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Pediatric Hospice and Palliative Care: When the Bough Breaks

The views expressed are those of the author and do not necessarily reflect the views of ASPA as an organization.

By Richard T. Moore
June 17, 2019

Many of us are familiar with the traditional lullaby, Rock-a-bye Baby and its ominous words, “When the bough breaks, baby will fall, and down will come baby, cradle and all.” Since the song became popular in the late eighteenth century, the real meaning of the phrase appears to be lost to history. However, it arguably may have warned of serious injury or death to a child, since twelve percent of children died in their first year of life in that era, and nearly four in ten would die in the first six years. There are few, if any, tragedies more difficult to comprehend than the death of a child, especially in the modern era when child deaths are less common because of improvements in health care.

A child’s serious illness or death remains especially traumatic for both children and their families in the 21st century. Nevertheless, there are programs designed to ease the pain and stress of a child’s last days—or even brush with death—for both the child and those providing love and care. Pediatric hospice and palliative care programs serve children with serious illnesses. They focus on relieving suffering and improving quality of life for patients and their families, but are not intended to cure the disease itself. They help seriously sick children be as comfortable as possible—emotionally, spiritually and physically. Hospice care also helps parents, siblings and grandparents.

Fortunately, there are national organizations, such as the National Hospice and Palliative Care Organization and the American Academy of Pediatrics, which can offer guidance to parents and medical providers to help children facing serious, even life-threatening, conditions.  

When Massachusetts developed its landmark health care reform law (Chapter 58 of the Acts of 2006), the Legislature established a pediatric palliative care program with an initial appropriation of $800,000. The funding, which has been continued and increased over the past thirteen years, was necessary because of Medicare restrictions on use of federal funds for such programs. Medicare required that to be eligible for hospice and palliative care funding, the patient was expected to die within six months, would agree to forego any experimental treatments and agree to no longer receive traditional treatments intended as a cure.

Policy makers in Massachusetts understood that no parent was likely to accept that their child would die within six months, would agree to end treatments that might cure the condition or would give up hope on experimental treatments that might be available. Therefore, legislators provided full state funding for the pediatric palliative care program in the absence of Medicare funding so that families could gain access to the services. After more than a dozen years and both Democratic and Republican administrations, the Pediatric Palliative Care program, offered at seven licensed hospices across the state, continues to be able to expand through increased funding and bi-partisan legislative support. The program has served 544 children in fiscal year 2019 with 484 currently receiving services, an increase over the previous year when 433 children received services.

Nicole Roos, Director of Special Projects ad the Massachusetts Department of Public Health, notes that Massachusetts is extremely fortunate to have the state-funded Pediatric Palliative Care Network. Most pediatric palliative care services are not covered by third party reimbursement, so this program provides a service that many families of children with life-limiting conditions otherwise would not receive. Despite increases in state appropriations that have allowed expansion of the programs, there continues to be a waiting list as the rate of new referrals outpaces the ability to take on more children.

The need for pediatric palliative care services is even greater across the country. The roughly 43,000 children who die every year in the United States could benefit from those services. In the New York Times, May 15, 2019 article, “Where Should a Child Die? Hospice Homes Help Families with the Unimaginable,” author Helen Ouyang writes, “By some estimates, around a half million children have serious medical conditions that are expected to shorten their lives. For too many of them, death will most likely happen amid the fluorescence and thrumming machinery of an intensive care unit.” Often, the care that these children are receiving is expensive and does not offer the quality of life or support that children and their families need as they cope with the frequently inevitable conclusion. For more than thirty years, adults have benefitted from hospice services supported by Medicare in the more than 4500 adult hospice programs, but only about ten percent of them will care for children, according to Ouyang.

Unless the federal government amends the Medicare Hospice Benefit Act of 1986 to be more child and parent friendly, or states follow the lead of the Massachusetts Pediatric Palliative Care Network, care for children with life-limiting illnesses will continue to be beyond reach for most families, and their care in acute care facilities will continue to add to rising health costs.

Author: Richard T. Moore has served in both elective and appointed public office at local, state, and federal levels of government. He served for nearly two decades each in the Massachusetts House and Senate, as well as being chosen as President of the National Conference of State Legislatures. He also served in Washington, DC as Associate Director of FEMA in the Clinton Administration and as a Presidential Elector in 1992. A former college administrator and adjunct assistant professor of government at Bentley University and Bridgewater State University, Mr. Moore is a long-time member of ASPA serving terms as Massachusetts Chapter President and National Council member. He was the lead Senate author of the landmark Massachusetts Health Care Reform law (2006) and of the Massachusetts Health Care Cost Containment law (2012).

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