Children with medical complexity make up a small percentage of the pediatric population, only 1.5%, but thanks in part to improvements in technology and care, the group is one of the most dynamic. They also account for a third of all pediatric health care spending and half of hospital costs related to children, as well as patients who require pediatric palliative care services. Justin Yu, MD, MD, Assistant Professor of Pediatrics at UPMC Children’s Hospital in Pittsburgh, Pa. Discussed at the 2021 American Academy of Pediatrics National Virtual Conference and Exhibition on How Pediatric Hospice Palliative Care (PPC ) can improve the medical home, making PPC unique to adult palliative care, and best practices for collaborating with available PPC specialists.
The concept of a nursing home is a concept familiar to healthcare professionals, intended to ensure that a child’s care does not fall through the cracks. For a child with medical complexity, this is even more crucial because there are so many different parts of the child’s care. For these children, Yu recommended considering the medical house as a medical district which, in addition to the child’s primary care provider, also includes specialists, therapists, pharmacists, outpatient managers, the hospital. , long-term care providers and social services.
PPS differs from adult palliative care in several key ways, Yu explained. Unlike most adults, PCP is often used in conjunction with curative or life-prolonging treatments. This early relationship with palliative care means that the PPS specialist often has long-term relationships with patients and families that can span decades. Because many conditions are genetic, congenital, or neuromuscular, CPAP specialists often treat more conditions and symptoms than their peers who work with adult patients. Finally, great prognostic uncertainty exists in PCP.
When a team wants to collaborate with a specialist or a PPC team, Yu recommended:
- Set clear expectations
- Ensure that responsibilities are assigned from the outset
- Development of formalized co-management plans
- Use clear SEO guidelines
- Identify and use communication channels
Even with such a collaboration in place, clinicians working with children with medical complexity should be able to master the most basic elements of palliative care in 4 key areas, Yu said. One of those areas is management. symptoms. Clinicians should be able to assess and begin first-line treatments for pain, dyspnea, and nausea. Another element is to provide psychosocial support not only to the patient, but also to the caregiver. This includes support and recognition of existential distress. Caregivers should also be respected as the experts in the care of their child. Transparent and compassionate communication is another facet. Clinicians should strive to provide understandable and compassionate explanations of a child’s conditions. They should also check if the caregiver understands what has been explained, perhaps using the question “how do you understand what I (or other doctors) have told you?” The final area is the coordination of care, making sure everyone is on the same page and that the necessary paperwork gets to the right destination.
1. Yu J. Role of palliative care in primary care. American Academy of Pediatrics National Conference and Exhibition 2021; virtual. Accessed October 8, 2021.