Shared Decision-Making in Pediatric Allogeneic Blood and Marrow Transplantation: What If There Is No Decision to Make?
Bibliographic record
Abstract
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. CME This article is available for continuing medical education credit at 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.
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How this classification was reachedexpand
Full frame machine prediction
Teacher imitationNot calibrated prevalence, not ground truth. Human validation pending. The Gemma side is a direct model label for every work in the frame, read from the title-only record. The Codex side is a classifier learned from the 10,348 direct Codex labels and calibrated to design-weighted sample rates; fields without enough sample support carry no Codex call. Candidate is the union of the two sides; consensus is their intersection. These outputs are machine_predicted_unvalidated and are not human labels.
Distilled classifier scores by category (both heads)
| Category | Codex | Gemma |
|---|---|---|
| Metaresearch | 0.036 | 0.048 |
| Meta-epidemiology (narrow) | 0.000 | 0.000 |
| Meta-epidemiology (broad) | 0.001 | 0.001 |
| Bibliometrics | 0.001 | 0.001 |
| Science and technology studies | 0.008 | 0.017 |
| Scholarly communication | 0.005 | 0.006 |
| Open science | 0.002 | 0.005 |
| Research integrity | 0.002 | 0.004 |
| Insufficient payload (model declined to judge) | 0.002 | 0.000 |
Machine scores (provisional)
The two teacher heads of the student model, read on this work. A score orders the frame for review; it never asserts a category, and the validation status ships verbatim with every row.
Baseline scores from an immature model (maturity gate not passed, 7 training rounds). Scores rank; they never assert a category.
score_only:v0-immature-baseline · verbatim from the scoring run: score_only means the number may rank works, and no category label ships from itClassification
machine, unvalidatedMachine predicted; a candidate call from one source (direct Gemma or distilled Codex), not a consensus.
How this classification was reached, model by model and score by score, is at the end of the page under "How this classification was reached".