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European Journal of Pediatrics

, Volume 174, Issue 6, pp 775–782 | Cite as

Decision-making capacity of children and adolescents—suggestions for advancing the concept’s implementation in pediatric healthcare

  • Katharina M. RuheEmail author
  • Tenzin Wangmo
  • Domnita O. Badarau
  • Bernice S. Elger
  • Felix Niggli
Original Article

Abstract

Within the frameworks of shared decision-making and participation in healthcare, children’s ability to understand and appreciate information pertaining to illness and treatment is important. Physicians are mainly responsible for assessing decision-making capacity (DMC) but may encounter difficulties arising from the limited basis of evidence with regard to this concept in pediatrics. Three issues contributing to this paucity of knowledge on DMC of children can be identified: (1) conceptual blurriness and absence of clear terminology, (2) lack of validated tools to reliably assess DMC in the pediatric population, and (3) a need to include a developmental framework to understand DMC in children and adolescents. The aim of this paper is to examine these three issues and provide practical recommendations to advance the concept and its assessment in pediatrics as a step to ensuring children’s developmentally appropriate participation in healthcare. Finally, the paper highlights the ethical dimension of assessing DMC emphasizing the importance of physicians’ attitudes for the assessment process.

Conclusion: A detailed understanding of DMC is necessary to inform developmentally appropriate participation. In order to achieve this, pediatric practice needs to address challenges that are specific to providing healthcare for children, including conceptual issues, assessment, and aspects of child development.

Keywords

Decision-making capacity Children Pediatrics 

Abbreviations

DMC

Decision-making capacity

UK

United Kingdom

US

United States

Notes

Funding

The authors acknowledge the financial support provided by the Swiss National Science Foundation (SNF), National Research Programme 67 “End of Life,” Grant-No. 406740_139283/1, the Botnar Grant of the University of Basel, and the HEMMI-Stiftung, Basel.

Conflict of interest

The authors declare that they have no conflict of interest.

Reference

  1. 1.
    Alderson P (1992) In the genes or in the stars? Children's competence to consent. J Med Ethics 18:119–124CrossRefPubMedCentralPubMedGoogle Scholar
  2. 2.
    Alderson P (1993) Children's consent to surgery. Open University Press, BuckinghamGoogle Scholar
  3. 3.
    Alderson P (2003) Die Autonomie des Kindes: über die Selbstbestimmungsfähigkeit von Kindern in der Medizin. In: Wiesemann C, Dörries A, Wolfslast G, Simon A (eds) Das Kind als Patient-Ethische Konflikte zwischen Kindeswohl und Kindeswille. Campus Verlag, Frankfurt/Main, pp 28–47Google Scholar
  4. 4.
    Alderson P (2007) Competent children? Minors’ consent to health care treatment and research. Soc Sci Med 65:2272–2283CrossRefPubMedGoogle Scholar
  5. 5.
    Alderson P, Sutcliffe K, Curtis K (2006) Children as partners with adults in their medical care. Arch Dis Child 91:300–303CrossRefPubMedCentralPubMedGoogle Scholar
  6. 6.
    American Academy of Pediatrics Committee on Bioethics (1995) Informed consent, parental permission, and assent in pediatric practice. Pediatr 95:314–317Google Scholar
  7. 7.
    Appelbaum PS (2007) Assessment of patients' competence to consent to treatment. New Engl J Med 357:1834–1840CrossRefPubMedGoogle Scholar
  8. 8.
    Appelbaum PS, Grisso T (1995) The MacArthur treatment competence study. I: mental illness and competence to consent to treatment. Law Hum Behav 19:105CrossRefPubMedGoogle Scholar
  9. 9.
    Baines P (2011) Assent for children's participation in research is incoherent and wrong. Arch Dis Child 96:960–962CrossRefPubMedCentralPubMedGoogle Scholar
  10. 10.
    Bartholome WG (1995) Informed consent, parental permission, and assent in pediatric practice. Pediatrics 96:981–982PubMedGoogle Scholar
  11. 11.
    Beauchamp TL, Childress JF (2001) Principles of biomedical ethics. Oxford University Press, New YorkGoogle Scholar
  12. 12.
    Berg J (1996) Constructing competence: formulating standards of legal competence to make medical decisions. Rutgers L Rev 48:351–395Google Scholar
  13. 13.
    Bielby P (2005) The conflation of competence and capacity in English medical law: a philosophical critique. Med Healthc Philos 8:357–369CrossRefGoogle Scholar
  14. 14.
    British Medical Association (2000) Involving children and assessing a child's competence. In: British Medical Association (ed) Consent, rights and choices in health care for children and young people. BMJ Books, London, pp pp 92–pp 103Google Scholar
  15. 15.
    Brook G (2000) Children’s competency to consent: a framework for practice. Paediatr Nurs 12:31–35CrossRefGoogle Scholar
  16. 16.
    Büchner P (2003) Kinder und Kindheit in der Erwachsenengesellschaft - ein Blick auf die Stellung des Kindes aus kindheitssoziologischer Sicht. In: Wiesemann C, Dörries A, Wolfslast G, Simon A (eds) Das Kind als Patient-Ethische Konflikte zwischen Kindeswohl und Kindeswille. Campus Verlag, Frankfurt/New York, pp 11–27Google Scholar
  17. 17.
    Coyne I (2008) Children's participation in consultations and decision-making at health service level: a review of the literature. Intern J Nurs Stud 45:1682CrossRefGoogle Scholar
  18. 18.
    Coyne I, Harder M (2011) Children’s participation in decision-making balancing protection with shared decision-making using a situational perspective. J Child Health Care 15:312–319CrossRefPubMedGoogle Scholar
  19. 19.
    Coyne I, O'Mathúna DP, Gibson F, Shields L, Sheaf G (2013) Interventions for promoting participation in shared decision making for children with cancer. Cochrane Database of Systematic ReviewsGoogle Scholar
  20. 20.
    Deatrick J, Dickey S, Wright R, Beidler S, Cameron M, Shimizu H, Mason K (2003) Correlates of children's competence to make healthcare decisions. J Clin Ethic 14:152–163Google Scholar
  21. 21.
    Deutsch E, Spickhoff AM (2003) Arztrecht, Arzneimittelrecht, Medizinprodukterecht und Transfusionsrecht, 5th edn. Springer, BerlinGoogle Scholar
  22. 22.
    Didcock EA (2007) Issues of consent and competency in children and young people. Paediatr Child Health 17:425–428CrossRefGoogle Scholar
  23. 23.
    Dunn L, Nowrangi M, Palmer B, Jeste D, Saks E (2006) Assessing decisional capacity for clinical research or treatment: a review of instruments. Am J Psychiatry 163:1323–1334CrossRefPubMedGoogle Scholar
  24. 24.
    Etchells E, Darzins P, Silberfeld M, Singer PA, McKenny J, Naglie G, Katz M, Guyatt GH, Molloy DW, Strang D (1999) Assessment of patient capacity to consent to treatment. J Gen Intern Med 14:27–34CrossRefPubMedCentralPubMedGoogle Scholar
  25. 25.
    Etchells E, Sharpe G, Elliott C, Singer PA (1996) Bioethics for clinicians: 3. Capacity. Can Med Assoc J 155:657–661Google Scholar
  26. 26.
    Fitten LJ, Lusky R, Hamann C (1990) Assessing treatment decision-making capacity in elderly nursing home residents. J Am Geriatr Soc 38:1097–1104CrossRefPubMedGoogle Scholar
  27. 27.
    Freeman M (2005) Rethinking Gillick. Int'l J Child Rts 13:201–217CrossRefGoogle Scholar
  28. 28.
    Gabe J, Olumide G, Bury M (2004) 'It takes three to tango': a framework for understanding patient partnership in paediatric clinics. Soc Sci Med 59:1071CrossRefPubMedGoogle Scholar
  29. 29.
    UN General Assembly (1989) Convention on the rights of the child. Available via http://www.refworld.org/docid/3ae6b38f0.html. Accessed 07 May 2014
  30. 30.
    Grisso T, Appelbaum PS (1995) The MacArthur treatment competence study. III: abilities of patients to consent to psychiatric and medical treatments. Law Hum Behav 19:149–174CrossRefPubMedGoogle Scholar
  31. 31.
    Grisso T, Appelbaum PS (1998) Why competence is important: the doctrine of informed consent. In: Grisso T, Appelbaum PS (eds) Assessing competence to consent to treatment: a guide for physicians and other health professionals. University Press, Oxford, pp 1–15Google Scholar
  32. 32.
    Grisso T, Appelbaum PS, Mulvey EP, Fletcher K (1995) The MacArthur treatment competence study. II: measures of abilities related to competence to consent to treatment. Law Hum Behav 19:127–148CrossRefPubMedGoogle Scholar
  33. 33.
    Grisso T, Vierling L (1978) Minors' consent to treatment: a developmental perspective. Prof Psychol 9:412–427PubMedGoogle Scholar
  34. 34.
    Hein I, Troost P, Lindeboom R, de Vries M, Zwaan C, Lindauer R (2012) Assessing children’s competence to consent in research by a standardized tool: a validity study. BMC Pediatr 12:156–163CrossRefPubMedCentralPubMedGoogle Scholar
  35. 35.
    Hickey K (2007) Minors' rights in medical decision making. JONAS Healthc Law Ethics Regul 9:100–104CrossRefPubMedGoogle Scholar
  36. 36.
    Hinds PS, Drew D, Oakes LL, Fouladi M, Spunt SL, Church C, Furman WL (2005) End-of-life care preferences of pediatric patients with cancer. JCO 23:9146–9154CrossRefGoogle Scholar
  37. 37.
    Joffe S, Fernandez CV, Pentz RD, Ungar DR, Mathew NA, Turner CW, Alessandri AJ, Woodman CL, Singer DA, Kodish E (2006) Involving children with cancer in decision-making about research participation. J Pediatr 149:862–868, e861CrossRefPubMedGoogle Scholar
  38. 38.
    Kon AA (2010) The shared decision-making continuum. JAMA 304:903–904CrossRefPubMedGoogle Scholar
  39. 39.
    Koocher GP, DeMaso DR (1990) Children's competence to consent to medical procedures. Pediatrician 17:68–73PubMedGoogle Scholar
  40. 40.
    Kuther TL (2003) Medical decision-making and minors: issues of consent and assent. Adolescence 38:343–358PubMedGoogle Scholar
  41. 41.
    Larcher V, Hutchinson A (2010) How should paediatricians assess Gillick competence? Arch Dis Child 95:307–311PubMedGoogle Scholar
  42. 42.
    Lee KJ, Havens PL, Sato TT, Hoffman GM, Leuthner SR (2006) Assent for treatment: clinician knowledge, attitudes, and practice. Pediatrics 118:723–730CrossRefPubMedGoogle Scholar
  43. 43.
    Leikin SL (1983) Minors' assent or dissent to medical treatment. J Pediatr 102:169–176CrossRefPubMedGoogle Scholar
  44. 44.
    Leikin S (1993) Minors' assent, consent, or dissent to medical research. IRB: Ethic Hum Res 15:1–7CrossRefGoogle Scholar
  45. 45.
    Levy MDL, Larcher V, Kurz R (2003) Informed consent/assent in children. Statement of the ethics working group of the Confederation of European Specialists in Paediatrics (CESP). Eur J Pediatr 162:629–633CrossRefGoogle Scholar
  46. 46.
    Lo B (1990) Assessing decision‐making capacity. JLME 18:193–201Google Scholar
  47. 47.
    Mårtenson EK, Fägerskiöld AM (2007) A review of children’s decision-making competence in health care. J Clin Nurs 17:3131–3141CrossRefPubMedGoogle Scholar
  48. 48.
    McCabe MA (1996) Involving children and adolescents in medical decision making: developmental and clinical considerations. J Pediatr Psychol 21:505–516CrossRefPubMedGoogle Scholar
  49. 49.
    Michel M (without date) Der Fall Ashley oder von Grenzen und Massstäben elterlicher Entscheidungskompetenz. Available via http://www.academia.edu/1452154/Der_Fall_Ashley_oder_von_Grenzen_und_Massstaben_elterlicher_Entscheidungskompetenz. Accessed 20 Feb 2014
  50. 50.
    Miller VA, Drotar D, Kodish E (2004) Children's competence for assent and consent: a review of empirical findings. Ethic Behav 14:255–295CrossRefGoogle Scholar
  51. 51.
    Nebendahl M (2009) Selbstbestimmungsrecht und rechtfertigende Einwilligung des Minderjährigen bei medizinischen Eingriffen. MedR Medizinrecht 27:197–205CrossRefGoogle Scholar
  52. 52.
    Peter C (2008) Die einwilligung von minderjährigen in medizinische eingriffe. Schweiz Ärzteztg 89:1539–1540Google Scholar
  53. 53.
    Peters S (2013) Wenn Kinder anderer Meinung sind-Die ethische Problematik von Kindeswohl und Kindeswille in der Kinder-und Jugendmedizin. MD, Universität Göttingen, http://hdl.handle.net/11858/00-1735-0000-0001-BBDB-8
  54. 54.
    Scherer D (1988) The capacities of minors to exercise voluntariness in medical decisions. Law Hum Behav 15:431–449CrossRefGoogle Scholar
  55. 55.
    Scherer DG, Reppucci ND (1988) Adolescents' capacities to provide voluntary informed consent: the effects of parental influence and medical dilemmas. Law Hum Behav 12:123–140CrossRefPubMedGoogle Scholar
  56. 56.
    Schlam L, Wood JP (2000) Informed consent to the medical treatment of minors: law and practice. Health Matrix 10:141–174PubMedGoogle Scholar
  57. 57.
    Shaw M (2001) Competence and consent to treatment in children and adolescents. Adv Psychiatr Treat 7:150–159CrossRefGoogle Scholar
  58. 58.
    Sigman GS, O'Connor C (1991) Exploration for physicians of the mature minor doctrine. J Pediatr 119:520–525CrossRefPubMedGoogle Scholar
  59. 59.
    Spaak T (2005) The concept of legal competence. Leg Theory Philo LawGoogle Scholar
  60. 60.
    Spencer GE (1999) Children's competency to consent: an ethical dilemma. J Child Health Care 4:117–122CrossRefGoogle Scholar
  61. 61.
    Spinetta JJ, Masera G, Jankovic M, Oppenheim D, Martins AG, Arush B, Weyl M, van Dongen-Melman J, Epelman C, Medin G (2003) Valid informed consent and participative decision-making in children with cancer and their parents: a report of the SIOP working committee on psychosocial issues in pediatric oncology. Med Pediatr Oncol 40:244–246CrossRefPubMedGoogle Scholar
  62. 62.
    Trachsel M, Mitchell C, Biller-Andorno N (2013) Decision-making incapacity at the end of life: conceptual and ethical challenges. Bioet Forum 6:26–30Google Scholar
  63. 63.
    Vollmann J (2003) Konzeptionelle und methodische Fragen bei der Feststellung der Einwilligungsfähigkeit bei Kindern. In: Wiesemann C, Dörries A, Wolfslast G, Simon A (eds) Das Kind als Patient-Ethische Konflikte zwischen Kindeswohl und Kindeswille. Campus Verlag, Frankfurt/New York, pp 48–58Google Scholar
  64. 64.
    Weithorn LA, Campbell SB (1982) The competency of children and adolescents to make informed treatment decisions. Child Dev 53:1589–1598CrossRefPubMedGoogle Scholar
  65. 65.
    Whitney SN, Ethier AM, Frugé E, Berg S, McCullough LB, Hockenberry M (2006) Decision making in pediatric oncology: who should take the lead? The decisional priority in pediatric oncology model. J Clin Oncol 24:160–165CrossRefPubMedGoogle Scholar
  66. 66.
    Wölk F (2001) Der minderjährige patient in der ärztlichen behandlung bedingungen für die wahrnehmung des selbstbestimmungsrechts von minderjährigen bei medizinischen eingriffen. MedR Medizinrecht 19:80–89CrossRefGoogle Scholar
  67. 67.
    Wright B, Aldridge J, Wurr K, Sloper T, Tomlinson H, Miller M (2008) Clinical dilemmas in children with life-limiting illnesses: decision making and the law. Palliat Med 23:238–247CrossRefPubMedGoogle Scholar

Copyright information

© Springer-Verlag Berlin Heidelberg 2014

Authors and Affiliations

  • Katharina M. Ruhe
    • 1
    Email author
  • Tenzin Wangmo
    • 1
  • Domnita O. Badarau
    • 1
  • Bernice S. Elger
    • 1
  • Felix Niggli
    • 2
  1. 1.Institute for Biomedical EthicsUniversity of BaselBaselSwitzerland
  2. 2.Department of Pediatric OncologyUniversity Children’s Hospital ZurichZurichSwitzerland

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