Never Give Up Hope
Clinicians sometimes are reluctant to discuss a child’s terminal illness with parents because they’re concerned about the emotional impact of the information. They fear disclosure of prognostic information, especially when there is little chance for cure, is in opposition to hope.
Yet, Verna Hendricks-Ferguson, Ph.D., R.N., C.H.P.P.N., F.P.C.N., F.A.A.N., associate professor of nursing, said communicating honestly with parents about their child’s diagnosis increases hope – albeit a different kind of hope. Per her National Institutes of Health-funded study, a forthright dialogue about prognosis preserves parent and patient autonomy, and allows for choices at the end of life that are consistent with a family’s values.
“It troubles me ethically when we don’t do a good job of informing parents of their child’s diagnosis,” said Hendricks-Ferguson, an expert on end-of-life care for terminally ill children. “If you continue to offer treatment without fully educating parents about the possible outcome, parents continue to think you can cure their child. But we know through our research that by communicating truthfully with parents you help them develop a new hope. They have hope that their loved ones symptoms are controlled, that they can plan a vacation, set realistic goals or plan to make special memories with their child.”
For more than three decades, Hendricks-Ferguson has conducted extensive research in palliative care for children with life-threatening illnesses. Her recent research on the concept of hope surrounding children with brain cancer was published in the December 2016 advance online issue of the Journal of Pediatric Oncology Nursing. She also received the 2016 Research Writing Award from the Association of Hematology and Oncology Pediatric Nursing Association for her article “Novice nurses’ experience with palliative and end-of-life communication.”
Our studies found that the number one reason clinicians delay discussions about end-of-life care is that they didn’t receive training in how to do it.
Verna Hendricks-Ferguson
Hendricks-Ferguson is a supporter of an effort to make palliative care communication training mandatory in nursing schools.
Hendricks-Ferguson, a member of the Oncology Nursing Society’s Home and Palliative Care Special Interest Group, has published 40 articles focused on palliative and end-of-life care needs of children with cancer. Her topics have included early end-of-life care communication interventions for parents of children with brain tumors; delivery of patient and family education in pediatric oncology; the benefits of using early palliative care interventions in pediatric oncology and; contributions of advanced practice nurses during palliative care for children with cancer. Also, she is editor of the 2014 textbook, “Palliative Care for Pediatric Life Limiting Conditions.”
In 2017, Hendricks-Ferguson was named Certified Hospice and Palliative Pediatric Nurse of the Year and in 2015, the Hospice & Palliative Nurses Foundation honored Hendricks-Hendricks-Ferguson for her commitment to research by designating her a Fellow in Palliative Care Nursing.
Hendricks-Ferguson said her greatest reward, however, is working directly with families caring for their terminally ill children. Currently, she is working on an art therapy project with cancer patients at SSM Health Cardinal Glennon Children’s Hospital.
“I learn something from every family I’m privileged enough to meet and they’re so grateful for everything you do for them,” she said. “It’s a combination of these factors that has sustained my passion for end-of-life care for children.”
Founded in 1928, Saint Louis University Trudy Busch Valentine School of Nursing has achieved a national reputation for its innovative and pioneering programs. Offering bachelor's, master's, and doctoral nursing programs, its faculty members are nationally recognized for their teaching, research and clinical expertise.