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American Journal of Hospice and Palliative Medicine®
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Using caregivers-as-proxies to retrospectively assess and measure quality of dying of palliative care clients

Marie Bridge, GradCertPalCare

Palliative Care Unit, Royal District Nursing Service South Australia Inc., Adelaide, Australia

D. I. Roughton, GradCertPalCare

Palliative Care Unit, Royal District Nursing Service South Australia Inc., Adelaide, Australia

Susan Lewis, GradDipHlthCnsl

Palliative Care Unit, Royal District Nursing Service South Australia Inc., Adelaide, Australia

Janine Barelds, BPsych

Palliative Care Unit, Royal District Nursing Service South Australia Inc., Adelaide, Australia

Sava Brenton, RN

Palliative Care Unit, Royal District Nursing Service South Australia Inc., Adelaide, Australia

Sherree Cotter, BEd

Palliative Care Unit, Royal District Nursing Service South Australia Inc., Adelaide, Australia

Mary-Lou Hagebols, BAdN(Ed)

Palliative Care Unit, Royal District Nursing Service South Australia Inc., Adelaide, Australia

Kirsty Woolman, RN

Palliative Care Unit, Royal District Nursing Service South Australia Inc., Adelaide, Australia

Merilyn Annells, RN, PhD

School of Nursing, La Trobe University, Melbourne, Australia

Tina Koch, RN, PhD

Research Unit, Royal District Nursing Service South Australia Inc., and Flinders University, Adelaide, Australia

This study evaluated two quality-of-life assessment and measurement tools, the Client Generated Index and the McGill Quality of Life questionnaire, within palliative care nursing. Primarily tested was the feasibility of the tools to assess clients’ QOL at admission and, if necessary, when their condition altered. The reliability of the tools has previously been ascertained. Additionally, quality of dying during the last two days of life for 14 participants who died during the study was assessed and measured retrospectively by these tools, using the client’s nominated care-giver as proxy for the client. It is this second focus that we report on here. The reasons why proxy assessment and measurement of client QOD was not useful or feasible are discussed.

Key Words: quality of life • quality of death • CGI • MQOL • assessment tools • palliative care

American Journal of Hospice and Palliative Medicine®, Vol. 19, No. 3, 193-199 (2002)
DOI: 10.1177/104990910201900311
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