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

A B S T R A C T PurposeParents 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 MethodsSixty-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. ResultsThirty-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. ConclusionDespite 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.

Chemotherapy versus supportive care alone in pediatric palliative care for cancer: comparing the preferences of parents and health care professionals

“…6,[11][12][13][14][15] For both parents and health care professionals, desirability scores were highly influenced by the opinions of the physician/parent and child. These results are congruent with a report that described the two highest-scoring factors that parents consider when caring for children with cancer as "recommendations received from health care professionals" and "things my child said about continuing or not continuing treatment."…”

Parents' Thoughts and Perceptions on Hearing that Their Child Has Incurable Cancer

“…5 Research has yet to fully clarify the complex nature of parental decision making pertaining to incurable cancer. 11,15 Descriptions of parents' thoughts and perceptions regarding their child's condition, in particular, is a topic that has not been covered in detail. 10,11,15 Parental decision making about end-of-life care is associated not only with the QOL of the child, but also with the grief and depression that parents go through after the child's death.…”

“…11,15 Descriptions of parents' thoughts and perceptions regarding their child's condition, in particular, is a topic that has not been covered in detail. 10,11,15 Parental decision making about end-of-life care is associated not only with the QOL of the child, but also with the grief and depression that parents go through after the child's death. [16][17][18] It is important for health care professionals to support parents, help them come to terms with their child's condition, and aid in making end-of-life decisions; this is important so that parents can still have a sense of parenthood after the child's death.…”

“…4,5 Some studies suggest that parents' decisions regarding end-of-life care for their child are related to the child's wishes and quality of life (QOL), the parents' values, parental expectations of cure, and professional information and recommendations. 4,[6][7][8][9] Hinds and collegues 10,11 reported that the core premise of parental decision making pertaining to incurable cancer is ''being a good parent.'' Further, it is also important for parents to properly understand their child's condition when they opt to care for their child at home at the end of the child's life.…”

“…Further, it is also important for parents to properly understand their child's condition when they opt to care for their child at home at the end of the child's life. [2][3][4][5][6][7][8][9][10][11][12][13][14] Yet another study highlighted that even though health care professionals are aware of the incurable nature of the child's cancer, parents do not recognize this eventuality. 2 They have difficulty accepting their child's impending death.…”