Decision Making by Parents of Children With Incurable Cancer Who Opt for Enrollment on a Phase I Trial Compared With Choosing a Do Not Resuscitate/Terminal Care Option

Author:

Maurer Scott H.1,Hinds Pamela S.1,Spunt Sheri L.1,Furman Wayne L.1,Kane Javier R.1,Baker Justin N.1

Affiliation:

1. From St Jude Children's Research Hospital; University of Tennessee Health Sciences Center, Memphis, TN; Children's National Medical Center; and George Washington University, Washington, DC.

Abstract

Purpose Parents of children with incurable cancer make complex and difficult decisions about remaining treatment options. We compared the self-reported rationale, good parent definition, and desired clinical staff behaviors of parents who recently decided for phase I (P1) chemotherapy with parents who chose a do not resuscitate (DNR) or terminal care (TC) option. Patients and Methods Sixty-two parents of 58 children were asked for the basis of their decision, their definition of a good parent, and what staff behaviors supported their good parent role. After semantic content analysis, results were compared in the P1 versus DNR/TC groups. These categories were mutually exclusive but did not necessarily represent an either/or decision. Results Thirty-one decisions were for P1 chemotherapy and 27 for DNR/TC. Median survival time after study enrollment was greater in the P1 group (0.4 v 0.1 years). Most P1 group parents reported having felt compelled to continue cancer-directed therapy (71% v 7%), whereas those who opted for DNR/TC cited quality of life (QOL; 74% v 3%) and patient wishes (67% v 13%). Decision factors common to both groups were medical facts, doing right, and others’ opinions. Both groups believed that a good parent did right, provided support and presence, and sacrificed for the child. The groups desired similar support from clinicians and expressed gratitude. Conclusion Despite similar definitions of a good parent and desired staff behaviors, parents in the P1 group reported having felt compelled to continue cancer-directed therapy, whereas QOL and patient wishes were emphasized in decisions for DNR/TC.

Publisher

American Society of Clinical Oncology (ASCO)

Subject

Cancer Research,Oncology

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