Agreement among family members in their assessment of the quality of dying and death

Richard Mularski; J. Randall Curtis; Molly Osborne; Ruth A. Engelberg; Linda Ganzini

doi:10.1016/j.jpainsymman.2004.01.008

Agreement among family members in their assessment of the quality of dying and death

Richard Mularski, J. Randall Curtis, Molly Osborne, Ruth A. Engelberg, Linda Ganzini

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60 Scopus citations

Abstract

Improving end-of-life care requires accurate indicators of the quality of dying. The purpose of this study was to measure the agreement among family members who rate a loved one's dying experience. We administered the Quality of Dying and Death instrument to 94 family members of 38 patients who died in the intensive care unit. We measured a quality of dying score of 60 out of 100 points and found moderate agreement among family members as measured by an intraclass correlation coefficient (ICC) of 0.44. Variability on individual items ranged from an ICC of 0.15 to 1.0. Families demonstrated more agreement on frequencies of events (ICC 0.54) than on determinations of quality (ICC 0.32). These findings reveal important variability among family raters and suggest that until the variability is understood, multiple raters may generate more comprehensive end-of-life data and may more accurately reflect the quality of dying and death.

Original language	English (US)
Pages (from-to)	306-315
Number of pages	10
Journal	Journal of Pain and Symptom Management
Volume	28
Issue number	4
DOIs	https://doi.org/10.1016/j.jpainsymman.2004.01.008
State	Published - Oct 2004

Keywords

Death
attitude to death
end-of-life care
family
outcome assessment
proxy
quality indicators health care
quality of dying
quality of health care
terminal care

ASJC Scopus subject areas

Nursing(all)
Clinical Neurology
Anesthesiology and Pain Medicine

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title = "Agreement among family members in their assessment of the quality of dying and death",

abstract = "Improving end-of-life care requires accurate indicators of the quality of dying. The purpose of this study was to measure the agreement among family members who rate a loved one's dying experience. We administered the Quality of Dying and Death instrument to 94 family members of 38 patients who died in the intensive care unit. We measured a quality of dying score of 60 out of 100 points and found moderate agreement among family members as measured by an intraclass correlation coefficient (ICC) of 0.44. Variability on individual items ranged from an ICC of 0.15 to 1.0. Families demonstrated more agreement on frequencies of events (ICC 0.54) than on determinations of quality (ICC 0.32). These findings reveal important variability among family raters and suggest that until the variability is understood, multiple raters may generate more comprehensive end-of-life data and may more accurately reflect the quality of dying and death.",

keywords = "Death, attitude to death, end-of-life care, family, outcome assessment, proxy, quality indicators health care, quality of dying, quality of health care, terminal care",

author = "Richard Mularski and Curtis, {J. Randall} and Molly Osborne and Engelberg, {Ruth A.} and Linda Ganzini",

note = "Funding Information: The authors are grateful to the following individuals who contributed to the completion and analysis of this study: Donald Patrick, Amy Hudkins, Allison Dark, Ellen Pillow, Robert Schuff, Gary Sexton, Benjamin Chan, and Yelena Kholodenko. This study was supported by grants from the Northwest Health Foundation, the American Lung Association of Oregon, and the General Clinical Research Center of Oregon Health & Science University by National Institutes of Health grant PHS 5 M01 RR00334. Copyright: Copyright 2012 Elsevier B.V., All rights reserved.",

year = "2004",

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doi = "10.1016/j.jpainsymman.2004.01.008",

language = "English (US)",

volume = "28",

pages = "306--315",

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AU - Ganzini, Linda

N1 - Funding Information: The authors are grateful to the following individuals who contributed to the completion and analysis of this study: Donald Patrick, Amy Hudkins, Allison Dark, Ellen Pillow, Robert Schuff, Gary Sexton, Benjamin Chan, and Yelena Kholodenko. This study was supported by grants from the Northwest Health Foundation, the American Lung Association of Oregon, and the General Clinical Research Center of Oregon Health & Science University by National Institutes of Health grant PHS 5 M01 RR00334. Copyright: Copyright 2012 Elsevier B.V., All rights reserved.

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N2 - Improving end-of-life care requires accurate indicators of the quality of dying. The purpose of this study was to measure the agreement among family members who rate a loved one's dying experience. We administered the Quality of Dying and Death instrument to 94 family members of 38 patients who died in the intensive care unit. We measured a quality of dying score of 60 out of 100 points and found moderate agreement among family members as measured by an intraclass correlation coefficient (ICC) of 0.44. Variability on individual items ranged from an ICC of 0.15 to 1.0. Families demonstrated more agreement on frequencies of events (ICC 0.54) than on determinations of quality (ICC 0.32). These findings reveal important variability among family raters and suggest that until the variability is understood, multiple raters may generate more comprehensive end-of-life data and may more accurately reflect the quality of dying and death.

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Agreement among family members in their assessment of the quality of dying and death

Abstract

Keywords

ASJC Scopus subject areas

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