Serious and terminally ill children and their families can have various behavioral health needs that could be better supported through an interdisciplinary care approach. Innovative care model development comes with a host of operational and logistical considerations.
Having strong pediatric palliative psychology support includes setting patient eligibility criteria, clinical training and care coordination, according to Kelsey Largen, pediatric psychologist at Children’s Healthcare of Atlanta.
Compared to adults, pediatric palliative psychology models focus more on providing family-centered care, Largen 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).
Having clearly defined roles across a dynamic interdisciplinary care team is key to addressing the unique needs of pediatric patients and their families, Largen indicated.
“From an ethical standpoint, a psychologist cannot provide individual therapy to every member of the family, so, it’s important to set clear expectations from the get go,” Khatami said during the assembly. “Also, do you think it would be helpful to establish baseline referral criteria? You want to be thoughtful.It’s important to be aware of and troubleshoot ….”
Medically complex and fragile children have behavioral health needs that evolve over the course of their illness trajectory, according to Linda Radbill, pediatric psychologist at Children’s Healthcare of Atlanta. The same can be true for their siblings, parents and other family caregivers, she said.
Pediatric palliative programs need to integrate behavioral health professionals deeper into their care models to better support families, Radbill said. More collaborative care delivery can result in earlier identification of myriad changes or challenges that a patient or their family may be experiencing, and result in better outcomes, she stated.
Interdisciplinary collaboration in the pediatric palliative psychology space involves continuous communication and being able to pivot around family-centered needs, according to Radbill.
“Intervention really requires us to be flexible in our treatment planning due to the unpredictable nature of pediatric palliative care patients,” Radbill said during the assembly. “Their needs are changing all the time … Intervention is really meant to be family-centered. It can be addressing mood, symptoms and using non-pharmacologic pain management strategies. It can often be complex, depending on the diagnosis [or] issues in the past with their mental health playing a role. We’re really communicating back our findings to the palliative care team as well as other consulting teams.”
Behavioral health professionals can play an important role in goal-concordant care delivery, indicated Emma Khatami, section chief and associate division chief of psychology at Phoenix Children’s Hospital.
Pediatric psychologists can help clarify goals of care and facilitate advance care planning discussions, as well as address emotional suffering that can arise throughout a patient’s health journey, Khatami stated. These professionals can also lend expertise in grief-related discussions and collaborate with chaplains, social workers, physicians and nurses to address existential distress among families.
Integrating pediatric palliative psychology services consistent and clear communication with other care providers and with families, Khatami said.
“There’s likely going to be a high degree of some existential distress that a family is experiencing,” Khatami said. “It’s ensuring that the family feels that they’re getting the spiritual support as an adjunct to the medical and emotional support that the rest of the team is providing so comprehensively. There is room, and frankly a need, for lots of specialties in these tough places. But it’s important to be clear as far as who is providing which service to avoid redundancies in care or even worse – potential gaps in care.”
