When Ashlee Malabanan’s cancer metastasized, UCLA’s Children’s Pain and Comfort Care team “provided Ashlee with as much quality care as was possible during this end-stage of her life,” says her mother, Jeannie Malabanan. Photo: Courtesy of Jeannie Malabanan “It is important to think about palliative care at all stages of illness — planning and re-planning goals of care with a focus on communication, quality of life and good symptom control. Advance care planning is a process, not an event.” 34 U MAGAZINE At such difficult moments, “parents have many questions but sometimes are afraid to ask them,” says pediatric critical-care specialist Julianne Harrison, DO (FEL ’10), one of CPCC’s attending physicians. “One of the most-common questions they have is: ‘Will I be able to hold my child?’ Another is: ‘Can I take him outside?’” The CPCC team not only answers the questions and assists with such requests, when possible, but moreover, they also help provide comfort and understanding. Says Malabanan: “That extra support and compassion is amazing. I’m so grateful that they were there for Ashlee and for us.” MORE THAN 10-MILLION CHILDREN in the United States live with chronic disease. Of these, 1.5 million have life-threatening illnesses. According to 2007 U.S. child-mortality data, approximately 53,000 children die each year from their illness — 25 percent before they reach 1-month old and another 25 percent between 1 month and 12 months of age. While many hospitals have adult palliative-care and pain-management units, few have pediatric- palliative and pain-management teams to care for these young patients and the members of their families. Although the number of centers with such programs has been growing, many medical professionals believe it is not happening fast enough. Among the increasingly loud voices calling for change is Stefan J. Friedrichsdorf, MD, medical director for one of the largest pediatric palliative- care programs in the country, at Children’s Hospitals and Clinics of Minnesota, and a pioneer in the field. “In the year 2014, pain management for children in the United States remains abysmal,” he says. “And the younger the child is, the less likely it is that the child gets appropriate pain medication.” A significant issue, experts agree, is that society- at-large does not want to dwell on the thought of dying children, and support for pediatric palliative- care programs nationwide is lacking. Rather, the focus is on finding cures and saving children. Accepting a terminal diagnosis also is a challenge for parents and physicians, who are dedicated to the singular goal of helping and protecting the child. Even just the word palliative has difficult-to- overcome connotations when it is linked to a child. People perceive that requesting palliative care is akin to giving up, but that is not the case, UCLA and national authorities assert; it means that everyone involved — the patient, the family and the medical team — is hoping for the best outcome but preparing for the worst. “We can’t predict the future,” Dr. Friedrichsdorf says. “Some children do live for years in the end-stages of life. Palliative care means that we provide them with the best pain and symptom management that we can for whatever length of time remains for them.” Palliative care for children indeed is highly specialized, and it varies a great deal from that of adults. Although characterized as “natural” for statistical purposes, a child’s death is, after all, never truly “natural.” “Children are expected to reach adulthood,” says Lonnie Zeltzer, MD, director of the CPCC. This can stir up a brew of emotional and psychological needs and special considerations. Unlike an adult’s, the needs of a child will vary greatly depending on his or her developmental stage. And the trajectory of illness to death is often longer and less predictable for a child than for an adult. Which children should receive palliative care? Palliative care should be incorporated into the care of any child with a potentially life-limiting or medically complex condition, including children who are born with conditions they are not expected to survive or to live through to adulthood, notes Michaela Nalamliang, NP, CPCC clinical coordinator. But palliative care should not be limited to those with an expected limited life expectancy, she emphasizes. Palliative care should also be considered for those born with complex conditions with unknown or long-life expectancies, those who suffer trauma and those who acquire complex illnesses. “It is important to think about