Published onChildren's View
Children’s Hospital of Philadelphia is world renowned for discovering breakthrough cures, solving the unsolvable and saving the lives of children with devastating diseases.
But sometimes, even the most cutting-edge clinical care isn’t enough to save a child. And when that happens, a very different kind of care is needed.
CHOP’s Justin Michael Ingerman Center for Palliative Care supports families and children with complex and life-limiting conditions. The Center’s Pediatric Advanced Care Team (PACT) provides many services to meet the needs of patients and caregivers, including help through difficult decisions; assistance with symptom management; and emotional, social, spiritual and bereavement support.
“When a family is experiencing the death of their child or sibling, they’re dealing with many challenging emotions,” says Child Life specialist Rachel Johnson, MEd, CCLS, a member of the PACT psychosocial team. “My role allows me to meet them where they are and help them process this major life event.”
Johnson provides grief support and helps PACT patients and their siblings learn bereavement processing skills. Her work often includes creating memory or legacy projects with families, such as fingerprint jewelry or a painting of a special memory. “We include the whole family in these projects,” she says. “In a moment when everything is very stressful, these projects allow them to come together.”
Additionally, PACT families within a 60-mile radius of CHOP’s Philadelphia Campus receive child life and art therapy services in their homes. These services continue long after the patient’s death.
Answering a critical need
PACT Child Life holds a special place in the heart of CHOP supporter Margaret Anne Nolen, who has witnessed the loss of a child through the eyes of a close friend. Nolen first learned about PACT in 2007 after hearing its former director speak to a CHOP volunteer committee she served on. Nolen was deeply moved by the psychological support services that PACT provided families facing the loss of a child — so moved that she soon committed funding to support the Child Life specialist role Johnson now holds.
Now — over 15 years later — Nolen has expanded her support by establishing the Margaret Anne Harron Bruder Bereavement Coordinator Fund. This new fund expands CHOP’s bereavement services by supporting a full-time bereavement coordinator role, held by Kelly Goldin, BS, CCLS, CTRS, the former PACT Child Life specialist.
Named after Nolen’s late mother, in honor of her lifelong dedication to philanthropy and community service, the Margaret Anne Harron Bruder Bereavement Coordinator Fund meets a critical need at CHOP, extending bereavement services beyond inpatient and PACT families and into the surrounding community.
“There has long been a resource gap within the hospital for families who are left to navigate their grief after the loss of a child,” says Goldin. In her new position, Goldin is working to fill that void.
Excellence in bereavement care
As part of CHOP’s expanding bereavement services, the hospital reaches out to every CHOP family upon the death of a child. Families receive a condolence card, as well as information about available grief support resources.
In addition, Goldin and Johnson often receive calls from community families who want to know how to help their child understand grief. To meet this need, the pair developed Bereavement Resources Inspiration Therapeutic Education (BRITE) Boxes, which provide age-appropriate grief processing activities and information for caregivers about how to discuss grief with children.
“The Bereavement Coordinator Fund ensures we’re able to be equitable in our bereavement services for families,” says Goldin. “As a highly rated institution, we are now considering bereavement part of our mission to provide excellence in care.”
Additional bereavement services include a monthly virtual parent support group, opportunities for gatherings and virtual discussion groups on common topics for bereaved caregivers, as well as an annual candlelight memorial service. Goldin hopes future funding will enable further staff training and sibling grief support groups.
“We’re so grateful for the opportunity to meet the needs of families,” says Johnson. “This gift allows us to think about how we can continue to expand what we offer to CHOP patients and families.”
The death of a child or sibling is a unique kind of grief, requiring specific care. To learn how you can get involved and help CHOP further engage bereaved families, contact Matthew Sware at 267-426-7030 or firstname.lastname@example.org.