Improving end-of-life care for all groups
Project manager at Marie Curie
IN January 2016 Marie Curie launched the Big Lottery-funded ‘Including Diverse Communities in End of Life Care’ project.
It explored the needs of three groups of people living with a terminal illness in Cardiff and the Vale of Glamorgan.
The groups were identified based on research around gaps and challenges in palliative care provision.
The groups were people with:
■ Dementia
■ Learning disabilities
■ Different or no religious beliefs These groups, often with a wide range of needs, face many challenges and barriers to accessing healthcare services, including palliative and end-of-life care.
The project identified some consistent barriers across all three groups and some specific to each group.
Across all three, there was often a limited understanding of palliative care and who could access our services. Moreover, misconceptions about assisted dying was also a factor impacting and impeding access to care.
This lack of knowledge and understanding about our services and palliative care was also evident within social care professionals.
The project found that despite dementia being one of the most common causes of death in the UK, it is not always recognised as a terminal condition.
The lack of a formal pathway and limited availability of palliative care services makes it harder for people with dementia to access services.
In assessing the needs of people with learning difficulties, the project found carers and professionals may try to “protect” a person for whom they care for from talking about death. There were also instances of carers not being listened to by statutory service providers. Moreover, the reality of the increased risk of people with learning difficulties of developing dementia should be considered by Marie Curie and its statutory partners.
The project found people from different religious backgrounds often expressed concerns about palliative care staff ’s ability to meet their spiritual and cultural needs.
Access to information on Marie Curie services and language and communication issues were also areas where improvements can be achieved.
With estimates of people in the UK identifying as non-religious at around 50%, the project found that a lack of pastoral support for this group was a concern.
The project’s recommendations were developed by analysing feedback and identifying key themes and areas for improvement.
Our recommendations fall within three thematic areas: community engagement, building inclusive services, and increasing flexibility of services.
Our community engagement needs to be part of Marie Curie’s core services and delivered at local level.
As experts in palliative and endof-life care, we should work to educate both professionals and the public about these issues.
Information in a variety of accessible formats should be widely available in community, health and care settings and should include key facts and messages which counteract common misconceptions that can serve as barriers to accessing services.
In addressing the second area for improvement; building inclusive services, Marie Curie should focus on connecting with beliefbased communities.
Exploring new ways of providing spiritual and pastoral care to patients of all faiths and none will enable individual choices in care.
Palliative care staff should continue to be supported to develop understandings of different spiritual and cultural practices and beliefs.
Our care staff are being trained and supported to understand how dementia and learning disabilities impact on a person and their care experience.
Lessons have been learnt by the hospice which will be considered in future care planning and service delivery.
Lastly, to develop more flexible services, Marie Curie should work with service planning bodies across health and social care to explore models which would enable earlier interventions and should consider the delivery of advance care planning services not linked to receiving any other services, to encourage more people to prepare for end of life needs.
This project has improved our understanding of the barriers faced in accessing palliative care services for people with dementia, learning disabilities, and different or no religious beliefs.
We have gained more knowledge and experience working directly with these groups and it is hoped that the recommendations from this project can be of value to other service providers in supporting equitable access to palliative care services for all people.