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Table 1 Patient-focused family-centred domain sample questions

From: Bereaved family member perceptions of patient-focused family-centred care during the last 30 days of life using a mortality follow-back survey: does location matter?

Domain Response options
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