Table 1 Patient-focused family-centred domain sample questions

For all questions the informant was reminded to focus on the decedent’s last 30 days while he/she was at the location identified earlier through a series of questions, as to where the majority of care was provided.

Physical comfort and emotional support

[Asked of informant’s if the decedent had experienced pain and were provided medications or treatment for their pain] …

Did [DECEDENT] receive too much, too little, or just the right amount of medication for (his/her) pain?

[ ] Too much

[ ] Too little

[ ] Right amount

Similar questions were asked about help to treat dyspnea and support for feeling of anxiety and/or sadness (emotional support).

Promotion of shared decision making (among informants who had contact with the decedent’s doctor or nurse…)

Was there ever a problem understanding what any doctor or nurse was saying to you about what to expect from treatment?

[ ] Yes

[ ] No

[ ] No treatment

Was there ever a decision made about (his/her) care without enough input from (him/her) or (his/her) family?

[ ] Yes

[ ] No

How much information did the doctors or nurses provide you about [DECEDENT’S] medical condition - would you say less information than was needed, just the right amount, or more than was needed?

[ ] Less than was needed

[ ] Just the right amount

[ ] More than was needed

Treating the dying patient with respect

During those last 30 days how often was (he/she) treated with respect by those who were taking care of (him/her) - always, usually, sometimes, or never?

[ ] Always

[ ] Usually

[ ] Sometimes

[ ] Never

Attend to the needs of the family

a) Information needs

At any time did you or your family receive any information about what to expect while (he/she) was dying? (e.g. symptom relief (pain, breathing), emotions)

[ ] Yes

[ ] No

Would you have wanted some or more information about that?

[ ] Yes

[ ] No

At any time did you or your family receive any information about what to do at the time of (his/her) death? (process of who to call, contact …)

[ ] Yes

[ ] No

Would you have wanted some or more information about that?

[ ] Yes

[ ] No

At any time during the time around [DECEDENT’S NAME] death, did you or your family receive any information about the medicines that would be used to manage (his/her) pain, shortness of breath, or other symptoms?

[ ] Yes

[ ] No

Would you have wanted some or more information about the medicines?

[ ] Yes

[ ] No

b) Caregiver skills – knowing what to expect as death approached

How confident were you that you knew what to expect while [DECEDENT] was dying? Were you:

[ ] Very confident

[ ] Fairly confident

[ ] Not confident

How confident were you that you knew what to do at the time of death. Were you:

[ ] Very confident

[ ] Fairly confident

[ ] Not confident

How confident were you that you understood about the medicines that would be used to manage [his/her] pain, shortness of breath, or other symptoms. Were you:

[ ] Very confident

[ ] Fairly confident

[ ] Not confident

Attend to emotional and spiritual needs of the family

During this time did someone talk with you about your religious or spiritual beliefs?

[ ] Yes

[ ] No

If yes, was it done in a sensitive manner?

[ ] Yes

[ ] No

Did you have as much contact of that kind as you wanted?

[ ] Yes

[ ] No

How much support in dealing with your feelings about [DECEDENT’S] death did the doctors, nurses or other professional staff taking care of [him/her] provide you?

[ ] Less support than was needed

[ ] Right amount

Did a doctor, nurse or other professional staff taking care of [DECEDENT] talk about how you might feel after [his/her] death?

[ ] Yes

[ ] No

Would you have wanted them to?

[ ] Yes

[ ] No

Was it done in a sensitive manner?

[ ] Yes

[ ] No

Provide coordination of care

During those last 30 days, was there any problem with doctors or nurses not knowing enough about [his/her] medical history to provide the best possible care?

[ ] Yes

[ ] No

Overall satisfaction with care

On a scale of 0 to 10, where 0 means the worst care possible and 10 means the best care possible, what number would you give the overall care that [DECEDENT] received during those last 30 days of life while being cared for at [LOCATION OF CARE]?

0 = worst care possible

10 = best care possible