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. Key summary pointsAim The purpose of this review was to synthesise and critically analyse the points of discordance and concordance between consumers and clinicians about quality end-of-life care. Findings Respecting patient autonomy and the role of family is now clearly understood, but the role of healthcare provider and purpose of treatment withdrawal are still a matter of conflict between clinicians and patients or families. Clinician awareness of the possibility of misunderstanding by patients or families is the first step in preventing discordance of views on care quality at the end of life. Message To prevent the conflict between parties, further efforts are needed to investigate ways to better communicate the goals of care, limitations of treatment and uncertainty associated with forecasting time to end of life.