Lead Investigator: Professor Steve Iliffe
Institution: University College London
Grant type: Project grant
Duration: 18 months
Start Date: October 2014
End Date: March 2016
Scientific Title: After the Liverpool Care Pathway - What next for people with dementia?
What was the project, and what did the researchers do?
Administration of end of life care for people with dementia is often of poor quality, with little recognition of how to manage pain or help the person to be comfortable. . Studies suggest that many healthcare practitioners from both palliative and dementia specialties lack the confidence to provide quality end of life care for people with dementia. The Liverpool Care Pathway was a guide for professionals for the delivery of care for people in the final hours and days of their lives, however this guide has since been removed due to findings that there were failures in how the pathway was being used. Since this removal, it became clear that there was a gap in the guidance for practitioners when it came to end of life care, leaving those providing this care to people with dementia without guidelines or even a reference for good quality care.
Using data from interviews with family members who were primary carers for people with dementia the researchers investigated what was important to carers in end of life care. They then used these as a reference, with advice from practitioners, to develop a set of guidelines for care of people with dementia. Lastly, these 'rules of thumb' were tested and evaluated in collaboration with practitioners in real life settings.
In order to collect information about the concerns of both carers and health care professionals, the researchers conducted focus groups with former carers and practitioners. Following these focus groups the key messages were identified and the findings were used to create flowcharts outlining guidelines for end of life care, as identified by the participants. These guidelines were evaluated and refined by a further working group made up of health and social care practitioners, family carers and members of the research team.
The end of life guidelines were then put in to practice in a hospital ward and a general practice, as well as by a community nursing team and two palliative care community teams. Practitioners were encouraged to use the rules of thumb as a framework when providing end of life care for a period of six months.
What were the key results and how will this benefit people with dementia?
An initial literature review identified six broad areas of difficult decision-making in providing end of life care for people with dementia. These were: 1) difficulties with swallowing and problems with eating, 2) agitation/comfort, 3) ending life sustaining medical treatment, 4) personhood, 5) stopping routine care (i.e. bathing and turning of a bed bound person), and 6) communication between practitioners.
The rules of thumb developed by the researchers in response to the findings of the literature review and focus groups were developed into four flow charts giving guidance to practitioners. These helped them to work out the correct response to eating and swallowing difficulties, agitation and restlessness, reviewing treatments and interventions, and providing routine care at the end of life.
The rules of thumb developed in this study are the first of their kind to be developed for end of life care for people with dementia. They offer a novel approach and address issues that many practitioners struggle with. Importantly, they are also designed to be practical and easy to follow. Feedback from the practitioners involved in the study stated that they found it a helpful guidance and reminder tool, which also served as a prompt to open communication with families and family carers surrounding end of life care. These guidelines could provide the support system of practitioners, family carers and family members of people with dementia nearing the end of their life with a level of confidence and reassurance, allowing for a better end of life experience for people with dementia.
What happened next? Future work and additional grants
Prof Steve Iliffe has retired from academic work and is now Emeritus Professor at UCL. He will continue to work on the topic of developing guidelines for best practice , in an honorary role.
Dr Nathan Davies who also led the study has received an NIHR School for Primary Care Fellowship allowing him to continue to develop his work with the field of end of life care for people with dementia, focussing on the needs of family carers. He has also received an Alzheimer's Society Junior Fellowship to help to continue this work.
Following the success of this study the researchers are continuing their work on decision making towards the end of life for people with dementia.They are using the feedback from this study and focussing on developing a decision aid for families to use following the same principles of practical 'rules of thumb'.
How were people told about the results? Conferences and publications
Davies, N., et al.. After the Liverpool Care Pathway-development of heuristics to guide end of life care for people with dementia: protocol of the ALCP study. BMJ open 2015; 5(9), p.e008832.
Mathew R., et al.. Making decisions at the end of life when caring for a person with dementia: A literature review to explore the potential use of heuristics in difficult decision-making. BMJ Open 2016;6:e010416 doi:10.1136
Davies, N., et al.. A co-design process developing heuristics for practitioners providing end-of-life-care for people with dementia. BMC Palliative Care 2016, 15(68).
Lamahewa, K., Mathew, R., Wilcock, J., Iliffe, S., Manthorpe, J., Sampson, E.L., Davies, N. (In prep). A qualitative study exploring the difficulties influencing decision-making at the end-of-life for people with dementia. Health Expectations.
'End of life care for people with dementia: After the Liverpool Care Pathway'. The Eighth Annual Joint Conference from Age UK London and Social Care Workforce Research Unit & Making Research Count at King's College London, February 2016.
After the Liverpool Care Pathway - what next for people with dementia? An Introduction to Heuristics. Hospice UK, London, June 2016
'Can heuristics (rules of thumb) help aid practitioners make difficult decisions at the end-of-life for people with dementia?'. 45th Annual Conference for the Society of Academic Primary Care, Dublin, July 2016.
What makes difficult decision-making even more difficult in the context of dementia end of life care? 45th Annual Conference for the Society of Academic Primary Care, Dublin, July 2016.
The development of heuristics (rules of thumb) to help aid practitioners make difficult decisions at the end-of-life for people with dementia. Dementia Congress, Brighton, October 2016.
Using heuristics to guide the provision of end of life care for people with dementia. Nottingham University, December 2016.
Development of heuristics to guide decision making at the end of life for someone with dementia. The International Association of Gerontology and Geriatrics (IAGG) World Congress of Gerontology and Geriatrics, San Francisco, USA, July 2017.
Making decisions at the end of life when caring for a person with dementia: a literature review to explore the potential use of heuristics in difficult decision-making - WONCA, Istanbul, October 2015