The involvement and autonomy of young children undergoing elective paediatric cardiac surgery: a qualitative study

Abstract

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.

Children's ages of consent to non‐urgent heart surgery: The views of two paediatric cardiology teams

“…They had learned from former patients that it was vital to sustain mutual trust and respect. Their comments affirmed our findings on how consent involves practical and emotional cooperation to avoid active refusal and resistance (Alderson, Bellsham-Revell, Brierley, Dedieu, et al, 2022;Alderson, Cohen, Davies, Elliott, et al, 2022).…”

“…This paper is part of a series that has reviewed the background ethics and law on children's consent (Alderson, Bowman, Brierley, Dedieu, et al, 2022; Alderson, Bowman, Brierley, Elliott, et al, 2022), how consent involves feeling and acting as well as thinking and talking (Alderson, Bellsham‐Revell, Brierley, Dedieu, et al, 2022), practitioners' responses to children's consent (Alderson, Cohen, Davies, Elliott, et al, 2022) and moral relationships during the consent process (Alderson, Bellsham‐Revell, Dedieu, King, et al, 2022).…”

Experiences of Parental Presence in the Induction of Anesthesia in a Canadian Tertiary Pediatric Hospital: A Cross-Sectional Study

“…Clinicians and administrators may need to consider the unintended consequences arising from the policy that "mandates" PPIA and may not offer the appropriate preparation and support for PPIA. In addition, some parents or children may have no desire for PPIA as their child may be coping well or exercising their autonomy in medical-decision making with the parent's support [25][26][27][28].…”