Opinion: Connecticut needs broad access to pediatric palliative care

Hartford Courant – Saturday, August 30, 2025
By Elle Rothermich and Eugene Rusyn

Nearly 8,000 Connecticut children suffer from a serious illness. Nearly all these children could benefit from palliative care, which would help them and their families manage their symptoms and improve their quality of life. Yet this care is not widely available in Connecticut. The legislature will have the opportunity to change that next year and should seize it.

Palliative care is not end-of life-care. For many patients with chronic conditions, palliative care is care to improve life. By easing pain, anxiety, and other symptoms, palliative care allows children to participate in family activities, school, and favorite pursuits to a much greater degree than would otherwise be possible. For children living with a range of serious illnesses—from incurable neurodegenerative conditions to cancer—a palliative care team can keep pain under control and provide a broad variety of supports, such as care coordination, social services, counseling, art and music therapies, physical therapy, and therapeutic massage. Children’s caregivers and loved ones can also access psychological and spiritual support.

California, Massachusetts, and Vermont, among other states, have already developed pediatric palliative care programs—with impressive results. California’s program, for example, reduced the average number of days each participant spent in the hospital per month by 32 percent. It also reduced average total costs per participant by 11 percent.

By contrast, most insurance plans in Connecticut only cover palliative care for children enrolled in hospice, a specialized form of care for people nearing death. To qualify for hospice, a person must be expected to live for six months or less. Because childhood illnesses are often unpredictable, and may be chronic but not terminal, many children never qualify for hospice. As a result, these children and their families are forced to go without insurance coverage for palliative care.

Moreover, even if a child’s family can pay out of pocket, the child’s care team may not be trained to provide palliative care. There are very few clinicians in Connectict who specialize in pediatric palliative care. The 2024 Center to Advance Palliative Care Connecticut Scorecard reports only 3 pediatricians holding active subspecialty certification in Hospice and Palliative Medicine and 12 certified pediatric nurses. And unlike many other states, Connecticut does not currently mandate dedicated continuing education in core palliative care competencies for all clinicians.

This needs to change—and can. Last year, the Connecticut General Assembly established a Working Group to study pediatric palliative and hospice care. That Working Group is scheduled to present a report to the legislature with concrete reform proposals next year. In support of that initiative, our team at Yale conducted an analysis of existing pediatric palliative care models across the United States. Based on our findings, we recommend two complementary reforms.

First, to benefit as many children as possible, Connecticut should expand coverage for palliative care from the point of diagnosis through (1) Medicaid, (2) a fully-state funded program, or (3) a hybrid of the two. Second, Connecticut should launch a statewide training initiative to ensure the pediatric clinical workforce has core palliative care knowledge, since many physicians and other providers receive little or no such education.

Connecticut can make these reforms without burdening the state budget. States can promote access to palliative care by leveraging tools like Medicaid pilot programs, local provider training initiatives, and more. These changes may require an up-front investment, but as states like California have shown, well-designed programs are often cost-neutral, if not cost-saving, since palliative care can prevent emergency room visits, invasive procedures, and hospital stays—lowering the overall cost of care for both families and health systems.

Connecticut has long stood at the forefront of health reform, so it is well positioned to become a pioneer in pediatric palliative care. In addition to leading on Medicaid cost control and quality, Connecticut was the first state in the nation to adopt hospice over 50 years ago.

Once the Working Group submits its final report in mid-2026, lawmakers will have a menu of specific reforms the state can make to improve access to pediatric palliative care. The General Assembly should then act quickly to translate those recommendations into reality.

Connecticut has all the tools it needs to help children and their families lead fulfilling lives despite serious illness. It is time to use them.

Elle Rothermich is deputy director of the Solomon Center for Health Law and Policy at Yale Law School. Eugene Rusyn is a senior academic fellow at the Solomon Center for Health Law and Policy at Yale Law School.

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