Using pediatric palliative care to create the medical neighborhood

Children with medical complexity represent a small percentage of the pediatric population, just 1.5%, but due in part to improvements in technology and care the group is one of the fastest growing. They also represent a third of all pediatric health care spending and half of children’s hospital-related inpatient costs, as well as being the patients who require pediatric palliative care services. Justin Yu, MD, MD, assistant professor of pediatrics at the UPMC Children’s Hospital of Pittsburgh in Pennsylvania discussed at the virtual 2021 American Academy of Pediatrics National Conference & Exhibition how pediatric palliative care (PPC) can enhance the medical home, what makes PPC unique from adult palliative care, and the best practices for collaborating with available PPC specialists.

The medical home concept is a familiar one for health care professional, meant to ensure that a child’s care doesn’t fall through the cracks. For a child with medical complexity, this is even more crucial because there are so many different parts of the the child’s care. For these children, Yu recommended thinking of the medical home as more like a medical neighborhood that in addition to the child’s primary care provider also includes specialists, therapists, pharmacists, external case managers, the hospital, long-term care providers, and community/social services.

PPC differs from adult palliative care in a few key ways, Yu explained. Unlike with most adults, PPC is often utilized concurrently with curative or life-extending treatments. This early relationship with palliative care means that PPC specialist often have long-term relationships with patients and families that may span decades. Because many of the conditions are genetic, congenital, or neuromuscular, PPC specialists often deal with a larger range of conditions and symptomologies than their peers who work with adults patients do. Lastly, a great deal of prognostic uncertainty exists in PPC.

When a team wants to collaborate with a PPC specialist or team, Yu recommended:

• Setting clear expectations
• Ensuring that responsibilities are assigned from the outset
• Making formalized co-management plans
• Utilizing clear referral guidelines
• Determining and using communication avenues

Even with such a collaboration in place, clinicians working with children with medical complexity should be able to the most fundamental elements of palliative care in 4 key areas, Yu stated. One of those areas is symptom management. Clinicians should be able to assess and start first-line therapies for pain, dyspnea, and nausea. Another element is providing psychosocial support to not only the patient, but the caregiver as well. This includes providing support and recognizing existential distress. Caregivers should also be respected the experts of their child’s care. Transparent and compassionate communication is another facet. Clinicians should strive to provide understandable and compassionate explanations of a child’s conditions. They should also ascertain whether the caregiver understands what has been explained, perhaps using the question “what’s your understanding of what I (or other doctors) have been telling you?” The final area is care coordination, ensuring that everyone is on the same page and that necessary paperwork makes it to the correct destination.

Reference

1. Yu J. Role of palliative care in primary care. American Academy of Pediatrics 2021 National Conference & Exhibition; virtual. Accessed October 8, 2021.