From left to right: Bridget Basile, R.N., Jackie Kim, Elana Evan, Ph.D.

Children’s Comfort Care Program Improves Quality of Life for Children

More than half of the children admitted to Mattel Children’s Hospital UCLA face lifethreatening illnesses, including critical heart conditions, cancer, neurodegenerative disorders and rare genetic diseases. Quality of life is often severely diminished for these children and their families. Using a multidisciplinary team of palliative care experts, the Children’s Comfort Care Program (CCCP) at UCLA addresses these quality-of-life issues through education, outreach, research and clinical care.

“Palliative care has become a new way to look at quality improvement in healthcare,” explains Elana Evan, Ph.D., director of the UCLA CCCP. “It’s a long road for children and families affected by complex, life-threatening illnesses, and it’s not only about curative treatments. When we can identify strategies to reduce or prevent pain, symptoms and stress, it affects how these children perceive and respond to treatment.”

Established in late 2005 through a grant from the Unihealth Foundation, CCCP began as a research and education program. In the fall of 2008, a clinical component was added, integrating pain management and behavioral and psychosocial strategies to develop a qualityof- life plan designed to help children with serious illnesses reach their short- and longterm goals, given their unique situations. These strategies may include lifestyle management tools or creating ways to help children pursue activities such as playing sports, seeing friends or going to their senior prom. The familycentered program incorporates the values and experiences of each patient and family in decisions regarding care and emphasizes continuity of care throughout the course of the illness. In addition, the program includes bereavement care and became the first program in the country to establish a bereaved-parent advisory board.

For UCLA employees and staff ranging from physicians, nurses, social workers and care partners to administrators, secretaries and maintenance workers, an important hallmark of the program is education and support. “Clinical and non-clinical staff are on the front lines interacting with high-acuity patients who sometimes have poor prognoses,” says Dr. Evan. “We are their resource for coping with the range of emotions and issues related to caring for seriously ill children. Our philosophy is that when we take care of ourselves, it helps us take better care of our patients.”

The CCCP is small but growing. In addition to Dr. Evan, other team members include Lonnie Zeltzer, MD, medical director; Bridget Basile, RN, MA, clinical coordinator; Nancy Freeman-Cruz, RN, staff nurse; Sara Devaney, CCLS, MA, child life specialist consultant; Aiko Johnson, MA, M.Div., BCC, pediatric chaplain consultant; and Jackie Kim, research assistant.