ENRICHEnabling Research in Care Homes
End of life care for people with dementia
Professor Steve Iliffe, Research Department of Primary Care and Population Health, University College London
There has been an increase in research of dementia end-of-life care in recent years, in this blog Professor Iliffe looks at the progress being made.
The British Medical Association (BMA) has called for improvements in end of life care 1 , adding its voice to a separate report from the Royal College of Physicians (RCP) on the provision of end of life care across the country.2 The RCP reported that steady progress has being made since the removal of the Liverpool Care Pathway (LCP), but expressed concerns about the lack of a 24 hour palliative care service, and the amount and quality of communication with patients who are able to communicate.
Improving communication is a central theme in the BMA report, perhaps because communication was seen as one of the core failings of the LCP. The additional complication for people with dementia is that they may lack both cognitive capacity and the ability to communicate verbally towards the end of life. We note with disappointment that the RCP report does not mention those who are unable to communicate for themselves, like people with advanced dementia.
These communication difficulties demonstrate the importance of early discussions and advance care planning, but as the report from the BMA points out not all people with dementia and their families are willing to have such conversations. This can leave end-of-life care for people with dementia in a state of confusion and uncertainty when at the end of life. It is important to recognise and respect this reluctance to discuss advance care planning by people with dementia and their families, without forgetting that it is sometimes the doctor who does not want to have this discussion. Often the doctors who are in a position to have these discussions are not palliative care specialists and have not received a depth of training or experience in this area. More needs to be done to improve the communication skills about end of life care, not just doctors but also other health and care professionals who lack the confidence to initiate these conversations.
The case of dementia is not only complex from a cognitive impairment perspective and the challenge of engaging and having conversations about end of life care, but people with dementia are often older, frailer and with multiple comorbidities. This raises a question about who should provide end-of-life care. In present circumstances end of life care cannot be a specialist activity given the numbers of people with dementia in the UK, Dementia can be so complex that no one specialist may be best suited to care for a person with dementia. An old age psychiatrist may be best experienced to advise/treat behavioural and psychological symptoms, but a palliative care physician may be better placed to advise on complex pain management. Although a combination of these specialities is desirable, in our experience this can often result in a lack of continuity of care for the individual and poor communication across teams, hence poor care and outcomes for the person with dementia and their family.
Many people with dementia live in the community, either their own home or a care home and are cared for by their relatives, home care workers, care home assistants and their general practitioner. In this sense end-of-life care should be seen as part of everyone’s role.
Encouragingly there has been an increase in research of dementia end-of-life care in recent years3, including research aimed at helping all health and care professionals (not simply specialist teams) to help make end-of-life decisions4. A consensus definition of optimal palliative care for people with dementia has been developed5, and we are learning more about individual care planning and optimising guidance for clinical commissioners6. The Care Quality Commission’s recent report, ‘A different ending’ , identifies people with dementia as a group likely to get less end of life care than they need, and gives an example of how services can be configured to improve end of life care whilst also reducing service costs7. We anticipate that further work to improve end of life care for people with dementia will take place in care homes, and that the ENRICH network will be busy.
1. Wise J. BMA calls for changes to end of life care. BMJ 2016;352(1527).
2. Royal College of Physicians. End of Life Care Audit – Dying in Hospital: National report for England 2016. In: RCP, ed. London, 2016.
3. van der Steen. Dying with Dementia: What We Know after More than a Decade of Research. Journal of Alzheimer’s Disease 2010;22(1):37-55.
4. Davies N, Manthorpe J, Sampson EL, 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).
5. van der Steen, Radbruch L, Hertogh CM, et al. White paper defining optimal palliative care in older people with dementia: A Delphi study and recommendations from the European Association for Palliative Care. Palliat Med 2014;28(3):197-209.
6. Lee RP, Bamford C, Exley C, et al. Expert views on the factors enabling good end of life care for people with dementia: a qualitative study. BMC palliative care 2015;14(1):32.
7. Care Quality Commission A different ending: End of life care review CQC London May 9th 2016
Dr Nathan Davies, NIHR School for Primary Care Research Post-Doctoral Fellow, Research Department of Primary Care and Population Health, UCL, Royal Free Campus, London, NW3 2PF
Dr Steve Iliffe, Emeritus Professor, Research Department of Primary Care and Population Health, UCL, Royal Free Campus, London, NW3 2PF