In 2017, she was named a Sojourns Scholar of the Cambia Health Foundation, a national initiative to identify and cultivate the next generation of palliative care leaders. As a Sojourns Scholar, she is working to improve access to home-based hospice and palliative care for children. Dr. Lotstein received her medical degree from Stanford University and completed her combined residency in internal medicine and pediatrics at Cedars Sinai Medical Center in Los Angeles. She is triple Board-certified in pediatrics, internal medicine, and hospice and palliative medicine.  In addition, she was a health services research fellow in the Robert Wood Johnson Clinical Scholar’s Program and received a master’s degree in public health from UCLA.

Nicole F. Albers, MA, LMFT, ATR-BC Team Lead – Expressive Arts and Therapies Team, Children’s Hospital Los Angeles

Nicole Albers is a licensed Marriage and Family Therapist and Board Certified Art Therapist who has worked at Children’s Hospital Los Angeles since 2011. She serves as the Team Lead for the Mark Taper –Johnny Mercer Artists Program. She graduated with a Master’s degree in Marriage and Family Therapy and Art Therapy from Loyola Marymount University in 2003. Prior to working at CHLA, she worked with children in residential treatment facilities, providing services to families in foster care, probation, and collaborating with public schools. Nicole has embraced her work with the pediatric population and has a passion for working with children: with Sickle Cell Disease, Cystic Fibrosis, and those awaiting organ transplants. She has introduced and presented on Art Therapy at local and statewide conferences, Grand Rounds, as well as speaking at universities. Nicole maintains her own personal art practice outside the hospital, and enjoys using mixed media, assemblage, and black and white photography.

Originally presented on October 17, 2019

PPC SERIES – Building Resilience in Children and Caregivers Facing Serious Pediatric Illness
Dr. Abby R. Rosenberg

Patients and families facing serious pediatric illnesses face a unique and challenging experience, including disruption of normal physical, mental and social development. The impacts can be long-lasting. Patients, siblings, and parents may be at risk for anxiety, depression and post-traumatic stress. In some cases they may be less likely to achieve milestones such as attending school, gaining independence or forming close friendships. In this session you will learn ways to help children, teens, and young adults – and their parents – become more resilient in the face of serious health problems. The goal is to equip patients and families with skills that improve their outcomes and help them lead happier, more fulfilling lives.

Objectives:

1. Describe resilience theory and how it does (or does not) relate to pediatric experiences

2. Describe a novel tool to promote resilience in pediatric patients and parents

3. Describe clinical questions to ask patients and families in order to help them feel more resilient.

About the Presenter:

Abby R. Rosenberg, MD, MS, MA  Assistant Professor of Pediatrics at the University of Washington, with joint appointments in the divisions of Bioethics & Palliative Care, and Hematology/Oncology.    

Dr. Rosenberg is an Assistant Professor of Pediatrics at the University of Washington, with joint appointments in the divisions of Bioethics & Palliative Care, and Hematology/Oncology.  She received her MD from Stanford University and did her pediatrics residency and fellowship training at Seattle Children’s and the University of Washington. She is currently the director of the Palliative Care and Resilience research program at Seattle Children’s Research Institute, and the director of Pediatrics in the University of Washington Cambia Palliative Care Center of Excellence.  Her scholarship focuses on the intersection of medical, psychosocial, and bioethical issues involved in the care of children, adolescents, and young adults with serious illness. Specifically, she and her team endeavor to create evidence-based palliative care interventions to promote patient and family resilience.  Current projects include NIH-funded randomized trials to test her novel resilience intervention in populations of teens with advanced cancer.

Originally presented on March 19, 2019

PPC SERIES – Care of Adolescents and Young Adults with Life-Threatening Illness
Dr. Jennifer Mack

This talk will center on experiences of adolescents and young adults with life-threatening illnesses, including their end-of-life care experiences and their needs for communication and engagement in decision-making.

OBJECTIVES:

1. To understand care experiences of adolescents and young adults (AYAs) at the end of life

2. To identify AYA needs for communication about life-threatening illness

3. To consider AYAs’ needs for involvement in decision-making, and clinician behaviors that support their involvement

About the presenter:

Jennifer Mack, MD, MPH Associate Chief, Population Sciences for Pediatric Hematology/Oncology Boston Children’s Hospital/Dana-Farber Cancer Institute

Dr. Mack received her medical degree from Harvard Medical School 1998. She subsequently completed her residency in Pediatrics and her fellowship in Pediatric Hematology Oncology at Children’s Hospital, Boston and the Dana-Farber Cancer Institute in Boston, MA. In 2005, Dr. Mack received a Masters in Public Health from the Harvard School of Public Health. She is an attending physician at Dana-Farber Cancer Institute and Boston Children’s Hospital, the co-Director of Population Sciences at Boston Children’s, and Associate Chief for Pediatric Oncology Population Sciences at Dana-Farber. She is also an Associate Professor of Pediatrics at Harvard Medical School. Her research interests are in parent-physician and patient-physician communication, health care equity and quality, and palliative care.

Originally presented on July 18, 2019.

PPC SERIES – Compatible with Life: Rethinking Care of Children with Trisomy 18
Nicole C. Hahnlen & Deana Deeter

Many patients diagnosed with Trisomy 18 are living longer than once predicted. What has changed in this population? This session will highlight current research on Trisomy 18 and explore opportunities for providing meaningful care in a patient population fraught with difficult decision-making and uncertain outcomes.

OBJECTIVES:

1. Describe clinical features and contemporary outcomes for children with Trisomy 18

2. Discuss factors influencing decision-making for both families and professionals

3. Identify challenges in providing medical care to children with Trisomy 18 that is congruent with the family’s identified goals

About the presenters:

Deana Deeter, CRNP, CHPPN, CPON, RN-BC Penn State Hershey Children’s Hospital Hummingbird Program Manager

Deana Deeter graduated from The Ohio State University with MS in Nursing in 2006 and Bachelors in Agriculture in 2003. Deana worked for 8 years as a nurse practitioner in pediatric palliative care, and prior to that worked for almost 5 years as a nurse practitioner in pediatric hematology/oncology. Deana completed the Pediatric ELNEC Train the Trainer program in 2009, and have taught portions of the course for the past 6 years. She holds certifications in pediatric hospice and palliative nursing (CHPPN), pediatric oncology nursing (CPON), and pain management nursing (RN-BC).

Nicole Hahnlen RN, CHPPN Penn State Children’s Hospital Hummingbird Program Nurse Coordinator

Nicole Hahnlen is the nurse coordinator of Hummingbird Program, the pediatric palliative care program at Penn State Children’s Hospital.  She is an executive board member of the Pediatric Palliative Care Coalition. Nicole holds a B.S. in nursing from the Pennsylvania State University and a B.A. in family studies from Messiah College.

Originally presented on November 21, 2019

PPC SERIES – Creative Conversations: Advance Care Planning in Pediatrics
Deborah A. Lafond & Kathy Perko

Caring for infants, children, adolescents and young adults with serious illnesses is challenging, especially when defining goals of care. Advance care planning (ACP) can be complex due to multiple factors, such as surrogate decision makers, developmental changes over time, uncertain trajectories of pediatric serious illness, and lack of knowledge regarding how to begin ACP conversations, how to talk with parents/guardians who may be young themselves with little experience with death, and often ACP discussions need to happen multiple times due to developmental and disease changes.  This webinar will discuss creative ways to engage patients and families in discussions to document goals of care and how to mitigate challenges in ACP.

OBJECTIVES:

1. Define the similarities and differences between advance care planning, advanced directives and Medical Orders for Life Sustaining Treatments (MOLST)/Physician Order for Life Sustaining Treatments (POLST)

2. Define terminology frequently used when discussing resuscitation status with patients and families

3. Discuss strategies for children, adolescents and young adults to discuss and document goals of care

4. Identify strategies for non-verbal and neurologically impaired children, adolescents and young adults to discuss and document goals of care

About the presenters:

Deborah A. Lafond, DNP, PPCNP-BC, CPON, CHPPN, FHPN Clinical Director PANDA Palliative Care Team Children’s National Health System Washington, DC

Dr. Lafond is a board-certified Hospice and Palliative Pediatric Nurse and is the Clinical Director of the PANDA Palliative Care Team at Children’s National Health System in Washington, DC.  She has been an active APHON member since 1990 and is the past chair of the APHON Evidence Based Practice and Research Committee.  She completed her DNP studies in 2012 at the University of Maryland with a research focus in early integration of palliative care in pediatric hematopoietic stem cell transplant. She was selected as a Sojourns Scholar in palliative care with the Cambia Health Foundation in 2015 to present. Dr. Lafond’s current projects include participating as a co-investigator with Dr. Pamela Hinds on an RO1 funded study titled “Being a Good Parent to My Seriously Ill Child” and investigating the experience of primary palliative care on families and clinicians using photovoice methodology.

Kathy Perko, MS, PPCNP-BC, CPON, CHPPN, CPLC, FHPN Program Director Bridges Pediatric Palliative Care OHSU Doernbecher Children’s Hospital Portland, Oregon

Kathy Perko is a pediatric nurse practitioner and the Program Director of Bridges Palliative Care at OHSU Doernbecher Children’s Hospital in Portland, OR.  Kathy is both an ELNEC and EPEC (Education in Palliative and End of Life Care-Pediatrics) national trainer.  She is certified in Pediatric Hospice and Palliative Care and Perinatal Loss Care (through NBCHPN).   In her role as Program Director of the Bridges Program, she provides pain and symptom management, as well as, psychosocial and spiritual support to children and their families, and facilitates conversations about palliative and end of life care with care providers both in the hospital and the community. Ms. Perko has authored chapters in the Pediatric Oncology Palliative and End-of-Life Care Resource manual, published by APHON.  And she is well known locally and nationally as a speaker in pediatric palliative care.

Originally presented on April 16, 2019

PPC SERIES – Concurrent Care: Pediatrics & Complex Care Plans
Shayna Stiles and Brandi O’Brien, NP

This webinar will serve to help participants gain an understanding and appreciate for the complexities of caring for children with life-limiting illness. We will explore the development of pediatric concurrent care in California, the regulatory requirements and how our organization meets the needs of this special population. Ultimately, we hope to impart an appreciation for pediatric hospice, concurrent care and the team(s) who care for this population.

Objectives:

1. Gain an understanding and differentiate between pediatric concurrent care, hospice and waiver programs

2. Identify examples of current pediatric hospice and concurrent care patients

3. Explore how pediatric hospice/concurrent care differs from adult hospice programs

About the presenters:

Shayna Stiles, Executive Director Providence TrinityCare

Shayna Stiles has been the Executive Director of Providence TrinityCare since 2017. Prior to this, she served as Director of Operations for Providence TrinityCare and as Manager for TrinityKids Care, a pediatric program of Providence TrinityCare. As a hands-on leader with an analytical, innovative, performance-driven with over 27 years of progressive experience in healthcare systems, Ms. Stiles is highly adept at identifying, recommending and implementing creative tools, policies and procedures to streamline medical operations and positively impact growth. Under her leadership, the program has seen the development and implementation of a state pediatric waiver program and grew the pediatric programs by 50%, and TrinityKids Care has evolved into the leading provider for pediatric hospice and palliative care in Los Angeles and Orange counties and the only hospice program in the area to be staffed by a dedicated pediatric interdisciplinary team. Excelling at collaborating with all levels of staff and support systems to motivate teams to accomplish strategic priorities and initiatives, she brings meaningful and measurable results in an ever changing health care environment.

Brandi O’Brien, NP Pediatric Nurse Practitioner Providence TrinityKids Care Hospice

Brandi O’Brien is a Pediatric Nurse Practitioner for Providence TrinityKids Care Hospice. She is board certified in pain management, oncology, hospice and palliative care, public health and as a Nurse Practitioner in both Acute Care Pediatrics and Adult/Gerontology. Ms. O’Brien is an active member on the research council of the National Board of American Society of Pain Management Nurses and a boad member of the local chapter. Her education includes a Master’s degree from the University of California, San Francisco and a Post master’s degree from California State University, Los Angeles. She has experience in teaching locally and nationally in pain management, palliative care and oncology. She has also developed standardized protocols including Opioid Induced Constipation, Sleep Hygiene implementation of a pain resource nurse steering committee. Her past nursing experience includes oncology, bone marrow transplant, pain management, hospice and palliative care and infusion care. This year, Ms. O’Brien will be working jointly with another pediatric palliative care provider on research regarding care coordination across the continuum. In her free time, she enjoys triathlons and traveling.

Originally presented on May 15, 2018

PPC SERIES – Decision Making in Pediatric Palliative Care
Dr. Scott Maurer

In this webinar, we will review the available data on decision making in pediatric palliative care. We will also discuss barriers to decision making, as well as a method to help providers think through difficult decisions with parents of children who have life-limiting illness.

About the presenter:

Scott Maurer, MD

Dr. Maurer provides palliative care consultative services to patients on all services in the hospital. He focuses on advanced care planning, decision making support, pain and symptom management, care coordination, end-of-life, and bereavement care for pediatric patients with life-limiting illness. Together with colleagues from the supportive care team, obstetrics, genetics, and neonatology, Dr. Maurer co-founded a perinatal palliative care program at the University of Pittsburgh. He also serves as the pediatric palliative care course director for the University of Pittsburgh palliative care fellowship program, and provides teaching to pediatric residents and medical students. Dr. Maurer has mentored numerous medical students, residents, and fellows in clinical and research palliative care projects. He is active in both institutional and cooperative research projects in pediatric palliative medicine, and has spoken at national and international conferences about how to better care for children requiring palliative medicine services. Dr. Maurer received his medical degree from Oregon Health & Science University in 2004, completed a pediatric residency at the University of Washington, and a fellowship in pediatric hematology/oncology with palliative care training at St. Jude Children’s Research Hospital. He is board certified in pediatrics, pediatric hematology/oncology, and hospice and palliative medicine.

Originally presented in February 20, 2018

PPC SERIES – Deep in the Weeds: Medical Marijuana & Pediatric Palliative Care
Dr. Elissa Miller

This webinar will discuss the history of medical marijuana and the current medical marijuana laws in the United States. We will also discuss current evidence and recommendations for medical marijuana use in pediatric palliative care.

About the presenter:

ELISSA MILLER, MD Chief, Division of Palliative Medicine Nemours/Alfred I. duPont Hospital for Children Wilmington, Delaware

Dr. Miller is the Chief of the Division of Palliative Medicine at the Nemours/Alfred I duPont Hospital for Children in Wilmington, Delaware. She attended medical school at the University of Rochester School of Medicine and Dentistry in Rochester, New York. Dr. Miller completed her pediatrics training at the Children’s Hospital of Philadelphia, Pennsylvania. After finishing her pediatrics residency, she went on to complete a fellowship in Pediatric Hospice and Palliative Medicine at the Children’s Hospital of Philadelphia. In 2011, she joined the faculty at Nemours and started the hospital’s palliative care program. Since joining Nemours, Dr. Miller has built a thriving interdisciplinary palliative care team and created curricula for pediatric residents and fellow palliative care education. She has presented nationally and regionally on a number of topics.

Originally presented on October 18, 2018

PPC SERIES – Kids Need Care Too! Developing Collaborations, Competencies and Confidence to Care for Children
Jody Chrastek & Diane Knust

Many communities across the country are facing a shortage of pediatric nurses and social workers needed to adequately address the needs of children in their communities who could benefit from hospice and palliative care services.  In response to this growing gap, hospice and home health agencies are working to train and prepare their adult staff to care for children.

This webinar will provide practical and evidence-based information and resources on how agencies and their staff can increase their competencies and confidence in providing pediatric palliative care and in turn help to ensure that children and families in their area have the support and care they need to live life as fully as possible and remain connected and safe at home in their communities.

About the presenters:

Joan “Jody” Chrastek, RN, DPN, CHPN, FPCN PACCT Coordinator Fairview Home Care and Hospice, Minnesota

Jody Chrastek is the PACCT (Pediatric Advanced Complex Care Team) Coordinator for Fairview Home Care and Hospice. The program works in close collaboration with University of Minnesota Masonic Children’s Hospital. She was born and brought up in India and trained as a nurse in Scotland. She has worked as a midwife and hospice nurse in the UK, India and the USA with adults and children. She has worked in hospice and palliative care for over 30 years, 20 of those in Pediatrics. Her Doctorate in Nursing Practice work focused on Pediatric palliative care. She has published and presented nationally and internationally on hospice and palliative care particularly in pediatrics.  She has contributed to text books such as the most recent Oxford Textbook of Palliative Care for Children and the Textbook of Interdisciplinary Pediatric Palliative Care.pediatric residents and medical students. Diane Knust, MSW, LISW Medical Social Worker Fairview Home Care and Hospice, Minnesota

Diane Knust, MSW, LISW has been a social worker for 30 years. Diane’s experience is 1/3 management/consulting, 1/3 adjunct professor, and 1/3 direct practice.  Her practice experience includes working homeless adults and children, developing subsidized housing programs, and employment programs with Catholic Charities.   Her career switched populations in 1995 when she became case management program manager for the Minnesota AIDS Project, supervising case management for adults and children living with HIV, developing pediatric case management program, and Midwest HIV pediatric monthly consultation program as well as other trainings. Diane spent 12 years teaching at the University of Minnesota, University of St. Catherine, Metropolitan State University, and University of Wisconsin in River Falls.  Courses developed and taught included: violence against women and children, domestically and internationally at the bachelor and graduate level, chemical dependency 101, International Social Work 101, Case Management with Special Populations and Senior Seminars for field work.  Diane is currently working as a medical social worker for Fairview Home Care and Hospice and has created social services component to our PACCT team.  Diane has been published in various HIV social service journals and violence against women journals

Originally presented on March 20, 2018

PPC SERIES – Perinatal Palliative Care
Dr. David Munson

Dr. Munson will describe the challenges that have resulted from our ever improving ability to diagnose problems in utero. Specifically, the webinar will explore how to apply principles of palliative care to effectively support a woman who learns her fetus has a life limiting condition. In addition, one model of a fetal palliative care program will be described as a way to practically implement these principles.

Objectives:

1. Identify the unique challenges facing a woman who learns her fetus has a life limiting condition.

2. Learn how to apply the principles of palliative care to the perinatal period.

3. Develop a communication tool box and practical interventions to effectively support a woman and her family when their fetus has been diagnosed with a life limiting condition.

About the presenter:

Dr. David Munson is the Medical Director of the Newborn/Infant Intensive Care Unit at The Children’s Hospital of Philadelphia, and an Associate Professor of Pediatrics at the Perelman School of Medicine at the University of Pennsylvania. Dr. Munson is board certified in Neonatal and Perinatal Medicine, and also in Hospice and Palliative Medicine.  He has combined these interests as the Medical Director of the Fetal Palliative Care Initiative in the Center for Fetal Diagnosis and Treatment at CHOP.

Orginally presented on April 17, 2018

PPC SERIES – Spiritual Needs of Children Facing Life-Threatening Illness
Dr. Elisha Waldman

In times of illness and in health, the role of spirituality can be a crucial coping mechanism, even in young children. For a child facing a life-threatening illness, the experience can raise profound spiritual questions of meaning and connection. Spirituality may influence how they experience their illness and play a crucial role in decision-making.

In this webinar, we will explore children’s spiritual development and needs, both in terms of theology and practical application for integrating spiritual support for children into your own medical practice.

About the presenter:

Dr. Elisha Waldman, MD

Dr. Waldman is associate chief, division of pediatric palliative care, at the Ann and Robert H. Lurie Children’s Hospital of Chicago. He was formerly medical director of pediatric palliative care at the Morgan Stanley Children’s Hospital at Columbia University Medical Center in New York. He received his BA from Yale University and his medical degree from the Sackler School of Medicine in Tel Aviv. He also trained at Mount Sinai Medical Center and Memorial Sloan Kettering Cancer Center in New York, and at Boston Children’s Hospital. His writing has appeared in Bellevue Literary Review, The Hill, The Washington Post, The New York Times, and Time. He lives in Chicago. Dr. Waldman’s book, This Narrow Space was released on January 30, 2018. We’re thrilled to have his expertise and experience for this exciting webinar.

Originally presented on January 23, 2018

PPC SERIES – Transitioning Adolescents into Adult Care
Parag Shah, MD

The webinar will give an introduction to health care transition for medically complex children to adult care. This will include formal and academic definitions and best practices, along with a review of the common tools used by pediatric institutions to help ensure patients receive a smooth transition.  We will cover some leading institutional resources providing support for transition to adult care, and finally cover some of the many social programs that exist and change when youth enter the adult world.

Objectives:

1. Express the formal definition of “transition to adult care”

2. Describe some facilitators of good transition practices

3. List some resources available to help families and providers plan for transition to adult care

About the presenter:

Parag Shah, MD, MPH Medical Director, Chronic Illness Transition Program Ann & Robert H. Lurie Children’s Hospital of Chicago

Dr. Shah is a general pediatric hospitalist working at the Ann & Robert H. Lurie Children’s Hospital of Chicago. He serves as the medical director of the Chronic Illness Transition Program, which runs a life skills program, a transition clinic and a workforce development program for young adults to help them ease their transition to adulthood and adult healthcare.  In addition, the team conducts consults to other medical divisions and collaborates with community organizations to enhance transition to adult care services.

Originally presented on September 25th, 2018

PPC SERIES Providing Spiritual Care with Pediatric Patients
Rev. Travis C. Overbeck

In this presentation we will discuss the role of the Chaplain in working with the interdisciplinary team as well as how we go about providing spiritual care to pediatric patients and other children in the family system.  Additionally, we will discuss faith development by age and stage, as well as practical and creative ways to engage pediatrics in conversations around their own spirituality and emotions.

OBJECTIVES:

1. To better understand the role and function of the chaplain with the IDG team as well as how to best utilize the chaplain on your team.

2. To acquire practical tools and skills necessary in providing spiritual care with pediatric patients.

3. To become more aware of how to as well as comfortable in providing spiritual care to children.

About the presenter:

Rev. Travis C. Overbeck, M.Div. Chaplain Seasons Hospice and Palliative Care

Rev. Travis Overbeck earned his Bachelors in Religious studies from California State University, Long Beach in 2007, and then went on to earn his Masters of Divinity from Princeton Theological Seminary in 2010.  Travis is an ordained minister in the Presbyterian Church U.S.A.  With over 15 years experience working with children, teens, and congregations in various ministerial settings, Travis currently serves as a hospice chaplain with Seasons Hospice and Palliative Care in Los Angeles.  Most recently, Travis was invited to join the ChiPPS (NHPCO’s Children’s Project on Palliative/Hospice Services) committee to present at NHPCO’s annual interdisciplinary conference

Originally presented on May 23, 2019

PPC SERIES Approach to Neurological Symptom Management in Children at the End of Life
Dr. Audrey Foster-Barber

Many children in hospice have neurologic symptoms at the end of life, whether their underlying disorder is primarily neurologic or as a late complication of a malignancy or other medical issue. We will review common causes of neurologic symptoms, including agitation or irritability, seizures, and tone abnormalities. We will discuss approaches to management of these symptoms, including nonpharmacologic and pharmacologic treatments that can be achieved in the home or hospice setting.

Objectives:

1. Identify risk factors for seizures at the end of life

2. Understand the natural course of a prolonged procedure at home, and approaches to comfort measures

3. Identify risk factors for neurological-irritability and approaches to treatment

4. Recognize the ways that hypertonia or movement abnormalities can cause discomfort, and understand pharmacologic and nonpharmacologic approaches

About the presenter:

Dr. Audrey Foster-Barber

Dr. Audrey Foster-Barber is Associate Professor of Neurology at UCSF. She is an expert in pediatric neurology who has a special interest in treating problems related to seizure, pain, movement disorder and neurogenetic disorders. She is outpatient director of the Pediatric Brain Center at the Benioff Children’s Hospital, San Francisco, Program Director for the Child Neurology Residency at UCSF, and Vice Chair of Education for the Department of Neurology. She is additionally board certified in Hospice and Palliative Medicine, and works with the pediatric hospice team at Hospice By the Bay. Foster-Barber graduated from Harvard College, where she earned an undergraduate degree in biology. At UCSF, she earned a medical degree and doctorate in biochemistry with an emphasis on neuroscience. She also completed a residency in pediatrics and child neurology at UCSF. She is the recipient of the UCSF Medical Center Exceptional Physician Award, several teaching awards, and the Child Neurology Society Gold Humanism Award for 2018.  In her treatment of children with neurological disorders, she strives to maximize their quality of life and developmental potential while supporting patients and families on their journey wherever it takes them.

Originally presented on June 21, 2018.