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Guidelines and Policies

Decision Making at the End of Life in Infants, Children and Adolescents Australia
Royal Australasian College of Physicians
A Policy of the Paediatrics & Child Health Division of The Royal Australasian College of Physicians. A resource guide for physicians in individual practice and in the development of policies and guidelines. Covers issues of practical decision making, conflict resolution, witholding treatment, resuscitation, competence and emergency treatment.

Statement on Withholding and Withdrawing Treatment Australia/New Zealand
Australian and New Zealand Intensive Care Society and College of Intensive Care Medicine of Australia and New Zealand

Treatment and care towards the end of life: good practice in decision making UK
General Medical Council
Comprehensive guidelines on end of life care. Useful format, extensive contents page with links to each section. Has a separate section on children and young people.

Withholding or Withdrawing Life Sustaining Treatment in Children: A Framework for Practice UK
Royal College of Paediatrics and Child Health 2004
A framework to guide management in individual cases with the aim of serving the best interests of the child. Covers background considerations: medical, ethical and legal, parental responsibilities and involving the child; the process of decision making and issues of bereavement.

Legislation

Family Law Act 1975 (Cth) s67ZC Cth
Commonwealth Govt
A parent’s power to made decisions is limited in that they cannot lawfully withold consent to treatment that would be in the child’s best interests.

Toolkits and Protocols

Critical Care decisions in fetal and neonatal medicine, 2006 UK
Nuffield Council on Bioethics
Discusses the ethical, legal and social issues raised about the treatment and care of extremely premature babies.

Withholding or Withdrawal of Life-Sustaining Treatment
The Royal Children’s Hospital, Melbourne

Withholding or Withdrawing Life Sustaining Treatment in Children: A Framework for Practice
Royal College of Paediatrics and Child Health

Cases

An NHS Trust v MB [2006] EWHC 507 (Fam) UK
Case concerning dispute between parents and doctors on withdrawal of life sustaining treatment from a fully cognisant 18 month old child with spinal muscular atrophy. At 18 months the child could not breath without mechanical ventilation and could only move his eyebrows. Parents held that the child was fully cognisant and so had quality of life. Court held that the doctors could not withdraw the mechanical ventilation but the court could require the doctors to carry out positive medical interventions.

Baby M (Victorian State Coroner’s Office, Record of Investigation into Death, Case No 3149/89, 29 October 1991) VIC
not publically available
Case of a baby born with severe complications, was largely unresponsive, had difficulties swallowing and breathing and had little spontaneous movement. The medical staff and parents decided no active treatment should be given. There was only on demand feeding and pain killers provided. The baby died after developing a respiratory difficulty. Coroner found that the baby died of natural causes and that the serious disabilities of the baby meant it would normally not be selected for surgery.

Hunter Area Health Service v Marchlewski & Anor [2000] NSWCA 294 NSW
The NSW Court of Appeal ruled that a hospital had acted properly, despite the protestations of parents, in withholding mechanical ventilation from a severely brain-damaged infant negligently asphyxiated at birth.

NHS Trust v Baby X [2012] EWHC 2188 (Fam) UK
Sedley J ordered that a child be removed from a ventilator and be given palliative care. The child had been severely injured in an accident at home and had profound and irreversible brain damage. Sedley J assessed the benefits and the burdens and found that treatment should be withdrawn in Baby X’s best interests.

Re KH (A child) [2012] EWHC B18 (Fam) UK
Application by an NHS Trust for declarations in relation to the best interests of a severely disabled child and, in particular, as to his medical treatment in the event that his condition should deteriorate. A declaration was made to authorise an advanced care plan to withdraw CPR, ventilation and antibiotics from a child severe brain damaged by viral encephalitis.

Re B (A Minor) (Wardship: Medical Treatment) [1990] 3 All ER 927 UK
not publically available
Defined the ‘welfare of the child’ as important in witholding decisions. Case where both parents and doctors decided to withhold fairly simple life saving treatment from an infant with Down syndrome. Court held that the quality of life expected after the operation was no different from any other child with Down Syndrome and was not sufficiently ‘awful’ to withhold treatment.

Re Baby D (No. 2) [2011] FamCA 176 (16 March 2011) Cth
The judge agreed that parents could authorise the removal of the tube and the sedation of Baby D on best interests grounds and that such a decision could be made by parents without judicial review.

Re J (A Minor) (Wardship: Medical Treatment) [1991] 2 WLR 140 UK
not publically available
Introduced the idea of ‘quality of life’ as a necessary consideration. Child was born prematurely, it was discovered he had hypoxic brain damage, would be quadriplegic, was blind and likely deaf and unlikely to develop more than limited intellectual abilities. Held the correct test was whether the quality of life, if given treatment, would be intolerable to the child, from the child’s perspective.

Re T (A Minor) (Wardship: Medical Treatment) [1997] 1 All ER 906 UK
not publically available
Held that the best interests of the child in witholding treatment is determined in part by the parent’s wishes given the role the parents will play in the child’s life.

TS & DS v Sydney Children’s Hospital Network (“Mohammed’s case”) [2012] NSWSC 1609 NSW
Garling J refused to force doctors to provide mechanical ventilation when parents sought an order requiring treatment for their child. Garling J was highly critical of quality of life assessments. His Honour found that the treatment would not cure Mohammed, not prevent his inevitable death but it would cause significant pain and discomfort.

Wyatt & Anor v Portsmouth Hospital NHS & Anor [2005] EWCA Civ 1181 UK
Concerned an infant who had been born 3 months prematurely. After a year she had still not left the hospital, had severe disabilities and no awareness. Her parents wanted a ventilator to be provided if she had breathing difficulties. The doctors considered it would be futile. Court held that it would not be in the infant’s interests to be ventilated.

Papers, Reports and Books

Decisions in the Gray Zone: evidence based or culture based?
(2010) 156 (1) The Journal of Pediatrics 7-9
Author: TM Burger

Discussing withholding and withdrawal of life-sustaining medical treatment in paediatric inpatients: Audit of current practice
44 (2008) Journal of Paediatrics and Child Health 399, 402
Authors: Zornitza Stark, Jenny Hyson and Mike Forrester

The legal basis for ethical withholding and withdrawing of life-sustaining medical treatment in children.
not publically available
(2006) 14 JLM 244
Author: Professor J Tibballs
This article examines selected ethical guidelines and compares them to judgments in leading cases. Looks at the legal and ethical approaches to a child’s ‘best interests’.

Perinatal care at the borderlines of viability: a consensus statement based on a NSW and ACT consensus workshop
(2006) 185 Medical Journal of Australia 9, 497
Authors: Lui et al

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