scholarly journals A qualitative comparison of care home staff and palliative care specialists’ experiences of providing end of life care to people living and dying with dementia in care homes in two countries: A focus group study

2021 ◽  
pp. 026921632110433
Author(s):  
Melanie Handley ◽  
Deborah Parker ◽  
Frances Bunn ◽  
Claire Goodman
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Care Home ◽  
Care Homes ◽  
Life Care ◽  
Term Care ◽  
Sustainable Solutions ◽  
Care Home Staff ◽  
People With Dementia

Background: Palliative care for people with dementia dying in care homes is an important aspect of long-term care. Whilst there is consensus about the principles of palliative care, less is known about how care home staff negotiate and influence decisions around end of life and how organisational context shapes that process. Aim: To explore the views and experiences of care home staff and palliative care specialists on end of life care in care homes and understand how care home settings affected palliative care provision in England and Australia. Design/participants: Eight focus groups in Australia and England with care home staff and palliative care specialists ( n = 49). Reflexive thematic analysis was undertaken. Findings: Australian participants reported collaboration between care home staff, visiting professions and family members though case conferences. English participants discussed resident-focussed involvement from specialists that was less formally organised. Negotiating roles and responsibilities in end of life care; the importance of relationships to overcome deficiencies in formal processes; and the legitimacy and authority of advance care planning at times of crisis were recurring themes. The organisation and embedding of end of life care in processes and practices of care homes differed; this closely linked to care home procedures in Australia but was less apparent in England. Conclusion: In both countries, partnership working was recognised and valued as key to effective palliative care. Work that enables care home staff to identify challenges with visiting professionals, such as agreeing priorities for care and negotiating their shared responsibilities, may lead to context-sensitive, sustainable solutions.

scholarly journals Palliative and end-of-life care in care homes: protocol for codesigning and implementing an appropriate scalable model of Needs Rounds in the UK

BMJ Open ◽  
2021 ◽  
Vol 11 (2) ◽  
pp. e049486
Author(s):  
Aisha Macgregor ◽  
Alasdair Rutherford ◽  
Brendan McCormack ◽  
Jo Hockley ◽  
Margaret Ogden ◽  
...  
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
End Of Life Care ◽  
Care Home ◽  
Care Homes ◽  
Successful Implementation ◽  
Life Care ◽  
Care Home Staff ◽  
Palliative Care Teams ◽  
The Uk

IntroductionPalliative and end-of-life care in care homes is often inadequate, despite high morbidity and mortality. Residents can experience uncontrolled symptoms, poor quality deaths and avoidable hospitalisations. Care home staff can feel unsupported to look after residents at the end of life. Approaches for improving end-of-life care are often education-focused, do not triage residents and rarely integrate clinical care. This study will adapt an evidence-based approach from Australia for the UK context called ‘Palliative Care Needs Rounds’ (Needs Rounds). Needs Rounds combine triaging, anticipatory person-centred planning, case-based education and case-conferencing; the Australian studies found that Needs Rounds reduce length of stay in hospital, and improve dying in preferred place of care, and symptoms at the end of life.Methods and analysisThis implementation science study will codesign and implement a scalable UK model of Needs Rounds. The Integrated Promoting Action on Research Implementation in Health Services (i-PARIHS) framework will be used to identify contextual barriers and use facilitation to enable successful implementation. Six palliative care teams, working with 4–6 care homes each, will engage in two phases. In phase 1 (February 2021), stakeholder interviews (n=40) will be used to develop a programme theory to meet the primary outcome of identifying what works, for whom in what circumstances for UK Needs Rounds. Subsequently a workshop to codesign UK Needs Rounds will be run. Phase 2 (July 2021) will implement the UK model for a year. Prospective data collection will focus on secondary outcomes regarding hospitalisations, residents’ quality of death and care home staff capability of adopting a palliative approach.Ethics and disseminationFrenchay Research Ethics Committee (287447) approved the study. Findings will be disseminated to policy-makers, care home/palliative care practitioners, residents/relatives and academic audiences. An implementation package will be developed for practitioners to provide the tools and resources required to adopt UK Needs Rounds.Registration detailsRegistration details: ISRCTN15863801.

End of life care for people with dementia: an intervention to promote collaborative working between care home staff and healthcare practitioners

2012 ◽  
Vol 2 (Suppl 1) ◽  
pp. A23.1-A23 ◽  
Author(s):  
Caroline Nicholson ◽  
Claire Goodman ◽  
Elspeth Mathie ◽  
Sarah Amador ◽  
Natasha Baron ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Care Home ◽  
Life Care ◽  
Care Home Staff ◽  
People With Dementia ◽  
Collaborative Working

scholarly journals EMPOWERING CARE HOME STAFF TO DELIVER QUALITY END OF LIFE CARE: THE IMPACT OF THE SIX STEPS TO SUCCESS PROGRAMME ON END OF LIFE CARE IN CARE HOMES IN NORTH WEST ENGLAND

2014 ◽  
Vol 4 (Suppl 1) ◽  
pp. A32.2-A32
Author(s):  
Mary O'Brien ◽  
Jennifer Kirton ◽  
Katherine Knighting ◽  
Rob Gandy ◽  
Barbara Jack ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Care Home ◽  
Care Homes ◽  
Life Care ◽  
North West ◽  
Care Home Staff ◽  
The Impact

Improving the end-of-life for people with dementia living in a care home: an intervention study

2013 ◽  
Vol 25 (11) ◽  
pp. 1849-1858 ◽  
Author(s):  
Gill Livingston ◽  
Elanor Lewis-Holmes ◽  
Catherine Pitfield ◽  
Monica Manela ◽  
Diana Chan ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Care Home ◽  
Family Satisfaction ◽  
Care Homes ◽  
Life Care ◽  
Do Not Resuscitate ◽  
Post Intervention ◽  
People With Dementia ◽  
Advance Care

ABSTRACTBackground:One in three adults, most of whom are living in a care home at the time, dies with dementia. Their end-of-life is often in hospital, where they may experience uncomfortable interventions without known benefit and die rapidly with uncontrolled pain and comfort needs. This study aimed to improve end-of-life care for people with dementia in a care home by increasing the number and implementation of advanced care wishes.Methods:We recruited staff, residents with dementia, and their relatives from a 120-bed nursing home in London, UK. The intervention was a ten-session manualized, interactive staff training program. We compared advance care wishes documentation and implementation, place of death for residents who died, and themes from staff and family carers’ after-death interviews pre- and post-intervention.Results:Post-intervention there were significant increases in documented advance care wishes arising from residents’ and relatives’ discussions with staff about end-of-life. These included do not resuscitate orders (16/22, 73% vs. 4/28, 14%; p < 0.001); and dying in the care homes as opposed to hospital (22/29, 76% vs. 14/30, 47%; p < 0.02). Bereaved relatives overall satisfaction increased from 7.5 (SD = 1.3) pre-intervention to 9.1 (SD = 2.4) post-intervention; t = 17.6, p = 0.06. Relatives reported increased consultation and satisfaction about decisions. Staff members were more confident about end-of-life planning and implementing advanced wishes.Conclusion:This small non-randomized study is the first end-of-life care in dementia intervention to report an increase in family satisfaction with a reduction in hospital deaths. This is promising but requires further evaluation in diverse care homes.

scholarly journals P-198 Care home staff experiences of palliative and end-of-life care in care homes during COVID-19

2021 ◽  
Author(s):  
Izabele Batkovskyte ◽  
Lori Bourke ◽  
Clare Ellis-Smith ◽  
Anna Bone ◽  
Claire Goodman ◽  
...  
Keyword(s):  
End Of Life ◽  
End Of Life Care ◽  
Care Home ◽  
Care Homes ◽  
Life Care ◽  
Care Home Staff ◽  
Staff Experiences

Older people dying with dementia: a nationwide study

2012 ◽  
Vol 24 (10) ◽  
pp. 1581-1591 ◽  
Author(s):  
Koen Meeussen ◽  
Lieve Van den Block ◽  
Michael Echteld ◽  
Nicole Boffin ◽  
Johan Bilsen ◽  
...  
Keyword(s):  
Older People ◽  
End Of Life ◽  
Elderly People ◽  
Cognitive Abilities ◽  
End Of Life Care ◽  
Large Scale ◽  
Care Home ◽  
Life Care ◽  
Early Palliative Care ◽  
People With Dementia

ABSTRACTBackground: Large-scale nationwide data describing the end-of-life characteristics of older people with dementia are lacking. This paper describes the dying process and end-of-life care provided to elderly people with mild or severe dementia in Belgium. It compares with elderly people dying without dementia.Methods: A nationwide retrospective mortality study was conducted, via representative network of general practitioners (GPs) in 2008 in Belgium, with weekly registration of all deaths (aged ≥ 65) using a standardized form. GPs reported on diagnosis and severity of dementia, aspects of end-of-life care and communication, and on the last week of life in terms of symptoms that caused distress as judged by the GP, and the patients’ physical and cognitive abilities.Results: Thirty-one percent of our sample (1,108 deaths) had dementia (43% mildly, 57% severely). Of those, 26% died suddenly, 59% in care home, and 74% received palliative treatment, versus 37%, 19%, and 55% in people without dementia. GP–patient conversations were less frequent among those with (45%) than those without (73%) dementia, and 11% of both groups had a proxy decision-maker. During the last week of life, physical and psychological distress was common in both groups. Of older people with dementia, 83% were incapable of decision-making and 83% were bedridden; both significantly higher percentages than found in the group without dementia (24% and 52%).Conclusions: Several areas of end-of-life care provision could be improved. Early communication and exploration of wishes and appointment of proxy decision-makers are important components of an early palliative care approach which appears to be initiated too infrequently.

scholarly journals Key Components for the Delivery of Palliative and End-of-Life Care in Care Homes in Hong Kong: A Modified Delphi Study

2022 ◽  
Vol 19 (2) ◽  
pp. 667
Author(s):  
Helen Yue-Lai Chan ◽  
Cecilia Nim-Chee Chan ◽  
Chui-Wah Man ◽  
Alice Dik-Wah Chiu ◽  
Faith Chun-Fong Liu ◽  
...  
Keyword(s):  
Palliative Care ◽  
Hong Kong ◽  
End Of Life ◽  
Delphi Study ◽  
End Of Life Care ◽  
Care Home ◽  
Local Context ◽  
Life Care ◽  
Home Setting ◽  
Modified Delphi

Integrating the palliative care approach into care home service to address the complex care needs of older adults with frailty or advanced diseases has been increasingly recognized. However, such a service is underdeveloped in Hong Kong owing to socio-cultural and legal concerns. We adopted a modified Delphi study design to identify the key components for the delivery of palliative and end-of-life care in care home settings for the local context. It was an iterative staged method to assimilate views of experts in aged care, palliative care, and care home management. A multidisciplinary expert panel of 18 members consented to participate in the study. They rated their level of agreement with 61 candidate statements identified through a scoping review in two rounds of anonymous surveys. The steering group revised the statements in light of the survey findings. Eventually, the finalized list included 28 key statements concerning structure and process of care in seven domains, namely policy and infrastructure, education, assessment, symptom management, communication, care for dying patients, and family support. The findings of this study underscored concerns regarding the feasibility of statements devised at different levels of palliative care development. This list would be instrumental for regions where the development of palliative and end-of-life care services in care home setting is at an initial stage.

scholarly journals The facilitators and challenges of dying at home with dementia: A narrative synthesis

2018 ◽  
Vol 32 (6) ◽  
pp. 1042-1054 ◽  
Author(s):  
Caroline Mogan ◽  
Mari Lloyd-Williams ◽  
Karen Harrison Dening ◽  
Christopher Dowrick
Keyword(s):  
Palliative Care ◽  
End Of Life ◽  
Health Care Professionals ◽  
End Of Life Care ◽  
Narrative Synthesis ◽  
Life Care ◽  
Eligibility Criteria ◽  
People With Dementia ◽  
Care At Home ◽  
At Home

Background: It is reported that, given the right support, most people would prefer to die at home, yet a very small minority of people with dementia do so. At present, knowledge gaps remain on how best to support end-of-life care at home for people with dementia. Aim: To identify and understand the challenges and facilitators of providing end-of-life care at home for people with dementia. Design: Narrative synthesis of qualitative and quantitative data. Data sources: The review adhered to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. A systematic literature search was conducted across six electronic databases (AMED, BNI, CINAHL, EMBASE, MEDLINE and PsycINFO) and reference lists of key journals were searched up to July 2017. Results: Searches returned 1949 unique titles, of which seven studies met all the eligibility criteria (four quantitative and three qualitative). Six key themes were identified – four facilitators and two challenges. Facilitators included ‘support from health care professionals’, ‘informal caregiver resilience and extended social networks’, ‘medications and symptom management’ and ‘appropriate equipment and home adaptations’. Challenges included ‘issues with professional services’ and ‘worsening of physical or mental health’. Conclusion: People with dementia may not always require specialist palliative care at the end of life. Further research is required to overcome the methodological shortcomings of previous studies and establish how community development approaches to palliative care, such as compassionate communities, can support families to allow a greater number of people with dementia to die at home.

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