Shared decision-making in pediatric allogeneic blood and marrow transplantation: what if there is no decision to...

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.

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.

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.

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.