Irene Tuffrey-Wijne qualified as a nurse in Amsterdam, and moved to the UK in 1985. She holds a first degree in Palliative Care Nursing and completed a PhD in the palliative care of people with intellectual disabilities at Maastricht University, The Netherlands. Irene has extensive clinical experience in the fields of both intellectual disabilities (as a support worker and home manager) and palliative care (as a clinical nurse specialist at a hospice). She now works as a Senior Research Fellow at St George's University of London, leading a programme of research aimed at improving health care and end of life care for people with learning disabilities. She is chair of the Palliative Care for people with Learning Disabilities Network. She is also author of Living with Learning Disabilities, Dying with Cancer and lives in London with her husband and three children.
Section 1. Introduction. 1. Introduction. 2. What Is Bad News? 3. Developing a New Model for Breaking Bad News. Section 2. A Model for Breaking Bad News. 4. Summary of the Model. 5. Component 1:Building a Foundation of Knowledge. 6. Component 2: Capacity and Understanding. 7. Component 3: The People Involved. 8. Component 4: The Support Needed. Section 3. Your Questions Answered. 9. What Is Knowledge? 10. How Can We Break Knowledge Down into Chunks? 11. When Can We Start Building Knowledge? 12. Who Can Give Chunks of Knowledge? 13. How Many Chunks of Knowledge Should We Give? 14. How Much Can Someone with Learning Disabilities Understand? 15. Is It Important that the Person Knows and Understands the Information? 16. Can Someone Be Harmed by Receiving Too Much Information? 17. What About Sudden Bad News? 18. What If Family, Care Staff and Professionals Disagree About Breaking Bad News? Section 4. Examples. 19. Using the Model in Practice. 20. Example 1: Jeremy and Christina Have Cancer. 21. Example 2. 22. Example 3. Section 5. Appendices. 23. Flow Chart: A One-Page Overview. 24. The Mental Capacity Act. 25. How Is This Model Different from Existing Models for Breaking Bad News? 26. Resources.
As a parent, I wish I had been able to use this book by Dr Irene Tuffrey-Wijne when my daughter was slowly dying. Her guidelines are realistic, reassuring and rooted in a deep understanding of the highly individual needs of people with intellectual disabilities. It makes total sense to me that breaking bad news is a process, not an event. It demonstrates that it is possible to support someone with intellectual disabilities to come to terms with painful issues.
