scholarly journals “A good death but there was all this tension around”- perspectives of residential managers on the experience of delivering end of life care for people living with dementia

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Jessica A. L. Borbasi ◽  
Allison Tong ◽  
Alison Ritchie ◽  
Christopher J. Poulos ◽  
Josephine M. Clayton
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Aged Care ◽  
Care Staff ◽  
Care Homes ◽  
Residential Aged Care ◽  
Life Care ◽  
Advanced Dementia ◽  
Front Line ◽  
Care Managers

Abstract Background End of life care for residents with advanced dementia in the aged care setting is complex. There is prolonged and progressive cognitive decline, uncertain disease trajectory, significant symptom burden and infrequent access to specialist palliative care. Residential aged care managers offer a unique perspective in understanding the experience of providing end of life care for residents with advanced dementia. They bring insight from the coalface to the broader policy context. The aim of this study was to describe the experience and perspectives of residential aged care managers on providing end of life care for residents living with dementia. Methods Focus groups and semi-structured interviews were conducted with residential or care managers from various care homes from one dementia specific aged care organisation in Australia. A comprehensive sampling strategy was used in participating care homes. Transcripts were analysed using thematic analysis. Results 20 residential or care managers from 11 aged care homes in two states of Australia participated in two focus groups (total 16 participants) or individual interviews (4 participants). Six themes were identified: laying the ground work to establish what families understand about dementia, playing the peacemaker in the face of unrealistic family demands and expectations, chipping away at denial and cultivating a path towards acceptance of death, recruiting general practitioners as allies, supporting and strengthening the front line, and dedication to optimal care is relentless but rewarding. Conclusion Aged care manager participants described provision of end of life dementia care as a rewarding but sometimes fraught experience requiring persistent personalisation of care and communication to enable family acceptance of the resident’s terminal condition. The findings suggest that continuous front line aged care staff skill development, iterative family discussions, and partnership building between aged care staff and general practitioners, are all required to promote optimal end of life dementia care in residential aged care settings.

scholarly journals “A Good Death But There Was All This Tension Around” - Perspectives of Residential Managers on the Experiences and Challenges of Delivering end of Life Care for People Living with Dementia.

2020 ◽  
Author(s):  
Jessica Borbasi ◽  
Allison Tong ◽  
Alison Ritchie ◽  
Christopher J Poulos ◽  
Josephine M Clayton
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Symptom Burden ◽  
Aged Care ◽  
Residential Aged Care ◽  
Life Care ◽  
Advanced Dementia ◽  
Structured Interviews ◽  
Optimal Care ◽  
Family Demands

Abstract Background End of life care for residents with advanced dementia in the aged care setting is complex because there is prolonged and progressive cognitive decline, uncertain disease trajectory, significant symptom burden and infrequent access to specialist palliative care. Residential aged care managers offer a unique perspective in understanding the experience of providing end of life care for residents with advanced dementia from the coalface to the broader policy context. Methods Focus groups and semi-structured interviews were conducted with 20 residential managers from 11 aged care homes in Australia. Transcripts were analysed using thematic analysis. Results Six themes were identified: laying the ground work to establish what families understand about dementia, playing the peacemaker in the face of unrealistic family demands and expectations, chipping away at denial and cultivating a path towards acceptance of death, recruiting general practitioners as allies, supporting and strengthening the front line, and dedication to optimal care is relentless but rewarding.

scholarly journals A screen-based simulation training program to improve palliative care of people with advanced dementia living in residential aged care facilities and reduce hospital transfers: study protocol for the IMproving Palliative care Education and Training Using Simulation in Dementia (IMPETUS-D) cluster randomised controlled trial

2019 ◽  
Vol 18 (1) ◽  
Author(s):  
Joanne Tropea ◽  
Christina E. Johnson ◽  
Debra Nestel ◽  
Sanjoy K. Paul ◽  
Caroline A. Brand ◽  
...  
Keyword(s):  
Palliative Care ◽  
Training Program ◽  
Residential Care ◽  
Simulation Training ◽  
Aged Care ◽  
Dementia Care ◽  
Care Staff ◽  
Care Homes ◽  
Residential Aged Care ◽  
Advanced Dementia

Abstract Background Many people with advanced dementia live in residential aged care homes. Care home staff need the knowledge and skills to provide high-quality end-of-life (EOL) dementia care. However, several studies have found EOL dementia care to be suboptimal, and care staff have reported they would benefit from training in palliative care and dementia. Simulation offers an immersive learning environment and has been shown to improve learners’ knowledge and skills. However, there is little research on simulation training for residential care staff. This article presents the development and evaluation protocol of IMproving Palliative care Education and Training Using Simulation in Dementia (IMPETUS-D) - a screen-based simulation training program on palliative dementia care, targeted at residential care staff. IMPETUS-D aims to improve the quality of palliative care provided to people living with dementia in residential care homes, including avoiding unnecessary transfers to hospital. Methods A cluster RCT will assess the effect of IMPETUS-D. Twenty-four care homes (clusters) in three Australian cities will be randomised to receive either the IMPETUS-D intervention or usual training opportunities (control). The primary outcome is to reduce transfers to hospital and deaths in hospital by 20% over 6-months in the intervention compared to the control group. Secondary outcomes include uptake of goals of care plans over 6 and 12 months, change in staff knowledge and attitudes towards palliative dementia care over 6 months, change in transfers to hospital and deaths in hospital over 12 months. For the primary analysis logistic regression models will be used with standard errors weighted by the cluster effects. A mixed methods process evaluation will be conducted alongside the cluster RCT to assess the mechanisms of impact, the implementation processes and contextual factors that may influence the delivery and effects of the intervention. Discussion In Australia, the need for high-quality advanced dementia care delivered in residential aged care is growing. This study will assess the effect of IMPETUS-D a new simulation-based training program on dementia palliative and EOL care. This large multisite trial will provide robust evidence about the impact of the intervention. If successful, it will be distributed to the broader residential care sector. Trial registration ANZCTR, ACTRN12618002012257. Registered 14 December 2018.

A residential aged care end-of-life care pathway (RAC EoLCP) for Australian aged care facilities

2011 ◽  
Vol 35 (3) ◽  
pp. 350 ◽  
Author(s):  
Liz Reymond ◽  
Fiona J. Israel ◽  
Margaret A. Charles
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Acute Care ◽  
End Of Life Care ◽  
Care Pathway ◽  
Aged Care ◽  
Residential Aged Care ◽  
Life Care ◽  
Care Facilities ◽  
Aged Care Facilities

The objective of this study was to develop, implement and evaluate an end-of-life (terminal) care pathway and associated infrastructure suitable for Australian residential aged care facilities that improves resident and health system outcomes. The residential aged care end-of-life care pathway was developed by a multidisciplinary collaboration of government and non-government professionals and incorporated best clinical management for dying residents to guide care and increase palliative care capacity of generalist staff. Implementation included identifying and up-skilling Link Nurses to champion the pathway, networking facilities with specialist palliative care services, delivering education to generalists and commencing a Palliative Care Medication Imprest System in each facility. The primary outcome measure for evaluation was transfer to hospital; secondary measures included staff perceived changes in quality of palliative care provided and family satisfaction with care. Results indicated that the pathway, delivered within a care framework that guides provision of palliative care, resulted in improved resident outcomes and decreased inappropriate transfers to acute care settings. What is known about the topic? Residential aged care facilities (RACFs) are the hospices of today. Many RACF staff are not confident in the delivery of high quality palliative care, resulting in inappropriate transfers of dying residents to acute care facilities. Needs-based palliative care pathways are being used increasingly to direct care in a variety of healthcare environments. What does this paper add? Provides the first evidence in Australia that a residential aged care end-of-life care pathway (RAC EoLCP) improves outcomes of care for dying residents and results in fewer residents being inappropriately transferred to acute care facilities. What are the implications for practitioners? Use of the RAC EoLCP will improve resident and health system outcomes by guiding the delivery of high quality palliative care and improving the palliative care capacity of generalist health providers.

Provision of palliative and end-of-life care in New Zealand residential aged care facilities: general practitioners' perspectives

2020 ◽  
Vol 26 (2) ◽  
pp. 124 ◽  
Author(s):  
Deborah Balmer ◽  
Rosemary Frey ◽  
Merryn Gott ◽  
Jackie Robinson ◽  
Michal Boyd
Keyword(s):  
New Zealand ◽  
End Of Life ◽  
General Practitioners ◽  
End Of Life Care ◽  
Aged Care ◽  
Residential Aged Care ◽  
Life Care ◽  
Structured Interviews ◽  
Care Facilities ◽  
Aged Care Facilities

This exploratory study examined general practitioners’ (GPs) perspectives on delivering end-of-life care in the New Zealand residential aged care context. A general inductive approach to the data collected from semi-structured interviews with 17 GPs from 15 different New Zealand general practices was taken. Findings examine: (1) GPs’ life experience; (2) the GP relationship with the facilities and provision of end-of-life care; (3) the GP interaction with families of dying residents; and (4) GP relationship with hospice. The nature of the GP relationship with the facility influenced GP involvement in end-of-life care in aged care facilities, with GPs not always able to direct a facility’s end-of-life care decisions for specific residents. GP participation in end-of-life care was constrained by GP time availability and the costs to the facilities for that time. GPs reported seldom using hospice services for residents, but did use the reputation (cachet) associated with hospice practices to provide an authoritative buffer for their end-of-life clinical decisions when talking with families and residents. GP training in end-of-life care, especially for those with dementia, was reported as ad hoc and done through informal mentoring between GPs.

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