Parental perspectives on goals of care discussions with the healthcare team for their child with cancer

Abstract

BackgroundParents of children with cancer are expected to make decisions about treatments that often have significant side effects and require a sophisticated understanding of the risks. Often these decisions are made without a clear understanding of their child's prognosis both because the prognosis is uncertain and communication about it may not be clear. The majority of parents of children with cancer had a need for more 'information about the child's illness' [1].End-of-life literature has demonstrated that discussions about goals and families' preferences wait to occur until death is imminent [2] and that 50% of pediatric oncologists had DNR discussions with families only after they were prompted to do so by the families [3]. Outside the end-of-life period, there is little information to guide providers in knowing when and who should have these goals of care discussions (GCD) with families and the most helpful way to present information.The objective of this study was to learn about parent's experiences having GCD with their child's providers, which clinicians had those discussions with them, and whether parents want more input into who participates in GCD, when those meetings occur and how information is shared with them. MethodsA convenience sample of 40 parents of children with cancer completed an online survey followed by interviews with 15 of those parents. All parents were recruited from either the Patient Family Advisory council's email list for parents of cancer patients at the University of Michigan or by direct recruitment via flyers distributed in clinical areas within the outpatient or inpatient setting. Parents were enrolled until 40 surveys were completed online. Response rate was 75%.Information was collected about frequency, timing and who was present at GCD and who initiated those discussions. Parents were asked how helpful it would be to have input into who discusses your child's care and prognosis, when family meetings occurred and how information was delivered when explaining prognosis. Response options included 'not at all', 'a little bit', 'somewhat', 'pretty much' and 'extremely', and descriptive statistics were reported for responses 'pretty much' and 'extremely.' The interviews allowed more in-depth explanation of open-ended questions from the survey. GCD were described to include 'conversations where you or your family discussed any of the following things with the medical team: possible long-term health and outcomes for your child; the consequences of different choices for care; your hopes, fears and expectations for the future or your worries that things are not going well. ' Descriptive statistics were used to analyze multiple choice survey questions. A grounded theory approach was used to identify themes that could be consistently applied using NVivo Version 9.0 [4]. All interviews were then coded by two team members, and differences in coding between coders were reconciled through discussion and consensus [4][5][6]. This study was approved by the University of Michigan Instit...

Parent moral distress in serious pediatric illness: A dimensional analysis

“…Other research has demonstrated family desire for emotional support 9,74 and the important role of child-family-provider communication. 75,76 Conversely, parents also described how lapses in optimal communication damage relationships and may perpetuate parental distress. Such lapses may be important antecedents to family moral distress.…”

“…Other research has demonstrated family desire for emotional support 9,74 and the important role of child–family–provider communication. 75,76…”

Multilevel barriers and facilitators of communication in pediatric oncology: A systematic review

“…Several studies also identified characteristics of the clinician–family interaction that might facilitate or impede communication: impact of culture and cultural differences between clinicians and families, 33,50–52,67,108,111 presence of additional people during sensitive conversations, 41,52 hierarchy or power differential between clinicians and parents, 35,43,75,112,113 and contentious relationships and confrontational advocacy 96,103 . One study described clinicians feeling split loyalties to parents and children 40 …”

Goals of Care Among Parents of Children Receiving Palliative Care

“…At each assessment, parents completed a discrete choice experiment consisting of 5 predetermined spec ific GOCs that were selected based on a literature review and the study team's prior work (eMethods 1 in Supplement 1). 9,16,[25][26][27][28][29][30] GOCs were stated concisely in terms used commonly in clinical practice: seeking QOL, seeking health, seeking comfort, seeking disease reduction, and seeking longer life. These GOCs were presented to parents 2 goals at a time and parents were asked to pick the more important goal to them (eFigure 2 in Supplement 1).…”

“…5 Although clinicians often wait to initiate a GOCs discussion until the patient has experienced a medical crisis or is near the end of life, 6,7 general expert consensus holds that GOCs discussions should start early in the treatment of the illness with rediscussions over time. 5,8,9 Despite this broad consensus regarding the importance of GOCs, many key aspects of how patients, parents, or other surrogate decision makers prioritize different potential GOCs and how these priorities change over time are unknown. Most of what we do know is based on qualitative analysis of 1-time interviews of parents of children or clinicians who care for children or adults receiving palliative care 3,[10][11][12][13] and medical record reviews, 6,14 with a few exceptions of longitudinal interviews, 15 surveys, 16 and quantitative assessment of video recordings of clinician-patient interactions while discussing GOCs.…”