Communication Key to Parental Decision Making for Children at End of Life

When facing decisions involving children with cancer at the end of life, three themes drove parental decision making-communication, extending time, and understanding prognosis, according to a recent meta-analysis.

The analysis, published online in September in Journal of Pediatric Oncology Nursing, included data from 10 studies that examined parental decision making at the end of life.

“I chose to conduct this meta-ethnography because in caring for children undergoing blood and marrow transplantation at Johns Hopkins Children’s Center for the past several years, I have observed first-hand the distress that parents experience while making decisions for their critically ill child,” said Katherine E. Heinze, BSN, RN, of Johns Hopkins Children’s Center.

Despite ever-increasing survival rates among childhood cancers, it is still one of the primary causes of disease-related death among children. Previous research has revealed that the decision making process at the end of life can be “complex and difficult” for parents. However, the medical community still lacks a thorough understanding of this process.

To gain increased understanding, Heinze and colleague Marie T. Nolan, PhD, MPH, RN, conducted a meta-analysis of 10 studies that examined the decision making process of parents at the end of life. The studies included were both quantitative and qualitative, and a mix of retrospective and prospective studies.

“The main finding of the meta-ethnography was that there are three main themes in the literature on parent decision making for a child with cancer at the end of life: 1) communication between parents and physicians, 2) parents’ desire to extend time, and 3) parents’ understanding of prognosis,” Heinze said.

Communication was the most prevalent theme, and was a part of all 10 studies that were examined. Specifically, parents valued “direct and honest communication” equating this form of communication with a high standard of care. In addition, parents valued interpersonal communication with cancer specialists more than medically based communication with them.

The second theme found in the literature was that decision making was linked to a desire to have more time with their dying child, with the decision to administer palliative chemotherapy based on this desire. In contrast, the research showed that “parents who chose symptom-directed care cited quality of life, patient’s wishes, and other family considerations as the basis for that decision.”

Finally, the ability to correctly understand the child’s prognosis affected decision making as well, with conflicting information from various sources making end-of-life decisions more difficult.

These findings have important implications for pediatric cancer specialists who assist parents through the decision making process for their child at the end of life, according to Heinz. However, the study did have some weakness due to a lack of racial/ethnic diversity, a minority of responses from fathers, and missing information on demographics including age, race and socioeconomic status.

“Additionally, supporting parents in the ‘good parent’ role through the decision making process is a practical way that cancer specialists can provide support and comfort to parents,” Heinze said. “This involves asking parents of dying children what being a good parent means to them at this time and supporting them in this role.