Table 1 CODE GER - items included in psychometric analyses and overall impression questions

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

 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