*This project was terminated due to issues relating to its study enrollment.
Parental end-of-life (EOL) decision making for children with cancer is often poorly informed. Many parents have overly optimistic beliefs about prognosis and, as a result, choose aggressive measures at the EOL, which are associated with greater suffering. Yet most parents wish to limit suffering, and, in retrospect, many regret choices for EOL cancer treatment. These findings suggest that many parents are not sufficiently informed to make decisions that reflect their preferences.
The proposed study will evaluate parental EOL decision making, addressing gaps in the literature in three important respects:
1. Previous work on EOL decision making for children with cancer has typically looked at decisions at one point in time, often asking parents to reflect on decisions after the child’s death, even though parents’ understanding of prognosis and decisions about care evolve over time. We will evaluate parental EOL decision making over time.
2. Existing work focuses on aggressive EOL care as the worst possible outcome. However, some parents wish to pursue aggressive measures even when they recognize that the child has no realistic chance for cure. We will evaluate the extent to which parental decision making is informed and consonant with preferences, regardless of whether decisions lead to aggressive or palliative care.
3. Previous studies have focused on groups of different childhood cancers, making it difficult to ascertain whether differences in decision making reflect differences in diseases, options for care, or parent preferences. We will focus on a single disease, relapsed neuroblastoma, as a model for EOL decision making. Children with relapsed neuroblastoma have incurable cancer but many options for care, including established cancer regimens, clinical trials, and palliation. Relapsed neuroblastoma presents an ideal model for parental decision making in the setting of a complex array of choices for children nearing the EOL.
We will follow 120 parents at eight institutions over time, beginning at relapse and continuing over 18 months. Parent interviews every three months and reviews of medical records throughout that time will be used to evaluate the ways that parental preferences for the aggressiveness of treatment change over time (Aim 1). Parental perception that care has been burdensome will be evaluated as a possible driver of change in EOL decision making (Aim 2). Ideally, parent values for care would be the primary driver of treatment goals. Thus, we will evaluate the extent to which parental understanding of prognosis, treatment options, and expected benefits and burdens of treatment can allow decision making consonant with parental preferences in the absence of prior negative experiences with care (Aim 3). Finally, in-depth parent interviews will allow us to evaluate personal factors that drive parental EOL decision making (Aim 4). Throughout the study, a parent advisory group will guide assessment of EOL care preferences and decision making.