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P21. Care approaches: Palliative care

Detailed programme, abstracts and presentations

P21.1. Large differences found in the organisation of palliative care in European nursing homes: EU PACE


1Vrije Universiteit Brussel (VUB), Brussels, Belgium, 2VUB, Brussels, Belgium, 3Radboud MC, Nijmegen, Netherlands, 4USCU, Rome, Italy, 5Lancaster University, Lancaster, United Kingdom, 6VUMC, Amsterdam, Netherlands, 7THL, Helsinki, Finland, 8Jagiellonian University, Krakow, Poland

Aims: In a previous EU-study IMPACT, a core set of structural quality indicators to assess the organisation of palliative care was developed and validated. As part of the current EU-funded project PACE, we aimed to evaluate and compare the organisation of palliative care in nursing homes in Belgium, England, the Netherlands, Poland, Finland and Italy, using these structural quality indicators.

Methods: In representative samples of nursing homes in Belgium, England, the Netherlands, Poland, Finland and Italy, in 2015, a structured questionnaire evaluating the IMPACT structural quality indicators set, was filled in by nursing home administrators, covering important domains of the organization of good clinical palliative care practice: (1) access to palliative care, (2) infrastructure, and (3) quality processes.

Results: We obtained nursing home administrators’ questionnaires in 305 of 322 participating nursing homes across six countries (95% response rate).

Regarding domain 1 (access): specialist palliative care teams were accessible in the facilities, ranging from 6% in Poland to 49% in Belgium. Opioids were not available at all in the facility in 27% in Poland and between 2% and 9% in the other countries.

Regarding domain 2 (infrastructure): specialized equipment such as syringe drivers were available in 36% in Italy up to 84% in England. Single bedrooms were available for dying residents in 27% in Poland up to 94% in England.

Regarding domain 3 (quality processes): regular multidisciplinary meetings were held in 51% of facilities in Finland up to 98% in the Netherlands. The presence of guidelines for managing the last three days of life ranged between 10% of facilities in Italy and 51% in England.

Conclusion: We found large heterogeneity in the organization of palliative care across these EU countries using the structural quality indicators set. Countries can use these indicators to identify areas for improvement in quality palliative care

P21.2. Admiral Nursing: A case management approach to palliative care


Dementia UK, London, United Kingdom

People with dementia do not live in isolation and any intervention is required to support their family carers also and to do so from diagnosis right through to the death of the person with dementia and in supporting family carers to pick up their lives again.  Admiral Nursing (AN) provides case management, supporting the whole family affected by dementia throughout its trajectory and adopting a palliative approach to address the changing needs and adjusting goals of care accordingly.

Case management has a successful history in supporting people with long term conditions and people with a diagnosis of severe mental illness (Challiset al.2010). Case management is a relatively new concept in dementia with early UK research being inconclusive (Iliffeet al.2014), however, it is proving to be a successful model in Holland (MacNeil Vroomen et al. 2016).

This presentation will have three strands a) the AN case management model in the context of b) results from UK wide service evaluation and 3) benchmarking against the EAPC White Paper defining optimal palliative care in older people with dementia.  The service evaluation; Getting Evidence into AN Services (GEANS), a mixed methods approach demonstrating the evidence for case management. GEANS was a co-produced evaluation framework and defines outcomes for AN with families and in supporting best practice in others.

Challis et al. (2010) Self-care and Case Management in Long Term Conditions: The effective management of critical interfaces. NIHR SDO programme website.

MacNeil Vroomenet al.(2016) The Cost-Effectiveness of Two Forms of Case Management Compared to a Control Group for Persons with Dementia and Their Informal Caregivers from a Societal Perspective. PLoS ONE 11(9): e0160908.

Van Der Steen, J.T.,et al.(2013) White paper defining optimal palliative care in older people with dementia. Palliative Medicine, 28 (3):197-209.

P21.3. Development of an e-learning program in dementia palliative care for health personnel working in Norwegian municipalities


1Norwegian National Advisory Unit on Ageing and Health, Tønsberg, Norway, 2Nedre Eiker municipality, Nedre Eiker, Norway, 3Trysil municipality, Trysil, Norway, 4University of Oslo, Oslo, Norway, 5Oslo Metropolitan University, Oslo, Norway

Background: Palliative care to people with dementia cannot rely solely on general principles of palliative care, but need to consider challenges specific for dementia. Research on this topic is sparse. In 2014, the European Association for Palliative Care (EAPC) published recommendations for optimal palliative care in older people with dementia based on available evidence and expert consensus. A Norwegian report documented insufficient palliative care offered to persons with dementia, and recommended to improve the competency among health personnel working in the field.

In 2017, the Norwegian Directorate of Health emphasized the need for education and training material on palliative care in dementia and Norwegian National Advisory Unit on Ageing and Health was given the mission to develop an e-learning program for nurses and auxiliary nurses working in the municipalities. This presentation reports from this assignment.

Method: An editorial committee consisting of six regular nurses with different competence developed the content of the program. An editorial team transferred text and pedagogical ideas to e-learning. A reference group with broad clinical expertise provided feedback from the first ideas to the completed program. There is consensus on all content. The technical solutions are developed by a Norwegian health tech company, Zeppelin.

Results: The program builds on the EAPC-recommendations and comprises three different modules with 23 lessons consisting of text, films, quiz, assignments for reflection and references. The duration of each lesson is 10–20 minutes. Module A introduces the basic concepts. Module B concerns how to plan and facilitate palliative care. Module C is specifically devoted to end-of-life care. The program has been tested with positive results and is available atæring/palliasjon-og-demens

Conclusion: An e-learning program in palliative dementia care, incorporating the EACP-recommendations, specifically targeted for groups of health personnel could be a convenient, flexible and cost-effective approach for clinical competence development.

P21.4. Supporting professionals to deliver Excellent End of life care in Dementia: the SEED programme


Newcastle University, Newcastle upon Tyne, United Kingdom

Background: Dementia is the commonest cause of death in older women in the UK, with 1/3 people with dementia dying in hospital. Despite the recent publication of updated national dementia guidance, there is still little high quality research to inform evidence-based end of life care (EoLC).

Aim: To better understand the factors that facilitate good EoLC in dementia from key stakeholder perspectives and use this data to develop a complex, evidence-based intervention for implementation and evaluation in primary care.

Methods: Participant views and experiences were explored using a range of qualitative methods (interviews, focus groups and case study ethnographic observations). Integrative analysis led to development intervention and implementation; the presentaiton will include details of this work and the intervention pilot trial data analysis and 1 year follow up. 

Results: A total of 144 participants were recruited: 30 national experts; 33 service managers; 53 front line staff, 11 people with dementia and 17 family carers.  Integrative analysis of our large dataset (119 interviews, 12 focus groups and 256 hours of ethnographic observation in care homes), led to an intervention focused on 7 key themes for good qulity EOLC in dementia, delivered by a specialist nurse in primary care teams. Sixty-two people with dementia and 42 family carers were recruited to the pilot trial from 4 general practices.

Conclusion: Seven key areas are important for the delivery of good quality EOLC in dementia; timely planning; recognising EOL; co-ordinating care; working effectively with primary care; managing hospitalisaiton; continuing care after death and supporting professional carers. Ongoing analysis from the pilot trial will be presented.  

P21.5. Older people’s experiences of dying in nursing and care homes: a systematic review of qualitative studies


FHSCE, St George's University of London and Kingston University, London, United Kingdom

Objectives: To identify and synthesise qualitative research investigating older people’s (65+ years) experiences of dying in nursing and care homes.

Methods and outcomes:  The review followed the Centre for Reviews and Dissemination (CRD) guidelines. Eight electronic databases (AMED, ASSIA, CINAHL Plus, Embase, HMIC, Medline, PsychINFO and Scopus) from 2001 to July 2017 were searched. Studies were included if they were qualitative, primary research and described the experiences of dying in care homes from the perspectives of the older people themselves, their families or care staff.

Results: 1305 articles were identified. Nine met the inclusion criteria. The earliest study was published in 2001 and the most recent in 2011. North American studies dominated and most studies used a mixture of observations and interviews but few studies involved interviews with older people themselves. All the included studies highlighted the physical discomfort of dying such as pain, pressure sores and thirst. Negative psychosocial experiences such as loneliness and depression were also often described as was limited support with spiritual needs.

Conclusions: The qualitative focus of this review broadens our understanding of older people’s experiences and highlights important psychosocial aspects of the experience frequently omitted in quantitative studies. The scarcity of relevant studies was perhaps surprising and more qualitative research giving a holistic understanding of older people’s experiences of dying in residential care homes is needed. Undertaking research on this topic is challenging in part because of the diversity in authors’ definitions of dying. Such research also requires great sensitivity but the dearth of qualitative research from the perspectives of those most closely involved in older people’s deaths, hampers service improvement.

P21.6. Determining necessary components, processes and contextual factors of successful advance care planning in nursing homes: a Theory of Change


1End-of-Life Care Research Group, Brussels, Belgium, 2Centre for Biomedical Ethics and Law, KULeuven, Leuven, Belgium, 3University Hospital Ghent, Ghent, Belgium, 4University of Cape Town, Cape Town, South Africa, 5Vrije Universiteit Brussel (VUB), Brussels, Belgium

Background Advance care planning (ACP) is a complex health intervention consisting of multiple interacting components. Guidelines for developing complex interventions recommend that researchers make transparent the choices behind intervention components, and how they potentially lead to desired outcomes (e.g. how ACP aligns desired and actual care). However, this has not been specified for a large number of complex interventions in nursing homes which makes it difficult to understand why these interventions were (not) effective and under which circumstances they can best be implemented and replicated. We used Theory of Change to create a causal pathway of ACP in nursing homes, i.e. what changes are expected, by means of which components and processes, and under which circumstances.

Methods Theory of Change is a participatory method of program design to improve understanding of how and why an intervention works. Resulting theories are presented as visual maps. We integrated results of two stakeholder workshops including managers, policy-makers, nursing staff, general practitioners (GPs) and representatives of older people, with a structured contextual analysis of Flemish nursing home facilities and a systematic review of preconditions for successful ACP.

Results ACP aims to improve correspondence between residents’ wishes and care and to ensure residents and family feel involved in planning future care. To achieve this, ten intervention components, each with a specific rationale for inclusion, were identified at three levels (resident/family, staff, facility): appointment of ACP trainer; management engagement; training ACP reference persons; in-service education for staff; information for GPs, residents and family; ACP conversations and documentation; regular reflection; multidisciplinary meetings; audit and tailoring.

Conclusion This Theory of Change map illustrates how ACP is expected to be effective in nursing homes. It reveals crucial intervention components including their rationale and highlights organizational factors that facilitate implementation. The intervention is currently being evaluated in a cluster RCT.



Last Updated: Tuesday 13 November 2018


  • Acknowledgements

    The 28th AE Conference in Barcelona received funding under an operating grant from the European Union’s Health Programme (2014-2020). Alzheimer Europe, CEAFA and Fundación Alzheimer España gratefully acknowledge the support of all conference sponsors.
  • European Union
  • Roche