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,” notes Elana Evan, PhD, director of CPCC’s comfort-care research and program planning. “Advance care planning is a process, not an event.” From the moment the team is first consulted, it will review a patient’s entire medical history to know precisely what the patient has gone through and make recommendations to the child’s primary physician group on medication adjustments that can greatly ease a child’s symptoms and his or her pain. Earlier this year, the team was asked to consult on an infant who had been in the PICU for six months after a heart transplant. The young boy was constantly crying and agitated, and the nurses had a hard time approaching him. Nothing seemed to soothe him. When the team was called in, the physicians reviewed the baby’s medical history. A medication that was being administered at bedtime to help him sleep but which wasn’t doing much good was switched to the morning to help calm him. In addition, he was prescribed an anti-epileptic that is also administered to provide neuropathic relief. Gradually, the child calmed, and he has since been removed from breathing support and now is a playful child, although still medically precarious, the team says. Team members stress that a CPCC referral is not a hospice referral, although transitioning to hospice care is an option with which the team will assist, if needed. In some instances, consultation with the CPCC is automatic. Such automatic consultation recently was implemented by UCLA’s pediatric bone-marrow-transplant unit for all of its patients. Children who need a bone-marrow transplant are at significant risk and often have distressing symptoms. The CPCC team is able to assess the best medication approaches and also recommend strategies such as massage or other non-medical soothing therapies. Being brought in early for consultation on any case can make a significant difference, CPCC team members say. “It’s better when the family knows you for weeks or months,” Nalamliang says. The earlier the team can become involved, the better. Ideally, Nalamliang says, that connection is made at the time of diagnosis. “That allows our team the time to get to know the children and their families,” she says. “Conversations about goals of care, particularly the provision of life-sustaining treatments, evolve more naturally when we have that relationship.” Neil Wenger, MD ’84 (RES ’87, ’90, FEL ’89), director of the UCLA Health Ethics Center and chair of Ronald Reagan UCLA Medical Center’s ethics committee, agrees. “It really is critical because it creates a relationship early on with those who will be able to provide advice regarding symptom control,” Dr. Wenger says. “While they may not ultimately be needed for difficult end-of-life decisions, if they are, they are already well-known and integrated.” The situation is made more complicated when the patient is a child and not a decision maker, he adds. “By getting to know the patient and her family members, the members of the team are often able to integrate what the child would want and what the parents think is best for their child’s care.” To accomplish this, UCLA’s team works closely with all facets of the healthcare community, including child life, social workers, spiritual care, as well as all medical departments from anesthesiology to transplant services. In addition, the team has close relationships with outside hospice providers and rehabilitation centers and also works to ensure appropriate arrangements for any transitions needed, whether for short-term or long-term care. Sometimes the issues of care can become a tangle of conflicting wishes and desires. Not every member of a family may agree on what approach to take, or a child who is old enough to state his need may have different ideas than those of the parents. In some cases, it can be difficult for loved ones to perceive the child’s suffering, Dr. Wenger notes. In such situations, the team’s experience can be indispensable. The team also tries to help families to be at peace with their decisions and avoid regrets. Questions that are carefully addressed include such issues as intubation — the placement of a tube in the airway for a breathing machine — for example. One parent told Dr. Harrison that if she had known that her son, who was dying of cancer, would never be free from the tube and therefore never be able to talk again, she would not have agreed to intubate him. These are the difficult questions that the team tries to address beforehand. And whenever possible, when the child is a minor but has a sense of what he or she wants, the team tries to respect the child’s wishes by communicating with the parents. UCLA’s Children’s Pain and Comfort Care program helps families to process and survive the ordeal of a child’s death. WHY THEY GIVE The UCLA Children’s Pain & Comfort Care program was established with critical pilot funding from the UniHealth Foundation in 2008. In the following years, investments from both The Ralph M. Parsons Foundation and the UniHealth Foundation have helped the program expand its offerings and research to broaden the impact of its services. “Their support has given us the ongoing tools to both grow and develop our innovative model as well as sustain the program as it exists today. They believe in us and the services we provide to pediatric patients, families and healthcare providers and want to see us thrive.” – Elana Evan, PhD CPCC program director U MAGAZINE 35