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End of life and palliative care

Diagnosis, post-diagnostic support

A considerable number of strategies specifically identified that the needs of people with dementia at the End of Life and Palliative Care were distinct and require specific consideration. In a number of the strategies, the care and support of a person with dementia was linked or addressed by the same section; as a result, we have included commitments regarding advanced dementia within this section.

Both France and Malta commit in broad terms to improving the provision of end of life and palliative care for people, with the latter including a specific reference to ensuring adequate pain relief.

Care, support and advanced planning

The Welsh strategy’s “teams around the individual” approach is also referenced in this section, particularly in relation to the importance of making advanced decisions and ensuring an agreed palliative care pathway is in place. The Norwegian strategy also focuses on the need for specialist team to provide such treatment, committing to establishing competence networks of nurses working on palliative care.

The Flanders strategy follows a similar approach in relation to the development of dementia-specific early care planning guidelines, linked to quality indicators, whilst also committing to coordination between dementia centres of excellence and palliative care networks to encourage early care planning.

The Israeli strategy contains a focus on the need for advanced and early planning (both through advanced health care directives or proxy decision maker), whilst also recognising the need for the provision of home care or home hospice care from multidisciplinary staff to deliver good quality palliative care. This recognition of other locations is reflected in Germany’s strategic document which includes the need for the development of offers of palliative care both at home and in inpatient facilities, with a particular focus on dementia.

The Flanders strategy is distinct in its commitment to the use of an application (intended for use by care organisations), titled “before I forget”, which encourages people to discuss their wishes throughout their life which can then inform care at the end of life.

The Spanish neurodegenerative strategy recognised the need to support both the person with the condition and carers at the advanced phase of illness and at the end of life. Specifically, the strategy calls for palliative support to be offered in the person’s own home or at a hospital level, with the service based on the needs of the person.

Institutions

Both the Cypriot and Greek strategies are focused on institutional delivery of palliative and end of life care. The former specifically focused on the creation of two new palliative care facilities which aimed to improve to services as well as reducing inefficient resource use in general hospitals. As with other countries, Greece will also use develop specific care guidelines to guarantee the quality of care provided for people with dementia at the end of life. Similarly, the Cypriot strategy proposes upgrading and investing in existing institutions (e.g. nursing homes) to provide better quality care at the end of life.

Carers and families

Israel and Malta both include specific commitments around the need to ensure that families are informed about the progression of the person with dementia at the end of life and adequately supported (e.g. through psychological services). On a related theme, the Welsh strategy acknowledges the need for appropriate bereavement services to be available to ensure the needs of families and carers of people with dementia are met. As well as highlighting the need for coordinated and person-centred care, the English strategy also commits to ensuring bereavement support for carers and a right to stay for relatives when a person with dementia is near the end of life, either in hospital or in a care home.

Models and frameworks

The high level commitment within the Scottish strategy is to ensure that more people get timely access to good quality palliative and end of life care. As part of it, there is a commitment to test a new model of support of people with advanced dementia (which builds on previous models of community-based care), whilst also seeking to examine specific improvements in palliative and end of life care for people with dementia as part of the government’s existing national work.

The Finnish strategy commits local authorities and joint authorities to establishing local clinical pathways for people with dementia which includes good palliative and end of life care, with services provided in line with national recommendations. Similarly, both the Northern Irish and Portuguese strategies contain high-level commitments to ensure that palliative care is developed in line with existing national frameworks and organisations which have responsibility for palliative and end of life care.

On this theme of utilising existing structures and frame-works, the Slovenian strategy commits to improving the provision of palliative and end of life care, noting the European Association for Palliative Care guidance around the issues of anticipatory care planning, maintenance of function, as well as involvement of carers and family members.

 

 
 

Last Updated: Monday 29 April 2019

 

 
  • Acknowledgements

    This report received funding under an operating grant from the European Union’s Health Programme (2014-2020). The content of the Yearbook represents the views of the author only and is his/her sole responsibility; it cannot be considered to reflect the views of the European Commission and/or the Consumers, Health, Agriculture and Food Executive Agency or any other body of the European Union. The European Commission and the Agency do not accept any responsibility for use that may be made of the information it contains
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