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A Niche in Home Care

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Johns Hopkins Home Care nurses Carla Cook and Dottie Hall, outside a patient's home in White Marsh.

Throughout her 34-year pediatric nursing career, Dottie Hall has discovered that colleagues either love home care or hate it. Those in the former camp, she says—herself included—tend to be particularly driven, goal-oriented and skilled at time management.

Hall is clinical supervisor and one of seven Johns Hopkins Home Care Peds at Home nurses specializing in end-of-life, or “palliative,” care. In that role, she helps families deal with pain management, feeding problems and the emotional stress and grief that accompany a child’s final stages of life. In partnership with pediatric oncology staff and Maryland Community Hospice, Hall attends to the youngster’s every need in an intimate setting.

To some parents, resorting to a palliative care team implies that they’ve given up hope. But, says Hall, she’s found that the move actually empowers her patients. “It enables the child and parents to say goodbye and what they need to say in the comfort of their home.”

And yet, explains JH Home Care’s pediatric director Susan Huff, there’s a fine line between palliative and hospice care. “We focus on a child’s needs throughout the trajectory of an illness,” she says. “That may lead to hospice, but not necessarily right away.”

So instead of rushing children with life-threatening or end-stage illnesses to the hospital every time symptoms worsen, Peds at Home nurses collaborate with other professionals to manage children at home for as long as possible. With steady increases in premature births and a preponderance of chronic diseases in children, demand for home care nursing is on the rise, notes Huff. Meanwhile, the industry is responding with equipment for the tiniest babies, including feeding tubes, intravenous pumps and ventilators.

Always on alert for subtle changes in the patient’s health and composure, Hall considers her work advanced practice nursing. “You’re the eyes and ears of the doctor,” she says, despite the fact that she can’t write orders. Yet collaboration is a hallmark of the specialty; she’s in constant touch with the care team.

At the same time, Hall relishes the opportunity to build relationships. Several months ago, for example, she took care of a teenage girl who battled acute lymphocytic leukemia. Hall watched the 18-year-old get ready for two proms and graduate from high school. Not long afterwards, the patient died. Hall and two other Peds at Home nurses attended the funeral.

“We tried to leave quietly,” says Hall, “but the stepmom ran over to us to say that she couldn’t believe we came.” The girl’s father, meanwhile, admitted that he was struggling with his experience over the previous months. “He told us, ‘I hope she understands why we put her through this.’ ” Hall reassured him that she did. And, though Hall acknowledges that cases like these are physically and emotionally draining, “for me,” she says, “this is the most rewarding specialty—I think of it as a calling.”


—JM

 

 

Johns Hopkins Medicine

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