“This team is invaluable,” Dr. Wenger says. “They are able to pull everyone together to focus on reaching the best clinical outcome that can be achieved and also to ensure that the family remains intact while reducing the suffering and preserving the dignity of their child.” WHEN DR. ZELTZER ARRIVED AT UCLA, “Our understanding of pain perception in newborns was quite stunted in the past. It was assumed that they did not feel pain. Obviously, we’ve learned a great deal, and we have come a long way since those dark days.” 36 U MAGAZINE in 1988, she was dismayed to find there was no dedicated pediatric-pain service. She initiated such a service and began with postoperative pain management. She also established a pain-research program. In 1991, she started an outpatient clinic for children with chronic pain. “It soon became clear that in those arenas — outpatient and inpatient — we were seeing kids with very-complex medical conditions,” Dr. Zeltzer says. Pediatric pain management is a relatively new field of the 20th century, Dr. Zeltzer says. “Our understanding of pain perception in newborns was quite stunted in the past. It was assumed that they did not feel pain. Obviously, we’ve learned a great deal, and we have come a long way since those dark days. A lot of children also are living longer now, surviving the NICU but needing multiple surgeries and other treatments. The concept of pediatric palliative care is even more recent than pain care for children. Pain and palliative care for children is not necessarily just end-of-life care. It’s much-more involved.” Dr. Zeltzer’s innovations made UCLA one of only a handful of medical institutions in the United States focusing on pediatric pain and palliative care. In 2005, Dr. Zeltzer recruited Dr. Evan, then a postdoctoral fellow. Dr. Evan obtained a grant for $300,000 for three years to do a needs assessment, create a palliative-care interdisciplinary task force in the hospital and set up a program. The palliative- care program, under Dr. Evan’s leadership, began as a clinical service in 2008, and the pain and palliative-care research programs and the inpatient and outpatient pain and palliative- care clinical services were combined to become what is known today as the CPCC program. Word of what UCLA was doing soon spread to other medical enterprises. “Everyone was calling me asking, ‘What did you do at UCLA? How can we do that?’” Dr. Evan recalls. Soon, she was organizing a network of Southern California caregivers who wanted to create pediatric palliative-care programs for their health organizations. Since then, CPCC has expanded, primarily due to additional grants and support from UCLA Health. The program continues to grow, and in 2014, the UniHealth Foundation awarded Dr. Evan and the CPCC a grant to create the Telemedicine Educational Program for Pediatric Palliative Care, which enables the team to provide outreach education and consultation through a pilot program at the Mattel Children’s UCLA unit at UCLA Medical Center, Santa Monica. Today, policy changes implemented under the Affordable Care Act greatly aid palliative care. California was already at the forefront, having been one of the first states to recognize the need for comprehensive pediatric palliative care, according to the UCLA Center for Health Policy Research. The Nick Snow Children’s Hospice and Palliative Care Act of 2006, which was implemented in 2010 (and has been renewed until 2017), provides home-based palliative-care services in a rollout to 11 pilot areas, which currently include Los Angeles, Orange, San Diego and Fresno counties. The CPCC members continue to provide their expertise to push forward further reform. In addition to helping on the statewide level, the team’s work was integral during the development of UCLA Health’s Advance Care Planning and Services Initiative, which aims to establish programs to ensure the excellence of end-of-life care throughout the spectrum of the health system’s services. In pediatric care, advance care planning provides the child and parents with control by giving them the information needed to make decisions. “Advance care planning does not take away hope,” Dr. Zeltzer says. “Rather, it increases the quality of the child’s life in whatever time remains for the child. It prevents complicated grief and gives the parents and child permission to say ‘enough.’” Advance care planning includes the identification of proxy decision makers as well as the clarification of communication preferences, the goals of care and which interventions — such as resuscitation and artificial nutrition — to utilize to meet those goals. “CPCC is a mini version of our overall vision to integrate advance care planning at the earliest stages, when it focuses on values and goals,” Dr. Wenger says. “This provides a foundation on which to make treatment decisions and facilitate end-of-life care, if, in fact, it is needed.”