Contents
Preface	s3
Executive summary	s4
Introduction	s6
Background considerations	s6
Definitions	s6
The extent of withholding and withdrawal of LST in paediatric practice	s6
The legal framework	s7
Statutes	s7
The child and young adult	s8
Parental Responsibility	s8
The role of the courts in end-of-life decision making	s9
Best interests	s9
Quality of life and legal decisions	s9
Withdrawing treatment	s9
The ethical framework	s10
Fundamental considerations	s10
The interests of the child	s10
Parental discretion responsibilities, rights, duties and power	s10
Parental interests, wishes and professional duties	s11
Involving children	s11
Children with disabilities	s11
Transition to adult services	s12
Axioms on which to base best practice	s12
The process of decision making	s13
Practical considerations; substantial issues in decision making	s13
To withhold, to withdraw or to limit?	s13
Dealing with uncertainty	s13
Situations in which it is appropriate to limit treatment	s13
Spectrum of decisions and parental discretion	s14
Practical aspects of end-of-life care: responsibilities, treatments that may be limited, appropriate or permissible actions	s15
Clinical responsibilities of the healthcare team	s15
The range of treatments that may be withdrawn	s15
Cardiopulmonary resuscitation	s15
Clinically assisted nutrition and hydration	s16
Muscle relaxants and end-of-life care	s16
Palliative care	s16
Organ donation	s17
Practical aspects of decision making	s17
The basis of decision making by teams	s17
Obtaining second opinions	s17
Resource considerations	s18
Communication as part of decision making	s18
Resolution of different opinions	s19
Medical input	s19
Bereavement	s20
Families	s20
The healthcare team	s20
Key goals in the provision of bereavement support	s20
Future practicalities	s21
Training	s21
Resources	s21
Research/audit	s21
Clinical ethics services	s21
References	s21
Appendix 1: Suggested bereavement resources	s23