“A Tool Doesn’t Add Anything” Physicians’ Perceptions and Use of Pain Assessment Tools with People with Advanced Dementia Approaching the End of Life

Background: People dying with advanced dementia areoften unable to effectively self-report pain and are at riskof under-assessment which may hinder pain diagnosis andmanagement. Pain assessment tools for use in advanceddementia are available but their use by physicians withdying patients has not been explored.Aims: To explore hospice, secondary and primary carephysicians’ use of pain assessment tools with patientsdying with advanced dementia.Methods: Twenty-three, semi-structured, face-to-facephysician interviews were conducted and transcribed verbatim.Thematic analysis was applied to identify corethemes across healthcare settings. Three researchers verifiedfinal themes.Results: Four key themes emerged: non-use of painassessment tools; perceived limitations of tools; clinicaloutcomes of use and improving pain assessment. Physiciansdid not routinely use pain assessment tools withpatients dying with advanced dementia. Information fromphysical examination, physiological parameters andpatient observation in addition to collateral patient historyfrom families and nursing staff were perceived to providea more reliable and holistic approach to assessment andmanagement. Scoring subjectivity, proxy-reporting andoverreliance on nonverbal and behavioural cues were limitationsassociated with pain tools. Physicians perceived theclinical outcome of pain tool use to be quicker identificationand reporting of pain by nurses. Most physiciansbelieved pain assessment could be improved via betterintegration of secondary, hospice and primary care servicesin addition to ongoing medical education andmentoring.Conclusion: Physicians preferred clinical investigationand collateral patient history from family and other healthprofessionals to assess pain and guide management. Thesefindings have important implications for medical education,practice and health policy.Funding: HSC Research and Development Division, PublicHealth Agency, Northern Ireland.