Mapping hospice patients' perception and verbal communication of end-of-life needs: an exploratory mixed methods inquiry

Abstract Background Comprehensive "Total Pain" assessments of patients' end-of-life needs are critical for providing improved patient-clinician communication, assessing needs, and offering high quality palliative care. However, patients' needs-based research methodologies and findings remain highly diverse with their lack of consensus preventing optimum needs assessments and care planning. Mixed-methods is an underused yet robust "patient-based" approach for reported lived experiences to map both the incidence and prevalence of what patients perceive as important end of life needs. Methods Findings often include methodological artifacts and their own selection bias. Moving beyond diverse findings therefore requires revisiting methodological choices. A mixed methods research cross-sectional design is therefore used to reduce limitations inherent in both qualitative and quantitative methodologies. Audio-taped phenomenological "thinking aloud" interviews of a purposive sample of 30 hospice patients are used to identify their vocabulary for communicating perceptions of end-of-life needs. Grounded theory procedures assisted by QSR-NVivo software is then used for discovering domains of needs embedded in the interview narratives. Summary findings are translated into quantified format for presentation and analytical purposes. Results Findings from this mixed-methods feasibility study indicate patients' narratives represent 7 core domains of end-of-life needs. These are (1) time, (2) social, (3) physiological, (4) death and dying, (5) safety, (6) spirituality, (7) change & adaptation. The prevalence, rather than just the occurrence, of patients' reported needs provides further insight into their relative importance. Conclusion Patients' perceptions of end-of-life needs are multidimensional, often ambiguous and uncertain. Mixed methodology appears to hold considerable promise for unpacking both the occurrence and prevalence of cognitive structures represented by verbal encoding that constitute patients' narratives. Communication is a key currency for delivering optimal palliative care. Therefore understanding the domains of needs that emerge from patient-based vocabularies indicate potential for: (1) developing more comprehensive clinical-patient needs assessment tools; (2) improved patient-clinician communication; and (3) moving toward a theoretical model of human needs that can emerge at the end of life.</p

Analgesic use by ageing and elderly patients with chronic non-malignant pain: a qualitative study

Background: Analgesics are used in the management of chronic non-malignant pain (CNMP), a condition which is highly prevalent among older adults. CNMP may not only be physically distressing but also complicated by psychosocial and economic factors. An individual’s perception and use of analgesics may be influenced by a range of factors such as perceptions of risk or benefits, ability to purchase medication or access to non-pharmacological therapies or specialist care. Objective: The aim of this study was to describe the perceptions and experiences of analgesics by ageing and elderly individuals with CNMP and identify factors that influence their use. Setting: Telephone interviews with 28 members of Chronic Pain Ireland aged ≥50. Method: In-depth semi-structured interviews; audio-recorded, transcribed verbatim, and thematically analysed. Main outcome measure Experiences and perceptions of ageing and elderly individuals with CNMP taking analgesics. Results: A combination of factors specific to the patient and arising from outside influences informed perceptions and experiences of analgesics. Pain severity, perceived efficacy of analgesics, occurrence of adverse-effects and concerns about addiction/dependence were identified as internal factors influencing medication use. External factors included views of family members, access to specialised care and the individual’s interaction with healthcare professionals (HCPs). Conclusion: Individuals with CNMP regard analgesics as an important method for managing pain and are relied upon when other interventions are difficult to access. HCPs in primary care, who are the main point of contact for patients, need to take into account the various factors that may influence analgesic use when consulting with this patient group