Concerns and potential improvements in end-of-life care from the perspectives of older patients and informal caregivers: a scoping review

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Motamedi, Mina
Brandenburg, Caitlin
Bakhit, Mina
Michaleff, Zoe A
Albarqouni, Loai
Clark, Justin
Ooi, Meidelynn
Bahudin, Danial
Chroinin, Danielle Ni
Cardona, Magnolia
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2021
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Abstract

Background: Overtreatment in advanced age i.e. aggressive interventions that do not improve survival and are potentially harmful, can impair quality of care near the end of life (EOL). As healthcare provider perspectives on care quality may differ from that of service users, the aim of this study was to explore the views of older patients near EOL or their caregivers about the quality of health care at the EOL based on their lived experience, and to identify healthcare service improvements. Methods: Medline and backward citation searches were conducted for qualitative or quantitative studies reported on the views of patients and/or informal caregivers about EOL care quality. Thematic analysis was used to summarise qualitative data (primary analysis); narrative and tabulations were used to summarise quantitative data (secondary analysis). Results: Thirty articles met the inclusion criteria. Five main qualitative themes regarding quality care emerged: (1) Effective communication between clinicians and patients/caregivers; (2) Healthcare that values patient preferences and shared decision making; (3) Models of care that support quality of life and death with dignity; (4) Healthcare services that meet patient expectations; and (5) Support for informal caregivers in dealing with EOL challenges. The quantitative articles supported various aspects of the thematic framework. Conclusion: The findings of this study show that many of the issues highlighted by patients or bereaved relatives have persisted over the past two decades. There is an urgent need for comprehensive evaluation of care across the healthcare system and targeted redesign of existing EOL care pathways to ensure that care aligns with what patients and informal caregivers consider high-quality patient-centred care at the EOL.

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BMC Geriatrics

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21

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1

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© The Author(s) 2021. Open Access This article is licensed under a Creative Commons Attribution 4.0 International License, which permits use, sharing, adaptation, distribution and reproduction in any medium or format, as long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons licence, and indicate if changes were made.

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Clinical sciences

Sports science and exercise

Science & Technology

Life Sciences & Biomedicine

Geriatrics & Gerontology

Gerontology

End-of-life care

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Motamedi, M; Brandenburg, C; Bakhit, M; Michaleff, ZA; Albarqouni, L; Clark, J; Ooi, M; Bahudin, D; Chroinin, DN; Cardona, M, Concerns and potential improvements in end-of-life care from the perspectives of older patients and informal caregivers: a scoping review, BMC Geriatrics, 2021, 21 (1), pp. 729

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