Table 2.
Patient-reported end of life needs for adolescents living with HIV/AIDS
| Question | Important N (%) | Not important/or don’t know N (%) |
|---|---|---|
| How important would each of the following be to you if you were dealing with your own dying? | ||
| Family/friends visiting me | 44 (92) | 4 (8) |
| Staying in my own home | 41 (85) | 7 (15) |
| Honest answers from your doctor | 46 (96) | 2 (4) |
| Comfort from church services or persons such as a minister, priest, imam or rabbi | 31 (65) | 17 (35) |
| Planning my own funeral | 32 (68) | 15 (32) |
| Being able to complete an advance directive that would let loved ones know my wishes | 44 (92) | 4 (8) |
| Fulfilling personal goals/pleasure | 46 (96) | 2 (4) |
| Reviewing your life history with my family | 39 (81) | 9 (19) |
| Having healthcare professionals visit you at your home | 41 (85) | 7 (15) |
| Understanding your treatment choices | 46 (96) | 2 (4) |
| How important are each of the following to you when you think about dying? | ||
| Being physically comfortable | 43 (90) | 5 (10) |
| Being free from pain | 46 (96) | 2 (4) |
| Saying everything I want to say to people in my family | 45 (94) | 3 (6) |
| Being at peace spiritually | 45 (4) | 3 (6) |
| Not being a burden to loved ones | 42 (88) | 6 (12) |
| Knowing how to say good bye | 42 (88) | 6 (12) |
| Having a sense of my own worth or value | 42 (88) | 6 (12) |
| Being off machines that extend life, such as life support | 34 (71) | 14 (29) |
| Dying a natural death | 37 (77) | 11 (23) |
| Agree | Disagree/don’t know | |
| How strongly do you agree or disagree that if someone could tell me when I would die, I would want to know? | 22 (46) | 26 (54) |
| I would only take pain medicines when the pain is severe. | 31 (65) | 17 (35) |
| I would take the lowest amount of medicine possible to save larger doses for later when the pain is worse | 26 (54) | 22 (46) |
| I am afraid I will become addicted to the pain medicines over time. | 4 (8) | 42 (92) |
| When you think about death and dying, how concerned are you that you will be a burden to, or overload, my family or friends? | Concerned 22 (46) |
Not Concerned/don’t know 26 (54) |
Responses on Likert scale ranged from 1=very important, 2=somewhat important, 3=neither important nor unimportant, 4=not very important, 5=not at all important, 8=don’t know. Then regrouping as dichotomous response in the table as important=1 and 2, not important or don’t know=3, 4 and 5.