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Evaluating palliative care: bereaved family members’ evaluations of patients’ pain, anxiety and depression

Evaluating palliative care: bereaved family members’ evaluations of patients’ pain, anxiety and depression
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.
palliative, symptom evaluation, surveys, family, retrospective
0885-3924
104-114
McPherson, C.J.
58cde409-eaf9-45d8-962f-ce597f77c632
Addington-Hall, J.M.
87560cc4-7562-4f9b-b908-81f3b603fdd8
McPherson, C.J.
58cde409-eaf9-45d8-962f-ce597f77c632
Addington-Hall, J.M.
87560cc4-7562-4f9b-b908-81f3b603fdd8

McPherson, C.J. and Addington-Hall, J.M. (2004) Evaluating palliative care: bereaved family members’ evaluations of patients’ pain, anxiety and depression. Journal of Pain and Symptom Management, 28 (2), 104-114. (doi:10.1016/j.jpainsymman.2003.11.010).

Record type: Article

Abstract

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.

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More information

Published date: 2004
Keywords: palliative, symptom evaluation, surveys, family, retrospective

Identifiers

Local EPrints ID: 9799
URI: http://eprints.soton.ac.uk/id/eprint/9799
ISSN: 0885-3924
PURE UUID: 33bde2ff-6f60-41bd-80d6-c377cbdec5ed

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Date deposited: 23 Oct 2004
Last modified: 15 Mar 2024 04:57

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Author: C.J. McPherson

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