Alderson, P

Mendizabal, R

Sutcliffe, K

English

UCL Discovery

IACR September 2021  Rhodes University South AfricaChildren's informed, signified and voluntary consent to heart surgery Priscilla Alderson, Rosa Mendizabal, Katy SutcliffeSocial Research Institute, University College London UK 1Heart surgeryHigh risk of mortality and morbidity, brain injury, strokecomplex  decisionsdistressing, painful, frighteningblood tests, >1 hour echocardiograms,  MRI scansmask or cannula for anaestheticintensive care unit, sore throat, painAlternative –mortality and morbidity riskslonging ‘to be like my friends’Many parents do not want their child to be informedCompetence? At what age can children begin to be informed, to give consent to surgery, and to refuse surgery?2Methods  November 2018 to May 2021 part timeFunding by British Heart Foundation (applied 2016→)November  2018 to October 2019 wait for RECs approvalLiterature reviewsOctober 2019 to February 2020Observe two London children’s heart surgery centresInterview staff and 16 families (plan 45 staff and 60 families of children aged 6 to 15 years) after non-urgent heart surgeryMarch 2020 to April 2021: Continue interviews by ‘phone, Online survey and group discussions with children and parentsWriting and resubmitting papers  Opposition from funders, peer reviewers, journal editors https://www.ucl.ac.uk/ioe/departments-and-centres/centres/social-science-research-unit/consent-and-shared-decision-making-healthcare/childrens-and-parents-consent-heart-surgery3The law on ages of consent?South Africa  The Children’s Act 2005Section 129Children aged 12 or more - Provided they have the maturity “to understand the benefits, risks, social and other implications of the treatment”...may consent to medical treatment on their own behalf...[and to surgery]  a sufficiently mature child may still consent, if he or she is “duly assisted by his or her parent or guardian”.  Children under 12 or over 12 but lacking the maturity to make an informed decision - A parent, guardian or care-giver of the child may consent on behalf of the child to medical treatment. 4English and Commonwealth case law 53 countries <2 billion people, Gillick case 1985US mature minorsNo lower age specifiedBut usually assumed to be >12 yearsReflected in law reports and ethics and health research  literature – most reported research on consent to children’s treatmentis about parents’ consenta few reports on young people’s consent children may make minor decisions– which arm to have the injection in 5Adult right to consent includes right to be informed, right not to be coerced or deceived Problems  discussed during interviews:Non-competent children do not have these rights Competent children may consent to treatment, but not refuse it so treatment can be enforcedchildren may be confused,  afraid, ‘terrified’,resistant and lose trust Those who need life-long cardiac care may not cooperateor become responsible for their healthcareStruggles over anaesthesiaNon-compliance with heart transplant follow up care645 interviewees: doctors, nurses, play specialists, psychologists, chaplains, social worker and experts in law and ethics  Children’s ages Begin to inform children Begin to respect children’s consentBegin to respect children’s refusal0-4 years 25 4 5 5-7 years 11 13 88-10 years 2 11 7 11-13 years 2 6 414-16 years 0 3 3No reply/Uncertain5 8 187Interviewer:   So what would you do about the operation if a 4-year-old very firmly resisted and struggled against the anaesthetic mask or cannula?Surgeon:         Cancel it.  (Followed by multidisciplinary team work)Several interviewees said that if, after weeks when every effort is made to  to inform and prepare them, children still refuse a heart transplant, “Of course, there's no point in doing it because they'll destroy it by not taking their medication...it [consent] is vital” (cardiologist).Participatory research: Co-authored papers with interviewees –five anaesthetists co-authored with us the paper on anaesthetists and children’s consent to heart surgery and their zero-coercion policy .Paper rejected.Why do the law and literature differ so much from hospital practice? 8Law and literature theories Informed consent – Law, Helsinki 1974/2013Voluntary consent – unpressured  – Nuremberg 1947Signified consent – legally valid person’s signatureOR Ontology of consent, actual practice Informed consent – inner understanding, weigh values, motives, risks,  Signified consent – actual active cooperation or resistanceVoluntary consent – free choice, willing consent, trust, hope, real emotions, motivations 9Ontology of consentInformed consent– Law, Helsinki 1974/2013Voluntary consent – feel unpressured  – Nuremberg 1947Signified consent – legally valid person’s signatureORInformed consent – understanding, weigh values, motives Voluntary consent – free power of choice, willing consent  Signified consent – active cooperation or resistance  Empir-icalActual Realxxxxxx10Epistemic fallacy do not inform children – as if the word for them is worse than the deedSemiotic triangle  remember the referent, the actual experience of surgery, scar and the reality consented toInternal conversations  children are meaning makers, unless adults explain their motives children risk assuming they are being punishedFour planes of social being  overcome mind/body, individual/social, adult/child splitsMELD  See children’s competence and consent as relational processesnot as fixed, static, atomised Social posisioning theory  children’s present and future interests, rights and obligations  11Critical Realism for Health and Illness Research"No doubt, students, researchers and others interested incritical realism and health will find the insightful discussion ofthis difficult, yet important, topic very useful." Ebenezer Durojaye, University of the Western CapeBy Priscilla Alderson25% PAPERBACK DISCOUNT CODE: POCRHI21Enter code POCRHI21 at checkout. Discount applies to paperback versions only and can only be used for individual purchases not bulk orders. Discount ends 26/09/2021"This is such an exciting offering for those, like me, who find critical realism intuitively and practically appealing, but also partly opaque and difficult.” Tom Shakespeare, London School of Hygiene and Tropical MedicineReferencesAlderson, P. (2013)Childhoods Real and Imagined: Volume 1: An Introduction to Childhood Studies and Critical Realism. Routledge.Alderson, P. (2016) The Politics of Childhoods Real and Imagined: Volume 1: Practical Application of Childhood Studies and Critical Realism. Routledge.Alderson P. (2021) Critical Realism for Health and Illness Research. Policy Press. Alderson, P., Sutcliffe, K. and Mendizabal, R. (2020) A critical realist analysis of consent to surgery for children, human nature and dialectic: the pulse of freedom Journal of Critical Realism, 19(2) . 10.1080/14767430.2020.1733922. Archer, M. (2000)Being Human. Cambridge: Cambridge University Press.Archer, M. (2003) Structure, Agency and the Internal Conversation. Cambridge: Cambridge University Press.Bhaskar, R. (1998 [1979]). The Possibility of Naturalism: A Philosophical Critique of the Contemporary Human Sciences. London: Routledge. (Chapters 1 and 2)Bhaskar, R. (2016). Enlightened Common Sense: The Philosophy of Critical Realism. Routledge. Hartwig, M. (Ed.). (2007). Dictionary of Critical Realism. Routledge.Porpora, D. (2015) Reconstructing Sociology. Cambridge University Press Details of research reports: https://www.ucl.ac.uk/ioe/departments-and-centres/centres/social-science-research-unit/consent-and-shared-decision-making-healthcare/childrens-and-parents-consent-heart-surgery13

Children's informed, signified and voluntary consent to heart surgery

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Children's informed, signified and voluntary consent to heart surgery

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