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. 2015 Oct;29(9):797–807. doi: 10.1177/0269216315578990

Table 4.

Followback survey free-text comments.

Preferred place of care
AMBER/comparison Respondent Comment
AMBER Son of woman with cancer I felt hopeless and worried at times when my mum complained about pain. I didn’t know how to help her, especially when she was in a coma and sweating a lot. At the time I wished she was in a hospice.
AMBER Daughter of woman with cancer My mum was sent to a rehabilitation centre because she couldn’t look after herself at home. She was too ill for rehabilitation but the hospice did not seem to be an option. Had I known she didn’t have long to live, I would have made sure she stayed at home and I would have looked after her.
Communication
AMBER or comparison Respondent Comment
AMBER Daughter of woman with cancer Doctors were pretty poor at making time to explain things. Poor communication between them meant hard to know where we stood, next steps etc.
AMBER Daughter of woman with COPD Doctors took time to speak to me and explain what was wrong and what they were doing to help.
AMBER Daughter of woman with cancer It was often quite difficult to get information about her condition and what treatment was being given. Doctors rarely available to talk to at the times I was able to visit, and nurses were not able to discuss her case.
AMBER Son of woman with sepsis We the family were treated with kindness and kept fully informed.
AMBER Daughter of woman with cancer I would have appreciated knowing earlier that she was coming to the end of her life. I think I knew but I needed to know on admission that she would not survive. I needed someone to tell me, even though the staff may have thought I knew, I needed confirmation to act accordingly.
Comparison Relative of woman with sepsis They explained what they thought was wrong with her to her family but when death was near, never told the family that she was close to the end of life.
Comparison Wife of man who had a stroke Quite good communication when doctors on ward, but it was very difficult to find out information on a day to day basis as family went days without seeing a doctor.
Comparison Wife of man who had a stroke I am not sure they explained adequately the situation. He could not speak but his brain was intact.
Comparison Husband of woman with subdural haemorrhage Care was taken, but information was never explained to me.

COPD: chronic obstructive pulmonary disease.