Table 2.
Items per subscales, scales, and subscale scores
| Subscale (min.–max. subscale scores) | Itema | Possible answer options | Frequencies of answers (imputed dataset) (%) | Percentage of missing before imputation |
|---|---|---|---|---|
| (1) Support and time of doctors and nurses (0–36) | There was enough help available to meet his/her personal care needs, such as washing, personal hygiene, and toileting needs. (1) | Strongly agree (4) | 81.0 | 2.5 |
| Agree (3) | 12.7 | |||
| Neither agree nor disagree (2) | 3.8 | |||
| Disagree (1) | 2.1 | |||
| Strongly disagree (0) | 0.4 | |||
| There was enough help with nursing care, such as giving medicines and helping him/her find a comfortable position in bed. (2) | Strongly agree (4) | 83.1 | 0.0 | |
| Agree (3) | 11.4 | |||
| Neither agree nor disagree (2) | 3.0 | |||
| Disagree (1) | 2.5 | |||
| Strongly disagree (0) | 0.0 | |||
| The nurses had time to listen and discuss his/her condition with me. (7) | Strongly agree (4) | 67.1 | 0.4 | |
| Agree (3) | 22.8 | |||
| Neither agree nor disagree (2) | 5.5 | |||
| Disagree (1) | 4.2 | |||
| Strongly disagree (0) | 0.4 | |||
| The doctors had time to listen and discuss his/her condition with me. (8) | Strongly agree (4) | 68.4 | 2.5 | |
| Agree (3) | 22.4 | |||
| Neither agree nor disagree (2) | 3.0 | |||
| Disagree (1) | 5.1 | |||
| Strongly disagree (0) | 1.3 | |||
| Did you have confidence and trust in the nurses who were caring for him/her? (5) | Yes, in all of them (4) | 82.7 | 0.8 | |
| Yes, in some of them (2) | 17.3 | |||
| No, not in any of the nurses (0) | 0.0 | |||
| Did you have confidence and trust in the doctors who were caring for him/her? (6) | Yes, in all of them (4) | 83.1 | 2.1 | |
| Yes, in some of them (2) | 15.2 | |||
| No, not in any of the doctors (0) | 1.7 | |||
| In your view, did the doctors and nurses do enough to help relieve the pain? (10) |
Yes, all of the time (4) Not applicable, s/he was not in pain (4) |
93.7 | 1.3 | |
| Yes, some of the time (2) | 5.9 | |||
| No, not at all (0) | 0.4 | |||
| In your view, did the doctors and nurses do enough to help relieve the restlessness? (12) |
Yes, all of the time (4) Not applicable, s/he was not restlessness (4) |
82.3 | 2.5 | |
| Yes, some of the time (2) | 16.0 | |||
| No, not at all (0) | 1.7 | |||
| In your view, did the doctors and nurses do enough to help relieve the “noisy rattle” to his/her breathing? (14) |
Yes, all of the time (4) Not applicable, s/he had no noise rattle (4) |
80.6 | 4.6 | |
| Yes, some of the time (2) | 16.9 | |||
| No, not at all (0) | 2.5 | |||
| (2) Spiritual and emotional support (0–12) | How would you assess the overall level of emotional support given to you by the healthcare team? (19) | Excellent (4) | 59.9 | 0.8 |
| Good (3) | 31.6 | |||
| Fair (1) | 6.3 | |||
| Poor (0) | 2.1 | |||
| Overall, his/her religious or spiritual needs were met by the healthcare team. (20) | Strongly agree (4) | 57.8 | 10.1 | |
| Agree (3) | 23.6 | |||
| Neither agree nor disagree (2) | 12.7 | |||
| Disagree (1) | 3.8 | |||
| Strongly disagree (0) | 2.1 | |||
| Overall, my religious or spiritual needs were met by the healthcare team. (21) | Strongly agree (4) | 61.2 | 10.5 | |
| Agree (3) | 18.1 | |||
| Neither agree nor disagree (2) | 12.2 | |||
| Disagree (1) | 5.9 | |||
| Strongly disagree (0) | 2.5 | |||
| (3) Information and decision-making (0–16) | During the last 2 days, how involved were you with the decisions about his/her care and treatment? (15) | Very involved (4) | 60.8 | 0.4 |
| Fairly involved (2) | 26.2 | |||
| Not involved (0) | 13.1 | |||
| Did any of the healthcare team discuss with you whether giving fluids through a “drip” would be appropriate in the last 2 days of life? (16) | Yes (4) | 56.5 | 1.3 | |
| No (0) | 43.5 | 9.7 (do not know) | ||
| Would a discussion about the appropriateness of giving fluids through a “drip” in the last 2 days of life have been helpful? (17) |
No (4) Not applicable, we had these types of discussions (4) |
79.3 | 7.6 | |
| Yes (0) | 20.7 | |||
| Did the healthcare team explain his/her condition and/or treatment in a way you found easy or difficult to understand? (18) | Very easy (4) | 39.2 | 0.8 | |
| Fairly easy (3) | 45.1 | |||
| Fairly difficult (2) | 9.3 | |||
| Very difficult (1) | 1.3 | |||
| They did not explain his/her condition or treatment to me (0) | 5.1 | |||
| (4) Environment (0–8) | The bed area and surrounding environment was comfortable for him/her. (3) | Strongly agree (4) | 69.2 | 0.8 |
| Agree (3) | 17.7 | |||
| Neither agree nor disagree (2) | 8.0 | |||
| Disagree (1) | 4.2 | |||
| Strongly disagree (0) | 0.8 | |||
| The bed area and surrounding environment had adequate privacy for him/her. (4) | Strongly agree (4) | 72.2 | 0.8 | |
| Agree (3) | 17.7 | |||
| Neither agree nor disagree (2) | 5.5 | |||
| Disagree (1) | 3.8 | |||
| Strongly disagree (0) | 0.8 | |||
| (5) Information about dying process (0–12) | Before s/he died, were you told s/he was likely to die soon? (22) | Yes (4) | 85.2 | 0.4 |
| No (0) | 14.8 | |||
| Did a member of the healthcare team talk to you about what to expect when s/he was dying (e.g., symptoms that may arise)? (23) | Yes (4) | 54.4 | 2.5 | |
| No (0) | 45.6 | |||
| Would a discussion about what to expect when s/he was dying have been helpful? (24) |
No (4) Not applicable, we had these types of discussions (4) |
71.7 | 6.8 | |
| Yes (0) | 28.3 | |||
| (6) Symptom presence (0–12) | In your opinion, during the last 2 days, did s/he appear to have a “noisy rattle” to his/her breathing? (13) | Yes, all of the time (0) | 13.1 | 1.7 |
| Yes, some of the time (2) | 39.7 | |||
| No (4) | 47.3 | |||
| In your opinion, during the last 2 days, did s/he appear to be in pain? (9) | Yes, all of the time (0) | 8.9 | 0.8 | |
| Yes, some of the time (2) | 33.3 | |||
| No (4) | 57.8 | |||
| In your opinion, during the last 2 days, did s/he appear to be restless? (11) | Yes, all of the time (0) | 8.4 | 0.4 | |
| Yes, some of the time (2) | 41.4 | |||
| No (4) | 50.2 | |||
| (7) Support at actual time of death and afterwards (0–8) | I was given enough help and support by the healthcare team at the actual time of his/her death. (25) | Strongly agree (4) | 73.0 | 2.1 |
| Agree (3) | 13.1 | |||
| Neither agree nor disagree (2) | 7.6 | |||
| Disagree (1) | 3.0 | |||
| Strongly disagree (0) | 3.4 | |||
| After s/he had died, did individuals from the healthcare team deal with you in a sensitive manner? (26) | Yes (4) | 96.2 | 2.5 | |
| No (0) | 3.8 | 5.1 (not applicable) | ||
| Optional itemsb | In your opinion, how clean was the ward area that s/he was in? (O 1) | Very clean (4) | 86.5 | 0.0 |
| Fairly clean (2) | 12.7 | |||
| Not at all clean (0) | 0.8 | |||
| In your opinion did s/he die in the right place? (O 2) | Yes, it was the right place (4) | 83.5 | 2.6 (do not know) | |
| Not sure (2) | 6.8 | |||
| No, it was not the right place (0) | 7.2 |
aOriginal English wording of items; numbered according to CODE-GER
bItems were deleted after psychometric analyses for the final version of CODE-GER