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We have taken every care to ensure that drug dosages and related medical advice in this book are accurate. However, drug and disinfectant dosages can change and are updated often, so always double-check dosages and procedures against a reliable, up-to-date formulary and the given drug’s documentation before administering it.

Palliative Care for Children: Improving the quality of life of patients and their families

First published in 2020 by Bettercare. This version produced on 26 February 2025.

Text © The PatchSA Training Team 2024

ISBN (paperback): 978-1-928313-17-5

Excluding content explicitly credited to others, this book is published under a Creative Commons Attribution Non-Commercial No Derivatives License. For details, see creativecommons.org/licenses/by-nc-nd/4.0.

This licence means you may share, copy and redistribute the material in any medium or format under the following terms:

  • Attribution — You must give appropriate credit, provide a link to the licence, and indicate if changes were made. You may do so in any reasonable manner, but not in any way that suggests the licensor endorses you or your use.
  • Non-Commercial — You may not use the material for commercial purposes.
  • No Derivatives — If you remix, transform, or build upon the material, you may not distribute the modified material.

For any other uses, please contact Bettercare.

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      1. Home
      1. How to use our books
      2. Buy printed books
      3. About Bettercare
      4. FAQs
      5. Contact us
      1. Acknowledgements
      2. Introduction
        1. About Bettercare
        2. Why decentralised learning?
        3. Free Bettercare Online Learning Platform
        4. Learning programmes
        5. Format of the courses
        6. Contributors
        7. Updating the course material
        8. Contact information
        9. Registration
      3. 1 The principles and practice of palliative care for children
        1. Contents
        2. Objectives
        3. Introduction to palliative care for children
        4. The continuum of care
        5. Categories of childhood illnesses needing palliative care
        6. Places where palliative care can be provided
        7. Levels of care
        8. Case studies
      4. 2 Ethics and decision making
        1. Contents
        2. Objectives
        3. Medical ethics in children’s palliative care
        4. Ethical dilemmas
        5. Making decisions for children in palliative care
        6. Making an ethical plan
        7. Case studies
      5. 3 Communication
        1. Contents
        2. Objectives
        3. Good communication
        4. Difficult conversations and breaking bad news
        5. Communicating with children
        6. Talking to children about illness and death
        7. Electronic communication
        8. Case studies
      6. 4 Teamwork, managing conflict and self-care
        1. Contents
        2. Objectives
        3. Understanding the basics of the team and teamwork
        4. Managing conflict
        5. Referral pathways
        6. Self-awareness, debriefing and self-care
        7. Self-care
        8. Case studies
      7. 5 Holistic assessment and palliative care planning
        1. Contents
        2. Objectives
        3. Holistic assessment
        4. The assessment process
        5. Care planning
        6. Care plans
        7. The palliative care plan
        8. Advance care planning
        9. Terminal care plans
        10. Case study
      8. 6 Psychosocial care and support
        1. Contents
        2. Objectives
        3. Assessing a child’s psychosocial needs
        4. The right to continuing education
        5. The role of the community in children’s palliative care
        6. The role of the family in children’s palliative care
        7. The need to support the siblings
        8. Principles of relating with the child and the family
        9. Case studies
      9. 7 Cultural understanding and spiritual care
        1. Contents
        2. Objectives
        3. Assessing culture
        4. Spirituality and spiritual care
        5. Assessing spirituality
        6. Planning and providing spiritual care for children
        7. Case studies
      10. 8 Pain management
        1. Contents
        2. Objectives
        3. Introduction to pain
        4. Types of pain
        5. Pain assessment in children
        6. Pain management in children
        7. Morphine use in children
        8. Management of specific pains
        9. Case studies
      11. 9 Management of respiratory and gastrointestinal symptoms
        1. Contents
        2. Objectives
        3. Signs and symptoms
        4. General approach to symptom management in children
        5. Managing shortness of breath
        6. Managing excessive respiratory secretions
        7. Managing nausea and vomiting
        8. Managing constipation
        9. Case study
      12. 10 Management of neurological, nutritional and skin symptoms
        1. Contents
        2. Objectives
        3. Managing anxiety
        4. Managing depression
        5. Managing fatigue
        6. Managing anorexia and cachexia
        7. Managing pruritus
        8. Preventing and managing pressure sores
        9. Managing fungating malodourous wounds
        10. Case studies
      13. 11 End-of-life care
        1. Contents
        2. Objectives
        3. Introduction to end-of-life care
        4. End-of-life planning
        5. Managing distressing symptoms at the end-of-life
        6. Management at the end-of-life
        7. Supporting the family at the end-of-life
        8. Case studies
      14. 12 Loss, grief and bereavement
        1. Contents
        2. Objectives
        3. Introduction to loss, grief, mourning and bereavement
        4. The grief process
        5. Supporting families in their grief and bereavement
        6. Children and grief
        7. Supporting children after death
        8. Memory making
        9. Case studies
      15. Appendix A: The International Children’s Palliative Care Network (ICPCN) charter of rights for life-limited and life-threatened children
      16. Appendix B: Communication role plays
      17. Appendix B1: Communication assessment tool
      18. Appendix B2: Self-reflection tool
      19. Appendix C: Debriefing model
      20. Appendix D: Palliative care plan
      21. Appendix E: PatchSA Advance care plan
      22. Appendix F: Using the QUESTT approach to assess the child
      23. Appendix G: Age appropriate pain rating scales
      24. Appendix H: Drug formulary
      25. Appendix I: Instructions for inserting and caring for a butterfly needle for a subcutaneous infusion
      26. Appendix J: PatchSA terminal care plan and end-of-life care plan checklist
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      5. Contact us

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