Table 1.
The Question Prompt List comprising the original 45 questions
| Nr | Section 1: Heart failure and its impact on daily life |
| 1. | What does heart failure entail? |
| 2. | Is heart failure a serious illness? |
| 3. | Is heart failure a lifelong illness? |
| 4. | What can I do to improve my prognosis? |
| 5. | What can I do to improve my condition? |
| 6. | What is the likely impact of heart failure on my future? |
| 7. | What goals are realistic for the future? |
| 8. | What symptoms might I experience when my condition deteriorates in the future, and what should I do if they occur? |
| Section 2: Help and support when the illness deteriorates | |
| 9. | Who can I talk to about things that worry or bother me? |
| 10. | Who can my family talk to about things that worry or bother them? |
| 11. | What treatment is available to me when I deteriorate? |
| 12. | What support is available to me if I deteriorate and cannot look after myself? |
| 13. | Can I choose where I want to be cared for when I deteriorate? |
| 14. | Is it possible to be cared for at home when I deteriorate? |
| 15. | What support is available to me if I choose to be cared for at home? |
| 16. | Who can help me decide about my care? |
| 17. | Who will have the overall responsibility for my care if I deteriorate? |
| Section 3: End-of-life | |
| The questions below might not apply to your current situation. You do not need to read them if you do not want to, but you might want to discuss them in the future. | |
| 18. | Will someone tell me when I am approaching the end-of-life? |
| 19. | Is it possible to predict how long someone has left to live? |
| 20. | Will my heart failure prolong the end-of-life? |
| 21. | How will I feel during my last days of life? |
| 22. | What will happen to my heart failure treatment at the end-of-life? |
| 23. | What happens in the body when you die from heart failure? |
| 24. | Are breathing problems common at the end-of-life? |
| 25. | Is pain common at the end-of-life? |
| 26. | Is it common to experience anxiety at the end-of-life? |
| Section 4. Other questions family members may want to discuss | |
| 27. | How do we agree on what the person who is ill can/should/is allowed to do? |
| 28. | If needed, how do I get help to look after the person who is ill? |
| 29. | How do I best help the person who is ill if they deteriorate? |
| 30. | Who can I turn to if I have concerns about the care given to the person who is ill? |
| 31. | Who can I talk to about things that worry and bother me? |
| The questions below might not apply to your current situation. You do not need to read them if you do not want to, but you might want to discuss them in the future. | |
| 32. | What support is there for me when the illness deteriorates, and I feel that I cannot do anymore? |
| 33. | How do I know that the end-of-life is approaching? |
| 34. | What do I reply to the question” Am I going to die now?”? |
| 35. | How do patients react when their illness deteriorates? |
| 36. | How do family members react when the illness deteriorates? |
| 37. | How do I know if the patient has died? |
| 38. | What happens with the dead body? |
| 39. | Who can help me organise the funeral? |
| Section 5. Other questions for patients with a heart failure pacemaker or an implantable cardioverter defibrillator | |
| 40. | What will happen to my implantable cardioverter defibrillator (ICD) at the end-of-life? |
| 41. | What impact will my heart failure pacemaker (CRT), pacemaker or implantable cardioverter defibrillator (ICD) have on my last days of life? |
| 42. | What will happen to my ICD/CRT/pacemaker treatment at the end-of-life? |
| 43. | How will my ICD be switched off? |
| 44. | What will happen to my heart if my ICD is switched off? |
| 45. | Can my ICD be switched off without mine or my family members’ knowledge? |
ICD Implantable cardioverter defibrillator, CRT Cardiac Resynchronisation Therapy