Practicing medicine from the heart
Pediatric palliative care team gifts heartbeat bears to grieving families
June 21, 2024 — The heart is the wellspring of life, with each beat pumping blood throughout the body — to the lungs, used for laughter; to the hands, used for grasping; and to the legs, used for walking.
In the halls of UF Health Shands Children’s Hospital, a simple gesture to preserve this signifier of life has become a beacon of healing for families navigating the unfathomable loss of a child.
The College of Medicine’s pediatric palliative care team, housed within the department of medicine, has gifted stuffed bears with a heartbeat recording to families who have lost a child. To date, the initiative, which began as a pilot by the children’s hospital’s bereavement committee and has since evolved into a partnership among the palliative care, bereavement, social work, and Child Life teams, has helped 90 families through the grieving process.
“It’s incredibly meaningful to see families receive this kind of tangible legacy,” said Celine Cattier, M.D., the pediatric palliative care medical director of UF Health’s Palliative Care Program, who is often in the room with the patient and family when the heartbeat is being recorded. “Sitting in that space, when families experience a wide range of emotions and share stories, can be overwhelming, but seeing how much they appreciate that we care and honor their child’s life is one of the most rewarding parts of participating in bereavement.”
Bereavement support is one component of palliative care, which is appropriate at any stage of a serious illness and can be used in conjunction with curative treatments. The pediatric palliative care team works with families whose children have complex, chronic medical issues that are life-threatening or potentially life-limiting. Such families must navigate the complicated hospital system frequently, and Cattier’s team offers a holistic approach to their care, which requires collaboration with the social work, psychology, spiritual care, Child Life, Streetlight and expressive therapy teams for assistance with coping.
“A lot of families, especially those here for months or years, identify fragmented communication as one of their bigger challenges,” Cattier said. “We try to be a point of continuity and help the families and medical team navigate those challenges.”
Sometimes, Cattier’s unit advises medical teams on treatment plans and advocates on behalf of the family’s goals and values. Other times, they may devise a way to help a child who hasn’t been outside in several months see the sunshine or coordinate a birthday celebration.
“Little things or gestures can have a big impact on quality of life,” Cattier said.
When a hospitalized patient is nearing the end of their life, the bereavement committee is alerted about a potential candidate for the heartbeat bear initiative. Nursing staff, Child Life specialists, and social workers help to record a 20-second clip of the patient’s heartbeat to be placed inside the bear. They also implement other memory-making projects, such as creating hand or foot molds and prints, involving the patient’s parents and siblings when possible.
“For some families, creating a heartbeat bear provides a little comfort during a profoundly difficult time,” said Alyson Dew, a clinical social worker who spends her days in the Pediatric Intensive Care Unit and Neonatal Intensive Care Unit.
The team hopes to secure additional funding to expand the program, with the goal of fulfilling every family’s request for a heartbeat bear to help their bereavement journey and honor their child’s memory.
“Especially for families who have to be in hospital for a long time, it can feel overly medicalized, and I think it’s helpful to humanize the dying process,” Cattier said. “I hope the families know we don’t forget these kids. I hope they know their child has touched everyone around them, from the doctors to the nurses and the entire medical team. We remember these kids and talk about them long after they’re gone.”
Donations to Children’s Miracle Network can be used to support the Heartbeat Bear program along with other legacy, memory, and diversionary efforts for patients and their families.