Washington, DC - When parents are in the crucial stages of contemplating treatment for children with life-threatening or terminal illness, among the many sobering questions they ask: am I being a good parent to my seriously ill child?
That’s a question that Pamela S. Hinds, PhD, RN, FAAN, Associate Center Director of the Center for Translational Science, Director of the Department of Nursing Research at Children’s National Health System, and Professor of Pediatrics at the George Washington University School of Medicine, has pursued in a series of studies over the past several years.
Parents who have helped to make end-of-life decisions on behalf of their seriously ill children with incurable cancer want to be sure they are making decisions that match their internal definition of being a good parent for their children. Meeting this definition is a primary factor that influences their treatment decision-making even while weighing the importance of treatment recommendations from their ill child’s clinicians, Hinds says.
“Parents of children who have died of cancer 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 writes. “An understanding of the meaning of being a good parent to a child dying of cancer may help guide clinical care, optimize support for difficult treatment or care decisions, and allow parents the comfort of having made a good parent’s decision.”
Over the past five years, Hinds has conducted a series of studies involving the question of how parents define “being a good parent to my seriously ill child” and how clinicians can help parents achieve their definition of being a good parent. Most recently, Hinds and colleagues Tessie October, MD, of the Children’s National Division of Critical Care Medicine; KR Fisher, of the Department of Pediatrics at the George Washington University School of Medicine, and Chris Feudtner, MD, of the Children’s Hospital of Philadelphia, completed a study in the pediatric critical care unit entitled, “Parent Perspective: ‘Being a Good Parent’ When Making Critical Decisions in the PICU” published in October 2013 in Health Affairs.
In that study, Hinds and colleagues used a good parent ranking exercise and documented that fathers ranked “making informed medical decisions” as most important, while mothers ranked “focusing on their child’s health and putting their needs above their own” as most important. Single mothers stated “that making informed medical decisions” was most important for them.
In 2012, Hinds and fellow researchers wrote a study, “Parent-clinician communication intervention during end-of-life decision making children with incurable cancer. for ”
In that report published in MDLinx, Hinds evaluated parent-clinician communication designed to identify parents’ rationale for “do not resuscitate” (DNR) decisions and other end-of-life care decisions made on behalf of their child with incurable cancer. The parents characterized a “good parent” as someone who did right, provided support and presence, and sacrificed for the child. The “good parent” also desired similar support from clinicians, sought medical facts, and expressed gratitude for their care.
When faced with end-of-life care situations, parents make choices that may shift, depending on their children’s condition. “The same parents might have chosen differently at a different time point in their child’s treatment course,” Hinds reported. Parents’ role in decision-making and their understanding of the risks and benefits of treatment may evolve over time, and their expectations may change. This means that clinicians need to ask parents over the course of time and treatment to re-discuss their definition of being a good parent so that clinicians can remain current and sensitive to what is most important to the parents.
Despite substantial advances in treatment, about 20 percent of children with cancer in the U.S. die of their disease. Parental decision-making in the setting of incurable cancer, for instance, is not only complex, but poorly understood, Hinds writes.
How parents view their efforts–and whether they consider them successes–are influenced by interactions with clinicians. Tension between parents and clinicians related to end-of-life decision-making can emerge when differences exist about preferred care options, according to Hinds.
Clinicians’ reactions can “enhance or diminish a parent’s sense of competence at a time when there are few remaining opportunities to be a good parent,” Hinds writes.
“Clinicians’ reactions also influence parents’ level of trust at a time when trust is essential to meet the child’s and family’s needs,” Hinds says.
Contact: Emily Hartman or Joe Cantlupe at 202-476-4500.