Managing clinical uncertainty in older people towards the end of life: a systematic review of person-centred tools

Abstract

Background Older people with multi-morbidities commonly experience an uncertain illness trajectory. Clinical uncertainty is challenging to manage, with risk of poor outcomes. Person-centred care is essential to align care and treatment with patient priorities and wishes. Use of evidence-based tools may support person-centred management of clinical uncertainty. We aimed to develop a logic model of person-centred evidence-based tools to manage clinical uncertainty in older people. Methods A systematic mixed-methods review with a results-based convergent synthesis design: a process-based iterative logic model was used, starting with a conceptual framework of clinical uncertainty in older people towards the end of life. This underpinned the methods. Medline, PsycINFO, CINAHL and ASSIA were searched from 2000 to December 2019, using a combination of terms: “uncertainty” AND “palliative care” AND “assessment” OR “care planning”. Studies were included if they developed or evaluated a person-centred tool to manage clinical uncertainty in people aged ≥65 years approaching the end of life and quality appraised using QualSyst. Quantitative and qualitative data were narratively synthesised and thematically analysed respectively and integrated into the logic model. Results Of the 17,095 articles identified, 44 were included, involving 63 tools. There was strong evidence that tools used in clinical care could improve identification of patient priorities and needs (n = 14 studies); that tools support partnership working between patients and practitioners (n = 8) and that tools support integrated care within and across teams and with patients and families (n = 14), improving patient outcomes such as quality of death and dying and satisfaction with care. Communication of clinical uncertainty to patients and families had the least evidence and is challenging to do well. Conclusion The identified logic model moves current knowledge from conceptualising clinical uncertainty to applying evidence-based tools to optimise person-centred management and improve patient outcomes. Key causal pathways are identification of individual priorities and needs, individual care and treatment and integrated care. Communication of clinical uncertainty to patients is challenging and requires training and skill and the use of tools to support practice.

Addressing inequity in palliative care provision for older people living with multimorbidity. Perspectives of community-dwelling older people on their palliative care needs: A scoping review

“…A systematic mixed-methods review of studies evaluating person-centred tools around clinical uncertainty for a similar population highlights the benefits of tools measuring across need domains. 55 Tools targeting ‘comprehensive assessment and continuity of care’ were found to improve ‘outcomes of quality of death and dying, clinician’s global assessment, goal attainment and symptom burden’. 55 Any tools developed for older people with multimorbidity near the end of life must cover multiple, complex palliative care needs across domains of need.…”

“… 55 Tools targeting ‘comprehensive assessment and continuity of care’ were found to improve ‘outcomes of quality of death and dying, clinician’s global assessment, goal attainment and symptom burden’. 55 Any tools developed for older people with multimorbidity near the end of life must cover multiple, complex palliative care needs across domains of need. Further, tools must also measure what matters most to the patients with which they are being used to have validity.…”

Uncertainty in serious illness: A national interdisciplinary consensus exercise to identify clinical research priorities

“…Models of uncertainty and evidence gaps from relevant literature reviews were outlined. [11,32,34,43,44] We then held focus groups with participants to explore their views on uncertainty and identify key areas for future research. This approach mirrored the idea generation stage of the nominal group technique and the first round of a Delphi process.…”

“…Discussion of main findings Communicating uncertainty was the top priority for participants, reflecting key evidence gaps and recommendations in this field. [32,47] In their narrative review of uncertainty communication, Simpkin et al identified a number of evidence gaps, including identifying individuals' communication preferences and tailoring communication to those preferences. [34] The question of how to maintain hope whilst communicating uncertainty was noted as a priority; this has been explored in cancer care, [48] but remains a key question in other serious illnesses.…”

“…[29][30][31] There are innumerable possible situations of uncertainty, each of which may have its own optimal approach. We still do not know how best to approach and address it in older patients living with longterm or life-threatening illnesses in a way that best supports the individual and those involved in their care; [32,33] although previous work has explored how to support communication of uncertainty, [34] uncertainty management, [12,32] and shared decision making. [35] We do know that there can be no one-size-fits-all approach to uncertainty, as it is experienced differently in different clinical contexts, by different individuals.…”