Dr Paula–Jane Marrett, Dr Fiona Boyd and Beverley Chapman recently won the poster competition at the annual Patient Safety Congress. They share their research and findings

There are currently 750,000 people with dementia in the UK and this is estimated to increase to over one million in the next ten years.1 As the disease progresses a person may lose the ability to make decisions for themselves, particularly in certain important matters, for example, end of life care. The National Dementia Strategy has highlighted that people with dementia often have poor access to good end of life care.2

It is generally accepted that the acute hospital setting is the last place someone with advanced end stage dementia should be. In 2009 an audit was performed in our local acute hospital.3 A case note review of 221 notes was accomplished – the criteria were to collect data from dementia (registered) nursing homes patients who had a diagnosis of dementia and who were admitted to the acute hospital. The team identified 71 patients admitted for end of life care, the majority of whom (83%) came in via the 999 emergency services. A further 58 of these palliative patients died in hospital. It was estimated that the mean cost per person admitted for end of life care was £1,486.24 (£2,020.92 +complex care). 

The high number of palliative admissions highlighted a poor understanding of what is end stage dementia, a lack of dignity, non-utilisation of prognostic indicators, and failure to subsequently provide integrated end of life care and treatment. People with dementia were rarely included on the Liverpool Care Pathway and received inadequate pain relief. Interviews with families were conducted (post bereavement) – many had no knowledge their relative was dying, were not offered information, and not included in any best interest decision-making process. 

Methodology 

An easy to use step-by-step pathway describing the process was developed. It was decided to pilot the pathway in one area; initially six nursing homes and one residential home (Phase 1) were approached. All GP surgeries (11) were visited and the toolkit explained (GP trainee). 

The care homes were visited and toolkit training was instituted – this was mainly around the legalities and practicalities of best interest meetings (clinical nurse specialist). The care homes were asked to organise a social event (cheese and wine evening, for example) where all the relatives were invited. The relatives were given the relative information booklet and informal discussions were held around any issues arising from the booklet. We quickly discovered that holding an end of life event with family and care home staff saved time and helped people talk about end of life care. 

Care homes were then invited to make individual appointments with relatives to complete a best interest document. End of life decisions, for example, resuscitation, non-acute hospital admission and IV antibiotics were discussed and documented. The nursing homes were able to hold their own meetings after initial shadowing, and the residential homes were supported. 

The best interest document was then given to the GP for agreement and signature. This enabled the GP to complete the “allow a natural death” paperwork. The information is kept on the GP notes and shared with the out-of-hours service, with the originals being kept with the patient. 

Results

Findings 

As a society we do not talk openly about death and dying. Few people have discussed their own preferences, or have a Lasting Power of Attorney for Welfare in place. Healthcare professionals find it hard to initiate such discussions. Unless these discussions happen, it is impossible to know what people want or need or what their preference for care might be and to institute these. There are times when the community services are not able to accommodate a person’s care needs and this situation could result in an emergency admission.5

We hope that by initiating bespoke teaching sessions and inviting relatives to a non-threatening environment and broaching the issues sensitively and with prior warning, the relatives will be more open to discussion and will see the potential benefits of advance decision-making.

 

The high number of palliative admissions highlighted a poor understanding of what is end stage dementia

Prior to this pilot there was no legally robust way of documenting best interest decisions other than in GP notes following impromptu best interest meetings held by GPs. The best interest document provides a useful way of capturing all relevant information.

We found that the majority of care homes embraced the idea and felt it would be a beneficial exercise for them to take part in. Once they were familiar with the process, they adopted it and it became self-sustaining. 

Summary 

It is estimated that the financial cost of dementia to the UK is more than £20 billion a year and this is expected to rise to more than £23 billion by 2018 unless major cost effective improvements are made.6 One of the objectives of the pathway is to avoid any unnecessary admissions to hospital and allow end of life care to take place in the preferred location, usually the place of residence. This ensures access to excellent primary care teams who can provide high quality end of life care. 

It is our firm belief that everyone should have access to good end of life care and everyone should have a voice to express their wishes. The pathway gives the person with advanced dementia, who has lost capacity, their voice and a chance to use the excellent services that we do have available. 

References

1. Alzheimer’s Society factsheet, What is Dementia? (2011) 
2. DH, Living Well with Dementia: A National Dementia Strategy (2009) 
3. Chapman B, Boyd F. NHS Cornwall and Isles of Scilly and Royal Cornwall Hospital Notes Audit (2009) 
4. Preparing for End Stage Dementia
5. DH, End of Life Care Strategy – Promoting high quality care for all adults at the end of life.(2008) 
6. McCrone et al, Paying the Price: The cost of Mental Health Care in England to 2026 (2008)