PROVO — It's not easy to care for dying children.
And a new BYU study found that pediatric intensive care nurses struggle even more when there are language barriers, parental discomfort with medical techniques and lack of consistency between members of the health care team.
"We know that communication is vital to the connection with the family," said pediatric nurse and nursing graduate student Nicole Rawle. "Nurses, and really all medical professionals, (need) to be trained on how to communicate, comfort and change the language of death."
That means having necessary interpreters when English is a second language, being clear about prognoses and using phrases like "letting go," rather than "giving up."
It also would mean more discussions about palliative care, rather than saying "nothing more can be done," which conveys a sense of abandonment to parents, Rawle said.
Palliative care is care not intended to cure or reverse a disease, but to alleviate pain and suffering for a more peaceful death, said critical care nurse and BYU nursing professor Renea Beckstrand.
The study, published recently in The American Journal of Critical Care, also included Lynn Callister and Barbara Mandleco as co-authors.
For the study, the group surveyed pediatric nurses and asked them to rank the severity and frequency of behaviors or situations that helped or hindered their end-of-life care for terminally ill children.
Nearly 500 nurses across the country responded and said they would like to see improved communication, less medical intervention when there is no hope of recovery and greater understanding from families about the importance of a peaceful death.
"The biggest obstacle I find is that because no one ever wants to 'give up' on a child, they never benefit from good end-of-life care until the very last minute," wrote one pediatric nurse who has cared for more than 30 dying children in 31 years.
However, Rawle pointed out that nurses do have control over three of the highest ranking supportive behaviors: allowing family members adequate time with the child after a death, letting parents hold the child while life support is discontinued and providing a dignified bedside scene once the child has died.
"Of all the end-of-life care studies I've completed, this pediatric study brought the most emotion," Beckstrand said. "These pediatric nurses are amazing. (They) want to stop the suffering of these dying children."
At Primary Children's Medical Center, the Rainbow Kids program helps families of terminally ill children learn about treatment options, communicate with their medical team and talk about their emotions.
"All of us are here to help these kids, and we want them to get better and go home," said pediatric nurse practitioner Toni Sherwood, who works with the Rainbow Kids program. "But not all children are going to get better and go home, and that's hard for us as medical providers to wrap our heads around."
So rather than trying to add years to a child's life, Sherwood said the focus is on adding life to their years, to help make their journey "as positive as possible."
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