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Health Expect. 2019 Jun;22(3):405-414. doi: 10.1111/hex.12860. Epub 2019 Jan 6.

End-of-life priorities of older adults with terminal illness and caregivers: A qualitative consultation.

Author information

1
Faculty of Medicine, School of Public Health and Community Medicine, University of New South Wales, Sydney, New South Wales, Australia.
2
SWS Clinical School, The Simpson Centre for Health Services Research, University of New South Wales, Sydney, New South Wales, Australia.
3
Department of Intensive Care Medicine, Wellington Regional Hospital, Wellington, New Zealand.
4
University of Otago, Wellington, New Zealand.
5
Thomas Holt Aged Care, Sydney, New South Wales, Australia.
6
Cunningham Centre for Palliative Care, Sacred Heart Health Service, St Vincent's Health Network, Sydney, New South Wales, Australia.
7
Faculty of Health, The Australian Centre for Public and Population Health Research, University of Technology Sydney, Sydney, New South Wales, Australia.
8
Intensive Care Unit, Liverpool Hospital, Sydney, New South Wales, Australia.
9
Centre for Primary Health Care and Equity, Faculty of Medicine, University of New South Wales, Sydney, New South Wales, Australia.
10
Centre for Research in Evidence-Based Practice, Faculty of Health Sciences and Medicine, Bond University, Gold Coast, Queensland, Australia.
11
Gold Coast Hospital and Health Service, Gold Coast, Queensland, Australia.

Abstract

BACKGROUND:

As older adults approach the end-of-life (EOL), many are faced with complex decisions including whether to use medical advances to prolong life. Limited information exists on the priorities of older adults at the EOL.

OBJECTIVE:

This study aimed to explore patient and family experiences and identify factors deemed important to quality EOL care.

METHOD:

A descriptive qualitative study involving three focus group discussions (n = 18) and six in-depth interviews with older adults suffering from either a terminal condition and/or caregivers were conducted in NSW, Australia. Data were analysed thematically.

RESULTS:

Seven major themes were identified as follows: quality as a priority, sense of control, life on hold, need for health system support, being at home, talking about death and competent and caring health professionals. An underpinning priority throughout the seven themes was knowing and adhering to patient's wishes.

CONCLUSION:

Our study highlights that to better adhere to EOL patient's wishes a reorganization of care needs is required. The readiness of the health system to cater for this expectation is questionable as real choices may not be available in acute hospital settings. With an ageing population, a reorganization of care which influences the way we manage terminal patients is required.

KEYWORDS:

care priorities; end-of-life; family caregivers; older adults; qualitative study

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