While the need to address disparities in care is well known, few strategies for reducing disparities have been studied systematically.
Few things in life are as tragic as the death of a child.
Yet Joan “Jody” Chrastek, M.S.N., R.N., C.H.P.N., a pioneer in the emerging field of pediatric palliative care, has devoted her career to caring for children at the end of their lives—and even finds her work uplifting.
“Of course it is sad when you know a child will likely die,” says Chrastek, coordinator of pain and palliative services at Children’s Hospitals and Clinics of Minnesota and a recent Robert Wood Johnson Foundation (RWJF) Executive Nurse Fellow. “But when everyone else says there’s nothing else that can be done, we are the ones who can say, ‘No matter what, we will be with you in your pain and do our best to relieve it.’ It’s an amazing and unique position to be in.”
Chrastek never intended to spend her life walking this difficult “but amazingly fulfilling” path.
Born and raised in India, Chrastek studied and practiced nursing in Scotland and then headed to Minnesota, where she hoped to find a job as a midwife. But because she lacked the license she needed to practice in the United States, she took the first offer that came along—working in hospice. “The moment I walked in,” she recalls, “I said to myself: ‘This is where I want to be.’”
Few Resources for Children
Chrastek spent the early years of her career in hospice care working with adults, but after a three-year stint in India as a school nurse, shifted her focus to children.
She resumed hospice care when she returned to the United States in 1991, but noticed there were far fewer palliative care resources for children than there were for adults. Hospices, she observed, often did not accept children with life-threatening illnesses like cancer and neurodegenerative diseases, leaving many of these children and their families to cope alone. “Especially in rural areas, families who want to take their children home to die may have no hospice support available to them,” she says. “We would never do that to Grandma, but we do that to a child.”
Much of the funding and research in palliative care has been directed at adults, she says. That’s partly because the medical community—and society at large—finds it difficult to admit that children die. As a result, she says, many children and families do not get the palliative care that they need, even in their final hours.
A 2003 report by the Institute of Medicine began to change that. Called “When Children Die,” the report lays out the need for increased research, education and provision of palliative care for children and provides recommendations for ways to do that.
Comprehensive palliative care providers can take simple steps, she says, like replacing a feeding tube at home instead of at the hospital and treating symptoms early, to help reduce the number and length of hospitalizations—steps that increase patient satisfaction and reduce health care costs.
Expanding Children’s Access to End-of-Life Care
The groundbreaking report buttressed an effort by Chrastek to increase access for children to palliative care. She applied to the Foundation’s Executive Nurse Fellows Program—and in 2005 she received funding to build three pediatric palliative care centers in Minnesota. The centers have increased access to palliative care for children in the area and have also served as educational centers for local professionals.
In 2008, the project received federal funding to expand nationwide. Chrastek is now part of a team working to create a national network of pediatric palliative care providers. The group plans to create a Web-based “information clearinghouse” that will enable palliative care providers across the country to collaborate, share knowledge and expertise, and learn about educational opportunities.
“The focus is to help integrate pediatric palliative care into professional practice and to encourage professionals to specialize in the field so that every child who needs palliative care can access it in their local communities,” she says.
Chrastek comes closer to that goal every day—a cause for joy in a job defined by tragedy.
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