The Pediatric Patient as a Self-Individual and Decision-Maker

  • Rosa Angelina PaceEmail author
  • Susana Ciruzzi
  • Alberto R. Ferreres


The novelty of the pediatric patient as an active participant in the medical decision-making comes from the fact of considering him or her as a subject of rights and as an active citizen. This ethical and legal change regarding children’s rights is recent in the history of surgical ethics. The 1995 statement by the American Academy of Pediatrics highlighted the experience, perspective, and power of children (American Academy of Pediatrics. Committee on Bioethics. Pediatrics 95:314–317, 1995) and, in 2016, recommended the participation in decision-making commensurate with their development providing assent to care whenever possible (Katz, Webb, AAP Committee on Bioethics. Pediatrics. 38:e20161485, 2016).

Besides these new paradigms, new studies on the decision-making process show that before the legal age of majority (in most countries at 18 years), the minor may be ready to make decisions in the same way as an adult; these decisions must be respected and taken seriously since the minor needs to be recognized with an active role in the surgeon-patient relationship.

A new concept has been developed in the health-care scenario: the mature minor. This is especially important in situations of surgical disease and issues related to his/her body and health in general, where the minor should hold a major role as a decision-maker in the process of what is going to be done about him or her. The dynamic medical decision ecosystem shows a multilateral process that is shared and discussed, where three major and relevant actors coexist and participate: the health team, the pediatric patient, and the parents. This new conception of the minor as a subject of rights means that he or she must be offered participation in a progressive way and according to the developed competence to make decisions.


Minor Decision-making process Informed consent-best interest 


  1. 1.
    Nitta K. Decision making. Encyclopedia Britannica. Available in Accessed January 12, 2018.
  2. 2.
    Grootens-Wiegers P, Hein IM, van den Broek JM, et al. Medical decision-making in children and adolescents: developmental and neuroscientific aspects. BMD Pediatr. 2017;17:120–30.CrossRefGoogle Scholar
  3. 3.
    Kaplan RM, Frosch DL. Decision making in medicine and health care. Ann Rev Clin Psychol. 2005;1:525–56.CrossRefGoogle Scholar
  4. 4.
    Barry MJ, Edgman-Levitan S. Shared decision making: the pinnacle of patient-centered care. N Engl J Med. 2012;366:780–1.CrossRefGoogle Scholar
  5. 5.
    Friedman Ross L. Health care decisionmaking by children. Is it in their best interest? Hast Cent Rep. 1997;27:41–5.CrossRefGoogle Scholar
  6. 6.
    Starfield B, Bergner M, Ensminger M, et al. Adolescent health status measurement: development of the Child Health and Illness Profile. Pediatrics. 1993;91:430–5.PubMedGoogle Scholar
  7. 7.
    National Scientific Council on the Developing Child. Young children develop in an environment of relationships. Working paper no. 1. Http:// Accessed 2 Feb 2018.
  8. 8.
    McCormick R. Les soins intensifs aux nouveau-nés handicapés. Etudes. 1982;49:493–502.Google Scholar
  9. 9.
    Eiser C. Children’s quality of life measures. Arch Dis Child. 1997;77:350–4.CrossRefGoogle Scholar
  10. 10.
    Thompson HL, Reville MC, Price A, et al. The quality of life scale for children (QoL-C). J Child Serv. 2014;9:4–17.CrossRefGoogle Scholar
  11. 11.
  12. 12.
    Arnold R. Human dignity and minority protection. Some reflections on a theory of minority rights. In: Elósegui M, Hermida C, editors. Racial justice, policies and courts’ legal reasoning in Europe. Ius Gentium: Comparative Perspectives on Law and Justice, vol. 60. Cham: Springer; 2017. p. 3–14.CrossRefGoogle Scholar
  13. 13.
    Cicero. On invention (translation Hubbell HM). Loeb Classical Library 386. Cambridge: Harvard University Press; 1949.Google Scholar
  14. 14.
    Kant I. Groundwork for the metaphysics of morals (Wood AW, editor and translator). New Haven: Yale University Press; 2002.Google Scholar
  15. 15.
    Sulmasy DP. The varieties of human dignity: a logical and conceptual analysis. Med Heatlh Care Philos. 2013;16(4):937–44.CrossRefGoogle Scholar
  16. 16.
    McCabe MA. Involving children and adolescents in medical decision making: developmental and clinical considerations. J Ped Psychol. 1996;21:505–16.CrossRefGoogle Scholar
  17. 17.
    Buchanan A. Mental capacity, legal competence and consent to treatment. J R Soc Med. 2004;97:415–20.CrossRefGoogle Scholar
  18. 18.
    Baumgarten E. The concept of competence in medical ethics. J Med Ethics. 1980;6:180–4.CrossRefGoogle Scholar
  19. 19.
    Duncan RE, Sawyer SM. Respecting adolescents’ autonomy as long as they may the right choice. J Adolesce Health. 2010;47:113–4.CrossRefGoogle Scholar
  20. 20.
    McDougall RJ, Notini L. Overriding parents’ medical decisions for their children: a systematic review of normative literature. J Med Ethics. 2014;40:448–52.CrossRefGoogle Scholar
  21. 21.
    Friedman Ross L. Theory and practice of pediatric bioethics. Perspect Biol Med. 2015;58:267–80.CrossRefGoogle Scholar
  22. 22.
    Griffith R. What is Gillick competence? Hum Vaccin Immunother. 2016;12:244–7.CrossRefGoogle Scholar
  23. 23.
    Kennedy I, Grubb A. Principles of medical law. Oxford: OUP; 1998.Google Scholar
  24. 24.
    Gracia D, Jarabo Y, Martín N et al. Toma de decisiones en el paciente menor de edad. En: Gracia D, Júdez J (Ed.). Ética en la práctica clínica. Fundación Ciencia de la Salud. Madrid, 2004 (pp 127–160).Google Scholar

Suggested Literature

  1. American Academy of Pediatrics. Committee on Bioethics. Informed consent, parental permission and assent in pediatric practice. Pediatrics. 1995;95:314–7.Google Scholar
  2. Katz AL, Webb SA, AAP Committee on Bioethics. Informed consent in decision-making in pediatric practice. Pediatrics. 2016;138:e20161485.CrossRefGoogle Scholar

Copyright information

© Springer Nature Switzerland AG 2019

Authors and Affiliations

  • Rosa Angelina Pace
    • 1
    Email author
  • Susana Ciruzzi
    • 2
  • Alberto R. Ferreres
    • 3
    • 4
  1. 1.Ethics Committee Italian HospitalBuenos AiresArgentina
  2. 2.Ethics Committee “Prof Juan P Garrahan” Hospital and “Dr Alfredo Lanari” Institute, University of Buenos AiresBuenos AiresArgentina
  3. 3.Department of SurgeryUniversity of Buenos AiresBuenos AiresArgentina
  4. 4.Department of SurgeryUniversity of WashingtonSeattleUSA

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