Discordance and concordance on perception of quality care at end of life between older patients, caregivers and clinicians: a scoping review

BACKGROUND: This scoping review aimed to investigate the presence of discordance or concordance in the perceptions of end-of-life (EOL) care quality between consumers (i.e. patients aged over 60 in their last years of life and/or their informal caregivers) and clinicians, to inform further improvements in end-of-life care service delivery. METHODS: A scoping review of qualitative and quantitative studies was systematically undertaken by searching for English language publications in MEDLINE database and manual reference search of eligible articles. Thematic analysis was employed to identify and extract common concordance and discordance themes leading to the development of analytical constructs. Articles were eligible for inclusion if they reported on consumers’ (i.e. older patients aged 60 + years in their final years of life and/or their informal caregivers) and clinicians’ (doctors, nurses, social workers, etc.) perspectives on quality of medical, surgical or palliative/supportive care administered to older adults in the last year of life across all healthcare settings. RESULTS: Of the 2736 articles screened, 21 articles were included. Four themes identified concordance between consumers’ and clinicians’ perceptions of care quality: holistic patient care; coordinated care that facilitated EOL; the role of family at EOL; and impact of prognostic uncertainty on care planning. Three themes emerged for discordance of perceptions: understanding the patient needs at EOL; capacity of healthcare system/providers to accommodate family needs; and knowledge and communication of active or palliative care at EOL. CONCLUSIONS: While progress has been made on promoting patient autonomy and respecting the family role in representing patient’s best interest, gaps remain in terms of care coordination, communication of prognosis, public understanding of the meaning of goals of care including de-escalation of management and enactment of advance care directives by clinicians for people with diminished decision capacity. Public understanding of the meaning of “comfort” care and the need to prevent over-treatment are essential for their satisfaction with care and their ability to embrace the concept of a good death. SUPPLEMENTARY INFORMATION: The online version contains supplementary material available at 10.1007/s41999-021-00549-6.