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.
Background: Ageing populations worldwide and a concomitant increase in chronic conditions translates into an increased demand for the delivery of palliative and end of life care by nurses. This increasing demand for palliative care provision may produce stressors resulting in negative outcomes such as burnout and compassion fatigue.
Aim: The purpose of this study was to explore burnout and compassion fatigue, as well as potential protective factors, among nurses in New Zealand.
Methods: An online survey was conducted with 256 registered nurses (between January 2016 and February 2017) recruited through nursing organisations and a large tertiary level hospital. Data analysis consisted of descriptive statistics, multivariate analysis of variance, Pearson correlations, and hierarchical multiple regression.
Results: Psychological empowerment and the commitment and challenge components of psychological hardiness significantly predicted lower scores for the burnout while previous palliative care education and challenge predicted lower scores for the secondary traumatic stress component of compassion fatigue. Significant predictors of compassion satisfaction included previous palliative care education, psychological empowerment and both the commitment and challenge components of psychological hardiness.
Conclusion: Nurses draw upon unique combinations of “psychological capital” to deal with caring for patients with life-limiting illnesses. Any interventions to increase nurse palliative care education uptake must be tailored to develop and support these internal resources.
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.
Background: On average, people will experience 2.28 hospital admissions in the last year of life with the likelihood of a hospital admission increasing in the last 2 weeks of life. Reducing hospital admissions has become a focus for high-income countries as they work to manage the financial implications of an ageing population. However, the circumstances by which patients with palliative care needs are admitted to hospital remain poorly understood.
Aim: To explore the circumstances of hospital admissions for patients with palliative care needs.
Design: Cross-sectional survey design using face-to-face questionnaires.
Setting/participants: In total, 116 patients aged >18 years admitted to a tertiary hospital with palliative care needs.
Results: Those with a non-cancer diagnosis and those aged over 75 years were less likely to have hospice involved prior to the admission (x2 (1, n = 116) = 10.19, p = 0.00). Few patients recognised community services as having a role in enabling them to remain at home. Those with cancer placed a significantly higher priority on receiving information about their illness (t(114) = 2.03, p = 0.04) and receiving tests and investigations (t(114) = 2.37, p = 0.02) in hospital.
Conclusion: This study has demonstrated the complexity of hospital admissions in palliative care. Further research is needed to explore patient perceptions of care at home and the role of community services to enable them to remain at home. Understanding the motivation to come to hospital in the context of an incurable illness and limited treatment options may help to inform the development of services that can enable better care at home.
BACKGROUND: Internationally, increasing attention is being paid to understanding patient experiences of health care. Within palliative care, the Views of Informal Carers - Evaluation of Services (VOICES) questionnaire is commonly used for this purpose. Among its objectives is to ask family members if their relatives were treated with dignity at the end of life. This is regarded as useful for understanding the quality of the health care received.
AIM: To highlight the differences between family members' reports of dignity in the care provided to their relatives at the end of life, as reported in the VOICES questionnaire, and their narratives about the care their relatives received.
METHODS: A total of 21 cognitive interviews were conducted during a New Zealand pilot of the VOICES questionnaire.
RESULTS: Discrepancies between ratings of dignity and the lived experience of care suggest that lay understandings of dignity may not be congruent with that of health care providers.
CONCLUSIONS: Bereaved family members' self-reports of dignity in end-of-life care captured using survey methods alone are inadequate to understand the complex ways in which individuals conceptualise and experience dignity within a health care context. The authors advocate consideration of multiple, complementary approaches to gathering consumer experiences of end-of-life care, as well as research which enables service users to interrogate what dignity in care means in an end-of-life context.
BACKGROUND: Understanding end of life preferences amongst the oldest old is crucial to informing appropriate palliative and end of life care internationally. However, little has been reported in the academic literature about the end of life preferences of people in advanced age, particularly the preferences of indigenous older people, including New Zealand Maori.
METHODS: Data on end of life preferences were gathered from 147 Maori (aged >80 years) and 291 non- Maori aged (>85 years), during three waves of Te Puawaitangi O Nga Tapuwae Kia Ora Tonu, Life and Living in Advanced Age (LiLACs NZ). An interviewer-led questionnaire using standardised tools and including Maori specific subsections was used.
RESULTS: The top priority for both Maori and non-Maori participants at end of life was ‘not being a burden to my family’. Interestingly, a home death was not a high priority for either group. End of life preferences differed by gender, however these differences were culturally contingent. More female Maori participants wanted spiritual practices at end of life than male Maori participants. More male non-Maori participants wanted to be resuscitated than female non- Maori participants.
CONCLUSIONS: That a home death was not in the top three end of life priorities for our participants is not consistent with palliative care policy in most developed countries where place of death, and particularly home death, is a central concern. Conversely our participants' top concern - namely not being a burden - has received little research or policy attention. Our results also indicate a need to pay attention to diversity in end of life preferences amongst people of advanced age, as well as the socio-cultural context within which preferences are formulated.
BACKGROUND: Research exploring patient experience of palliative care in the hospital setting has previously been limited to negative aspects of care. However, recent studies have shown that patients with palliative care needs experience benefits being in hospital. Little is known about how experiences of benefit and burden vary according to socio-demographic and illness-related factors and how these experiences influence patient preferences to return to hospital.
AIM: To identify factors influencing experiences of benefit and burden and the predictors associated with a preference to return to hospital in palliative care.
DESIGN: Cross-sectional design using a questionnaire survey.
SETTING/PARTICIPANTS: In total, 116 hospital inpatients admitted with palliative care needs in an urban hospital in New Zealand. Recruitment was from an oncology ward, four general medical wards and a respiratory ward.
RESULTS: Those living in more deprived areas experienced more benefit being in hospital ( F(4, 109) = 3.15, p = 0.017), while younger people ( F(4, 109) = 4.44, p = 0.00) and those from Asian or Pacific cultures ( F(2, 111) = 7.78, p = 0.000) experienced more burden. Those with a non-cancer diagnosis felt less safe in hospital ( p = 0.04). 'Feeling safe' was a significant ( B = 0.14, p = 0.03) predictor for a preference to return to hospital.
CONCLUSION: Deprivation, diagnosis, age and ethnicity influenced experiences of benefit and burden in hospital. 'Feeling safe' was a significant predictor for a preference to return to hospital. Further research is needed to understand why certain patient factors influence experiences of hospitalisation and how 'feeling safe' can be replicated in other care environments.
Introduction: There is growing concern that Emergency Departments (ED) are ill equipped to manage rising palliative care demand, but actual demand is unknown. The aim of this study was to estimate the annual incidence of patients with palliative care need presenting to EDs.
Methods: Retrospective case review study across two New Zealand emergency departments from 1 July 2010 to 30 June 2011. We used a two-step process where (1) administrative databases were screened for patients who had presented with 12 diseases associated with palliative care need and (2) the Gold Standard Framework Prognostic Indicator Guidance (GSF PIG) criteria were applied to the clinical records of a random sample of patients meeting the disease criterion.
Results: Fifty-three thousand and fifty-seven patients presented to the EDs; 4488 (8.5%) patients had diagnostic codes indicating potential palliative care need and 1024 were randomly sampled. One hundred and eighty-eight patients (18.4%, 95%CI 16.0–20.8%) from the random sample were identified as meeting GSF PIG criteria for palliative care need. The leading diseases were cancer (26.1%), COPD (26.1%) and heart failure (22.9%). Extrapolating from the estimated incidence, 826 of the 4488 patients with 12 diseases would have met GSF PIG criteria, suggesting only 1.6% of all patients presenting to ED meet GSF PIG criteria.
Conclusions: The incidence of patients with actual palliative care need presenting to EDs was lower than anticipated. Further research is needed to examine for secular trends in palliative care presentations and if the incidence rates are consistent in across ED settings.
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.
Cette étude explore les points de vue des patients en unité de soins palliatifs concernant leurs motivations à prendre part à l'étude, conçue pour informer la délivrance des soins, et assurer une amélioration continue de services.