Skip to main content
Erschienen in: European Journal of Pediatrics 6/2015

01.06.2015 | Original Article

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

verfasst von: Katharina M. Ruhe, Tenzin Wangmo, Domnita O. Badarau, Bernice S. Elger, Felix Niggli

Erschienen in: European Journal of Pediatrics | Ausgabe 6/2015

Einloggen, um Zugang zu erhalten

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.
Fußnoten
1
The terms child, adolescent, and minor patients are used interchangeably to denominate patients who have not yet attained the legal age of majority.
 
2
In this article, we adopt the term capacity to denominate clinical decision-making ability (as opposed to usage of the word competence).
 
Literatur
2.
Zurück zum Zitat Alderson P (1993) Children's consent to surgery. Open University Press, Buckingham Alderson P (1993) Children's consent to surgery. Open University Press, Buckingham
3.
Zurück zum Zitat 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 28–47 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 28–47
4.
Zurück zum Zitat Alderson P (2007) Competent children? Minors’ consent to health care treatment and research. Soc Sci Med 65:2272–2283CrossRefPubMed Alderson P (2007) Competent children? Minors’ consent to health care treatment and research. Soc Sci Med 65:2272–2283CrossRefPubMed
6.
Zurück zum Zitat American Academy of Pediatrics Committee on Bioethics (1995) Informed consent, parental permission, and assent in pediatric practice. Pediatr 95:314–317 American Academy of Pediatrics Committee on Bioethics (1995) Informed consent, parental permission, and assent in pediatric practice. Pediatr 95:314–317
7.
Zurück zum Zitat Appelbaum PS (2007) Assessment of patients' competence to consent to treatment. New Engl J Med 357:1834–1840CrossRefPubMed Appelbaum PS (2007) Assessment of patients' competence to consent to treatment. New Engl J Med 357:1834–1840CrossRefPubMed
8.
Zurück zum Zitat Appelbaum PS, Grisso T (1995) The MacArthur treatment competence study. I: mental illness and competence to consent to treatment. Law Hum Behav 19:105CrossRefPubMed Appelbaum PS, Grisso T (1995) The MacArthur treatment competence study. I: mental illness and competence to consent to treatment. Law Hum Behav 19:105CrossRefPubMed
10.
Zurück zum Zitat Bartholome WG (1995) Informed consent, parental permission, and assent in pediatric practice. Pediatrics 96:981–982PubMed Bartholome WG (1995) Informed consent, parental permission, and assent in pediatric practice. Pediatrics 96:981–982PubMed
11.
Zurück zum Zitat Beauchamp TL, Childress JF (2001) Principles of biomedical ethics. Oxford University Press, New York Beauchamp TL, Childress JF (2001) Principles of biomedical ethics. Oxford University Press, New York
12.
Zurück zum Zitat Berg J (1996) Constructing competence: formulating standards of legal competence to make medical decisions. Rutgers L Rev 48:351–395 Berg J (1996) Constructing competence: formulating standards of legal competence to make medical decisions. Rutgers L Rev 48:351–395
13.
Zurück zum Zitat Bielby P (2005) The conflation of competence and capacity in English medical law: a philosophical critique. Med Healthc Philos 8:357–369CrossRef Bielby P (2005) The conflation of competence and capacity in English medical law: a philosophical critique. Med Healthc Philos 8:357–369CrossRef
14.
Zurück zum Zitat 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 103 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 103
15.
Zurück zum Zitat Brook G (2000) Children’s competency to consent: a framework for practice. Paediatr Nurs 12:31–35CrossRef Brook G (2000) Children’s competency to consent: a framework for practice. Paediatr Nurs 12:31–35CrossRef
16.
Zurück zum Zitat 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 11–27 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 11–27
17.
Zurück zum Zitat Coyne I (2008) Children's participation in consultations and decision-making at health service level: a review of the literature. Intern J Nurs Stud 45:1682CrossRef Coyne I (2008) Children's participation in consultations and decision-making at health service level: a review of the literature. Intern J Nurs Stud 45:1682CrossRef
18.
Zurück zum Zitat 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 15:312–319CrossRefPubMed 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 15:312–319CrossRefPubMed
19.
Zurück zum Zitat 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 Reviews 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 Reviews
20.
Zurück zum Zitat 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 14:152–163 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 14:152–163
21.
Zurück zum Zitat Deutsch E, Spickhoff AM (2003) Arztrecht, Arzneimittelrecht, Medizinprodukterecht und Transfusionsrecht, 5th edn. Springer, Berlin Deutsch E, Spickhoff AM (2003) Arztrecht, Arzneimittelrecht, Medizinprodukterecht und Transfusionsrecht, 5th edn. Springer, Berlin
22.
Zurück zum Zitat Didcock EA (2007) Issues of consent and competency in children and young people. Paediatr Child Health 17:425–428CrossRef Didcock EA (2007) Issues of consent and competency in children and young people. Paediatr Child Health 17:425–428CrossRef
23.
Zurück zum Zitat 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 163:1323–1334CrossRefPubMed 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 163:1323–1334CrossRefPubMed
24.
Zurück zum Zitat 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 14:27–34CrossRefPubMedCentralPubMed 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 14:27–34CrossRefPubMedCentralPubMed
25.
Zurück zum Zitat Etchells E, Sharpe G, Elliott C, Singer PA (1996) Bioethics for clinicians: 3. Capacity. Can Med Assoc J 155:657–661 Etchells E, Sharpe G, Elliott C, Singer PA (1996) Bioethics for clinicians: 3. Capacity. Can Med Assoc J 155:657–661
26.
Zurück zum Zitat Fitten LJ, Lusky R, Hamann C (1990) Assessing treatment decision-making capacity in elderly nursing home residents. J Am Geriatr Soc 38:1097–1104CrossRefPubMed Fitten LJ, Lusky R, Hamann C (1990) Assessing treatment decision-making capacity in elderly nursing home residents. J Am Geriatr Soc 38:1097–1104CrossRefPubMed
27.
28.
Zurück zum Zitat Gabe J, Olumide G, Bury M (2004) 'It takes three to tango': a framework for understanding patient partnership in paediatric clinics. Soc Sci Med 59:1071CrossRefPubMed Gabe J, Olumide G, Bury M (2004) 'It takes three to tango': a framework for understanding patient partnership in paediatric clinics. Soc Sci Med 59:1071CrossRefPubMed
30.
Zurück zum Zitat Grisso T, Appelbaum PS (1995) The MacArthur treatment competence study. III: abilities of patients to consent to psychiatric and medical treatments. Law Hum Behav 19:149–174CrossRefPubMed Grisso T, Appelbaum PS (1995) The MacArthur treatment competence study. III: abilities of patients to consent to psychiatric and medical treatments. Law Hum Behav 19:149–174CrossRefPubMed
31.
Zurück zum Zitat 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 1–15 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 1–15
32.
Zurück zum Zitat 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 19:127–148CrossRefPubMed 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 19:127–148CrossRefPubMed
33.
Zurück zum Zitat Grisso T, Vierling L (1978) Minors' consent to treatment: a developmental perspective. Prof Psychol 9:412–427PubMed Grisso T, Vierling L (1978) Minors' consent to treatment: a developmental perspective. Prof Psychol 9:412–427PubMed
34.
Zurück zum Zitat 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 12:156–163CrossRefPubMedCentralPubMed 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 12:156–163CrossRefPubMedCentralPubMed
35.
Zurück zum Zitat Hickey K (2007) Minors' rights in medical decision making. JONAS Healthc Law Ethics Regul 9:100–104CrossRefPubMed Hickey K (2007) Minors' rights in medical decision making. JONAS Healthc Law Ethics Regul 9:100–104CrossRefPubMed
36.
Zurück zum Zitat 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 23:9146–9154CrossRef 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 23:9146–9154CrossRef
37.
Zurück zum Zitat 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, e861CrossRefPubMed 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, e861CrossRefPubMed
39.
Zurück zum Zitat Koocher GP, DeMaso DR (1990) Children's competence to consent to medical procedures. Pediatrician 17:68–73PubMed Koocher GP, DeMaso DR (1990) Children's competence to consent to medical procedures. Pediatrician 17:68–73PubMed
40.
Zurück zum Zitat Kuther TL (2003) Medical decision-making and minors: issues of consent and assent. Adolescence 38:343–358PubMed Kuther TL (2003) Medical decision-making and minors: issues of consent and assent. Adolescence 38:343–358PubMed
41.
Zurück zum Zitat Larcher V, Hutchinson A (2010) How should paediatricians assess Gillick competence? Arch Dis Child 95:307–311PubMed Larcher V, Hutchinson A (2010) How should paediatricians assess Gillick competence? Arch Dis Child 95:307–311PubMed
42.
Zurück zum Zitat Lee KJ, Havens PL, Sato TT, Hoffman GM, Leuthner SR (2006) Assent for treatment: clinician knowledge, attitudes, and practice. Pediatrics 118:723–730CrossRefPubMed Lee KJ, Havens PL, Sato TT, Hoffman GM, Leuthner SR (2006) Assent for treatment: clinician knowledge, attitudes, and practice. Pediatrics 118:723–730CrossRefPubMed
43.
44.
Zurück zum Zitat Leikin S (1993) Minors' assent, consent, or dissent to medical research. IRB: Ethic Hum Res 15:1–7CrossRef Leikin S (1993) Minors' assent, consent, or dissent to medical research. IRB: Ethic Hum Res 15:1–7CrossRef
45.
Zurück zum Zitat 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 162:629–633CrossRef 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 162:629–633CrossRef
46.
Zurück zum Zitat Lo B (1990) Assessing decision‐making capacity. JLME 18:193–201 Lo B (1990) Assessing decision‐making capacity. JLME 18:193–201
47.
Zurück zum Zitat Mårtenson EK, Fägerskiöld AM (2007) A review of children’s decision-making competence in health care. J Clin Nurs 17:3131–3141CrossRefPubMed Mårtenson EK, Fägerskiöld AM (2007) A review of children’s decision-making competence in health care. J Clin Nurs 17:3131–3141CrossRefPubMed
48.
Zurück zum Zitat McCabe MA (1996) Involving children and adolescents in medical decision making: developmental and clinical considerations. J Pediatr Psychol 21:505–516CrossRefPubMed McCabe MA (1996) Involving children and adolescents in medical decision making: developmental and clinical considerations. J Pediatr Psychol 21:505–516CrossRefPubMed
50.
Zurück zum Zitat Miller VA, Drotar D, Kodish E (2004) Children's competence for assent and consent: a review of empirical findings. Ethic Behav 14:255–295CrossRef Miller VA, Drotar D, Kodish E (2004) Children's competence for assent and consent: a review of empirical findings. Ethic Behav 14:255–295CrossRef
51.
Zurück zum Zitat Nebendahl M (2009) Selbstbestimmungsrecht und rechtfertigende Einwilligung des Minderjährigen bei medizinischen Eingriffen. MedR Medizinrecht 27:197–205CrossRef Nebendahl M (2009) Selbstbestimmungsrecht und rechtfertigende Einwilligung des Minderjährigen bei medizinischen Eingriffen. MedR Medizinrecht 27:197–205CrossRef
52.
Zurück zum Zitat Peter C (2008) Die einwilligung von minderjährigen in medizinische eingriffe. Schweiz Ärzteztg 89:1539–1540 Peter C (2008) Die einwilligung von minderjährigen in medizinische eingriffe. Schweiz Ärzteztg 89:1539–1540
54.
Zurück zum Zitat Scherer D (1988) The capacities of minors to exercise voluntariness in medical decisions. Law Hum Behav 15:431–449CrossRef Scherer D (1988) The capacities of minors to exercise voluntariness in medical decisions. Law Hum Behav 15:431–449CrossRef
55.
Zurück zum Zitat Scherer DG, Reppucci ND (1988) Adolescents' capacities to provide voluntary informed consent: the effects of parental influence and medical dilemmas. Law Hum Behav 12:123–140CrossRefPubMed Scherer DG, Reppucci ND (1988) Adolescents' capacities to provide voluntary informed consent: the effects of parental influence and medical dilemmas. Law Hum Behav 12:123–140CrossRefPubMed
56.
Zurück zum Zitat Schlam L, Wood JP (2000) Informed consent to the medical treatment of minors: law and practice. Health Matrix 10:141–174PubMed Schlam L, Wood JP (2000) Informed consent to the medical treatment of minors: law and practice. Health Matrix 10:141–174PubMed
57.
Zurück zum Zitat Shaw M (2001) Competence and consent to treatment in children and adolescents. Adv Psychiatr Treat 7:150–159CrossRef Shaw M (2001) Competence and consent to treatment in children and adolescents. Adv Psychiatr Treat 7:150–159CrossRef
58.
Zurück zum Zitat Sigman GS, O'Connor C (1991) Exploration for physicians of the mature minor doctrine. J Pediatr 119:520–525CrossRefPubMed Sigman GS, O'Connor C (1991) Exploration for physicians of the mature minor doctrine. J Pediatr 119:520–525CrossRefPubMed
59.
Zurück zum Zitat Spaak T (2005) The concept of legal competence. Leg Theory Philo Law Spaak T (2005) The concept of legal competence. Leg Theory Philo Law
60.
Zurück zum Zitat Spencer GE (1999) Children's competency to consent: an ethical dilemma. J Child Health Care 4:117–122CrossRef Spencer GE (1999) Children's competency to consent: an ethical dilemma. J Child Health Care 4:117–122CrossRef
61.
Zurück zum Zitat 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 40:244–246CrossRefPubMed 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 40:244–246CrossRefPubMed
62.
Zurück zum Zitat Trachsel M, Mitchell C, Biller-Andorno N (2013) Decision-making incapacity at the end of life: conceptual and ethical challenges. Bioet Forum 6:26–30 Trachsel M, Mitchell C, Biller-Andorno N (2013) Decision-making incapacity at the end of life: conceptual and ethical challenges. Bioet Forum 6:26–30
63.
Zurück zum Zitat 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 48–58 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 48–58
64.
Zurück zum Zitat Weithorn LA, Campbell SB (1982) The competency of children and adolescents to make informed treatment decisions. Child Dev 53:1589–1598CrossRefPubMed Weithorn LA, Campbell SB (1982) The competency of children and adolescents to make informed treatment decisions. Child Dev 53:1589–1598CrossRefPubMed
65.
Zurück zum Zitat 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 24:160–165CrossRefPubMed 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 24:160–165CrossRefPubMed
66.
Zurück zum Zitat Wölk F (2001) Der minderjährige patient in der ärztlichen behandlung bedingungen für die wahrnehmung des selbstbestimmungsrechts von minderjährigen bei medizinischen eingriffen. MedR Medizinrecht 19:80–89CrossRef Wölk F (2001) Der minderjährige patient in der ärztlichen behandlung bedingungen für die wahrnehmung des selbstbestimmungsrechts von minderjährigen bei medizinischen eingriffen. MedR Medizinrecht 19:80–89CrossRef
67.
Zurück zum Zitat 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 23:238–247CrossRefPubMed 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 23:238–247CrossRefPubMed
Metadaten
Titel
Decision-making capacity of children and adolescents—suggestions for advancing the concept’s implementation in pediatric healthcare
verfasst von
Katharina M. Ruhe
Tenzin Wangmo
Domnita O. Badarau
Bernice S. Elger
Felix Niggli
Publikationsdatum
01.06.2015
Verlag
Springer Berlin Heidelberg
Erschienen in
European Journal of Pediatrics / Ausgabe 6/2015
Print ISSN: 0340-6199
Elektronische ISSN: 1432-1076
DOI
https://doi.org/10.1007/s00431-014-2462-8

Weitere Artikel der Ausgabe 6/2015

European Journal of Pediatrics 6/2015 Zur Ausgabe

Update Pädiatrie

Bestellen Sie unseren Fach-Newsletter und bleiben Sie gut informiert.