Nathan Davies is a Senior Research Fellow at University College London focusing on care for people with dementia towards the end of life and supporting family carers. In this post he talks about his upcoming talk at the BGS Spring Meeting in Nottingham on his work developing rules of thumb for providing care towards the end of life for someone with dementia.
Can rules of thumb help manage uncertainty and the challenges facing practitioners caring for someone with dementia at the end of life?
We know that caring for someone towards the end of life can be a rewarding and intimate experience with that individual and those close to them. However, unfortunately for practitioners it can also be emotionally tough and challenging. This is particularly the case when caring for someone with dementia towards the end of life. Practitioners are faced with 1) the uncertainty of the disease itself; 2) a lack of capacity and ability to clearly communicate with the person; and 3) a multitude of different symptoms and complications. In these situations practitioners often find themselves asking ‘what is the best thing to do?’ and ‘how should I do that?’ We know practitioners often feel uncomfortable with providing end of life care for people with dementia and may lack confidence in this area of care.
Sadly there is not much guidance out there to help practitioners. In light of this and the departure of the Liverpool Care Pathway, we set out to develop a simple and practical toolkit to help practitioners with this uncertainty and provision of care for someone with dementia towards the end of life.
But, do we really need another long, inaccessible and jargon cluttered guideline or another pathway? We thought not. Instead could we develop something much simpler easy to remember, prompts us to think and leads us to an action? We took inspiration from the FAST rule of thumb used in identifying someone who is having a stroke.
In speaking to practitioners and families we found that some of the most common challenges and difficulties which practitioners face include: swallowing and eating difficulties; agitation and restlessness; providing routine care; and reviewing treatments and interventions at the end of life. It was an ambitious task but we produced four rules of thumb to cover these common challenges.
The rules of thumb are organised as flowcharts with clear questions and statements guiding the user through to an action. The full set can be viewed on our UCL webpages.
Our rule covering agitation and restlessness can be seen in the figure as an example. The key rule here is to not assume that the dementia is the cause of the agitation/restlessness, but to look for an underlying cause. It also acts as a prompt to the practitioner, getting them to think; what else is going on here? They need to look at the changes that have occurred, thinking not only about the physical causes, but also the environment and the health and wellbeing of the carer. Finally, this rule reassures the practitioner that a cause may not always be found. This should not be seen as a failure.
Image Copyright © 2016 Nathan Davies and Steve Iliffe
We tested the four rules of thumb for six months in a variety of settings including: palliative care community teams; hospital wards; general practice/care homes; and community nursing teams. The feedback we had from sites through our evaluation was positive. Teams liked the simplicity of the toolkit, which they felt was a synthesis of best practice and years of experience, making tacit knowledge explicit. The synthesis of knowledge in one tool also provided them with a source of authority to challenge other colleagues when they thought things should be done differently for a patient. However, they also said it provided them with authority when discussing next steps with families and explained their thought processes/opinions when making decisions with families.
The toolkit was seen as a way of educating new starters, junior doctors, or those less experienced in caring for someone with dementia and in particular for someone with dementia at the end of life. However, they could also be used as an aide memoir and a refresher for experienced practitioners.
So are rules of thumb the answer? They are not the whole solution but they go a some way in helping to manage complexity and support those making difficult, challenging and emotional decisions.