1. Infants and Children: Consent and Legal Issues at End of Life Catherine Ghent Partner Gallagher Shatter Solicitors

2. What is a child?

3. The child in Irish Law Age of Majority Act 1985- 18 years Expectations change over time and vary still Education and Welfare Act Criminal Law 2001 Children Act Protection of Young Persons (Employment) Act

4. Consent Adults (over age of 16) must give consent to medical treatment To treat in absence of consent except in a medical emergency is unlawful Competent adults may withhold consent

5. Consent and Children : who provides Guardianship of Infants Act 1964 Children and Family Relationship Act 2015 1991 Child Care Act 2007 Child Care (Amendment) Act – s. 43A foster-carers 2001 Mental Health Act s. 25 1997 Non Fatal Offences Against the Person Act s. 23

6. Status of the Child in Irish Law Article 42A of Constitution 1. The State recognises and affirms the natural and imprescriptible rights of all children and shall, as far as practicable, by its laws protect and vindicate those rights 2. 1. In exceptional cases, where the parents, regardless of their marital status, fail in their duty towards their children to such an extent that the safety or welfare of any of their children is likely to be prejudicially affected, the State as guardian of the common good shall, by proportionate means as provided by law, endeavour to supply the place of parents, but always with due regard for the natural and imprescriptible rights of the child 2.2 Provision shall be made by law for the adoption of any child where the parents have failed for such a period of time as may be prescribed by law in their duty towards the child and where the best interests of the child so require.

7. Other Constitutional provisions 3. Provision shall be made by law for the voluntary placement for adoption and the adoption of any child. 4.1 Provision shall be made by law that in the resolution of all proceedings – (i) brought by the State, as guardian of the common good, for the purpose of preventing the safety and welfare of any child from being prejudicially affected, or (ii) concerning the adoption, guardianship or custody of, or access to, any child, The best interests of the child shall the the paramount consideration 4.2 Provision shall be made by law for securing, as far as practicable, that in all proceedings referred to in subsection 1 of this section in respect of any child who is capable of forming his or her own views, the views of the child shall be ascertained and given due weight having regard to the age and maturity of the child.

8. Threshold for state intervention North Western Health Board v HW and CW [2001] Parents of a fourteen-month old child had refused to permit the administration to their child of the P.K.U. screening test. Effect: even where something was clearly demonstrated to be in child’s best interests, was not sufficient to override parental objection Hardiman J: “conscientious disagreement” not enough Murray J. “there must be some immediate and fundamental threat to the capacity of the child to continue to function as a human person…deriving from an exceptional dereliction of duty on the part of the parents to justify such an intervention”

9. Children’s Referendum Article 42A Has substantially changed basis for intervention Important change: failure not necessarily blameworthy Lowers test for intervention Best interests test of child now definitively paramount Right of child to family life and vice versa is not removed and regard must still be had to the views of parents

10. Children’s Right to Participate Acknowledged in international and Irish Law UNCRC- Evolving capacity of the child FN and EB and CO, HO and EK [2004] established right to be heard in family law proceedings U.A. v U.T.N. [2011] IESC 39 Z.D. v. K.D., [2008] 4 I.R. 751 Child has right to be heard but this does not mean their views will necessarily be acted on by the courts – test is best interests

11. The Mature Minor Gillick versus Western Norfolk and Wisbech Area Health Authority [1985] Recognition in Ireland seems incremental S. 23 Non Fatal Offences Against the person Act Issues arising from designation of 16 years olds as adults for purpose of treatment in some instances but not others Capacity is key

12. Fraser Guidelines: UK arising from Gillick case 1. Understands all aspects of the advice 2. Cannot be persuaded to tell their parents 3. Very likely to begin sexual intercourse even in absence of contraceptives 4. Unless receives advice and treatment, health is likely to suffer 5. It is on the “best interests” of the child/young person to receive contraceptive advice.

13. McK v Information Commissioner [2006] Views of a 17 year old are “very relevant” May override parents presumed entitlement to health care information

14. D v Brennan and Ors [2007] Applicant 17 years old and constitutional rights are waxing to full maturity and those of a parent waning

15. Guide to Professional Conduct and Ethics medical council 2009 43.1: “children and young people should be involved as much as possible in discussions about their healthcare. When you are talking to a child or young person, it is important to give them information in an age-appropriate manner, listen to their views and treat them with respect.”

16. National Consent Policy 2014 Only in exceptional circumstances should care be provided to a minor without parental consent or knowledge Refusal of health services by a minor Involve parents +/- legal advice 16-18 year old Refusal should be accepted unless life threatening Involvement of advocacy services +/- 3 rd party mediator High court

17. Child’s right to refuse treatment “consent to medical treatment is required in the case of the competent person… and as a corollory there is an absolute right in a competent person to refuse medical treatment even if it leads to death” O’Flaherty J re Ward of Court (no 2) [1996] Courts reluctant to allow children to make decisions that would lead to their death “best interests” principle applies

18. Irish case law Re E (a minor) (Wardship medical treatment) [1993] 15 year old Jehovah’s witness refused blood transfusion “of sufficient intelligence to make medical decisions” but “ does not have full understanding of the whole implication of what the refusal of that treatment involves” June 2014 case before Irish High Court re. Parents of terminally ill child opposed HSE plan for DNR order

19. UK case law: likely Irish courts will follow A (children) [2000]: conjoined twins Wyatt [2004] NHS Trust and A (a child) 2007 Hannah Jones 2008

20. Decision making at end-of-life 71% of deaths from life-limiting conditions occur <1 year 2/3 children with life-limiting conditions have a disability

21. Surrogate Decision Making Pure Autonomy standard Substituted Judgement standard Best interests standard Balance between beneficence and nonmaleficence

22. The Best Interest Standard Now constitutionally enshrined in Irish law International Law – United Nations Convention on the Rights of the Child Article 3 – the best interests of the child as a primary consideration European Convention on Human Rights Act 2003

23. Secure care cases The High Court has, since 1995 authorised detention where a child has been deemed to place their own or the lives of others at risk This is civil detention and the tests are best interests There must be a therapeutic benefit DG v Ireland ECHR HSE v D.K. [2007]

24. Best Interests Test Does not necessarily equate to the preferences of the child or family but should ensure protection of the rights of the child. Best interests can consider emotional, social and psychological benefit Law Reform Commission (2011) Children and the Law: Medical treatment

25. Difficulties with Best interests standards Subjective Personal prejudice Conflicts of interests

27. Best interests of the child versus the interests of the family and community Art 41.1.1 “the state recognises the Family as the natural primary and fundamental unit of society” 1948 UN Declaration of Human Rights “The family is the natural and fundamental group unit of society and is entitled to protection by society and state” Courts as final arbiter

28. Family Well being of family interconnected and co-dependent “child as social actor” Imperfect but no reasonable alternative

29. Better decision making process Communication Open discussion re prognosis Parental involvement in EOL planning ? Healthcare surrogate

30. Glass v United Kingdom [2004] Article 8 of European Convention of Human Rights Administration of Diamorphine against parents wishes interfered with his right to respect for his private life and right to physical integrity.

31. Conflict between family and healthcare professionals Courts seek best interests rulings Welfare of the child paramount concern Respect for sanctity of life imposes presumption in favour of preserving life Would the Irish courts sanction steps to terminate life if such a choice arose – UK A (children) conjoined twins

32. But…… “The courts do not instruct doctors how they should perform their duties. However the courts are ready to assist with the taking of responsibility in cases of great anxiety such as this” Re C [1996]

34. Conclusion Children have a right to have their views heard and considered The child’s “best interests” should prevail in all decisions The interests of the child and family are interdependent