Table 1 CODE GER - items included in psychometric analyses and overall impression questions
| Item CODE™ | Short Description | Verbal Anchors and Rating Scale |
|---|---|---|
| There was enough help available to meet his/her personal care needs, such as washing, personal hygiene and toileting needs. | Nursing care- personal care needs |
0 = strongly disagree 1 = disagree 2 = neither agree nor disagree 3 = agree 4 = strongly agree |
| There was enough help with nursing care, such as giving medicines and helping him/her find a comfortable position in bed. | Nursing care – medicines and comfortable position |
0 = strongly disagree 1 = disagree 2 = neither agree nor disagree 3 = agree 4 = strongly agree |
| The bed area and surrounding environment was comfortable for him/her. | Whether the bed area was comfortable |
0 = strongly disagree 1 = disagree 2 = neither agree nor disagree 3 = agree 4 = strongly agree |
| The bed area and surrounding environment had adequate privacy for him/her. | Whether the bed area had adequate privacy |
0 = strongly disagree 1 = disagree 2 = neither agree nor disagree 3 = agree 4 = strongly agree |
| In your opinion, how clean was the ward area that s/he was in? a | Whether ward was clean |
0 = Not at all clean 2 = Fairly clean 4 = Very clean |
| Did you have confidence and trust in the nurses who were caring for him/her? | Confidence and trust in nurses |
0 = No, not in any of the nurses 2 = Yes, in some of them 4 = Yes, in all of them |
| Did you have confidence and trust in the doctors who were caring for him/her? | Confidence and trust in doctors |
0 = No, not in any of the doctors 2 = Yes, in some of them 4 = Yes, in all of them |
| The nurses had time to listen and discuss his/her condition with me. | Time of nurses to listen and discuss the patients’ condition |
0 = strongly disagree 1 = disagree 2 = neither agree nor disagree 3 = agree 4 = strongly agree |
| The doctors had time to listen and discuss his/her condition with me. | Time of doctors to listen and discuss the patient’s condition |
0 = strongly disagree 1 = disagree 2 = neither agree nor disagree 3 = agree 4 = strongly agree |
| In your opinion, during the last 2 days, did s/he appear to be in pain? | Whether patient had pain |
0 = Yes, all of the time 2 = Yes, some of the time 4 = No |
| In your view, did the doctors and nurses do enough to help relieve the pain? | Whether HCT did all they could to relieve pain |
0 = No, not at all 2 = Yes, some of the time 4 = Yes, all of the time 4 = Not applicable, s/he was not in pain |
| In your opinion, during the last 2 days, did s/he appear to be restless? | Whether patient was restless |
0 = Yes, all of the time 2 = Yes, some of the time 4 = No |
| In your opinion, did the doctors and nurses do enough to help relieve the restlessness? | Whether HCT did all they could to relieve restlessness |
0 = No, not at all 2 = Yes, some of the time 4 = Yes, all of the time 4 = Not applicable, s/he was not restless |
| In your opinion, during the last 2 days, did s/he appear to have a ‘noisy rattle’ to his/her breathing? | Whether patient had retained respiratory tract secretions |
0 = Yes, all of the time 2 = Yes, some of the time 4 = No |
| In your view, did the doctors and nurses do enough to help relieve the ‘noisy rattle’ to his/her breathing? | Whether HCT did all they could to control respiratory tract secretions |
0 = No, not at all 2 = Yes, some of the time 4 = Yes, all of the time 4 = Not applicable, s/he had no noisy rattle |
| During the last 2 days, how involved were you with the decisions about his/her care and treatment? | Involvement in decision-making |
0 = Not involved 2 = Fairly involved 4 = Very involved |
| 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? | Whether discussion of giving fluids through a ‘drip’ took place |
0 = No 4 = Yes |
| Would a discussion about the appropriateness of giving fluids through a ‘drip’ in the last 2 days of life have been helpful? | Whether discussion giving fluids through a ‘drip’ would have been helpful |
0 = Yes 4 = No 4 = Not applicable, we had these type of discussions |
| Did the healthcare team explain his/her condition and/or treatment in a way you found easy or difficult to understand? | Difficulty of explanations of the patient’s condition |
0 = They did not explain his/her condition or treatment to me 1 = Very difficult 2 = Fairly difficult 3 = Fairly easy 4 = Very easy |
| How would you assess the overall level of emotional support given to you by the healthcare team? | Emotional support to next-of-kin |
0 = Poor 1 = Fair 3 = Good 4 = Excellent |
| Overall, his/her religious or spiritual needs were met by the healthcare team. | Whether HCT met overall religious spiritual needs of patient |
0 = strongly disagree 1 = disagree 2 = neither agree nor disagree 3 = agree 4 = strongly agree |
| Overall, my religious or spiritual needs were met by the healthcare team. | Whether HCT met overall religious spiritual needs of next-of-kin |
0 = strongly disagree 1 = disagree 2 = neither agree nor disagree 3 = agree 4 = strongly agree |
| Before s/he died, were you told s/he was likely to die soon? | Information about the soon death of the patient |
0 = No 4 = Yes |
| 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)? | Information about what to expect during the dying process of the patient |
0 = No 4 = Yes |
| Would a discussion about what to expect when s/he was dying have been helpful? | Whether a discussion about what to expect during the dying process would have been helpful |
0 = No 4 = Yes 4 = Not applicable, we had these types of discussions |
| In your opinion did s/he die in the right place? a | Whether patient died in the right place |
0 = No, it was not the right place 2 = Not sure 4 = Yes, it was the right place |
| I was given enough help and support by the healthcare team at the actual time of his/her death | Support at actual time of death |
0 = strongly disagree 1 = disagree 2 = neither agree nor disagree 3 = agree 4 = strongly agree |
| After s/he had died, did individuals from the healthcare team deal with you in a sensitive manner? | Sensitivity of HCT after death |
0 = No 4 = Yes |
| Overall Impression | ||
| How much of the time was s/he treated with respect and dignity in the last 2 days of life by doctors? | Whether patient was treated with respect and dignity by doctors |
0 = Never 1 = Some of the time 3 = Most of the time 4 = Always |
| How much of the time was s/he treated with respect and dignity in the last 2 days of life by nurses? | Whether patient was treated with respect and dignity by nurses |
0 = Never 1 = Some of the time 3 = Most of the time 4 = Always |
| Overall, in your opinion, were you adequately supported during his/her last 2 days of life? | Whether next-of-kin was adequately supported |
0 = No 4 = Yes |
| How likely are you to recommend our ward to friends and family? | Whether next-of-kind would recommend ward to family/friends |
0 = Extremely unlikely 1 = Unlikely 2 = Neither likely nor unlikely 3 = Likely 4 = Extremely likely |