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The involvement and autonomy of young children undergoing elective paediatric cardiac surgery: a qualitative study
Priscilla Alderson1, Marc Cohen2, Ben Davies3
1Social Research Institute, University College London, 18 Woburn Square, London, WC1H 0NR, UK. p.alderson@ucl.ac.uk.
Insights
Pediatric heart surgery practice varies regarding informed consent. While literature suggests minors need older age for consent, actual practice involves informing and respecting younger children
Area of Science:
- Pediatric Cardiology
- Medical Ethics
- Surgical Consent
Background:
- Literature on pediatric heart surgery consent often differs from clinical practice.
- Existing standards may not adequately address informing or respecting consent/refusal from young children.
Purpose of the Study:
- To review literature on pediatric anesthesia and informed consent for heart surgery.
- To compare literature themes with actual health professional practices in counseling children.
- To investigate how patient-centered care is maintained regarding children's consent.
Main Methods:
- Qualitative research including literature reviews and observations in pediatric cardiology departments.
- Semi-structured interviews with 45 hospital staff (including anesthesiologists) and experts.
- Analysis of research on professional contributions to children's surgical decisions.
Main Results:
- Literature often assumes minors cannot refuse treatment or consent before age 12.
- Some anesthesiologists use sedation/distraction for resistant children, avoiding extensive discussion.
- Practitioners reported informing young children and respecting their consent/refusal, with age 6 cited for heart transplant consent.
Conclusions:
- Divergent views on child competence, anxiety, and best interests influence responses to consent/refusal.
- A 'zero-restraint' policy has been practiced in leading centers.
- Legal and literature frameworks require updating to reflect current practices in pediatric surgical consent.
Background:
Standards generally reported in the literature about informing children and respecting their consent or refusal before elective heart surgery may differ from actual practice. This research aims to summarize the main themes in the literature about paediatric anaesthesia and compare these with research findings on how health professionals counsel young children before elective heart surgery, respect their consent or refusal, and maintain patient-centred care.
Methods:
This qualitative research involved: literature reviews about children's consent to surgery and major interventions; observations of wards, clinics and medical meetings in two paediatric cardiology departments, October 2019 to February 2020; audio-recorded semi-structured interviews with 45 hospital staff, including 5 anaesthetists, and related experts, November 2019 to April 2021; interviews with 16 families, with children aged 6- to 15-years and their parents shortly after elective heart surgery, and some months later (reported in other papers); thematic data analysis; and research reports on how different professions contribute to children's informed decisions for heart surgery.
Results:
The medical, ethics and English legal literature tend to assume legal minors cannot refuse major recommended treatment, and cannot consent until they are 12 years or older. Little is said about informing pre-competent children. If children resist, some anaesthetists rely on sedation and distraction, and avoid much informed discussion, aiming to reduce peri-operative anxiety. However, interviewees reported informing young children, and respecting their consent or refusal before elective surgery. They may delay elective surgery and provide further information and support, aiming to reduce fear and promote trust. Six years of age was commonly cited as the threshold for respecting consent to heart transplantation.
Conclusion:
Differing views about younger children's competence, anxiety and best interests support different reactions to children's consent and refusal before elective heart surgery. This paper reports the zero-restraint policy followed for over a decade in at least one leading surgery centre. The related law and literature need to be updated, to take more account of evidence of actual practice.
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