The Pediatric Supportive and Palliative Care Program was developed in 2007 with the goal that children with chronic or serious illnesses, and their families, need additional care to ensure their needs for comfort and quality of life are met. This program concept was supported strongly by the hospital and was especially endorsed by leaders from the intensive care units (pediatric and neonatal) and hematology/oncology, who came together to develop the philosophy and practice for pediatric supportive/palliative care.

The Supportive and Palliative Care Program is unique—and different from Hospice—in that the program begins at diagnosis and is a part of the care plan, whether the child is at home or in the hospital, throughout cure or bereavement. “The supportive/palliative care program assures comfort and quality of life regardless of the underlying condition. It is the care provided in partnership with the health care team that is aggressively treating the condition from the moment of diagnosis of a chronic or serious illness,” says Joetta Wallace, MSN, RN, FNPC, program manager. “The program focuses on the physical, psychosocial and spiritual needs of the child and family struggling with a condition that may cost the child his/her life.”

The Hematology/Oncology unit piloted the supportive/palliative care program for the first year of its existence and had 26 referrals within the first month. Several philanthropic and Memorial Medical Center Foundation grants were obtained to educate care team members on supportive/palliative care. To date, more than 300 Miller Children’s care team members including nurses, physicians, social workers, Child Life Therapists, respiratory therapists, physical and occupational therapists, case managers and interpreters have benefited from attending programs focusing on the interdisciplinary care necessary for these special patients. Supportive/palliative care has been woven into the fabric of all our pediatric units.

Today, five multi-disciplinary focus groups meet monthly from each of the major care centers – PICU, NICU, general pediatrics, hematology/oncology –and the program has been expanded to the perinatal program for mothers expecting children with a lethal anomaly.

The month of May signifies the third anniversary of the launch of the Pediatric Supportive and Palliative Care Program and staggering numbers prove the importance of the program on the improvement of children’s comfort and quality of life—especially for those children anticipating a much shortened life-span. Eighty-four bereaved families have benefited from the program. In 2007 at the beginning stages of this program, support and services were not available for a child to die at home. By 2009, just two years later, most children are able to have their last moments at home, free of pain, surrounded by those who love them, supported by community services.

“I strongly believe that if at all possible, just like the first heartbeat, a child’s last heart beat should be right next to its mother’s,” says Wallace