Informed consent
Who really decides for very sick children: doctors or parents?
Open access · cc by · source: Europe PMC
Many paediatricians call their approach shared decision-making but actually steer grave decisions themselves, which the authors argue is justified to protect the child but not merely to shield parents.
Study at a glance
- Design
- Qualitative / archival — Phenomenological semi-structured interviews using clinical vignettes, thematic analysis, followed by ethical analysis
- N
- N=25 · 25 paediatricians interviewed out of 102 approached; no parents or children were interviewed
- Population
- Paediatricians in Victoria, Australia, caring for children with life-limiting conditions (neurodisability, cancer, cardiac disease)
- Outcome
- How paediatricians conceive their role in decisions, and whether physician-led decisions are ethically permissible
Structured fields used in claim comparison tables when every cited study has a complete layer.
Key findings
Doctors described four approaches along a spectrum: non-directed (family-led), joint, interpretative (inferring family values) and directed (the doctor decides). Most framed what they did as shared decision-making even when it was physician-led, and several described deliberately steering parents while presenting the choice as shared. Choice of approach depended on risk of harm to the child, perceived psychological harm to parents, parental preferences and resource limits. The authors argue that preventing harm to the child can justify physician-led decisions, but protecting parents from the burden of deciding without asking them is paternalism and needs great caution.
Methodology
The researchers interviewed 25 paediatricians who care for children with life-limiting conditions, using a clinical vignette matched to each doctor's specialty to prompt discussion. They coded the transcripts into themes and then used the themes to ask a normative question: when, if ever, is physician-led decision-making ethically acceptable for a child who cannot decide for themselves?
Limitations
The data are doctors' self-reports about a vignette, not observed conversations, and the interviewer was known to all participants, which may have pushed answers toward perceived best practice. Parents were not interviewed, so we do not know how they experience being guided or whether the impression of sharing helps or harms them. The sample is small and from one Australian state, and the ethical argument about harm thresholds is sketched rather than fully defended.
How this study connects
Role on claims
Each row is a claim on a concept or method page where this paper supports, challenges, or qualifies the statement. Roles are hand-checked — not a model guess.
'Shared' decision-making can be a label for decisions doctors actually direct.
In interviews using clinical vignettes, 25 Australian paediatricians caring for children with life-limiting conditions described four approaches from family-led to doctor-directed; most called what they did 'shared decision-making' even when it was physician-led, and some deliberately steered parents while presenting the choice as shared.
Evidence for the claim as stated.
'Shared' decision-making can be a label for decisions doctors actually direct.
In interviews using clinical vignettes, 25 Australian paediatricians caring for children with life-limiting conditions described four approaches from family-led to doctor-directed; most called what they did 'shared decision-making' even when it was physician-led, and some deliberately steered parents while presenting the choice as shared.
Scope note — Self-reports about vignettes, not observed conversations; parents were not interviewed.
Limits the claim's scope: a different population, assay, or outcome.
The paediatricians' study argues that preventing harm to the child can justify physician-led decisions, whereas the nudging paper warns against steering choices toward what experts think best. They concern different decision-makers (parents of a child vs. adults choosing screening), so this is a difference in scope, but both ask when guidance becomes manipulation.
Evidence for the claim as stated.
Open questions
Tensions this paper is part of
From concept pages' “where studies disagree.” Disagreement means the same question; scope means different assays, populations, or outcomes.
The paediatricians' study argues that preventing harm to the child can justify physician-led decisions, whereas the nudging paper warns against steering choices toward what experts think best. They concern different decision-makers (parents of a child vs. adults choosing screening), so this is a difference in scope, but both ask when guidance becomes manipulation.
- Supports · Should we nudge people into screening?
History
When this study was placed
Dated entries from the concept change log — when this paper was added or removed as support, challenge, or qualifier on a claim.
Placed as supporting evidence on Informed consent
In interviews using clinical vignettes, 25 Australian paediatricians caring for children with life-limiting conditions described four approaches from family-led to doctor-directed; most called what they did 'shared decision-making' even when it was physician-led, and some deliberately steered parents while presenting the choice as shared.
Placed as a scope qualifier on Informed consent
In interviews using clinical vignettes, 25 Australian paediatricians caring for children with life-limiting conditions described four approaches from family-led to doctor-directed; most called what they did 'shared decision-making' even when it was physician-led, and some deliberately steered parents while presenting the choice as shared.
Placed as supporting evidence on Informed consent
The paediatricians' study argues that preventing harm to the child can justify physician-led decisions, whereas the nudging paper warns against steering choices toward what experts think best. They concern different decision-makers (parents of a child vs. adults choosing screening), so this is a difference in scope, but both ask when guidance becomes manipulation.
Related papers in this topic
Same topic cluster — not a recommendation engine.