Solomon Center Develops Blueprint to Improve Health Care for Children with Serious Illnesses
Researchers at the Solomon Center for Health Law and Policy at Yale Law School have published the latest in a series of white papers examining how Connecticut could expand access to pediatric palliative care, a specialized medical intervention that provides children and their families with relief from the symptoms and stress of serious illness. The paper accompanies the researchers’ work advising Connecticut’s pediatric palliative care working group (known as CHAMP), which is preparing to submit reform recommendations to the state legislature next year. The researchers have also authored related commentary.
Read the paper: “Improving Data Collection: An Introduction to Comprehensive Case Review”
The new white paper, authored by Solomon Center Deputy Director Elle Rothermich and Senior Academic Fellow Eugene Rusyn ’17, focuses on the data collection Connecticut must undertake to accurately capture and improve upon pediatric palliative care services across the state. Studies have repeatedly shown that palliative care positively impacts patients and health systems, such as by significantly reducing patients’ symptom burden, hospital admissions and readmissions, and the cost of inpatient services. However, Connecticut lacks a reliable source of data on pediatric palliative care. As a result, the answers to critical questions remain unknown, including how many children in the state may benefit from or are already receiving such care, what illnesses they have, which services are furnished, what forms of health coverage exists for those services, and the extent of cost savings for patients and health providers.
The white paper explains how lawmakers could fill this gap. First, Connecticut would need to define the scope and content of pediatric palliative care for purposes of ongoing data monitoring, building on best practices from other states and expert organizations. Policymakers would need to cast a wide net to avoid excluding services that could improve the wellbeing of children with serious illnesses and that of their families. These services risk going undercounted in future cost-benefit analyses, thereby not receiving the financial and structural support essential to reaching children in need.
Second, the researchers urge Connecticut to pattern pediatric palliative care data review efforts off an existing public health model with a track record of success: maternal mortality review committees. These committees conduct comprehensive reviews of individual pregnancy-associated deaths to determine which ones could have been prevented. Just as many maternal deaths are not timely identified as pregnancy-associated, many children with serious illnesses are not recognized as eligible for palliative care. Remedying this lack of access requires a close investigation of underlying barriers — a task that a pediatric palliative care review committee would be ideally suited to accomplish.
“Reliable data about which patients need palliative care, which services are most impactful, and where gaps persist is critical to the long-term success of any pediatric palliative care program,” said Elle Rothermich, deputy director of the Solomon Center and a co-author of the white paper. “We have shown that Connecticut has several effective models to draw from, and that those models can be tailored to improve health outcomes for children with serious illnesses.”
About the Solomon Center
The Solomon Center for Health Law and Policy at Yale Law School is the first of its kind to focus on the intersection of law and the governance, practice, and business of health care. The center brings together leading experts and practitioners from the public and private sectors to address cutting-edge questions of health law and policy, and to train the next generation of top health lawyers, industry leaders, policymakers, and academics.
