“That extra support and compassion is amazing. I’m so grateful that they were there for Ashlee and for us,” Jeannie Malabanan says of UCLA’s Children’s Pain and Comfort Care program.
The news Jeannie Malabanan received in January 2014 was devastating. Following a year of difficult and aggressive chemotherapy for a rare bone tumor, the cancer at the base of her daughter Ashlee’s spine had metastasized to her brain. After a recurrence of her symptoms, Ashlee began to have seizures and was re-hospitalized at UCLA. The Children’s Pain and Comfort Care (CPCC) team was called in to assist. “They talked to us and supported us and provided Ashlee with as much quality care as was possible during this end-stage of her life,” Malabanan says. “Basically, they helped our family to process and survive this ordeal.”
Ashlee decided to forego further treatment and to stay in the hospital. “It was a hard choice for us to accept — as a parent, you want to keep your child alive for as long as you can,” Malabanan says. “But I know keeping Ashlee alive was not what she wanted. She didn’t want to just be breathing and not have any quality of life.”
In the two weeks that Ashlee was hospitalized, the CPCC team worked with her primary medical team and others to provide whatever assistance was possible. “They came by regularly to make sure her last days were as comfortable as possible, as she fell deeper into her terminal illness,” Malabanan says. “They let us know that we were not alone and that if we wanted them, they would be with us every step of the way.” The Chase Child Life Program of Mattel Children’s Hospital UCLA created a plaque with Ashlee’s palm print, and the CPCC team had her fingerprint replicated on more than a dozen pendants for family members to wear. When Ashlee lost consciousness, her wishes were known. Arrangements were made so that family members could stay with her, and until the end they never left Ashlee’s side. She was 21 years old when she died.
Since it was established in 2008, UCLA’s CPCC program, which is within Mattel Children’s Hospital UCLA, has worked to succor pediatric, adolescent and young-adult patients, like Ashlee, in their days of need and to help their families grapple with the unfathomable: the death of a child. While the broad-based CPCC team includes a psychologist, three physicians, nurse practitioner, social worker bereavement coordinator, chaplain, child-life specialist and administrative assistant, the front-line clinical-service team, including the physicians and nurse practitioner, sees some 200 patients a year in the hospital setting and another 325 patients through its outpatient clinic. Taking an interdisciplinary approach to address the core goals of care decisions, pain and symptom management and bereavement support, the team has a mission to enhance the comfort and quality of life for children with complex medical conditions and for their families. They work to relieve symptoms of disease or its treatment and to address psychological, social and spiritual needs.
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.”
|When Ashlee Malabanan’s cancer metastized, 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.
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 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.
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
“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, 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.”
Every case is a lesson for the team. “Everyone is different,” says the Rev. Irene Johnson, pediatric chaplain at Mattel Children’s Hospital UCLA. “This team doesn’t dismiss anything. The members process everything they experience and try to make things better for the next time.”
THE RELATIONSHIP BETWEEN CPCC AND A PATIENT’S FAMILY extends beyond the child’s death. The team members remain on-call to families and help connect them with local services to aid in bereavement. In addition, any parent or sibling of a UCLA pediatric patient who has died can attend the Comforting Hearts Family Bereavement Group. The free group, which is supported by a grant from The Ralph M. Parsons Foundation and other sources and which meets twice a month at a church in Westwood that donates its space, is guided by Gina Kornfeind, MSW, MS, CPCC’s support and bereavement coordinator. Kornfeind, along with volunteer social workers and community volunteers, leads two sessions — one geared for parents and one for siblings.
For parents, themes tend to address issues such as how to deal with work again, how to interact with friends, how to handle holidays, relatives or traveling. Everything that is the “new normal,” Kornfeind says. That includes navigating difficult questions such as: How many kids do I say I have now? What about the possibility of having another child in the future?
For siblings, the support group includes sharing, as well as arts and crafts and a musical component. “The idea is for them to build trust and a sense of support with the staff and with one another, to feel connected with other kids who are also grieving, to learn how to cope with this loss and also to have some normal fun and camaraderie again,” Kornfeind says.
Ashlee Malabanan’s mother attends the meetings regularly. “It gives us a place where we talk about the way we feel and understand that each of us has been there,” Jeannie Malabanan says. “We can talk to other people in our lives about our feelings and experiences, but they really don’t get it because they haven’t been there. So this makes a huge difference. It’s a safe place for us to talk about how much it hurts and how we deal with it every day.”
Two months before she died, Ashlee, unbeknownst to her family, created a Website to raise money for her care, thinking she would need additional funds. In a short time, she had raised $8,000; her mother has donated the funds to help expand the bereavement program. Says Malabanan: “No family should be alone while processing the end of life of their child.”
Marina Dundjerski is a freelance writer and the author of UCLA: The First Century (Third Millennium Publishing, 2012).