Improving end of life care through patient record registers

The verdict in the end of term report on end of life care locality register pilots, which was published in June, is that they have made encouraging progress.

The national End of Life Care Strategy identified the need for better co-ordination of care and suggested electronic registers as one way to deliver this. The quality, innovation, productivity and prevention workstream is supporting wider implementation of such registers in recognition of the improved care quality and potential efficiencies they can deliver.

The Department of Health and the National End of Life Care Programme agreed to fund and support a pilot programme launched in the autumn of 2009.

The final evaluation of the eight pilots suggests that – despite inevitable challenges – such registers can offer the opportunity for improved care.

While requiring initial investment and a time commitment from staff, registers could also potentially produce savings for local services through reduced emergency hospital admissions and unnecessary medical interventions.

Early identification that a person is approaching the end of their life, holistic assessment, advance care planning, well co-ordinated care and team working underpin high quality end of life care. The pilots suggest that using core information effectively could result in improvements in all these areas and therefore better outcomes for individuals and their families.

The pilots adopted local approaches to developing an electronic register to record key information about a person nearing the end of life, including their preferences and priorities for the care they receive and place of death. It is intended the record would be accessible round-the-clock by a range of services involved in the individual’s care – supporting integrated working across organisational and professional boundaries.

There are several key factors which need to be addressed in developing a register – and the pilots made a good start in testing out different solutions and approaches.

These include:

• What is the most appropriate IT solution and how can diverse organisations, particularly those outside the NHS, be linked to it?
• Which professionals would “consent” individuals on to the register?
• Which professionals would have the right to edit or update information on an individual’s record and access the information?
• What are the training implications?
• Who should take the lead in having conversations with the individual and family?

The range of services and professionals able to access the registers varied across the pilots but included out-of-hours services, acute hospital clinicians, district nurses, hospices and ambulance services.

The evaluation also suggests that social care professionals and care home staff could have a role in identifying people who might be suitable for inclusion on the register and obtaining their consent. They would also be able to access the register information as appropriate.

In the pilot areas, GPs had the main responsibility for deciding if someone should go on the register and final oversight of data placed on an individual’s record.

In some, palliative care consultants had editing or gatekeeping roles. The evaluation, conducted by Ipsos MORI, also identifies the important contribution of community nurses.  They are often well-placed to identify people who would benefit from inclusion on a register, particularly those with a condition other than cancer.

The key lessons from the pilots included:

• No pilot found the ‘ideal’ IT solution but this decision is crucial and should be based around functionality, access, reporting, compatibility and ease of use;
• Clinicians and IT specialists need to work together from the start;
• In most cases, an individual would be on the register for the last 12 months or so of life;
• Establish a stakeholder group involving potential end-users, patient and family representatives and technical delivery and commissioning teams and ensure it meets regularly;
• Secure GP engagement early, consider concerns about possible increased workload for GPs and provide peer-to-peer support to increase their understanding of the potential value of the system;
• Only the GP or another clinical lead for the patient should input data;
• Achieving a critical mass of patients on the register will demonstrate to stakeholders its effectiveness in terms of improving co-ordination of care and providing data on service quality or gaps. This will help engage staff and partners.

The evaluation noted that engaging care professionals was a challenge in some of the pilots.

For example, in discussing GPs, a key stakeholder group for implementation, it said: “Whilst many GPs have shown great interest in the register and have been engaged in its development, this has not been consistent. As well as ensuring that GPs are aware of the register’s potential benefits, they (GPs) must be reassured about the workload involved in implementing and using it. Although registers are likely to offer time-savings in the long term, whilst learning to use the register GPs may find it less efficient to use than their current system.

“For this reason, peer-to-peer support would potentially be very valuable in sharing understanding of the system and promoting the potential long term time savings that the register can provide.”

One of the most advanced pilots, Weston Area Health Trust and NHS South West, built in reporting functions that will show the numbers of individuals on the register where care planning has been completed and the percentage whose care plan was achieved.

Their initial figures showed that of the 153 patients on the register who had died by March 2011, less than 10 per cent died in hospital. Some 116 had achieved their preferred place of death while five did not. 

One third of people on the register had a non-cancer diagnosis.

The register is part of a wider local work programme on end of life care that includes advance care planning.  This comprehensive approach is thought to have been particularly important in achieving these results.

Although surveys consistently show that most people would prefer to die at home, around 57 per cent of deaths in England occur in hospital

Yes, it is still early days for this pilot and the others - and the figures here are low – but they do give some indication that use of the registers can help to make patient choice a reality.

The pilots generally found that when the purpose of the register is explained to them, individuals requiring this priority care agree to be included on it. Mostly, people saw the value of information about them being accessible to clinicians within their care team when needed.

• Download the evaluation now