Oxford Textbook of Palliative Care for Children

Description

The importance of palliative care for children facing life threatening illness and their families is now widely acknowledged as an essential part of care, which should be available to all children and families, throughout the child's illness and at the end of life. The new edition of the Oxford Textbook of Palliative Care for Children brings together the most up to date information, current knowledge, evidence, and developments of clinical practice in the field. The book is structured into four sections. 'Foundations of Care' describes core issues, the foundations on which paediatric palliative care is based. 'Child and Family Care' looks at different aspects of psychological, social, and cultural care for the sick child or young person, and their family. These chapters cover the time course of the illness, around the time of death and support for the bereaved family. 'Symptom Care' focuses on the uses of medication, specific symptoms, and their management. Finally, 'Delivery of Care' examines practical approaches to care in different environments and the needs of clinicians. Two new editors join the team from Canada and South Africa, reflecting our aims to contribute towards the development of care for children across the world, and to be a resource for both experienced clinicians and those new to the field. Comprehensive in scope, exhaustive in detail, and definitive in authority, this third edition has been thoroughly updated to cover new practices, current epidemiological data, and the evolving models that support the delivery of palliative medicine to children. This includes two new chapters, looking in detail at 'Decision Making' and 'Perinatal Care', and a new section highlighting the emerging importance of 'Palliative Care for Children in Humanitarian Crises'. This book is an essential resource for anyone who works with children worldwide. cover Oxford Textbook of  Palliative Care for Children Copyright Contents Detailed contents Contributors Abbreviations Section I Foundations of care 1. History and epidemiology Introduction Definitions Hospice History Epidemiology Using these data to estimate the need for CPC services Conclusion References 2. Communication Introduction Communication as a foundation of palliative care Barriers to effective communication Establishing a relationship and the development of shared knowledge: Learning from the child and family Establishing a relationship and the development of shared knowledge: Transmission of information to the child and family Establishing a relationship and responding to emotions Identifying values and making shared decisions When should conversations about palliative care take place? Communication across cultural and language differences Communicating about prognosis Conclusion References 3. ‘Children are not small adults’—​the distinctiveness of ethics in children Introduction Decision-​making—​parental authority to request ‘harmful’ interventions—​and ditto to request futile ones Research in children Principle of double effect Euthanasia Summary References 4. Decision-​making with children, young people, and parents Introduction Decision-​making Participation of CYP in decision-​making Clinical implications In summary References 5. Culture, spirituality, religion, and ritual Introduction Definitions Influence of religion, spirituality, and culture on children with life-​limiting conditions Worldviews, cycles, and meaning of life The role of spirituality in children’s palliative care The role of religion in children’s palliative care Some faith and cultural traditions Secular beliefs Cultural and religious aspects in perinatal and neonatal palliative care Chaplains and faith leaders Cultural and religious aspects from the literature in EOL care Effect of religious and spiritual beliefs in treating physicians Cross-​cultural support An example of care and spirituality from South Africa—​a traditional African perspective Conclusion References Section II Child and family care 6. Assessment of the child and family Introduction Theoretical considerations Practical considerations Evidence-​based considerations Summary References 7. Children’s views of death Introduction Children’s views of death: A multi-​dimensional, multi-​faceted perspective Views of death in children with life-​limiting conditions and life-​threatening illnesses: Expressing their thoughts in words and deeds Well siblings’ views of death: Comparisons with ill siblings Talking with others about death: Conversations between ill children, their parents, siblings, and clinicians Suggestions for discussions with children about death and dying Talking about death with bereaved children: An additional note Conclusion Acknowledgements References 8. The psychological impact of life-​limiting conditions on the child Introduction Emotional support Clinical supervision Psychological issues Work with parents Brothers and sisters The child’s voice in decision-​making Awareness of impending death Psychotherapy—​a conceptual framework A case study Conclusion Acknowledgement References 9. Adolescents and young adults Defining adolescence and young adulthood The prevalence of LLC in AYAs Adolescence as a transition phase Normal adolescent development Challenges to adolescent development in the palliative care population Changing relationships with parents Peer group identification Independence Developing a sexual identity Spiritual identity Psychological development Supporting the transition to adulthood Facilitating peer group interaction and independence Support for sexual development Spiritual support Support for decision-​making Psychological support Respite care Advance care planning Transition to adult services The needs of professional staff and carers Service development Summary References 10. Children expressing themselves Introduction Defining and evaluating creative therapies Music therapy Art therapy Play and play therapy Communication and play with infants and children with special communication needs Working clinically with children using creative art therapies Artistic achievements as expressive acts Storytelling and narrative therapy Working with children’s strengths and abilities Nurturing fantasy and pleasurable imagination Supporting the dying child and their family Acknowledgement References 11. Education and school Introduction Why educate children who have progressive life-​limiting illnesses? How illness disrupts education Providing educational opportunities for life-​limited children Virtual learning environments (VLE) Principles of good practice to support life-limited children’s access school education 105 Conclusion References 12. Impact on the family Introduction What do we call family? Family systems Family and culture Effects of a child’s LLC on the family Living with the LLC or illness Family adjustments to a child’s LLC How can we help families? The wider context of care A challenge for the future Acknowledgements References 13. Bereavement Introduction Impact on families Impact on children and young people Manifestations of grieving adults and children Impact on schools Impact on hospitals, community providers, and hospices Helping theories of bereavement make sense Risk and resilience seesaw Time passing Concerned curiosity: A way of talking to bereaved families What helps grieving families? When families may need more help Conclusion Acknowledgements References Section III Symptom care 14. Overview of symptoms and their assessment in life-​limiting illness Introduction The importance of accurate symptom assessment The prevalence of symptoms in children with life-​limiting illness The principles of symptom evaluation Symptom measurement in children Challenges to comprehensive symptom evaluation Novel approaches to symptom evaluation Symptom evaluation in paediatric palliative care: Areas for further study References 15. Using medication in children’s palliative care Introduction Pharmacokinetic considerations in children Distribution Transport Biotransformation and metabolism Distribution Elimination Therapeutic research in children Summary References 16. Introduction to pain Introduction The history of pain and the actual definition of pain What is pain? The neurophysiology of pain Excitatory mechanisms Different types of pain Pain and the child in palliative care Assessment of the pain 160 The relationship between the carer and the patient who is in pain Conclusion References 17. Multimodal analgesia in paediatric palliative care Introduction med-9780198821311-chapter-17-div1-191toc Multimodal analgesia Procedural pain and chronic pain treatment Conclusion References 18. Opioids and the World Health Organization pain ladder Introduction Opioids: Their power and range World Health Organization (WHO) approach to pain management ‘By the child’: Taking a pain history ‘By the clock’: Regular opioids, breakthrough opioids, and the relationship between them ‘By the right route’ Special situations Summary References 19. Difficult pain: Adjuvants or co-​analgesics Introduction Combination pharmacotherapy Visceral hyperalgesia References 20. Integrative approach to pain and other symptoms Introduction Goals of integrative therapy Why should we include integrative therapies in palliative and hospice care? What are integrative therapies? Use of integrative approaches in paediatric palliative care Summary References 21. Gastrointestinal and liver-​related symptoms in paediatric palliative care Introduction Common GIT symptoms in children’s palliative care Nausea and vomiting Constipation Diarrhoea Other symptoms Intestinal failure Chronic liver disease Conclusion References 22. Feeding, cachexia, and malnutrition in children’s palliative care Introduction Definitions FTT and feeding difficulties Cachexia and anorexia Malnutrition Pathophysiology and management Conclusions References 23. Neurological and neuromuscular conditions and symptoms Introduction A palliative approach to neurological and neuromuscular conditions in children Specific conditions affecting the nervous system Symptoms of neurological impairment and neuro-​specific symptoms Non-​pharmacological management Pain, agitation, and irritability Autonomic dysfunction Seizures Spasticity and muscle spasms Dystonia Chorea Myoclonus Medication toxicities Sleep Fatigue Conclusion References 24. Depression, anxiety, and delirium Introduction Depression Ketamine Anxiety Diagnostic tools Important details concerning anti-​anxiety medications in CYP Cannabinoids Irritability and anger Delirium Mania Conclusion References 25. Cardiorespiratory symptoms Introduction Cough Tachycardia, palpitations, chest pain Fatigue, irritability, feeding intolerance The role of mechanical circulatory support Compassionate discontinuation of ventilator or MCS Case 25.1 Case 25.2 Case 25.3 Conclusion References 26. Skin symptoms Introduction Life-​threatening primary skin conditions: Congenital Other life-​threatening acquired skin disorders that would benefit from a palliative care approach include Psychosocial care and support for patients with life-​threatening primary skin conditions Secondary skin complications (dermatological symptoms in children with life-​limiting disorders) Fungating wounds and pressures sores Conclusion References 27. Haematological symptoms Introduction Symptoms associated with anaemia Management of symptomatic anaemia in palliative care med-9780198821311-chapter-27-div1-289toc med-9780198821311-chapter-27-div1-290toc Thrombosis and its management Ethical issues related to the transfusion of blood products at end of life Summary References 28. Palliative care for children with communicable illnesses Introduction Life-​threatening and life-​limiting communicable diseases in children ACT I: Potentially curable infections 305 Measles 305 Acute hepatitis 308 Severe bacterial illnesses (SBI) 308 TB 309 Malaria ACT II: Life-limiting but non-progressive (with treatment) 310 ACT III: Progressive and non-curable diseases 312 MDR-TB and XDR-TB 313 ACT IV: Non-progressive but irreversible damage—often associated severe disability 315 Zika virus infection Palliative care in neglected tropical diseases (NTDs) 317 Conclusions References Section IV Delivery of care 29. Perinatal palliative care Background Ethical considerations Diagnosis Types of antenatal diagnosis Palliative care approach to pregnancy Care Investigation and follow-​up Summary References 30. Intensive care units Introduction The role of PPC in the PICU Who should receive palliative care in the PICU? When children die in the PICU Communication issues Family-​centered care in the PICU Providing and respecting family choice with regard to place of care Transferring a child to home or hospice for withdrawal of mechanical ventilation Summary Acknowledgement References 31. Planning care Introduction Benefits of planning in children’s palliative care (CPC) Palliative care planning across the continuum of disease 342 Possible triggers for care planning ACP Barriers to ACP Approaching ACP discussions Patient assessment Clinical circumstances Place of care Special considerations Palliative care in humanitarian disasters Conclusion References 32. Care in the final hours and days Introduction Changes in the goals of treatment Requests for hastened death Anticipating likely symptoms Lines of communication Palliative care emergencies Setting for care in the final phase of life References 33. Delivering care around the world Introduction The history of CPC Identifying the need for CPC globally The status of CPC globally Challenges to the provision of CPC globally CPC in LMICs Developing CPC globally Conclusion References 34. Healthcare providers’ responses to the death of a child The myth The reality Aspects of healthcare providers’ suffering A model of healthcare providers’ grieving process Conclusion References 35. Teamwork Introduction Thinking about teams Limitations of teams? Delivery of paediatric palliative care Key challenges Communication Managing conflict Conflict and caring in paediatric palliative care Leadership A secure base in the face of uncertainty and loss Conclusion References 36. Education Introduction: Why are education and training important? Who needs education and training? How should education and training be delivered? What should education and training in PC for children include? How do we measure effectiveness of children’s PC education? Summary References 37. Quality improvement in paediatric hospice and palliative care Introduction Quality in healthcare Quality in hospice and palliative care Embarking on QI: Translating knowledge into practice Implementing change Challenges and opportunities: The future of QI in paediatric palliative care Conclusions QI resources References 38. Research in children’s palliative care Introduction Importance of CPC research and priority areas Challenges to CPC research Strategies to overcome challenges Advice to novice and reluctant researchers Future directions References Appendices Appendix 2: Morphine equivalence single dose Appendix 3: SC infusion drug compatibility Appendix 4: Gabapentin to pregabalin switch for neuropathic pain Appendix 5: Benzodiazepines References Index Section-1.pdf med-9780198821311_1.pdf Section-2.pdf med-9780198821311_1a.pdf med-9780198821311-B2_1.pdf med-9780198821311-chapter-15.pdf med-9780198821311-chapter-16.pdf med-9780198821311-chapter-17.pdf med-9780198821311-chapter-18_Final.pdf med-9780198821311-chapter-19.pdf med-9780198821311-chapter-20.pdf med-9780198821311-chapter-21.pdf med-9780198821311-chapter-22.pdf med-9780198821311-chapter-23.pdf med-9780198821311-chapter-24.pdf med-9780198821311-chapter-25.pdf med-9780198821311-chapter-26.pdf med-9780198821311-chapter-27.pdf med-9780198821311-chapter-28.pdf med-9780198821311-chapter-29.pdf med-9780198821311-B4.pdf Appendix.pdf 01_9780198821311_indexNew.pdf