Delirium and agitation are common and distressing in the last days of life. In specialist palliative care practice, descriptions such as ‘terminal agitation’ appear to be used more commonly than diagnostic terms. We aimed to explore the discourse surrounding these terms in this setting, their use and impact on management.
In this systematic review, we searched electronic databases (Medline, Embase and PsycINFO) for papers focusing on delirium and agitation in the last days of life in palliative care settings. Three reviewers independently selected papers. The frequency of use of terms of interest was noted and surrounding text extracted. Text data were subjected to thematic synthesis.
29 studies were included and three themes identified in the context of the last days of life: (1) definitions and terminology (varied and inconsistent); (2) causes, diagnosis and recognition in the palliative care setting (eg, ‘terminal’ delirium viewed as irreversible); and (3) management and impact (terminology influences assessment and management, and the clinical and emotional impact on patients, family and staff).
Review limitations include the restriction to English language papers and being unable to access some relevant full texts.
We found that inconsistent terminology and ambiguous definitions surrounding agitation and delirium had an impact on care of people with delirium-related and non-delirium-related agitation in the last days of life. The synonymous use of agitation and delirium may compound under-recognition of hypoactive delirium, and the use of the prefix ‘terminal’ may preclude appropriate assessment of potentially reversible factors despite proximity of death.
CRD42024582291.