What the parents of a child dying from cancer need to hear above all from the healthcare professionals caring for their child is that everything possible has been done, to the best of the health care team’s ability, said Pamela S. Hinds, PhD, RN, FAAN, in the 2019 Mara Mogensen Flaherty Memorial Lecture on Friday, April 12, 2019, at the ONS 44th Annual Congress in Anaheim, CA.
Hinds, who holds joint appointments at the Children’s National Health System and George Washington University School of Medicine in Washington, DC, spoke about her research on end-of-life priorities and decision making by children with incurable cancer and their parents. She described how, in her initial work with dying children about their participation in their own end-of-life care, “they asked me to start working with their parents because the children were worried about them their parents.”
Words of Comfort for Parents
Other insights that have emerged from Hinds’ work are that parents want to know that the healthcare professionals caring for their child see them as good parents, that giving their child the best possible care remains a priority for the healthcare team even though the child’s cancer will not ultimately be cured, and that the healthcare team will remember both them and their child after the child’s death.
Parents’ Psychosocial Needs
Hinds’ research has shown that parents rate being a good parent to their seriously ill child as their central concern. Mothers cited making sure that their child feels loved—and, in particular, that the child feels loved by her—as the most important element of being a good parent, whereas fathers cited being informed about their child’s medical condition so they can make knowledgeable decisions on their child’s behalf. Single mothers also identified being informed about their child’s medical condition as the most important element of being a good parent.
Parents report that their sense of having been a good parent at the end of their child’s life helps them to emotionally survive the experience and the loss, Hinds said. For oncology nurses and other health care professionals, understanding the meaning of being a good parent to a dying child may help to guide clinical care, optimize support for difficult treatment or care decisions, and allow parents the comfort of having made a good decision.
The Impact of Nonverbal Cues
When a child is seriously ill or dying, Hinds said, the child’s parents tend to interpret everything that happens through the lens of their child’s situation. For example, parents in her research said that if a nurse enters the room with a serious facial expression, they wanted the nurse to explain the reason for her serious demeanor. Otherwise, the parents would assume that the nurse had come to deliver bad news concerning their child.
Trust in Transparency
Other needs that parents have said are important to them are that the healthcare professionals caring for their child be forthright and honest and provide the parents with any critical information that the parents should know.