Consent, rights, and choices in health care for children and young people

Annotation This books gives guidance for doctors and other health professionals who are involved in providing health care for children and young people. The books sets out best practice guidance, and explains that children and young people should be allowed to participate in decisions about their health care to the extent they wish. It explains who can give consent to treatment on behalf of a person under 18 and when children and young people can seek health care and advice independently. It also explores the issue of refusal of treatment; what parents are entitled to refuse on behalf of their young children, and what to do if young people refuse treatment. A comprehensive summary of chapters provides quick reference for the key ethical and legal issues Contents......Page 6 List of cases......Page 13 List of statutes and regulations......Page 17 Membership of the Steering Group......Page 19 Editorial Board......Page 21 Introduction......Page 24 1.1 Focus of the book: children and young people......Page 32 1.1.1 Decision making in context......Page 33 1.2 Facets of established good practice......Page 34 1.2.1 Summary of good practice......Page 38 1.3.1 Minors’ rights in the context of parental autonomy......Page 39 1.3.2 Ethical and practical considerations......Page 41 1.3.3 Why assessment of minors’ rights can be complex......Page 43 1.3.4 Equity, non-discrimination and other important rights......Page 44 1.3.6 Summary of minors’ basic health rights......Page 45 1.4 Consent to and refusal of treatment......Page 46 1.4.2 When can patients refuse treatment?......Page 48 1.4.3 Why are mature children and young people treated differently from adults?......Page 50 1.4.4 Exceptionally grave decisions......Page 51 1.4.5 The welfare of the child......Page 53 1.5 Criteria for valid decision making......Page 54 1.5.1 Weighing “benefits” and “burdens”......Page 55 1.6 Involving minors in health care decisions......Page 56 1.6.1 When should minors be protected from decision making?......Page 57 1.7 Summary......Page 59 2: The law on children, consent and medical treatment: England, Wales and Northern Ireland......Page 62 2.1 When treatment can be given......Page 63 2.2 Consent from competent young people......Page 64 2.2.1 Limits on young people’s rights to choose......Page 66 2.2.2 A statutory right to refuse......Page 69 2.2.3 Comment on the law......Page 70 2.3.1 Parental responsibility......Page 72 2.3.2 Limits on parental rights......Page 73 2.5 Consent from the courts......Page 77 2.5.1 Mechanisms for court involvement......Page 78 2.5.2 Welfare and proportionality......Page 80 2.5.3 When to go to court......Page 81 2.6 Summary......Page 82 3: The law on children, consent and medical treatment: Scotland......Page 85 3.1 When treatment can be given......Page 86 3.2 Consent from competent young people......Page 87 3.2.1 Competence......Page 88 3.2.2 Confidentiality......Page 90 3.2.3 People over 16......Page 91 3.2.4 Refusal by competent young people......Page 92 3.2.5 A statutory right to refuse......Page 93 3.3.1 Parental responsibilities......Page 94 3.3.2 Limits on parental rights......Page 95 3.5.1 Mechanisms for involvement......Page 100 3.5.2 Limits on the powers of courts and children’s hearings......Page 103 3.5.3 When to go to court......Page 104 3.6 Summary......Page 105 4.1 Patients’ rights to confidentiality......Page 110 4.1.2 Limits on confidentiality......Page 112 4.1.3 Involving parents......Page 113 4.2.2 Access to records......Page 114 4.3.1 Confidentiality and suspected abuse......Page 116 4.3.2 Child protection case conferences......Page 118 4.5 Visual and audio recordings......Page 119 4.5.1 Media and publicity......Page 120 4.6 Summary......Page 121 5: Involving children and assessing a child’s competence......Page 123 5.1.1 Coercion and undue influence......Page 124 5.2 A practical approach to assessing competence......Page 125 5.3 Growth in level of understanding......Page 128 5.4 Factors affecting competence......Page 129 5.4.1 The role of information......Page 130 5.5 Enhancing competence......Page 132 5.6 Summary......Page 134 6.1.1 Refusal by parents......Page 137 6.1.2 Refusal by competent young people......Page 138 6.1.3 Refusal of blood products......Page 140 6.1.4 Providing treatment when the patient refuses......Page 142 6.2.1 Withdrawing and withholding life-prolonging medical treatment......Page 146 6.2.2 Clinical factors......Page 147 6.2.4 Legal factors......Page 150 6.2.5 Once a decision has been made......Page 153 6.3.1 Refusal of treatment......Page 154 6.3.2 Withdrawing and withholding treatment......Page 155 7: Mental health care of children and young people......Page 158 7.1.1 The relevance of general ethical principles......Page 159 7.1.2 Establishing trust......Page 160 7.2.1 Risk of social stigma......Page 162 7.2.2 Confidentiality......Page 163 7.3 Consent and refusal of mental health care......Page 164 7.4 Overlapping legal frameworks for authorising mental health care......Page 167 7.4.1 Treatment within the Mental Health Act or outside it: which is best?......Page 170 7.4.2 Advantages and drawbacks: the Children Act......Page 172 7.4.3 Advantages and drawbacks: the Mental Health Act......Page 175 7.5 Practical aspects of mental health care......Page 178 7.6 Safeguards for particular medical treatments......Page 179 7.6.2 Electroconvulsive therapy (ECT)......Page 180 7.7 Timely access to services......Page 181 7.8 Appeals and complaints......Page 182 7.9 Summary......Page 183 8.1.1 Balance and proportionality......Page 186 8.1.2 Avoiding harm......Page 187 8.2.1 Assessing “benefit” and “best interests”......Page 189 8.2.2 Bone marrow and regenerative tissue......Page 191 8.2.4 Seeking consent: competent minors......Page 192 8.2.5 Parental consent......Page 193 8.2.6 The need for dispassionate assessment of risk and benefit......Page 194 8.3.2 Advisory role of health professionals......Page 196 8.3.3 Young people with learning difficulties......Page 197 8.3.4 Contraceptive sterilisation......Page 198 8.3.5 Surgical responses to menorrhagia......Page 200 8.3.6 Abortion......Page 201 8.4 Genetic testing......Page 204 8.4.1 Carrier testing......Page 205 8.4.2 Predictive testing for late onset disorders......Page 206 8.5.2 Assessment of age......Page 208 8.6 Ensuring best practice......Page 209 8.7 Summary......Page 210 9.1.1 Who decides?......Page 214 9.1.2 “Therapeutic” and “non-therapeutic”......Page 215 9.1.3 Concerns for vulnerable participants......Page 217 9.1.4 The ethical basis for research......Page 218 9.1.5 Guidelines on research involving children......Page 219 9.1.6 Benefits and burdens......Page 220 9.2.1 Records-based research......Page 222 9.2.2 Research involving healthy children......Page 223 9.2.3 Research involving sick children......Page 225 9.2.4 Psychiatric research......Page 226 9.2.5 Genetic research......Page 227 9.2.7 Research involving human material......Page 228 9.3.1 Competent children and young people......Page 230 9.3.2 Incompetent minors/parental consent......Page 231 9.3.3 Legal aspects of parental consent......Page 233 9.4 Safeguards......Page 234 9.4.2 Continuing review......Page 235 9.4.3 Reporting and investigating adverse incidents......Page 236 9.5 The boundary between treatment and research......Page 237 9.6.1 The duty of candour......Page 238 9.6.3 The concept of “acceptable risk”......Page 239 9.6.5 The medical duty to act only within one’s sphere of competence......Page 240 9.7.1 Summary of guidance on paediatric research......Page 242 9.7.2 Summary of innovative treatment......Page 243 10.1 School health services......Page 247 10.2 Confidentiality......Page 248 10.2.1 Inspection and monitoring of standards......Page 250 10.3 Consent......Page 251 10.3.2 Implied consent for immunisation......Page 252 10.4 Medicines......Page 253 10.5 Drug misuse......Page 255 10.6 Summary......Page 256 11.1.1 Involving children and young people in decision making......Page 259 11.1.3 Children’s refusal of information......Page 260 11.1.5 Involving families......Page 261 11.1.7 Emergencies......Page 262 11.3.1 Best interests......Page 263 11.4.1 Disputes......Page 264 11.4.3 The parents’ role......Page 265 11.5 Withdrawing and withholding treatment......Page 266 11.6.2 Confidentiality of other family members......Page 267 11.7 Mental disorder......Page 268 11.8.1 Informed consent......Page 269 11.9 Further advice......Page 270 Examination or assessment for child protection purposes......Page 271 Useful addresses......Page 278 B......Page 285 C......Page 286 D......Page 289 F......Page 290 I......Page 291 M......Page 292 P......Page 293 R......Page 294 T......Page 296 Y......Page 297