Lighting the way for children with medical complexity
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The PPCC Firefly Chat is a series of interactive virtual discussions with parents and professionals - FREE of charge - that explore issues facing children with medical complexity and their families and the pediatric palliative and hospice care community.
2025 PPCC Firefly Chat Dates - All sessions are 12-1pm ET.
FF Chats are FREE but registration is required.
* February 12 - Topic: POLST Forms
* May 14
* August 13
* November 12
Physician Orders for Life-Sustaining Treatment (POLST) forms are orders for life-sustaining treatment outside of the hospital setting. While these orders are more common and can feel straightforward for adults, there is often additional complexity for children, teens and young adults and their parents/legal guardians. Join us as our panelists highlight the importance and challenges of gathering information, working with the interdisciplinary team (IDT) and completing POLST documentation for pediatric patients and children with medical complexity.
During this Firefly Chat, we will be joined by a parent and provider who will discuss 3 key areas in the POLST process:
1. How the POLST tool can be used over the care continuum
2. Why ongoing communication is both important and difficult
3. What emotions and concerns emerge with this type of decision making
Presenters:
Parent Presenter: Beth Ramella, Mom and Legal Guardian to Travis
Beth Ramella is the biological mom of Mia (23), bonus mom of Travis (17), a young man with medical complexity, and proud wife of Todd Reeves. Beth and her family have always been deeply connected to the education of children with visual impairments. She was a longtime employee, and Travis a student, at the Western Pennsylvania School for Blind Children. Currently, Beth serves as the Superintendent and CVI Specialist at Overbrook School for the Blind, where she leverages her expertise to support children with brain-based visual impairment to foster inclusive, innovative educational environments designed specifically for these children. She continues to run a CVI clinic that is free for families who travel across the US and from other countries.
Provider Presenter: Shalini Maitra, MD
Physician at The Children's Hospital of Philadelphia
Shalini Maitra is currently a physician with the Pediatric Advance Care Team at Children's Hospital of Philadelphia (CHOP). She went to medical school at Jefferson Medical College, and then completed her residency at Dupont Children’s Hospital. She then went on to work as a hospitalist on the bone marrow transplant and oncology units at CHOP, where she realized her interest in communication surrounding serious illness and how to best support families during difficult situations, resulting in her pursuing a fellowship in Hospice and Palliative Medicine at CHOP. She has been delighted to be able to stay on with the palliative care team at CHOP as an attending physician.
Moderator:
Dana Dombrowski, MSW, LSW
Social Worker and Psychosocial Program Coordinator at The Children’s Hospital of Philadelphia
Dana Dombrowski graduated from the University of Connecticut in 2003 with a BS in Family Development and a minor in Sociology. She went on to attend graduate school at the University of Pennsylvania where she received her Master’s degree in Social Work in 2005. Upon completion of this program, she obtained her LSW and was hired by The Children’s Hospital of Philadelphia as a Pediatric Oncology Social Worker. She worked in that position specializing in patients with a terminal cancer diagnosis, grief and loss for over 8 years. In 2013, Dana joined CHOP’s palliative care team (PACT Team) as a social worker and the psychosocial program coordinator.
Physician Orders for Life-Sustaining Treatment (POLST) forms are orders for life-sustaining treatment outside of the hospital setting. While these orders are more common and can feel straightforward for adults, there is often additional complexity for children, teens and young adults and their parents/legal guardians. In this FF Chat, our panelists highlight the importance and challenges of gathering information, working with the interdisciplinary team (IDT) and completing POLST documentation.
When a child with medical complexity becomes an adult, there are new and complicated systems to navigate. In this Firefly Chat, a parent will highlight what her family faced during the guardianship application process and transition out of pediatric based services. There will also be a discussion about decisions, sources of support/resources and challenges that families may face.
The concept of Care Mapping is discussed and how this can help families/caregivers embrace a wider circle of services and create positive connections and interactions. In addition, our presenter shares her experiences with her own children and foster children and her work in the foster care system.
Join our panelists as they highlight how perinatal palliative care can be the beginning layer of support for families as they navigate their child’s medical journey. Our panel will share their experiences in perinatal palliative care and offer insight and practical suggestions for creating an atmosphere of open communication and honest discussions to develop individualized care plans.
A board certified chaplain, licensed social worker and bereaved parents dialogue about the importance of addressing spirituality at end of life. This Firefly Chat focuses on the importance of offering spiritual support to all individuals and those who identify as “not religious".
Learn more about the Collaborative Filmmaking Project and how 5 families shared their grief and bereavement experiences in their own unique ways.
Each of 5 participants created a short film that celebrated the legacy of their child and explored a range of key topics related to their grief journey and experience navigating palliative care for their child. The films illustrate various elements of the grief journey, which are unique for each family.
Making arrangements at the end of a child's life is something that is approached differently by every family and caregiver. Our host and panelists share their experience talking with different families, illuminating the incredibly diverse ways in which people plan, prepare for, and memorialize when a child's death occurs.
Joy isn’t the first word that most people associate with pediatric palliative care, but it is a powerful part of the experience for many families. We hear from parents and caregivers as they explain how they identified, captured, and experienced joy as a part of their child’s medical journey.
Caring for a child with medical complexities can be stressful, overwhelming and challenging. While traditional medicines are often the first-line of treatment, the use of alternative therapies and supports are becoming more readily available. Listen to a Recreation Therapist and a Massage Therapist who help care for children with medical complexities both in the hospital and home setting.
Palliative care and end-of-life care for children focuses on the whole family including siblings. Parents and medical professionals often worry that siblings “get lost” during the illness. Hear a palliative care provider and a bereaved sibling explore how the death of his brother affected him and his family.
Children with medical complexities frequently see multiple specialists and are sometimes traveling to more than one hospital or medical center for care. Families are tasked not only with sharing their stories over and over, but also trying to remember critical health data points, medication names and doses in addition to important contacts in their child’s care. This chat highlights strategies for organizing medical data.
For many who are grieving the loss of a child, celebrating the holidays can be even more challenging and stressful. As with the grief journey, what one person finds comforting may not work for all. In this Firefly Chat we talk with a family about their experience honoring their child who passed, navigating their grief and managing the “expectations” over the seasons.
Presentation Materials
Presentation Materials
Mindfulness/Gratitude Practices
What is it really like caring for a medically complex child in your home? Learn directly from the parents living the experience how to best support and help families in this very unique situation.
PPCC is not a health care provider and does not give medical advice or treatment. PPCC does not endorse or recommend any listed facilities, service providers, or support groups herein. PPCC offers the list and information as a resource only. PPCC does not pre-evaluate, or consider the Medicare/Medicaid status of the providers.
The Pediatric Palliative Care Coalition is a registered 501(c) (3) not-for-profit organization. Donations are tax-deductible according to the IRS’s rules and regulations. The official registration and financial information for PPCC may be obtained from the Pennsylvania Department of State by calling toll-free within Pennsylvania 1-800-732-0999.
