Hospice Care Network Offers Unique Pediatric Services
Monday November 2, 2009
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Amy Resnick, RN, left, and Barbara A. McGuire, LMSW
(Courtesy of Hospice Care Network)
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Now, she says it is what she was put on the Earth to do. “It’s not for everybody, and it’s very sad at times. But I never feel like it’s depressing. I feel like we’re doing good for people,” Resnick says.
Hospice Care Network is a certified nonprofit organization serving families in Nassau, Suffolk, and Queens counties. In addition to traditional adult hospice and bereavement programs, Hospice Care Network offers pediatric hospice and bereavement, which includes perinatal services for families.
Resnick typically visits patients a few times a week, or when the families need help, she says. She goes to the home and does the physical assessment. She educates parents and caregivers about medication, oxygen if it’s needed, etc.
“We pretty much teach parents how to take care of the child and make the child comfortable, so that child can stay out of the hospital,” she says.
Children in the program typically either have cancer or a genetic abnormality, such as a chromosomal abnormality. Some children might be in the program for as long as a year and a half, but it’s usually shorter, Resnick says.
Resnick says nurses do not need to be trained pediatric nurses to work in pediatric hospice. Rather, nurses have to be willing to learn the nuances of treating pediatric patients. For example, although the medications are essentially the same as one would administer to adult patients, they are given at smaller dosages, increasing the room for error. Plus, children can respond quite differently to certain medications compared with adults.
Although the clinical side is important, so is interacting with patients and their families.
“There is really a lot more to [our care] in the sense that you become part of the family. You might see an adult [in hospice] once a week. ... But when you’re seeing these children three times a week, maybe even more, it’s not only about their medications. It’s about being there so the families don’t feel so alone in all of this,” Resnick says.
Marvaline Joseph, RN, a nurse who works on the adult side of hospice at Hospice Care Network, says in addition to the clinical assessment, one of the most important roles of the hospice nurse is spending time — no matter what the age of the patient is.
“We have the time to sit down with the patient and their family members,” Joseph says. “I sit with them and hold hands. Even if they’re nonverbal, I still talk with them.”
Resnick has noticed differences among adult and pediatric hospice families. Unlike adult patients and families, who often are in denial about being at the end of their lives, children’s families tend to accept their plight, Resnick says.
“They don’t want this. They would rather have anything else in the world but for this to happen, but they’re very accepting of it and want to do what’s right for the child,” Resnick says.
As the nurse caring for these young patients and their families, Resnick says she receives the emotional support she needs from colleagues, especially social workers. She also gets support from the very people she is charged with helping.
“I have to tell you that I have so much fun with these children and their parents. We just laugh and have a good time,” Resnick says.
Clients include pregnant mothers who choose to carry their babies to term, despite being told their unborn babies might be stillborn or have a terminal illness.
“We journey through the entire process with them. So the counselor stays with the family throughout the entire pregnancy, as well as when they bring in pastoral care, and are with them during the birth, if [the families] want,” McGuire says. “I don’t know many hospice programs that offer as extensive a bereavement program as we do. A lot of hospices mandated by Medicare provide bereavement up to 13 months after the patient dies. However, most bereavement is letters and possibly a phone call from a volunteer. In our bereavement department, we have trained professionals and a large staff, and we treat our clients individually and run groups.”
“... We’ve found that even having a diagnosis in utero of a terminal illness of a child is a tremendous grief,” McGuire says. “The loss of that child can go on for decades. The message that I would want people to hear is: Don’t go through this alone. Please seek the support.”
Hospice is much more than administering morphine, Resnick says.
“Even my own friends ... think we just give patients morphine and then they die. But we know how to make them comfortable, so that they can live peacefully for however long they have,” Resnick says. “It’s not really different with a child. Sometimes, the good thing about a child is that they don’t know they’re sick, so this is just their normal routine.”
Lisette Hilton is a freelance writer. To comment, e-mail editorNY@nursingspectrum.com.
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