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P14. End-of-life care

Detailed Programme, abstracts and presentations

P14. End-of-life care (Saturday, 6 October, 8.30-10.00, Europa 2)

P14.1. Building consensus for dementia palliative care

Dr. Una MacConville, Grainne McGettrick and Marie Lynch

Dementia Palliative Care is a short hand way to talk about ways to meet the end-of-life care needs of people with dementia, their families and carers, reflecting the qualities of person-focused dementia care and the holistic focus of specialist palliative care.

The Alzheimer Society of Ireland (ASI) and the Irish Hospice Foundation (IHF) undertook a six-month feasibility project to build a consensus on the direction of dementia palliative care.

The aim was to gain an understanding of the multiple perspectives involved and identify and signpost a future programme of work.

Through a process of consultation and dialogue with stakeholders—specialists, service providers and family members—a number of issues emerged. The needs of people with dementia and their families can be complex and may cross several service frameworks over the duration of the illness.

Partnerships, networks and shared care models between specialisms and services, based on need and not diagnosis, support end of life care and planning for people with dementia.

In some sectors and services, access to specialist knowledge and advice is not readily available and can particularly impact on end of life care and planning, for example some services have difficulty accessing medical advice about hydration and nutrition and a lack of familiarity with the patient and concerns about outcomes can lead to inappropriate admissions to acute settings.

There are pockets of informal partnerships and networks between services and disciplines that support end of life care for people with dementia. Collaborations across services and disciplines, with a shared vision of person focused care, based on need and not diagnosis, demonstrates the potential to develop integrated partnerships and models of shared care that could form the foundation for a model for dementia palliative care.

P14.2. Comparing end-of-life care in dementia and severe mental illness in the elderly.

Olusegun A. Adedun, Mary Cosgrave

Objectives: To compare measures of end-of-life between two groups of decedent elderly (elderly with severe and enduring mental illness and dementia).

Methods: A retrospective review of charts of 37 decedent elderly patients aged over 60 and were residents in long-term care in a psychiatric hospital over a five year period. A questionnaire filled by the researcher, was developed to capture demographic and clinical information about the end-of-life care of both groups.

Results: Twenty (54.1%) decedent patients had dementia and seventeen (45.9%) had severe and enduring mental illness. The results showed a significantly better performance in the dementia group in the following measures: assessment and treatment of pain; decisions about resuscitation; expectation of death; advanced care planning. They also fared better in most non-statistically significant measures of end-of-life care. In spite of this, the dementia group still fared way below expectation, with significant room for improvement.

Conclusion: This study shows huge inequalities in the provision of end-of-life care and the need for significant improvement in both groups. This will be achieved through multi-agency collaboration and the development of a dementia strategy in Ireland that truly incorporates a robust end-of-life care plan.

P14.3. Feedback on end-of-life care in dementia: the Follow up project

Nienke (J.A.) Boogaard, Mirjam C. van Soest–Poortvliet, Henrica  C.W. de Vet, Han (J.R.) Anema, Cees M.P.M Hertogh, Jenny T. van der Steen

The population of people living with dementia is growing and a sizable proportion of these people will stay in care institutions until their death. It is important that these people receive quality care now and in the future and that they and their loved ones experience a good dying process. Family evaluations have been instrumental in providing of feedback on the quality of care provided by nursing homes. However, it is unknown if nursing homes use this feedback to effectively improve their care, also in case the evaluations are not publicly available.

To assess the quality of end-of-life care and the quality of dying, and in order to improve these qualities, in our study, bereaved families will use the well-tested End-of-Life in Dementia-(EOLD) instruments. We will implement the EOLD-Satisfaction With Care scale (EOLD-SWC) and the EOLD-Comfort Assessment in Dying scale (EOLD-CAD) in 15 nursing homes starting in spring 2012. In a cluster-Randomized Controlled Trial design with randomisation at the level of nursing homes, we will assess effects of feedback with two intervention groups of each five nursing homes and one control group of five nursing homes. Implementation in this case is defined as in two ways. In the first intervention group, the instruments are used for evaluation of "generic" feedback (with cumulative evaluations by family members, therefore with average scores). Family ratings are entered using a feedback instrument which then generates mean scores but also provides improvement suggestions, The second intervention group uses family rating of individual cases (“patient specific feedback"), where the evaluation of the family is discussed in the multidisciplinary team meetings. We will examine if we can find what the effect of implementation of the EOLD-instruments is on how the quality of end-of-life care and quality of dying are experienced and whether generic feedback or patient specific feedback yields better results. In addition, we will catalogue barriers and facilitators for implementation of both instruments and the improvements based on feedback.

The changes in quality of care and quality of dying will be determined and compared in all three groups. The statistical analyses are based on (time dependent) multi level analyses. We will discuss the theoretical background of the study, the design, and the first findings on barriers and facilitators for implementation.

P14.4. Quality indicators for the organization of palliative dementia care: the FP7 IMPACT project

Yvonne Engels, Jasper Riet Paap, Myrra Vernooij-Dassen

Funded by: EU FP7 (2011-2015)

Introduction: Quality improvement has become a central aspect in health care. By measuring quality, more insight can be gained in weak and strong aspects of health care. Quality indicators (QIs)can be used for this. QIs are explicitly defined and measurable items referring to the structures, processes, or outcomes of care. In the past decennium several sets of quality indicators have been developed for dementia care, and also sets for (the organization of) palliative care. In the EU FP7 IMPACT project, we selected QIs as a first stage to assess and improve the organisation of palliative dementia care.

Methods: In 2011, a literature review took place to develop a framework of and make an overview of all QIs for the organisation of palliative dementia care. In 2012, about 40 European experts (clinicians and researchers) in dementia care and in palliative care were invited  to take part in a three round modified Rand Delphi procedure. In the first written round, they were invited to select the most relevant QI per domain. In the second written round, each remaining QI has been rated on clarity and usefulness (9-point Likert scale). In the final round, a consensus meeting took place. The results of round 2 were fed back and those QIs that were not agreed upon were discussed in order to reach consensus.

Results: We were able to develop a useful set of QIs for the organisation of palliative dementia care in Europe. They concern e.g. 24 h access and availability of palliative care, infrastructure, assessment tools, continuity of care, education and training, structured documentation, and quality and safety issues.

Conclusions: Although palliative dementia care differs per setting, country and culture, we were able to develop a set of QIs for the organisation of palliative dementia care. These QIs will be used as part of a large intervention study in home care, nursing homes, hospitals, hospices in Europe that take care of persons with advanced dementia.

P14.5. Old People and Culture of Care

Andreas Heller, Dirk Müller, Elisabeth Wappelshammer

Palliative Care is a highly relevant concept of care for people suffering from dementia and their rellies and professional carers. Therefore the IFF-Department of Palliative Care and Organizational Ethics/University of Klagenfurt/Austria offers an extra occupational study course in palliative and dementia care in cooperation with the UNIONHILFSWERK Berlin.

The study course teaches principles of interprofessional palliative care in old age with a focus on the special needs of very old people with dementia at the end of life and their carers. This offer is designed for experienced professionals who work in social and health services of the in-patient and outpatient sector, in particular nurses, lawyers, physicians, spiritual as well pastoral workers, gerontologists, psychologists, social workers, therapists, teachers in relevant disciplines.

The study course contains four modules à four days (160 hours) and ends with a university certificate. The study course units are held alternately in Berlin and Vienna. The study course language is German.

Aims of the academic program

  • Basic attitudes, interdisciplinary knowledge and skills in palliative and dementia care
  • Development of social competence, self-reflection and skills to deepen respect in professional practice and socio-political framework.
  • To raise awareness for necessary change processes at the level of organizations and in society and to enable students to support such processes of change.
  • The participants themselves should be able to provide impacts on development of their  own facilities.

Reflections and Conclusions after the first study course in 2011/2012

Based on the results of the qualitative evaluation we present the developement and outcomes of the learning process within the first study course which involved the students in various respects – cognitively, mentally, emotionally and socially.

P14.6. The organization of palliative care in Europe: building bridges between cancer and dementia palliative care

Myrra Vernooij-Dassen, Nahan Davies, Yvonne Engels, Steve Iliffe

Background. Adequate organization is a prerequisite for good care. It is widely recognized that palliative care is fragmented and organization‐oriented rather than patient‐oriented. Moreover, the availability of palliative care services varies widely across Europe. Palliative care for cancer patients is relatively well understood and widely accepted. Therefore The EU IMPACT project  (IMplementation of quality indicators in PAlliative Care study) compares palliative care  which is relatively well developed (cancer) with another that is just starting to receive attention (dementia). The first aim of IMPACT is to identify national policy regarding the organization of palliative care for both conditions and to map patterns of service organisation.

Methods. A mapping exercise of service maps, describing palliative care services for people with cancer and with dementia using a standard matrix, was carried out in five research sites in Norway, Holland, Germany, England and Italy, respectively. The matrix had three levels: micro (direct provision of palliative care); meso (management or specialist resources supportive to palliative care services) and macro (policy and guidelines on palliaitive care). Subject matter experts (SEMs) with knowledge of palliative care services in primary care (own home or nursing home), secondary care (hospital) and tertiary care (hospice) were identified for each level of the matrix, and interviewed. Interviews were taped and transcribed in the national language, and key findings were translated into English for comparison.

Results. We have identified three models of palliative care. The first corresponds to the hierarchy of primary /secondary/ tertiary level services, and applies to Italy, England and the Netherlands. The second has a more complex distribution of palliative care, with services functioning at secondary and tertiary level; this applies to Germany. The third model has palliative care as an intermediary service between primary and combined secondary and tertiary level services; this model applies to Norway.

Conclusions. There are profound differences in the organisation of palliative care with potential cost consequences. This basic descriptive typology will be very useful in developing interventions to improve the quality of palliative care that fit each condition in each country. In the next phase of IMPACT we are investigating barriers and facilitators in  cancer and dementia palliative care.  



Last Updated: Thursday 15 November 2012