Abstract
Background
Consent and assent are important concepts to understand in the care of pediatric neurosurgery patients. Recently it has been recommended that although pediatric patients generally do not have the legal capacity to make medical decisions, they be encouraged to be involved in their own care. Given the paucity of information on this topic in the neurosurgery community, the objective is to provide pediatric neurosurgeons with recommendations on how to involve their patients in medical decision-making.
Methods
We review the essential elements and current guidelines of consent and assent for pediatric patients using illustrative neurosurgical case vignettes.
Results
The pediatric population ranges widely in cognitive and psychological development making the process of consent and assent quite complex. The role of the child or adolescent in medical decision-making, issues associated with obtaining assent or dissent, and informed refusal of treatment are considered.
Conclusion
The process of obtaining consent and assent represents a critical yet often overlooked aspect to care of pediatric neurosurgical patients. The pediatric neurosurgeon must be able to distill immensely complex and high-risk procedures into simple, understandable terms. Furthermore, they must recognize when the child’s dissent or refusal to treatment is acceptable. In general, allowing children to be involved in their neurosurgical care is empowering and gives them both identity and agency, which is the vital first step to a successful neurosurgical intervention.
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References
Miller G (2009) Pediatric bioethics. Cambridge University Press, Cambridge
Larcher V, Hutchinson A (2010) How should paediatricians assess Gillick competence? Arch Dis Child 95:307–311. doi:https://doi.org/10.1136/adc.2008.148676
De Lourdes Levy M, Larcher V, Kurz R, Ethics Working Group of the Confederation of European Specialists in Paediatrics (CESP) (2003) Informed consent/assent in children. Statement of the ethics working group of the Confederation of European Specialists in Paediatrics (CESP). Eur J Pediatr 162:629–633. doi:https://doi.org/10.1007/s00431-003-1193-z
Harrison C, Canadian Paediatric Society (CPS) Bioethics Committee (2004) Treatment decisions regarding infants, children and adolescents. Paediatr Child Health 9:99–114. https://doi.org/10.1093/pch/9.2.99
Michaud P-A, Berg-Kelly K, Macfarlane A, Benaroyo L (2010) Ethics and adolescent care: an international perspective. Curr Opin Pediatr 22:418–422. https://doi.org/10.1097/MOP.0b013e32833b53ec
Weithorn LA, Campbell SB (1982) The competency of children and adolescents to make informed treatment decisions. Child Dev 53:1589–1598
McCabe MA (1996) Involving children and adolescents in medical decision making: developmental and clinical considerations. J Pediatr Psychol 21:505–516. https://doi.org/10.1093/jpepsy/21.4.505
Justia (1987) Cardwell v. Bechtol https://lawjustiacom/cases/tennessee/supreme-court/1987/724-s-w-2d-739-2html Accessed 19 August 2020
Giedd JN, Blumenthal J, Jeffries NO, Castellanos FX, Liu H, Zijdenbos A, Paus T, Evans AC, Rapoport JL (1999) Brain development during childhood and adolescence: a longitudinal MRI study. Nat Neurosci 2:861–863. https://doi.org/10.1038/13158
Sowell ER, Thompson PM, Holmes CJ, Jernigan TL, Toga AW (1999) In vivo evidence for post-adolescent brain maturation in frontal and striatal regions. Nat Neurosci 2:859–861. https://doi.org/10.1038/13154
Sowell ER, Thompson PM, Tessner KD, Toga AW (2001) Mapping continued brain growth and gray matter density reduction in dorsal frontal cortex: inverse relationships during postadolescent brain maturation. J Neurosci 21:8819–8829
Giedd JN (2008) The teen brain: insights from neuroimaging. J Adolesc Health 42:335–343. https://doi.org/10.1016/j.jadohealth.2008.01.007
Dahl RE, Gunnar MR (2009) Heightened stress responsiveness and emotional reactivity during pubertal maturation: implications for psychopathology. Dev Psychopathol 21:1–6. https://doi.org/10.1017/S0954579409000017
Steinberg L (2010) A dual systems model of adolescent risk-taking. Dev Psychobiol 52:216–224. https://doi.org/10.1002/dev.20445
Bartholome WG (1995) Informed consent, parental permission, and assent in pediatric practice. Pediatrics 96:981–982
Denham EJ, Nelson RM (2002) Self-determination is not an appropriate model for understanding parental permission and child assent. Anesth Analg 94:1049–1051. https://doi.org/10.1097/00000539-200205000-00001
Kon AA (2006) Assent in pediatric research. Pediatrics 117:1806–1810. https://doi.org/10.1542/peds.2005-2926
Miller VA, Nelson RM (2006) A developmental approach to child assent for nontherapeutic research. J Pediatr 149:S25–S30. https://doi.org/10.1016/j.jpeds.2006.04.047
Wendler DS (2006) Assent in paediatric research: theoretical and practical considerations. J Med Ethics 32:229–234. https://doi.org/10.1136/jme.2004.011114
Unguru Y, Coppes MJ, Kamani N (2008) Rethinking pediatric assent: from requirement to ideal. Pediatr Clin N Am 55(xii):211–222. https://doi.org/10.1016/j.pcl.2007.10.016
Katz AL, Webb SA, Committee on Bioethics (2016) Informed consent in decision-making in pediatric practice. Pediatrics 138:e20161485. https://doi.org/10.1542/peds.2016-1485
Lee KJ, Havens PL, Sato TT, Hoffman GM, Leuthner SR (2006) Assent for treatment: clinician knowledge, attitudes, and practice. Pediatrics 118:723–730. https://doi.org/10.1542/peds.2005-2830
Waller BN (2001) Patient autonomy naturalized. Perspect Biol Med 44:584–593. https://doi.org/10.1353/pbm.2001.0076
Pousset G, Bilsen J, De Wilde J, Benoit Y, Verlooy J, Bomans A, Deliens L, Mortier F (2009) Attitudes of adolescent cancer survivors toward end-of-life decisions for minors. Pediatrics 124:e1142–e1148. https://doi.org/10.1542/peds.2009-0621
Code of Virginia § 63.2–100. (Effective untl July 1, 2021) Definitions. https://law.lis.virginia.gov/vacode/title63.2/chapter1/section63.2-100/ Accessed 19 August 19 2020
Mercurio MR (2007) An adolescent’s refusal of medical treatment: implications of the Abraham Cheerix case. Pediatrics 120:1357–1358. doi:https://doi.org/10.1542/peds.2007-1458
Talati ED, Lang CW, Ross LF (2010) Reactions of pediatricians to refusals of medical treatment for minors. J Adolesc Health 47:126–132. https://doi.org/10.1016/j.jadohealth.2010.03.004
Doig C, Burgess E (2000) Withholding life-sustaining treatment: are adolescents competent to make these decisions? Can Med Assoc J 162:1585–1588
Ross LF (2009) Against the tide: arguments against respecting a minor’s refusal of efficacious life-saving treatment. Camb Q Healthc Ethics 18:302–315. doi:https://doi.org/10.1017/S0963180109090471
Johnston C (2009) Overriding competent medical treatment refusal by adolescents: when “no” means “no.”. Arch Dis Child 94:487–491. https://doi.org/10.1136/adc.2008.149781
Alderson P (2007) Competent children? Minors’ consent to health care treatment and research. Soc Sci Med 65:2272–2283. https://doi.org/10.1016/j.socscimed.2007.08.005
Diekema DS (2011) Adolescent refusal of lifesaving treatment: are we asking the right questions? Adolesc Med State Art Rev 22(viii):213–228
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We thank Sharon Durfy, PhD, for assistance with manuscript preparation.
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Dr. Hauptman is a consultant for Medtronic. All other authors declare that they have no conflict of interest.
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Sen, R.D., Lee, A., Browd, S.R. et al. Issues of consent and assent in pediatric neurosurgery. Childs Nerv Syst 37, 33–37 (2021). https://doi.org/10.1007/s00381-020-04907-w
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DOI: https://doi.org/10.1007/s00381-020-04907-w