Navigating the nuanced differences of adult versus pediatric palliative care delivery can be a challenging feat for seriously ill youths as they age and transition between these two realms.
Pediatric patients often experience burdensome care transitions as they reach adulthood, according to Dr. Daniel Karlin, associate clinical professor University of California, Los Angeles’ (UCLA) David Geffen School of Medicine. Karlin is also medical director of the UCLA-Motion Picture Television Fund Palliative Care program.
Young adult and adolescent patients who receive pediatric palliative care support throughout on in their illness trajectories may have better outcomes compared to others, Karlin said at the Annual Assembly of Hospice & Palliative Care, an event by the American Academy of Hospice and Palliative Medicine (AAHPM) and the Hospice and Palliative Nurses Association (HPNA). Access to palliative care can help support a patient and their family through several iterations of physical, emotional and financial changes as they enter the adult health care space, he stated.
“It’s many domains of change: emotional, transitioning of care, insurance changes, identity formation and also family changes might be going on” Karlin said during the assembly. “All of these are going to make it challenging to manage a chronic disease, and a lot of these processes around identity formation can be delayed or distorted because of the demands of an illness. The idea of adolescents with a chronic illness is the capacity of a system, enterprise or person to maintain its core purpose or integrity in the face of dramatically changed circumstances.”
Palliative care providers play an important role in helping patients transition into adulthood, Karlin said. The interdisciplinary teams are a core part of ensuring patients receive goal-concordant care and understand all of their options, according to Karlin.
Key points to highlight with patients include examining the differences between pediatric and adult palliative services. Adult patients may receive curative treatments alongside palliative care services, but the scope of coverage can be more limited for some patients with lower symptom burdens, according to Karlin.
Moving into the adult care setting also comes with challenges around preparing patients to make more autonomous decisions, Karlin added. This involves more goals-of-care discussions that place patients in decision-making roles as they reach adulthood while also balancing the integration of support from their parents, guardians or caregivers, he stated.
“We can be that bridge that provides continuity transitioning between the pediatric and adult patients,” Karlin said. “We can shift our focus to helping young adult patients thrive in the face of illness.[It’s] advocating for an interdisciplinary team that can really provide that level of support. How do we start at this stage to encourage ownership over medications and in other small ways build some independence by giving control to our young adult patients?”
Medically fragile and complex youths age in vastly different ways than their healthy peers depending on their conditions, according to Jeannette Meyer, palliative care clinical nurse specialist at UCLA Health. Seriously ill children spend a significant portion of their time in hospitals, health clinics and facilities as they address and manage their symptoms, which can lead to negative mental health impacts. A lifetime of growing up in a fragmented health care system can have some patients developing mistrust, fears and anxiety in seeking out treatments, she said.
Palliative care providers have the communication skills to engage patients in conversations discussing sensitive topics and help them navigate decisions that align with their values and goals, Meyer indicated.
Among the most challenging elements for pediatric patients is transitioning to a new care team in the adult care setting, Meyer stated. Having transition plans in place that help acclimate a patient and interdisciplinary teams can be a vital step in care continuity, she said. This involves strong communication and collaboration across both adult and pediatric clinicians, social workers and spiritual care providers.
Collaborative pediatric and adult palliative care partnerships are a significant part of ensuring quality of life and ongoing management of a patients’ physical, emotional and practical needs, Meyer said.
“We have to help them address all of these things, and that means partnering with the pediatric colleagues who have been doing this up to this point now,” Meyer said during the assembly. “It is mandatory that they trust us, that they learn that as much as we can … we will help control these symptoms. We as clinicians need to adjust our thinking. They need tools to help them make their plans. They need to have a voice.”
