Child-friendly healthcare: Delivering on the right to be heard

Medical Law Review

Volumn 19, Issue 1, 2011, Pages 27-54

  Donnelly, Mary ^a   Kilkelly, Ursula ^a  

^a UNIVERSITY COLLEGE CORK   (Ireland)

Author keywords

[No Author keywords available]

Indexed keywords

ADOLESCENT; ADVISORY COMMITTEE; ARTICLE; CHILD; CHILD WELFARE; HEALTH CARE DELIVERY; HUMAN; INFORMED CONSENT; LEGAL ASPECT; PATIENT PARTICIPATION;

ADOLESCENT; ADVISORY COMMITTEES; CHILD; CHILD WELFARE; DELIVERY OF HEALTH CARE; HUMANS; INFORMED CONSENT; PATIENT PARTICIPATION;

EID: 79951921839     PISSN: 09670742     EISSN: 14643790     Source Type: Journal    
DOI: 10.1093/medlaw/fwq034     Document Type: Article

References (156)

1. General Assembly Resolution 44/25, November 20 1989, art 12.
2. L Lundy, '"Voice" Is not Enough: the Implications of Article 12 of the United Nations Convention on the Rights of the Child for Education' (2007) 33 Br Educ Res J 927.
3. See, for example, C Smart and B Neale, 'It's My Life Too - Children's Perspectives on Post-divorce Parenting' (2000) Fam L 63.
4. M Gollop, A Smith and N Taylor, 'Children's Involvement in Custody and Access Arrangements after Parental Separation' (2000) 12 Child Fam LQ 383.
5. K Röbäck and I Höjer, 'Constructing Children's Views in the Enforcement of Contact Orders' (2009) 17 Intl J Children's Rights 663.
6. G Lansdown, Promoting Children's Participation in Democratic Decision-Making (UNICEF Innocenti Research Centre, Florence 2001).
7. R Sinclair, 'Participation in Practice, Making it Meaningful, Effective and Sustainable' (2004) 18 Children and Society 106.
8. N Thomas, 'Towards a Theory of Children's Participation' (2007) 15 Intl J Children's Rights 199.
9. Committee on the Rights of the Child, General Comment No 12 The Right of the Child to be Heard (2009) UN Doc CRC/C/GC/12, para 100.
10. Learning from Bristol: The Report of the Public Inquiry into Children's Heart Surgery at the Bristol Royal Infirmary 1984-1995 Command Paper CM 5207 (Bristol Royal Infirmary Inquiry, Bristol 2001).
11. See Good Medical Practice in Paediatrics and Child Health: Duties and Responsibilities of Paediatricians (Royal College of Paediatrics and Child Health, London 2002), para 21.
12. In Ireland, see Guide to Professional Conduct and Ethics for Registered Medical Practitioners (7th edn Medical Council, Dublin 2009), para 43.1.
13. Note also the policy shift to participation in service planning: see J Lightfoot and P Sloper, Having a Say in Health: Guidelines for Involving Young Patients in Health Services Development (University of York, Social Policy Research Unit, York 2002).
14. A Franklin and P Sloper 'Listening and Responding? Children's Participation in Health Care within England' (2005) 13 Intl J Children's Rights 11, 12-4.
15. Health Care Choices: Making Decisions with Children (Institute for Public Policy Research, London 1996) 27.
16. The focus of the article is on children aged less than 14 years. For this reason, the term 'child' (rather than 'young person') is used throughout, except when discussing issues of competence.
17. U Kilkelly and M Donnelly, The Child's Right to be Heard in the Healthcare Setting: Perspectives of Children, Parents and Health Professionals (Office of the Minister for Children and Youth Affairs, Dublin 2006) accessed 18 January 2011.
18. Health Care Choices, above n 9, p 27.
19. For a sample of the extensive discussion of this topic, see A Bainham, 'The Balance of Power in Family Decisions' (1986) 45 CLJ 262.
20. J Eekelaar 'The Emergence of Children's Rights' (1986) 6 OJLS 161.
21. M Brazier and E Cave, Medicine, Patients and the Law (4th edn Penguin, London 2007), Ch 15.
22. J Fortin, Children's Rights and the Developing Law (3rd edn Cambridge University Press, Cambridge 2009), Ch 5.
23. Family Law Reform Act 1969, s 8 (EW); Non-Fatal Offences against the Person Act 1997, s 23(1) (Irl).
24. [1986] A.C. 112.
25. It is probable that the Irish courts would endorse a Gillicktype approach to consent: see Law Reform Commission Consultation Paper, Children and the Law: Medical Treatment (LRC CP 59, Dublin 2009), paras 4.05-4.07.
26. See Re R (A Minor) [1991] 4 All E.R. 177; Re W (A Minor) (Medical Treatment: Court's Jurisdiction) [1992] 3 WLR 758. The question has not arisen in Ireland, although note the finding of Laffoy J in Fitzpatrick v K [2008] I.E.H.C. 104, at p 19 of the transcript (in the context of adults) that the refusal of life-saving or sustaining treatment constitutes a waiver of the right to life and that, accordingly, a higher standard of capacity should be required.
27. For a critique of the distinction drawn between consent to and refusal of treatment, see G Douglas, 'The Retreat from Gillick' (1992) 55 MLR 569.
28. M Brazier and C Bridge, 'Coercion or Caring: Analysing Adolescent Autonomy' (1996) 16 LS 84.
29. Brazier and Cave, above n 13, pp 405-6.
30. 'Pathways to Participation: Openings, Opportunities and Obligations: A New Model for Enhancing Children's Participation in Decision-making in line with Article 13.1 of the UNCRC' (2001) 15 Children and Society 107.
31. See also RA Hart, 'Children's Participation: From Tokenism to Citizenship' (1992) Innocenti Essays, No 4 (UNICEF Innocenti Research Centre, Florence 1992).
32. A helpful summary of different typologies may be found in Thomas, above n 4, 204-6.
33. Note, for example, the arguments regarding participation rights of babies in P Alderson, J Hawthorne and M Killen, 'The Participation Rights of Premature Babies' (2005) 13 Intl J Children's Rights 31.
34. For a similar argument in respect of participation by patients lacking capacity under the Mental Capacity Act 2005, s 4, see M Donnelly, 'Best Interests, Patient Participation and the Mental Capacity Act 2005' (2009) 17 Med L Rev 1, 20-1.
35. Committee on the Rights of the Child, The Right of the Child to be Heard, above n 5, para 74.
36. Children Act 1989, s 1(3) sets out the factors to be taken into account in deciding whether to make, discharge, or vary an order under the Act. These include the 'ascertainable wishes and feelings of the child concerned (considered in light of his age and understanding)'.
37. See S Elliston, The Best Interests of the Child in Healthcare (Routledge-Cavendish, Abingdon 2007) 127-39.
38. See, for example, Re E (A Minor) [1993] 1 FLR 386; Re M (Child: Refusal of Medical Treatment) [1999] 2 FLR 1097.
39. Shier, above n 17, 114, argues that the CRC protects participation to level three of his five-level typology (see text to n 17 above), requiring that children's views be taken into account (although he also notes the importance of developing participative practices to all five levels).
40. See Committee on the Rights of the Child, General Guidelines regarding the form and contents of Periodic Reports to be submitted by States Parties under Article 44, paragraph 1(b) of the Convention, CRC/C/58, 1996.
41. This provision is supplemented by Article 17 which recognises the role of the mass media in disseminating information to children and requires States Parties to ensure that children have access to information from a diversity of sources, 'especially those aimed at the promotion of his or her social, spiritual and moral well-being and physical and mental health'.
42. Note also the comments of the Committee on the Rights of the Child regarding the significance of the right to express views freely and to have these views taken into account in realising adolescents' rights under Article 24: Committee on the Rights of the Child, General Comment No 4 (2003) Adolescent health and development in the context of the Convention on the Rights of the Child, CRC/GC/2003/4, para 8.
43. The Convention has been ratified by 194 members of the United Nations, some with stated reservations or interpretations, and only the USA and Somalia have failed to ratify.
44. For a discussion of the impact of nonratification on children's participation in healthcare decision-making in the USA, see W Mohr and S Kennedy, 'The Conundrum of Children in the US Healthcare System' (2001) 8 Nurs Ethics 196.
45. Mechanisms for delivery on Article 12 are discussed in text following n 97 below.
46. See Lansdown, above n 4; Sinclair, above n 4.
47. The importance of developing autonomy 'competencies' (i.e. improving individuals' abilities to make autonomous decisions) is key to the relational view of autonomy: see D Meyers, Self, Society and Personal Choice (Columbia University Press, New York 1989).
48. For application in the specific context of children and healthcare, see S Dodds, 'Choice and Control in Feminist Bioethics' in C Mackenzie and N Stoljar (eds), Relational Autonomy: Feminist Perspectives on Autonomy, Agency, and the Social Self (Oxford University Press, New York 2000) 229.
49. See Children's Consent to Surgery (Open University Press, Buckingham 1993) 154-63.
50. See J Angst and D Deatrick, 'Involvement in Healthcare Decisions: Parents and Children with Chronic Illness' (1996) 2 J Fam Nurs 174.
51. Note also that the way in which adolescents are treated by healthcare professionals is an important predictor of their satisfaction with healthcare: see L Freed and others, 'Determinants of Adolescent Satisfaction with Health Care Providers and Intentions to Keep Follow-up Appointments' (1998) 22 J Adolesc Health 475.
52. One might reasonably expect a similar finding in respect of children.
53. An approach based on 'therapeutic jurisprudence' recognises the 'need for an assessment of the therapeutic impact of legal rules': see B Winick, 'The Right to Refuse Mental Health Treatment: A Therapeutic Jurisprudence Analysis' (1994) 17 Intl JL Psychiatry 99, 100.
54. J Bridgman, 'After Bristol: The Healthcare of Young Children and the Law' (2003) 23 LS 229, 233.
55. For a summary of studies, see A Franklin and P Sloper, 'Listening and Responding? Children's Participation in Health Care within England' (2005) 13 Intl J Children's Rights 11, 18-20.
56. In addition to the work discussed in the text, see B Beresford and P Sloper, 'Chronically Ill Adolescents Experiences of Communicating with Doctors: A Qualitative Study' (2003) 33 J Adolesc Health 172.
57. I Hallstrom and G Elander, 'Decision-making During Hospitalization: Parents' and Children's Involvement' (2004) 13 J Clin Nurs 367.
58. C Battrick and A Glasper, 'The Views of Children and their Families on Being in Hospital (2004) 13 Br J Nurs 328.
59. I Coyne and others, Giving Children a Voice: Investigating Children's Experiences of Participation in Consultation and Decision-Making in Irish Hospitals (Office of the Minister for Children, Dublin 2006).
60. And A Buckley and E Savage, 'Pre-operative Information Needs of Children Undergoing Tonsillectomy (2010) 19 J Clin Nurs 2879.
61. For details of methodology, see Alderson, above n 32, pp 3-6.
62. Ninety-nine out of 120 children endorsed this view; sixteen believed only parents should be informed and four that only the child should be informed (one was unsure).
63. Half of the 120 children considered that the adult had been the main decider in their cases although only thirty-two of the parents of these children considered this to be the case.
64. For full details of the methodology employed, see Kilkelly and Donnelly, above n 11, Ch 4.
65. Note the current proposal to amend the Constitution to include express protection for children's rights. The proposed amendment would include a specific provision vindicating the child's right to be heard in 'any judicial and administrative proceedings affecting the child, having regard to the child's age and maturity'.
66. See Joint Committee on the Constitutional Amendment on Children: Third Report: Proposal for a Constitutional Amendment to Strengthen Children's Rights (February 2010) .
67. The conservative ideology underpinning these provisions is recounted in G Hogan and G Whyte, JM Kelly: The Irish Constitution (4th edn Lexis Nexis Butterworths, Dublin 2003) 1829-30.
68. For the impact of these articles on children's rights in Ireland, see U Kilkelly, Children's Rights in Ireland: Law, Policy and Practice (Tottel Publishing, Dublin 2008), Ch 3.
69. North Western Health Board v HW [2001] I.E.S.C. 90. The Supreme Court held that the state could not interfere with parents' refusal to have a routine diagnostic procedure (the PKU or heel test) performed on their infant son.
70. For a discussion, see U Kilkelly and C O'Mahony, 'The Proposed Children's Rights Amendment: Running to Stand Still?' (2007) 2 Irish J Fam L 19.
71. [2001] I.E.S.C. 90, [182], per Denham J. The sole dissenting judge, Keane CJ, applied a test based solely on the best interests of the child.
72. [2001] I.E.S.C. 90, [289] per Hardiman J.
73. See text following n 140 below.
74. The choice of these age perimeters for this purpose is supported by the literature in this area: see N King and A Cross, 'Children as Decision Makers: Guidelines for Paediatricians' (1989) 115 J Paediatrics 10.
75. S Sartain, C Clarke and R Heyman, 'Hearing the Voices of Children with Chronic Illness' (2000) 32 J Adv Nurs 913.
76. Fourteen interviews were carried out, of which ten were group interviews and four were individual interviews. The individual interviews were with children who had considerable experience of the healthcare system.
77. The Traveller Community is an ethnic, minority group comprising approximately 0.5% of the Irish population. Travellers have poorer health outcomes, higher rates of infant mortality, and a lower life expectancy than the rest of the population: see The Travellers Health Status Study: Vital Statistics of Travelling People 1987 (Department of Health, Dublin 1987).
78. Professionals interviewed included general practitioners, anaesthetists, ENT consultants, dentists, nurses, and specialists in children's healthcare. It must be recognised that there is an extent to which the individual interviewees were self-selecting; professionals who agree to be interviewed for a project like this are likely to be inherently more committed to the ideal of children's participation.
79. These were with the (mainly) nursing staff of a children's unit in a general hospital; a group of hospital interns; and professionals involved in the education of healthcare professionals.
80. See further U Kilkelly and M Donnelly, 'Participation in Healthcare: The Views and Experiences of Children and Young People' (2011) 19 Intl J Children's Rights (forthcoming).
81. Kilkelly and Donnelly, above n 11, p 41.
82. This view was confirmed by parents whose children had spent time in both specialist and non-specialist hospitals.
83. Note however evidence which suggests that the experience of children in specialist hospital also varied considerably: see V Lambert, M Glacken, M McCarron, 'Visible-ness: The Nature of Communication for Children Admitted to a Specialist Children's Hospital in the Republic of Ireland' (2008) 17 J Clin Nurs 3092.
84. Kilkelly and Donnelly, above n 11, p 51.
85. See the barriers listed in Alderson and Montgomery, Health Care Choices, above n 12, 9, pp 58-61.
86. Kilkelly and Donnelly, above n 11, p 42.
87. This experience of 'double marginalisation' in a range of contexts of disadvantage has been highlighted by other commentators: see Franklin and Sloper, above n 8, 19.
88. Kilkelly and Donnelly, p 63.
89. Kilkelly and Donnelly, p 66.
90. See studies cited in J Gabe, J Olumide and M Bury, '"It Takes Three to Tango": A Framework for Understanding Patient Partnership in Paediatic Clinics' (2004) 59 Soc Sci Med 1071, 1074.
91. B Young and others, 'Managing Communication with Young People who have a Potentially Life Threatening Chronic Illness: Qualitative Study of Patients and Parents' (2003) 326 Br Med J 305, 306.
92. The study involved thirteen families, comprising nineteen parents (thirteen mothers and six fathers) and thirteen patients aged 8-17 years. All patients suffered from cancer or a brain tumour.
93. See Bridgman, above n 35, 236.
94. Young and others, above n 84, 308.
95. Kilkelly and Donnelly, p 66.
96. Above n 83, 1077.
97. Kilkelly and Donnelly, p 67.
98. See Gabe and others, above n 83, 1078.
99. See Kilkelly, above n 46, p 28.
100. See for example, Article 7 (the child's right to know and be reared by her parents); Article 9 (right to direct contract with parents following separation); Article 18 (statement of parents' common responsibility to child).
101. 'The Importance of Thinking that Children have Rights' (1992) 6 Intl J Law Policy Fam 221.
102. See U Kilkelly and L Lundy, 'Children's Rights in Action: Using the Convention on the Rights of the Child as an Auditing Tool' (2006) 18 Child Fam L Q 331.
103. Article 44(6) requires States Parties to make their reports widely available to the public within their own countries.
104. General Guidelines regarding the form and contents of Periodic Reports to be submitted by States Parties under Article 44, paragraph 1(b) of the Convention, CRC/C/58, 1996, para 42.
105. Committee on the Rights of the Child, General Comment No 4 (2003) Adolescent health and development in the context of the Convention on the Rights of the Child, CRC/GC/2003/4.
106. The Committee also emphasised (para 28) that, regardless of whether their parents or guardians consent, young people should have access to information about family planning and contraceptives as well as about the dangers of early pregnancy, the prevention of HIV/AIDS and the prevention and treatment of sexually transmitted diseases.
107. Committee on the Rights of the Child, General Comment No 7 (2005) Implementing Child Rights in Early Childhood, CRC/C/GC/7/Rev., para 14.
108. Committee on the Rights of the Child, General Comment No 12 (2009) The Right of the Child to be Heard, above n 5.
109. Children's Rights and the Developing Law, above n 13, p 46.
110. Contrast the position in respect of the United Nations Convention on the Rights of Persons with Disabilities where ratification of the Optional Protocol by the UK allows for a direct right of petition to the Committee on the Rights of Persons with Disabilities.
111. See R (on the application ofWilliamson and Others) v Secretary of State for Education [2005] UKHL 15, [80].
112. See A Parkes, 'Children Should Be Seen and Not Heard: A Reflection on the Proposed Constitutional Amendment' (2008) 11(3) Irish J Fam L 58.
113. [2005] EWCA Civ 634; [2005] FLR 1011.
114. [2006] EWHC 37 (Admin). See also Re Roddy (a child) (identification: restriction on publication) [2003] EWHC 2927 (Fam).
115. The ECHR has been incorporated in domestic law by the Human Rights Act 1998 (in the jurisdictions of the United Kingdom) and the ECHR Act 2003 (in Ireland).
116. See U Kilkelly, The Child and the ECHR (Ashgate, Aldershot 1999) 1-17.
117. G Van Bueren, Child Rights in Europe: Convergence and Divergence in Judicial Protection (Council of Europe Publications, Strasbourg 2007).
118. J Fortin, above n 15, pp 60-2.
119. See U Kilkelly, 'Article 8: the Right to Respect for Private and Family Life, Home and Correspondence' in DJ Harris and others (eds), Harris O'Boyle & Warbrick: Law of the European Convention on Human Rights (Oxford University Press, Oxford 2009), 361-424.
120. Sahin v Germany [GC] (2003) 36 EHRR 765 and Sommerfeld v Germany [GC] (2004) 38 EHRR 35.
121. Sahin v Germany [GC] (2003) 36 EHRR 765, para 73.
122. See further Kilkelly, Children's Rights in Ireland, above n 46, pp 225-9.
123. See also the ECtHR's recognition of the right of children to understand decisions made about them in the context of criminal proceedings: see T v UK (1999) 30 EHRR 121, para 84; SC v UK, ECtHR 15 June 2004, para 29.
124. C v Finland, Application No. 18249/02, May 9 2006.
125. J Fortin, above n 13, p 313.
126. Kilkelly, Children's Rights in Ireland, above n 46, p 214.
127. See Pretty v United Kingdom (2002) 35 EHRR 1, para 61.
128. See Glass v United Kingdom (2004) 29 EHRR 341, para 70.
129. (2004) 29 EHRR 341.
130. See R Huxtable and K Forbes, 'Glass v UK: Maternal Instinct vs Medical Opinion' (2004) 16 Child Fam LQ 339.
131. (2005) 43 EHRR 96. Although she was first detained in a psychiatric clinic at the age of 15, the applicant's case was concerned with detention in the period following her eighteenth birthday.
132. See M Donnelly, Healthcare Decision-Making and the Law: Autonomy, Capacity and the Limits of Liberalism (Cambridge University Press, Cambridge 2010), 220-1.
133. (2005) 43 EHRR 96, para 143.
134. Support for the need for positive action from a children's rights perspective may also be found in Mikulic v Croatia, Application No 53176/99, [2002] 1 FCR 720 where the state was found (para 65) to have failed to provide an appropriate mechanism to balance the applicant's right to have uncertainty as to her personal identity eliminated without unnecessary delay and the right of her supposed father not to undergo DNA tests.
135. On the development of positive rights under art 8, see A Mowbray, The Development of Positive Obligations under the European Convention on Human Rights (Hart Publishing, Oxford, 2004), 127-88.
136. See also U Kilkelly, 'Protecting Children's Rights under the ECHR: the Role of Positive Obligations' (2010) 61 Northern Ireland LQ 245.
137. (1988) 11 EHRR 175.
138. Children's Rights, above n 13, p 101.
139. (1988) 11 EHRR 175, para 61.
140. Children's Rights, above n 13, p 101.
141. [2006] EWHC 37 (Admin), [126].
142. Fortin, Children's Rights, above n 13, p 102.
143. R Taylor, 'Reversing the Retreat from Gillick?: R (Axon) v Secretary of State for Health (2007) 19 Child Fam LQ 81, 89.
144. See also Fortin, Children's Rights, above n 13, p 102.
145. See U Kilkelly, 'The Best of Both Worlds for Children's Rights? Interpreting the European Convention on Human Rights in the Light of the UN Convention on the Rights of the Child' (2001) 23 Human Rights Q 308.
146. See Kilkelly, The Child and the ECHR, above n 122, p 37.
147. See text following n 45 above.
148. McK v Information Commissioner [2006] I.E.S.C 2, [15.3].
149. Decision under the Freedom of Information Acts 1997-2003 in relation to Case Number 000137: Mr N McK and a Dublin Hospital. The young woman had said that 'thinking that he might get my personal information makes me physically sick'.
150. Fortin, Children's Rights, above n 13, pp 67-9, recounts the limited number of assertions of ECHR rights by children themselves.
151. Committee on the Rights of the Child, The Right of the Child to be Heard, above n 5, para 8.
152. Healthcare Choices, above n 9, p 86.
153. See, for example, the recommendations of the Queensland Law Reform Commission Consent to Healthcare of Young People (QLRC R 51, Brisbane 1996).
154. The New South Wales Law Reform Commission, Young People and Consent to Healthcare Report 119 (NSWLRC, Sydney 2008).
155. See Children and the Law: Medical Treatment (LRC CP 59, Dublin 2009) (available at www.lawreform.ie).
156. Appropriately, given the subject matter under discussion, the Commission engaged in a consultative process with children and young people: see para 1.60.