1. Withholding or Withdrawing Life Sustaining Treatment in Children October 4 th 2007

2. “(The purpose of medicine is) to do away with the sufferings of the sick to lessen the violence of disease & to refuse to treat those who are overmastered by their disease.” Hippocrates

3. www.rcpch.ac.uk/doc.aspx?id_Resource=2002

4. “The framework is not a prescriptive formula….. But an attempt to guide management in individual cases with the fundamental aim to consider and serve The best interests of the child” RCPCH 2004

5. 14 year old girl with myoclonic form of epilepsy Cognitively competent Treatment options discussed with adolescent and family Advantages and Disadvantages of each discussed Most effective treatment sodium valproate Parents wish trial of sodium valproate Adolescent does not wish this on side effect risk and requests one of the other treatment options instead. Realises that risk of seizure control is less and the implications of this.

6. 18 month old boy Diagnosed aged 7 weeks with SMA type 1 Had developed to smile, cry, move limbs By 10 months age - IPPV via ETT, PEG fed Dependent fully including for clear all secretions 18 months – irregular following with eyes but cannot open eyes fully Probable recognise carers + derive pleasure from them Some pleasure from particular toy Hears – presume with pleasure Feels gentle strokes to back of hand Assumed to have age appropriate cognition

7. Underlying Principle?

8. Remains “The Best Interests of the Child” Ethical decisions: “…must be made by the doctors concerned. Judges are neither qualified…required...nor entitled to make ethical judgements or decisions.”

9. In this case: 10 professional witnesses + 4 expert witnesses agree Best interests to withdraw active treatment. Refused to make order to discontinue ventilation BUT Lawful that procedures beyond this need not be given! Why?

10. In this case: 10 professional witnesses + 4 expert witnesses agree Best interests to withdraw active treatment. Refused to make order to discontinue ventilation BUT Lawful that procedures beyond this need not be given! Why? Presumption of cognitive normality thus judge’s CURRENT opinion best interests of THIS child is to maintain ventilation

11. RCPCH – 2004 5 scenarios where consider withhold / withdraw care:- “Brain Death” Permanent Vegetative State The “No Chance” Situation The “No Purpose” Situation The “Unbearable” Situation Ethics Advisory Committee

12. “ Withholding and withdrawal of life sustaining treatment are equivalent.”

13. “ Withholding and withdrawal of life sustaining treatment are equivalent.” ie: no legal distinction Acknowledged by Justice Holman 2006

14. Ethical Framework - No single framework but:- 3 Fundamental Principles apply

15. Ethical Framework 1)Duty of Care – in partnership with those with parental responsibility (PR) Generally (not always) favours life Comfort and prevent pain/suffering Ascertain wishes child + carer Serves child’s best interests

16. Ethical Framework 2)Legal Duty - Bound by legal framework often inconsistent – precedent (UK) Children Act welfare of child paramount regard to wishes of child mature & informed, can refuse parental responsibility European Court of Human Rights Bolam test!

17. Ethical Framework 3)Child’s Rights –UNCRC (1989) lays out principles for treating children Not specifically applicable to UK court right to highest standards of health & totreatment & to rehab (subject to resources) & to info. In media of their choice & to their views being given due weight

18. Withdrawing / Withholding Care Make distinction between:- Euthanasia Murder Manslaughter From the double effect of palliative procedures

19. Other legal considerations:- Parental Responsibility Views of the Child – competence Mental Capacity (Act applies to over 16’s)

20. Parental Responsibility Those with PR can consent (only needs 1 with PR to consent) Mother (+ biological father if married) (+ unmarried biological father if contact order, residence order, or PR agreement Adoptive parents Guardian (with CO or RO) Holder of EPO Local Authority (Care order) The Court Lose PR via court, children being adopted,

21. Views of the Child (Competence) Competence implies:- Able to express choice between alternatives Understands risks and benefits of alternative choices Demonstrates rational, logical reasoning The choice is “reasonable” Choice is made without coercion “moral & intellectual maturity of the 14 yr. old approaches that of the adult” Justice Douglas 1972 Nb: Gillick

22. “Given that most adolescents have the capacity necessary to make competent health care decisions, the ethical physician should respect this and allow the competent adolescent the right to exercise autonomy.” Doig & Burgess 2000 (CMAJ)

23. Making Decisions ALWAYS ACT WITH BEST INTERESTS OF CHILD AT HEART OF DECISIONS Involve all the health care team(s) - openness Base decisions on knowledge Share information with child and family Useful to outline / document benefits and burdens of treatment Second opinion if necessary – not a legal requirement Advise seek legal advice (“Trust” lawyer) The 5 circumstances for withhold/withdraw (see lawyer if not) Remain flexible to changes in circumstances

24. Each case is individual and unique Legal advice if: dispute between those with PR dispute between those with PR and clinicians dispute in the clinical team Novel or repercussive elements

25. Resolving differences of opinion Analyse where this originates Seek input of others if required – expert external if necessary Family may prefer to seek own second opinion (independent) Family at liberty to change clinician if necessary If clinicians and family/child cannot agree – Courts should be consulted CAFCASS may offer advice

26. Conclusions Central are the “Best interests” of the child Complex and ultimately unique to each individual case “the current case law and statutes do not give any clear guidance to resolve the problem. They tell you the principles to apply but not how these principles apply to your case.” cited by Elias-Jones and Samanta 2005 Bolam principle ( hence the importance of the RCPCH framework)

27. Where parents and doctors cannot agree on a course of treatment for a child who lacks the capacity to decide for him(her)self, it is the duty of the court to make an independent and objective decision. The test to be applied is the best interests of the patient. Wyatt vs. Portsmouth Hospital NHST