Table 2.
Caregiver Responses to Interview Questions (Optimal Responses and Suboptimal Responses Were Recorded in the First and Second Columns, Respectively)
| Question | Yes | No | Not answered |
|---|---|---|---|
| Was there always a doctor in charge of the patient’s care? | 39 (95.1%) | 2 (4.9%) | 0 |
| Was it always clear to you which doctor was in charge of their care? | 26 (65.0%) | 14 (35.0%) | 1 |
| Was there enough help available to meet their personal care needs like bathing, dressing, feeding, and going to the bathroom? | 29 (76.3%) | 9 (23.7%) | 3 |
| Was there enough help with medications and getting dressings changed? | 36 (90.0%) | 4 (10.0%) | 1 |
| Did someone from the hospice/hospital/nursing home talk with you about your religious or spiritual beliefs in a sensitive manner and for an appropriate amount of time? | 29 (72.5%) | 11 (27.5%) | 1 |
| Did a doctor, nurse, or other health professional appropriately address how you might feel after the patient’s death? | 30 (81.1%) | 7 (18.9%) | 4 |
| Did a doctor, nurse, or other professional staff taking care of the patient suggest someone you could turn to for help if you were feeling stressed? | 22 (53.7%) | 19 (46.3%) | 0 |
| Was there ever a time when one doctor or nurse said one thing about treatment of pain and another said something else? | 2 (5.7%) | 33 (94.3%) | 6 |
| Was there any problem with doctors or nurses not knowing enough about the patient’s medical history to provide the best possible care? | 6 (15.0%) | 34 (85.0%) | 1 |
| Was there ever a decision made about the patient’s care without enough input from them or their family? | 1 (2.5%) | 39.0 (97.5%) | 1 |
| At any time while the patient was involved with hospice/hospital/nursing home would you have liked to receive more information about what to expect while they were dying? | 9 (22.5%) | 31 (77.5%) | 1 |
| At any time while the patient was involved with hospice/hospital/nursing home would you have liked to receive more information about what to do at the time of their death? | 8 (20.0%) | 32 (80.0%) | 1 |
| At any time while the patient was involved with hospice/hospital/nursing home would you have liked to receive more information about the medicines that would be used to manage their pain, shortness of breath, or other symptoms? | 9 (23.1%) | 30 (76.9%) | 2 |
| Question | Right amount | Too little/too much | Not answered |
| Did the patient receive too much, too little, or just the right amount of medication for their pain? | 28 (90.3%) | 3 (9.7%) | 10 |
| How much support in dealing with your feelings about the patient’s death did the doctors, nurses, and other professional staff taking care of them, provide? | 36 (90.0%) | 4 (10.0%) | 1 |
| Question | Always | Usually/sometimes/never | Not answered |
| How often were the patient’s personal care needs taken care of as well as they should have been? | 28 (70.0%) | 12 (30.0%) | 1 |
| How often was the patient treated with respect by those who were taking care of them? | 39 (95.1%) | 2 (4.9%) | 0 |
| How often was the patient treated with kindness by those who were taking care of them? | 39 (95.1%) | 2 (4.9%) | 0 |
| How often were you or other family members kept informed about the patient’s condition? | 28 (73.7%) | 10 (26.3%) | 3 |
| Question | Never | Usually/sometimes/always | Not answered |
| How often did you have concerns about the patient’s personal care needs being met while you were not there? | 28 (80.0%) | 7 (20.0%) | 6 |