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Pediatric Hospice Palliative Care Guiding Principles and Norms of Practice

Paper Format and PDF format: 66 pages. Published 2006.

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This document is designed to guide health care professionals in establishing standards of practice, service delivery, program and policies for pediatric hospice palliative care, regardless of whether that care is delivered at home, in a hospital, in a long term care facility, or in a hospice. Its goal is to promote a standard consistent approach to pediatric hospice palliative care in Canada.

This document is designed to guide health care professionals in establishing standards of practice, service delivery, program and policies for pediatric hospice palliative care, regardless of whether that care is delivered at home, in a hospital, in a long term care facility, or in a hospice. Its goal is to promote a standard consistent approach to pediatric hospice palliative care in Canada.

Table of Contents Background What is pediatric hospice palliative care? How does hospice palliative care for children differ from hospice palliative care for adults? What is the role of pediatric hospice palliative care during illness? Guiding Principles of Pediatric Hospice Palliative Care The Square of Care: a Conceptual Framework I. Child and Family Care 1. Illness/Disease Management 2. Physical Care (including pain and symptom management) 3. Psychosocial Care 4. Social Care 5. Spiritual Care 6. Developmental Care 7. Practical Care 8. End of Life/Preparation for Death Care 9. Loss, Grief, Bereavement Care II. The Process of Providing Care 10. Assessment 11. Information-sharing 12. Decision-making 13. Therapeutic Interventions 14. Care Delivery 15. Evaluation of Care III. Program Support Functions 16. Governance and Administration 17. Planning 18. Marketing and Advocacy 19. Quality Management 20. Research 21. Education 22. Caregiver Support/Worklife IV. Resources 23. Human, Physical, Technology, Clinical Resources 24. Financial Resources Appendix A Glossary of Commonly Used Terms Appendix B Informed Consent Appendix C Cultural Care Appendix D Techniques for Negotiating Issues Influenced by Culture that are Important in End of Life Care Appendix E Bereavement Risk Assessment Appendix F Quality Management Appendix G Research Priorities and Questions References

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Item # 0637E

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