Easing the Burden for Families Living with Advanced Illness

More than 180 participants gathered at Children’s National in November for the annual Joshua Stouck Memorial Pediatric Palliative Care Symposium, which highlighted the importance of relieving the pain and suffering of children living with serious illness.

Sarah Friebert, MD, FAAP, FAAHPM of Akron Children’s Hospital, an international pediatric palliative care pioneer, kicked off the event by discussing the current state of pediatric palliative care and the need for this type of care globally so that children with serious illness can have greater quality of life.

To palliate means to "ease the burden of,” and the PANDA Palliative Care Team at Children's National works to do this each day by preventing, reducing, and soothing symptoms for children in the advanced stages of illness. The multidisciplinary team of physicians, advanced-practice nurses, social workers, case managers, and therapists provides individualized care and counseling for children and families confronted with serious illnesses. Through tailored palliative care, which includes but is not exclusive to end-of-life care, the PANDA Palliative Care team works with patients and family members to ease medical, emotional, psychological, social, and spiritual burdens. They listen carefully to determine and deliver the right care at the right time, provided concurrently with disease-directed therapies.

The symposium included an interactive theater presentation by Theater Delta of Chapel Hill, N.C., on how clinicians can effectively communicate with families in the face of advancing illness, as well as a panel of local community hospice experts who discussed the value of compassionate end-of-life care so that children experience the least amount of suffering possible. Stacy Remke, MSW, LICSW, A CHP-SW, closed the symposium with practical advice on how healthcare providers can care for themselves when faced with the daily challenges of working with patients and families with serious illness.

Jerry Stouck and Mindy Buren made the annual symposium possible by creating the Joshua Stouck Critical Care Endowment to educate care providers about effective communication with parents. It was formed in memory of the Stouck's late son, Joshua, who passed away when he was 4 years old. In addition to funding the memorial fund, Jerry Stouck co-founded the DC Lawyers’ Golf Tournament, which has raised more than $1 million for critical care medicine at Children's National.

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