Using technology to improve end of life care

An electronic record-sharing system is helping to integrate care at the end of life

As clinical and operations director at East Cheshire Hospice I see the complex and sensitive discussions that my staff have with patients and their loved ones every day.

Picture: Alamy

We talk with patients to understand decisions such as their preferred place of death, as well as the choices that may be made on their behalf once they no longer have capacity. Being able to record that information and ensuring it is seen by the right people at the right time is crucial.

Coordinated care

The End of Life Care Strategy, introduced in 2008, identified the need to improve coordination of care, recognising that patients frequently receive end of life care from a wide range of teams and organisations.

Our aim has been to improve every patient’s journey by sharing data to coordinate effective end of life care but the system in place at the hospice did not have the interoperability to make this a reality. We established a small group of staff who identified suitable replacement systems to achieve our aim.

We found that most local GPs were using one electronic system, with plans in place for specialist nurses and community staff to transfer to this system.

The system was able to support our plans and, after visiting different healthcare settings to see it in place and gaining the support of our board and local clinical commissioning group, the decision was made to put it in place.

Adapting the system to be used at a hospice

It was clear that the system had the potential to work in the hospice but would need to be adapted. It had been designed for GP practices and it was not adapted to record daily care, communication or activities in a hospice setting.

We ensured the system was patient-centred and designed a range of templates to document individualised, coordinated, high-quality and holistic end of life care.

We added a separate service for each of our primary activities and associated services. Once configured, we were able to report on activities across the hospice.

We worked with the manufacturer to establish a team of ‘super users’ and then our matron, Emma Dixon, and information and communications technology manager Mike Drew trained the rest of the staff. We now have 100 staff and 25 volunteers using the system.

Data sharing

Obtaining consent to share data with other organisations was by far the biggest challenge, due to different ways of working, different understandings and a fear of getting things wrong.

We developed a clear protocol for establishing patient consent so we could build trust and confidence with partner organisations. This helped us to support coordination of care and the delivery of the right care, in the right place, by the right person at the right time.

The new system has allowed us to improve patient experience and nursing practice in several areas. Before we began using it we were unable to ensure the records were up to date or readily accessible. Patients often had to repeat themselves and we were unable to capture data for monitoring and auditing.

We have found that with a coordinated approach and an interoperable IT system, we can collect and share patient data to improve care.

A successful changeover

Communication with professionals and service users was vital to the successful changeover to this system. We constantly review the process through ongoing audit, and data are analysed for compliance. We are also planning to develop the system further by introducing managed referrals that can be made electronically via the system and to start adding in prescribing.

Introducing the record-sharing system is the best thing we’ve done to improve end of life care – and we want to encourage others to do the same. So far, staff from almost 30 other hospices have visited us to see the difference. We want others to know how this new technology is helping our patients who are at the end of life to die with dignity and in the way they wish.

Using the record sharing system

Since introducing the technology we can now:

  • Record patients’ wishes accurately and consistently across healthcare services, ensuring they are visible in real time when needed.
  • Share essential medical information and care plans securely among all professionals, so patients do not need to repeatedly have difficult discussions.
  • Access the Cheshire Care Record, meaning we can view data from the Christie NHS Foundation Trust, local hospitals and social care partners.
  • Record information on the views of family and carers, including information about appointments for our new carers service.
  • Use the information to better prioritise patients in our multidisciplinary care planning meetings, ensuring those most in need get the required support.
  • See where our referrals come from so we can increase awareness of our services in the right areas with the right people.

​Helen Knight @echospice is clinical and operations director at East Cheshire Hospice in Macclesfield


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