While fewer than 1% of children in the U.S. experience serious illness, such patients account for one-third of all pediatric health care spending. To better provide for the needs of these children, the Children’s Hospital of Los Angeles (CHLA) is expanding telehealth services to affected families.
With advances in medical technology, more children are surviving with complex conditions that in previous years would quickly have proven fatal. While cure of acute illness remains the goal of medical care for otherwise healthy children, when it comes to children with serious illness a complete cure is rarely possible. Ideally, then, their care is focused on maximizing developmental and functional outcomes to support living at home with their families and within their communities.
Yet caring for a child with serious illness and significant medical needs at home places a large burden on family caregivers. Families often struggle with providing treatments, managing technology, and ensuring that care is coordinated across multiple service sectors. Pediatric palliative care (PPC) is an under-recognized resource that can provide an additional valuable layer of support for children with serious illness and their families. PPC achieves its goals of easing suffering and promoting well-being through aggressive symptom management, guidance for medical decision-making, and psychosocial support for the entire family. PPC clinicians consider the whole child within their family context, helping parents to identify what matters most to the well-being of their child and avoiding interventions that do not contribute to a child’s quality of life.
Given that a primary goal of PPC is to maximize a child’s quality of life while allowing them to spend as much time at home in their communities as possible, having services outside of the hospital is a high priority. While the CHLA PPC team offers outpatient visits, many families find coming to a clinic difficult, considering the many other appointments their children have and the distances many live from the hospital.
To address this need, Dr. Debra Lotstein, Director of the Division of Palliative Care at the hospital, is working with her team to develop and test a model of home-based pediatric palliative care (HBPC). They are supported in these efforts by funding from the Lucile Packard Foundation for Children’s Health and a $257,000 grant from AVDF.
“Throughout my combined residency in internal medicine and pediatrics,” said Dr. Lotstein, “I was drawn to caring for the sickest children with the most complex conditions, and was struck by the differences in medical care for children versus adults. Personalized care is often missing for critically ill children. I made it my personal mission to improve the holistic care that providers give to these children and to reduce the pain and suffering that children and families experience during times of extraordinary illness.”
CHLA plans to conduct evaluations to determine the feasibility of the telehealth model, the impact of the intervention on child and parent outcomes, and the patterns of health care utilization before and after receipt of telehealth services. Ultimately, CHLA hopes the program will combine HBPC and telehealth to effectively address barriers to care and ultimately improve outcomes for children and families in need of pediatric palliative care services.