Children with medical complexity: Caught in a political and economic crossfire

by Jay Berry on December 27, 2012

What will happen to medically complex children if insurance coverage is reduced and fewer pediatricians are trained to care for them? (Image: Wikimedia Commons)

Jay Berry, MD, MPH, is a pediatrician and hospitalist in the Complex Care Service at Boston Children’s Hospital. His most recent research appears in the JAMA Pediatrics, accompanied by editorials on the findings’ implications for health care and residency training. Berry further discusses its implications in this podcast.

My first encounter with a children’s hospital was as a first grader in 1980, when my 5-year-old cousin was diagnosed with cancer. Although her family was challenged to afford her cancer treatments, St. Jude Children’s Hospital in Memphis welcomed her and treated her cancer into remission. I remember my parents saying, “Everybody in that hospital loves children. No child is turned away.”

In 1997, walking into the Children’s Hospital of Alabama as a medical student, I felt the same sense of hope and courage. Everyone on the staff believed that they could make a difference in the lives of the children and families, despite the horrific illnesses that many of the children endured. I knew, immediately, that I wanted to become a pediatrician and to learn how to care for sick children.

Nearly 15 years have passed, and I’m still learning. As a general pediatrician with the Complex Care Service (CCS) at Boston Children’s Hospital, I care for “medically complex” children. These children have complex chronic health problems like severe cerebral palsy and Pompe’s disease. Many of them rely on medical technology, like feeding and breathing tubes, to help maintain their health. They routinely see a myriad of different providers to manage their health problems. In CCS, we try to optimize the health and well-being of these children by meeting their health needs, coordinating their care and creating proactive care plans for them.

Many of our patients travel long distances, across state lines, to get care at Boston Children’s Hospital because their local providers and hospitals are not set up to care for them. In a recent study of 28 children’s hospitals across the United States and Canada, we found that children with medical complexity are the most rapidly growing population of patients receiving hospital care. They are utilizing children’s hospitals more frequently over time than are healthier children, and they are becoming the predominant population that children’s hospitals serve in the inpatient setting.

In a study of 28 freestanding children’s hospitals from 2004 to 2009, hospitalizations of children with lifelong, complex conditions increased by 36%.

Children with medical complexity tend to arrive at the hospital with acute illnesses that are difficult to treat. They require more resources (medications, equipment, hospital staff) than healthier children. They stay in the hospital for a longer time, and they have a higher risk of returning back to the hospital after they are discharged home. If they do transition successfully to home, their parents and providers are faced with a heavy caregiving burden to keep them safe and healthy over time.

In the current political and economic climate, state and federal funds for children’s health are at risk for being cut, including Medicaid coverage for hospital care and coverage for community health services like home nursing and durable medical equipment. Most children with medical complexity rely on these funds to maintain their health, and children’s hospitals rely on these funds to treat these children.

Making matters worse, federal funding to train America’s next generation of pediatricians might be reduced. In the last few decades, most pediatricians have graduated from residency and fellowship programs in children’s hospitals, where, like me, they were taught how to properly care for children with medical complexity.

What will happen to these children if fewer pediatricians are trained to care for them? If limitations in their insurance plans preclude their healthcare needs from being met? Where would these children go for their care? What would their families do? Could existing community pediatricians pick up the slack? I’m bothered by the potential answers to these questions.

I’ve been privileged to train and work with clinicians and researchers from America’s best children’s hospitals. I’ve seen, first hand, how important these hospitals are for children, especially those with medical complexity. No matter how threatening the political and economic climate may be, children’s hospitals must keep their doors open to all types of sick children.

1 comment

  • Julie Peck

    Incredibly important commentary in the light of the dual eligibles project. We need to have this group properly defined so that essential services will be available when the time comes.

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