Decision making by parents and healthcare professionals when considering continued care for pediatric patients with cancer

Abstract

Purpose/objectives: To better define the treatment-related decisions considered most difficult by parents of pediatric patients with cancer and the factors that influenced their final decisions.

Design: Retrospective-descriptive design.

Setting: Pediatric oncology institution in the mid-southern region on the United States.

Sample: 39 parents representing 37 of 83 eligible families, 16 attending physicians, three nurses, and two chaplains.

Methods: Parent participants responded by telephone to six open-ended interview questions and a 15-item questionnaire about factors that were important when making the decision to continue care. Healthcare professionals were interviewed face-to-face.

Main research variables: Most difficult treatment-related decisions; factors influencing decision making.

Findings: Parents reported 15 types of difficult decisions, the majority of which were made late in the course of treatment. Deciding between a phase I drug study or no further treatment (n = 14), maintaining or withdrawing life support (n = 11), and giving more chemotherapy or giving no further treatment (n = 8) were the most frequently reported difficult decisions. Parents rated "recommendations received from healthcare professionals" as the questionnaire factor most important in their decision making, and healthcare professionals rated "discussion with the family of the patient" as the most important factor.

Conclusion: Parents of children or adolescents with cancer and their healthcare providers face difficult treatment-related decisions, many of which occur late in the course of treatment. Parents and healthcare professionals cite similar factors in their decision making but differ in their ratings of the factors' importance. For parents, the information and recommendations they receive from healthcare professionals figure most frequently and most importantly in their decision making. For healthcare professionals, the certainty that the patient will not get better and discussions with the patient's family figure most importantly in their decision making. Once parents conclude that their child can not get better, they are more likely to choose noncurative options such as choosing no further treatment or withdrawing life support.

Implications for nursing practice: Nurses can help determine what information parents need in their decision making. Particular attention must be given to ways to communicate the likelihood of the their child's survival.