Evaluating palliative care: bereaved family members' evaluations of patients' pain, anxiety and depression.
Palliative care surveys often rely on bereaved family members to act as proxies to provide information on patient care at the end of life, after the patient's death. However, when comparing bereaved family members' assessments with those of the patients, agreement is found to be better for symptoms that are more concrete and observable than subjective aspects such as psychological symptoms and pain. To date, little is known about how proxies actually evaluate these types of symptoms. The present study used retrospective verbal protocol analysis to elucidate the thought processes of 30 bereaved relatives during their evaluations of patients' pain, anxiety and depression. The qualitative analysis raised awareness of the difficulties experienced by proxies when discerning the presence of symptoms. It also provided insights into the cues and strategies used when making decisions, contributing to a fuller understanding of how proxies distinguish symptoms. Recommendations are made to improve the design of retrospective palliative care surveys.
Department of Palliative Care and Policy (C.J.McP., J.M.A.-H.), Guy's, King's and St. Thomas' School of Medicine, King's College, London, United Kingdom.
Christine J
CJ
McPherson
Julia M
JM
Addington-Hall
D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D001007:Anxiety / Q000401:mortality*; D001293:Attitude to Death; D001294:Attitude to Health; D001601:Bereavement; D015897:Comorbidity; D003863:Depression / Q000401:mortality*; D005190:Family; D005260:Female; D017051:Hospice Care / Q000706:statistics & numerical data; D006801:Humans; D008131:London / Q000453:epidemiology; D008297:Male; D008875:Middle Aged; D010146:Pain / Q000401:mortality*; D010166:Palliative Care / Q000379:methods / Q000706:statistics & numerical data*; D019727:Proxy / Q000706:statistics & numerical data; D011785:Quality Assurance, Health Care / Q000379:methods