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Palliative Care at Home
A program at the Children’s Center cuts down on admissions and psychosocial distress.

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Patient April Willis, 15, at home with Lauren Wendt, RN, part of April’s team.
Patient April Willis, 15, at home with Lauren Wendt, RN, part of April’s team.

Any given week, Rayellen Fisher sits on a couch out in Frederick, chitchatting about movies and Simon’s latest target on American Idol.  All the while, she is checking a blood pressure, recording new symptoms, and keeping 15-year-old April Willis at ease. Fisher spends the next hour and a half in the cozy family room, delivering one of the teenager’s three weekly doses of chemotherapy. 

But Fisher is doing more than keeping April’s T-cell lymphoma at bay.  She is part of a faction of Hopkins caregivers working to prove that young patients and their families need a compassionate, team approach to address pain as well as psychosocial, spiritual and developmental issues.

They need palliative care at home.

“A child doesn’t have to be at the end of life to need these services,” says Colleen Blough, pediatric oncology nurse. “We can keep a child from making trips to the clinic for symptom assessments. We can help keep him in school, keep his parents at work, and keep the family in their environment and in their routine.” 

April, for example, a conscientious high school student intent on making good grades amid prolonged absences, can stay in school on the days a nurse visits her home. It’s not only comforting for April, it’s convenient for the family who already spends two days a week at the East Baltimore campus.

With the support of other nurses and physicians across the Children’s Center, Blough’s idea led to a three-year, $150,000 grant from the Lance Armstrong Foundation, a group focused on helping patients with cancer live well with their disease. Partnering with the Children’s Center, the Maryland Pain Initiative, Sinai Hospital, University of Maryland and Community Hospice of Maryland, Blough and her colleagues have enrolled more than 40 pediatric patients in the new program.

Dubbed the “Butterfly Connection,” in reference to the transition these children make from hospital to home, the program improves the quality of life for  children and their families by reducing hospital admissions and clinic visits, decreasing psychosocial and spiritual distress and improving care coordination. 

With less than six months left on the grant, the group has tangible evidence that this early use of palliative care has a notable and positive effect, says Sue Huff, director of Hopkins Pediatrics at Home.

Huff, a 25-year-veteran nurse, says the team perfected the evaluation of pain and other symptoms on a standardized scale. As a result, better communication occurred between home health care providers and doctors, leading to fewer trips to the hospital or clinic.

“We want to gather evidence for the State of Maryland that if we create models of care that help families and children at diagnosis, not just the end, we will decrease hospital admissions, ER visits, improve quality of life for patients and families and actually save health care dollars,” says Huff.

In time, she hopes a much larger palliative care program will emerge to encompass a greater swath of patients. “The Butterfly Connection program is a very fortunate first step in that process,” says Huff. “Physicians, nurses and staff at the Hospital want full fledged palliative care, so they are hungry for these types of supports for their patients and families.”

Recently, the American Academy of Pediatrics issued a statement in favor of the use of palliative care from the earliest diagnosis. “If the nearness of death is used to determine if children receive palliative care, some children may die without the benefits of individualized family-centered palliative care.”

While the Children’s Center offers palliative care to its patients, most of it relates to a child’s hospitalization, education and bereavement. “We want to bring palliative care support out to the community,” says Huff. “We want to bring it home.” 

–Michele McFarland

 

 

Johns Hopkins Medicine

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