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Relational Capacity: Broadening the Notion of Decision-Making Capacity in Paediatric Healthcare

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Abstract

Problems arise when applying the current procedural conceptualization of decision-making capacity to paediatric healthcare: Its emphasis on content-neutrality and rational cognition as well as its implicit assumption that capacity is an ability that resides within a person jeopardizes children’s position in decision-making. The purpose of the paper is to challenge this dominant account of capacity and provide an alternative for how capacity should be understood in paediatric care. First, the influence of developmental psychologist Jean Piaget upon the notion of capacity is discussed, followed by an examination of Vygostky’s contextualist view on children’s development, which emphasizes social interactions and learning for decision-making capacity. In drawing parallels between autonomy and capacity, substantive approaches to relational autonomy are presented that underline the importance of the content of a decision. The authors then provide a relational reconceptualization of capacity that leads the focus away from the individual to include important social others such as parents and physicians. Within this new approach, the outcome of adults’ decision-making processes is accepted as a guiding factor for a good decision for the child. If the child makes a choice that is not approved by adults, the new conceptualization emphasizes mutual exchange and engagement by both parties.

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Notes

  1. The example of Leila is not a real case but a fictional one which enables us to highlight those aspects that are relevant for the development of our argument. It is however inspired by real life cases of children refusing treatment (see for example Mercurio 2007; Cornock 2010).

  2. In the United Kingdom, the concept of capacity carries legal connotations and competence clinical ones (Bielby 2013).

  3. This contextualized and social decision-making process is not unique to childhood but is also beneficial in adult care. We thank the anonymous reviewer for highlighting this important aspect.

References

  • Alderson, P. 1992. In the genes or in the stars? Children’s competence to consent. Journal of Medical Ethics 18(3): 119–124.

    Article  CAS  PubMed  PubMed Central  Google Scholar 

  • ———. 2003. Die autonomie des kindes: Über die selbstbestimmungsfähigkeit von kindern in der medizin [Children’s autonomy: On children’s capacity to make decisions in healthcare]. In Das kind als patient—Ethische konflikte zwischen kindeswohl und kindeswille [Children as patients: Ethical conflicts between the child’s welfare and the child’s wishes], ed. C. Wiesemann, A. Dörries, G. Wolfslast, and A. Simon, 28–47. Frankfurt/Main: Campus Verlag.

  • ———. 2007. Competent children? Minors’ consent to health care treatment and research. Social Science and Medicine 65(11): 2272–2283.

  • Alderson, P., and J. Montgomery. 1996. Health care choices: Making decisions with children, Vol. 2. Institute for Public Policy Research.

  • Alderson, P., K. Sutcliffe, and K. Curtis. 2006. Children’s competence to consent to medical treatment. Hastings Center Report 36(6): 25–34.

    Article  PubMed  Google Scholar 

  • Appelbaum, P.S. 2007. Assessment of patients’ competence to consent to treatment. New England Journal of Medicine 357(18): 1834–1840.

    Article  CAS  PubMed  Google Scholar 

  • Banner, N.F. 2013. Can procedural and substantive elements of decision-making be reconciled in assessments of mental capacity? International Journal of Law in Context 9(01): 71–86.

    Article  PubMed  PubMed Central  Google Scholar 

  • Beauchamp, T.L., and J.F. Childress. 2001. Principles of biomedical ethics. New York, NY: Oxford University Press.

    Google Scholar 

  • Bielby, N.F. 2013. Can procedural and substantive elements of decision-making be reconciled in assessments of mental capacity? International Journal of Law in Context 9(1): 71–86.

    Article  Google Scholar 

  • Buchanan, A.E., and D.W. Brock. 1989. Deciding for others: The ethics of surrogate decision making. Cambridge: Cambridge University Press.

    Google Scholar 

  • Brainerd, C.J. 1978. The stage question in cognitive-developmental theory. Behavioral and Brain Sciences 1(02): 173–182.

    Article  Google Scholar 

  • Bronfenbrenner, U. 1979. The ecology of human development: Experiments by nature and design. Cambridge, MA: Harvard University Press.

    Google Scholar 

  • Chaiklin, S. 2003. The zone of proximal development in Vygotsky’s analysis of learning and instruction. In Vygotsky’s educational theory in cultural context, ed. A. Kozulin, B. Gindis, V.S. Ageyev, and S.M. Miller. Cambridge: Cambridge University Press.

    Google Scholar 

  • Charland, L. 2011. Decision-making capacity. In Stanford Encyclopedia of Philosophy. http://seop.illc.uva.nl/entries/decision-capacity/. Accessed June 13, 2015.

  • ———. 1998. Appreciation and emotion: Theoretical reflections on the MacArthur treatment competence study. Kennedy Institute of Ethics Journal 8(4): 359–376.

  • Christman, J. 2003. Autonomy in moral and political philosophy. http://plato.stanford.edu/entries/autonomy-moral/. Accessed June 12, 2014.

  • ———. 2004. Relational autonomy, liberal individualism, and the social constitution of selves. Philosophical Studies 117(1): 143–164.

  • Cornock, M. 2010. Hannah Jones, consent and the child in action: A legal commentary. Paediatric Nursing 22(2): 14–20.

    Article  PubMed  Google Scholar 

  • Dittmann, V. 2008. Urteilsfähigkeit als Voraussetzung für Aufklärung und Einwilligung. Therapeutische Umschau 65(7): 367–370.

    Article  PubMed  Google Scholar 

  • Etchells, E., G. Sharpe, C. Elliott, and P.A. Singer. 1996. Bioethics for clinicians: 3. Capacity. Canadian Medical Association Journal 155(6): 657–661.

    CAS  PubMed  PubMed Central  Google Scholar 

  • Freeman, M. 2005. Rethinking Gillick. International Journal of Children’s Rights 13: 201–217.

    Article  Google Scholar 

  • Gabe, J., G. Olumide, and M. Bury. 2004. “It takes three to tango”: A framework for understanding patient partnership in paediatric clinics. Social Science & Medicine 59(5): 1071–1079.

    Article  Google Scholar 

  • Ganzini, L., L. Volicer, W.A. Nelson, E. Fox, and A.R. Derse. 2004. Ten myths about decision-making capacity. Journal of the American Medical Directors Association 5(4): 263–267.

    Article  PubMed  Google Scholar 

  • Gilligan, C. 1982. In a different voice: Harvard University Press.

  • Graham, A., and R. Fitzgerald. 2010. Children’s participation in research. Some possibilities and constraints in the current Australian research environment. Journal of Sociology 46(2): 133–147.

    Article  Google Scholar 

  • Grisso, T., and L. Vierling. 1978. Minors’ consent to treatment: A developmental perspective. Professional Psychology 9(3): 412–427.

    Article  PubMed  Google Scholar 

  • Held, V. 1993. Feminist morality: Transforming culture, society, and politics: University of Chicago Press.

  • ———. 2007. Feminism and moral theory. Bioethics: An introduction to the history, methods, and practice: 158.

  • Hickey, K. 2007. Minors’ rights in medical decision making. JONAS Healthcare Law, Ethics, and Regulation 9(3): 100–104.

    Article  Google Scholar 

  • Hinds, P.S., D. Drew, L.L. Oakes, et al. 2005. End-of-life care preferences of pediatric patients with cancer. Journal of Clinical Oncology 23(36): 9146–9154.

    Article  PubMed  Google Scholar 

  • Holaday, B., L. Lamontagne, and J. Marciel. 1994. Vygotsky’s zone of proximal development: Implications for nurse assistance of children's learning. Issues in Comprehensive Pediatric Nursing 17(1): 15–27.

    Article  CAS  PubMed  Google Scholar 

  • Inhelder, B., H. Sinclair, and M. Bovet. 1974. Learning and the development of cognition. Translated by S. Wedgwood. Cambridge, MA, US: Harvard University Press.

  • Larcher, V., and A. Hutchinson. 2010. How should paediatricians assess Gillick competence? Archives of Disease in Childhood 95(4): 307–311.

    PubMed  Google Scholar 

  • Lo, B. 1990. Assessing decision‐making capacity. Journal of Law, Medicine and Health Care 18(3): 193–201.

    CAS  PubMed  Google Scholar 

  • Mackenzie, C. 2008. Relational autonomy, normative authority and perfectionism. Journal of Social Philosophy 39(4): 512–533.

    Article  Google Scholar 

  • Mackenzie, C., and W. Rogers. 2013. Autonomy, vulnerability and capacity: A philosophical appraisal of the Mental Capacity Act. International Journal of Law in Context 9(01): 37–52.

    Article  Google Scholar 

  • Mackenzie, C., and N. Stoljar. 2000. Relational autonomy: Feminist perspectives on automony, agency, and the social self. New York: Oxford University Press.

    Google Scholar 

  • Marti, E. 1996. Mechanisms of internalisation and externalization of knowledge in Piaget’s and Vygotsky’s theories. In Piaget - Vygostky, The social genesis of thought, ed. A. Tryphon and J. Vonèche. East Sussex: Psychology Press.

    Google Scholar 

  • Melton, G.B. 1983. Children’s competence to consent. In Children’s competence to consent, ed. G.B. Melton, G.P. Koocher, and M.J. Saks, 1–18. United States: Springer.

    Chapter  Google Scholar 

  • Mercurio, M.R. 2007. An adolescent’s refusal of medical treatment: Implications of the Abraham Cheerix case. Pediatrics 120(6): 1357–1358.

    Article  PubMed  Google Scholar 

  • Miller, P.H. 1993. Theorien der entwicklungspsychologie [Theories in Developmental Psychology]. Heidelberg: Spektrum Akademischer Verlag.

    Google Scholar 

  • Miller, R. 2011. Vygotsky in perspective. New York: Cambridge University Press.

    Book  Google Scholar 

  • Morrison, K.L., J.K. Morrison, and S. Holdridge-Crane. 1979. The child’s right to give informed consent to psychiatric treatment. Journal of Clinical Child & Adolescent Psychology 8(1): 43–47.

    Article  Google Scholar 

  • Murray, F. 1983. Learning and development through social interaction and conflict: A challenge to social learning theory. Piaget and the foundations of knowledge: 231–247.

  • Peter, C. 2008. Die Einwilligung von minderjährigen in medizinische eingriffe [Minors‘ consent in medical interventions]. Schweizerische Ärztezeitung 89(36): 1539–1540.

    Google Scholar 

  • Peter, E., and J. Liaschenko. 2013. Moral distress reexamined: A feminist interpretation of nurses’ identities, relationships, and responsibilites. Journal of Bioethical Inquiry 10(3): 337–345.

    Article  PubMed  Google Scholar 

  • Piaget, J. 1972. Intellectual evolution from adolescence to adulthood. Human Development 15(1): 1–12.

    Article  Google Scholar 

  • Rogoff, B., C. Mosier, J. Mistry, and A. Göncü. 1993. Toddlers’ guided participation with their caregivers in cultural activity. In Contexts for learning: Sociocultural dynamics in children’s development, ed. E.A. Forman, N. Minick, and C.A. Stone, 175–179. New York: Oxford University Press.

    Google Scholar 

  • Ruhe, K.M., T. Wangmo, D.O. Badarau, B.S. Elger, and F. Niggli. 2014. Decision-making capacity of children and adolescents—Suggestions for advancing the concept’s implementation in pediatric healthcare. European Journal of Pediatrics 174(6): 1–8.

    Google Scholar 

  • Sametz, L. 1979. Children, law and child development: The child developmentalist’s role in the legal system. Juvenile and Family Court Journal 30(3): 49–67.

    Article  Google Scholar 

  • Siegel, L.S. 1993. Amazing new discovery: Piaget was wrong! Canadian Psychology/Psychologie Canadienne 34(3): 239–245.

    Article  Google Scholar 

  • Siegel, L.S., and B. Hodkin. 1982. The garden path to the understanding of cognitive development: Has Piaget led us into the poison ivy? In Jean Piaget: Consensus and controversy, ed. S. Modgil and C. Modgil, 239–245. London: Holt, Rinehart & Winston.

    Google Scholar 

  • Sjöstrand, M., S. Eriksson, N. Juth, and G. Helgesson. 2013. Paternalism in the name of autonomy. Journal of Medicine and Philosophy 38(6): 710–724.

    Article  PubMed  Google Scholar 

  • Stier, S. 1978. Children’s rights and society's duties. Journal of Social Issues 34(2): 46–58.

    Article  Google Scholar 

  • Stoljar, N. 2013. Feminist perspectives on autonomy. Stanford Encyclopedia of Philosophy. http://plato.stanford.edu/entries/feminism-autonomy/. Accessed December 6, 2014.

  • Tryphon, A., and J. Vonèche. 2013. Piaget Vygotsky: The social genesis of thought. New York: Psychology Press.

    Google Scholar 

  • Vygotsky, L.S. 1978a. Interaction between learning and development. In Readings on the development of children, ed. M. Gauvain and M. Cole, 34–41. New York: W. H. Freeman and Company.

    Google Scholar 

  • ———. 1978b. Internalization of higher psychological functions. In Mind in society: The development of higher psychological processes, ed. M. Cole, V. John-Steiner, S. Scribner, and E. Souberman, 52–57. Cambridge, Massachussets: Harvard University Press.

  • ———. 1986. Thought and language. Cambridge: The Massachusetts Institute of Technology.

  • Whitty-Rogers, J., M. Alex, C. MacDonald, D.P. Gallant, and W. Austin. 2009. Working with children in end-of-life decision making. Nursing Ethics 16(6): 743–758.

    Article  PubMed  Google Scholar 

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Ruhe, K.M., De Clercq, E., Wangmo, T. et al. Relational Capacity: Broadening the Notion of Decision-Making Capacity in Paediatric Healthcare. Bioethical Inquiry 13, 515–524 (2016). https://doi.org/10.1007/s11673-016-9735-z

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