Lighting the way for children with medical complexity
The PPCC Firefly Chat is a series of interactive virtual discussions - FREE of charge - that explore issues facing the pediatric palliative care community in PA and beyond.
March 13th Firefly Chat:
Interdisciplinary Spiritual Care with Patients and Families
Click HERE to view the recording.
Click HERE for highlights from the March FF Chat.
To help "light the way" for families, caregivers and care providers, consider a donation to PPCC to help fund the Firefly Chat Series. Donate HERE.
How do you live fully at end of life? Offering whole-person and family-centered care is the aim of the Sunflower Pediatric Team. Join a Board Certified Chaplain, Registered Nurse, Licensed Social Worker and Parents of a Sunflower child to dialogue about the importance of addressing spirituality at end of life. The objectives of the Firefly Chat will focus on:
1) the importance of offering spiritual support to all individuals even those who identify as “not religious”
2) the importance of all health providers to offer general spiritual support
3) examples of spiritual support
Presenters:
Rev. Rose Baer, BSN, MDiv, BCC, is a board-certified chaplain who offers community based spiritual support to individuals with serious illness and their families. She works on the Sunflower Hospice and Palliative Team and the CHOICES Palliative and Supportive Care at Home Team at Hospice & Community Care. Rose is an ordained minister who describes her faith as expansive and open and her spirituality as dynamic and grounded in love and the beauty of the world. She is committed and passionate about meeting the spiritual needs of patients and families.
Ann Pilarte, MSW, LSW, APHSW-C, is a licensed, master level social worker at Hospice and Community Care in Lancaster, PA. Ann holds a certification as a Palliative and Hospice Social Worker by the Social Work Hospice & Palliative Care Network and a multidisciplinary certificate in Pediatric Palliative Care from the Shiley Haynes Institute. She has attended the ELNEC Pediatric Summit. At Hospice and Community Care Ann serves as a co-chair for the LGBTQ+ Resource Team. Ann received her Masters of Social Work from West Virginia University and her Bachelor of Arts in Sociology from Susquehanna University.
Parent Presenters: Scott and Sherry Fahs, parents of Derrick
Scott and Sherry Fahs are parents of Derrick. Derrick was a patient on the Sunflower Pediatric Team for a little over 7 months prior to his passing. Scott and Sherry loved, listened and created a home of belonging for Derrick throughout his 26 years of life. Derrick, a lover of water and walks in the woods by their cabin, participated fully in the delight of life. His smile said it all. Scott and Sherry continue to be strengthened and delighted by Derrick’s presence through glimpses of dragonflies, pieces of screens (which Derrick found comfort through touching), and memories. Scott, currently receiving treatment for cancer, feels Derrick’s participation with him as he and Sherry are on a new journey toward healing.
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.
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.
