Shared Decision-Making in Pediatric Allogeneic Blood and Marrow Transplantation: What If There Is No Decision to Make?

Abstract

Learning Objectives: After completing this course, the reader will be able to: When the alternative to medical treatment is likely death, ask parents and children whether they agree to the medical plan rather than suggesting they are sharing in “a decision.” Use the model of shared decision in appropriate settings, that is, those in which a bona fide choice exists. This article is available for continuing medical education credit at http://CME.TheOncologist.com Introduction. Shared decision‐making between health care professionals, patients, parents, and guardians is widely recommended today. However, it is unclear what happens when collaborative language is used by physicians in clinical situations for which patients and parents/guardians believe there is no decision to be made. Methods. We conducted a qualitative study of decision‐making for pediatric allogeneic blood and marrow transplantation by interviewing patients, parents, grandparents, donor siblings, and nondonor children after the decision to proceed to transplant but before the transplantation. Each interview was audio recorded, transcribed, and coded for major themes. Results. In total, 107 members of 30 families at four sites were interviewed, including 15 patients, 22 mothers, 2 stepmothers, 1 grandmother, 19 fathers, 3 stepfathers, 1 grandfather, 13 sibling donors, and 31 nondonor children (siblings, half‐siblings, and cousins). In all, 81% of parents/guardians, 73% of patients, 31% of donors, and 29% of other children reported there was no decision to be made. Almost all (88%) parents/guardians indicated that the physician's recommendation was a large determinant in their agreement to go forward with the transplantation. All parents/guardians reported that “agreeing to a plan” was a better description of what their consent entailed. Conclusions. To be respectful of patients and parents/guardians, we suggest that “agreeing to a plan” may be a better description for what parents/guardians must consider when the alternative to a transplantation is likely death. In this clinical context, the shared decision‐making model with a focus on “a decision to be made” may be misleading.

Family Strategies to Support Siblings of Pediatric Hematopoietic Stem Cell Transplant Patients

“…The parent study focused on family decision-making in pediatric HSCT and included interviewing children undergoing HSCT and their family members (ie, parents, grandparents, siblings, half siblings, and cousins) at 4 time points over the course of a year. 33 Eligible families had a child undergoing HSCT with at least 1 sibling between the ages 9 and 22 years in the home. This report analyzed the second interview, which was conducted 5 to 9 months posttransplant, giving the families time to develop their own strategies.…”

“…33 We supplemented the secondary analysis with prospective interviews with family members of children, adolescents, and young adults (“children” henceforth is understood to include adolescents and young adults) undergoing HSCT and pediatric transplant health care providers. This study aims to provide an account of sibling issues during HSCT and the strategies families used to help them.…”

Unmet Needs of Siblings of Pediatric Stem Cell Transplant Recipients

“…Lack of choice, whether a concern or not, may imply the need for an advocate to help the family understand the medical options, but this information may be most effective coming from the treating physician. 20 From the donor perspective, "no choice" becomes concerning in the case of "forced no choice." 11 One 9-year-old donor did regret donation, but her expressed concerns were absence of her mother and believing that she was not the best HLA match, not lack of choice.…”

Measurement challenges in shared decision making: putting the ‘patient’ in patient‐reported measures

“…This is especially the case where procedures have become routinized in health care, such as a ‘diagnostic’ performed following the identification of a breast lump . Also, where patients see no acceptable alternative, they may implicitly assume that no decision‐making opportunity exists; when faced with a decision about paediatric allogeneic blood and marrow transplantation, 81% of parents reported that there was no decision to be made . In such examples, the use of the terms ‘decision’ or ‘option’ may not be appropriate because patients believe they are ‘agreeing to a plan’ rather than encountering a decision‐making point …”