BACKGROUND: Little is known about the quality of end of life care in long-term care (LTC) for residents with different diagnostic trajectories. The aim of this study was to compare symptoms before death in LTC for those with cancer, dementia or chronic illness.
METHODS: After-death prospective staff survey of resident deaths with random cluster sampling in 61 representative LTC facilities across New Zealand (3709 beds). Deaths (n = 286) were studied over 3 months in each facility. Standardised questionnaires - Symptom Management (SM-EOLD) and Comfort Assessment in End of life with Dementia (CAD-EOLD) - were administered to staff after the resident’s death.
RESULTS: Primary diagnoses at the time of death were dementia (49%), chronic illness (30%), cancer (17%), and dementia and cancer (4%). Residents with cancer had more community hospice involvement (30%) than those with chronic illness (12%) or dementia (5%). There was no difference in mean SM-EOLD in the last month of life by diagnosis (cancer 26.9 (8.6), dementia 26.5(8.2), chronic illness 26.9(8.6). Planned contrast analyses of individual items found people with dementia had more pain and those with cancer had less anxiety. There was no difference in mean CAD-EOLD scores in the week before death by diagnosis (total sample 33.7(SD 5.2), dementia 34.4(SD 5.2), chronic illness 33.0(SD 5.1), cancer 33.3(5.1)). Planned contrast analyses showed significantly more physical symptoms for those with dementia and chronic illness in the last month of life than those with cancer.
CONCLUSIONS: Overall, symptoms in the last week and month of life did not vary by diagnosis. However, sub-group planned contrast analyses found those with dementia and chronic illness experienced more physical distress during the last weeks and months of life than those with cancer. These results highlight the complex nature of LTC end of life care that requires an integrated gerontology/palliative care approach.
CONTEXT: In most resource-rich countries, a large and growing proportion of older adults with complex needs will die while in a Residential Aged Care (RAC) facility.
OBJECTIVES: This study describes the impact of facility size (small/large), ownership model (profit/non-profit) and provider (independent/chain) on resident comfort and symptom management as reported by RAC staff.
METHODS: This retrospective 'after-death' study collected data decedent resident data from a subsample of 51 hospital-level residential aged care facilities in New Zealand. Symptom Management and Comfort Assessment in Dying at End of life with Dementia (SM-EOLD and CAD-EOLD) scales were administered post-mortem to Residential Aged Care staff most closely associated with 217 deceased residents. Data collection occurred from January 2016 to February 2017.
RESULTS: Results indicated that residents of large, non-profit facilities experienced greater comfort at the end of life (CAD-EOLD) as indicated by a higher mean score of 37.21 (SD = 4.85, 95%CI 34.4, 40.0 compared with residents of small for-profit facilities who recorded a lower mean score 31.56 (SD = 6.20 95% CI 29.6, 33.4). There was also evidence of better symptom management for residents of chain facilities, with a higher mean score for Symptom management score (SM-EOLD total score) recorded for residents of chain facilities (mean = 28.07, SD = 7.64, CI 26.47), 29.66) was higher in comparison to the mean score for independent facilities (mean = 23.93, SD = 8.72, 95% CI 21.65, 26.20).
CONCLUSION: Findings suggest that there are differences in the quality of end-of-life care given in Residential Aged Care based on size, ownership model, and chain affiliation.
Introduction: Staff in residential aged care (RAC) face increasing exposure to death and dying provoking coping-related responses. This study reports on research exploring the role of religious/spiritual belief in staff coping with death and dying in RAC homes.
Method: Utilising a mixed methods, concurrent triangulation design, data from interviews and questionnaires with 113 RAC staff were analysed to explore the relationship between staff members’ religious/spiritual beliefs and coping with resident deaths within the context of 50 RAC facilities.
Results: Participants appeared to have distinctly different experiences of the role of religious/spiritual beliefs in their attitudes toward death and dying – as reflected linguistically in how they described it. Strong religious/spiritual influence and religious affiliation were associated with lower scores for burnout. Level of religious/spiritual influence does make a difference in the strategies employed by staff in coping with death and dying.
Conclusion: Given the potential benefits associated with religious/spiritual beliefs, RAC facility management would be well advised to foster a workplace culture that supports and encourages spiritual/religious expression among facility staff. Greater understanding of the role of religious/spiritual beliefs in helping staff to make sense of the end-of-life experience can provide the basis for the development of staff supports enabling both improved staff well-being and resident end-of-life care.
Research indicates that staff in aged residential care may be unprepared for their role in palliative care provision. In collaboration with a local hospice, the project piloted an innovative problem-based experiential learning intervention Supportive Hospice and Aged Residential Exchange (SHARE) to enhance aged residential care staff palliative care skills. The aim was to explore the impact of SHARE for staff. SHARE was implemented in two aged residential care facilities in one urban centre for six months. Measurement of the impact of the intervention consisted of 1) pre-test-post-test questionnaires (n = 27) to assess changes in staff confidence in palliative care delivery 2) Eleven post-intervention interviews to describe staff perceptions of SHARE. Results from the SHARE pilot indicate that the intervention overall is seen as a success, especially in relation to advanced care planning documentation. Relationships between hospice and facility staff, and consequently facility staff and residents are seen as the key to the success of the project. Staff survey results indicated increased confidence in palliative care delivery and decreased depression. Key lessons learnt from for the development of any palliative care intervention within aged residential care include the importance of reciprocal learning, as well as the necessity of a strong partnership with key stakeholders.