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

Mina Motamedi,Loai Albarqouni,Magnolia Cardona,Justin Clark,Danial Bahudin,Zoe A Michaleff,Meidelynn Ooi,Danielle Ní Chróinín,Mina Bakhit,Caitlin Brandenburg

doi:10.1186/s12877-021-02680-2

Abstract

BackgroundOvertreatment 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.MethodsMedline 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).ResultsThirty 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.ConclusionThe 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.

Highlights

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)
We focused on consumer perspectives to elucidate the broader domains and further characterise the concept of quality care, as delivered by health professionals in any setting, and beyond effectiveness of treatments [9], for older people dying of chronic illness
A common source of dissatisfaction was the loss of autonomy or dignity towards the end, this ranging from reduced EOL quality due to unnecessarily prolonged treatments, through unmet needs relating to place of death, to lack of privacy in the aftermath

Summary

Introduction

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). No study has attempted to synthesise the views of consumers on what constitutes good quality care at the EOL. In this scoping review, we focused on consumer perspectives to elucidate the broader domains and further characterise the concept of quality care, as delivered by health professionals in any setting, and beyond effectiveness of treatments [9], for older people dying of chronic illness. This review is part of a larger initiative to examine consumer and clinician concordance and discordance and potential gaps in EOL care for older people (the protocol for entire project is available at https://osf.io/5u964/)

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