title: 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.
abstract: OBJECTIVE
  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.
  
  
  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.
  
  
  CONCLUSIONS
  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.
authors.affiliation: Department of Oncology, St Jude Children's Research Hospital, Memphis, TN 38105, USA. scott.maurer@stjude.org
authors.forename: Scott H
authors.initials: SH
authors.lastname: Maurer
authors.forename: Pamela S
authors.initials: PS
authors.lastname: Hinds
authors.forename: Sheri L
authors.initials: SL
authors.lastname: Spunt
authors.forename: Wayne L
authors.initials: WL
authors.lastname: Furman
authors.forename: Javier R
authors.initials: JR
authors.lastname: Kane
authors.forename: Justin N
authors.initials: JN
authors.lastname: Baker
mesh_terms: D000328:Adult; D002648:Child; D017321:Clinical Trials, Phase I as Topic / Q000401:mortality; D003657:Decision Making; D005260:Female; D006801:Humans; D008297:Male; D009369:Neoplasms / Q000401:mortality / Q000523:psychology / Q000628:therapy*; D010287:Parent-Child Relations; D010290:Parents; D011788:Quality of Life; D016414:Resuscitation Orders / Q000523:psychology; D012944:Social Support; D013727:Terminal Care