Hospitals must keep their doors open to all types of sick children

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.

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.

Jay Berry is a pediatrician and hospitalist in the Complex Care Service at Boston Children’s Hospital. He blogs at Vector, the Boston Children’s Hospital science and clinical innovation blog

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  • http://breathtaken.net Prissi

    That’s very alarming, because I don’t know that every community pediatrician is actually trained/equipped to deal with medically fragile kids. If you have the fortune to train at an institution where you deal with medically fragile kids every single day then definitely you could pick up the slack, but not everyone chooses to do so either (I know people who want to go to a community program because they don’t want the workload of a tertiary children’s hospital). I’ve definitely seen medically fragile kids whose parents were told some strange things by their PMDs, or otherwise told to come to us because they didn’t feel comfortable dealing with the complexity of their conditions.

  • SnapInTime

    Thank you so much for what you do. Thank you for your obvious desire to help the children under your care and to keep learning and growing in your profession. Thank you for recognizing the challenges faced by the families when we take our children home. As a parent of medically complex children, I have learned that is something to never, ever take for granted. Children like mine depend on specialists like you to maintain the highest level of health they are capable of achieving and we appreciate your efforts amid the increasing challenges faced on all sides these days in medical care. (As parents there is a lot we fear as well.)

    And to add- one of my children receives care at CHB. it’s a wonderful hospital. :)

  • http://twitter.com/caredisability mary jones

    I attended an ethics talk given my an MD- pediatric policy physician at a children’s hospital in my country, which has a government-run health system. She began with a review and explanation of government funding and method of prioritizing and concluded this part of her talk by stating emphatically that there would be no more resources for therapies and nursing for children at home. “So…..” she said, “we have to think critically about quality of life vs salvageable life.” She went on to say that we are saving too many children who should be left to die. She stated that most parents regret the decisions they make in the NICU and it is very difficult for siblings. (she had no references for those claims). I was shocked and felt sick. What about informed consent and parental wishes and values? Everyone in the room, which consisted mostly of providers was nodding and clearly on the same page as this physician. I suppose my country is meeting the challenges of complex children in the future by limiting their existence. However, one only needs to consider the trends in preemie resuscitation practiced everywhere to see the same. Guidelines suggest not resuscitating certain preemies NOT because there is no chance of survival but because an “unacceptable” percentage will survive with disability.

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