It’s emotional – let’s talk about dying

Sonny Patnaik introduces vanguards that are improving integrated care for people reaching the end of their life through better use of technology. Harnessing technology is one of the underpinning enablers of change in the care models programme.

Benjamin Franklin famously said: “In this world nothing is certain, except death and taxes.”

Death comes to us all – and planning care for someone coming to the end of their life is critically important. Respecting the choices of each person is an essential human right.

Controlling pain, making people as comfortable as possible, helping someone to be cared for and die in their preferred place, avoiding intensive hospital treatment are all crucial palliative considerations. All health and care professionals who come into contact with that patient should have information at their disposal to provide the right treatment and support that accords with the patient’s wishes.

Even knowing a patient might be in their last year of life would be a start but often that prognosis is missing.

In the Harrogate and Rural District vanguard, they have GP practices, a community care team, a palliative care team, a hospice, a local hospital, out-of-hours services, social care and mental health services – all of whom may be involved in the care of these patients.

Yet they use different clinical IT systems. One system cannot access patient information on the other. That creates an unacceptable barrier for professionals who can’t quickly find critical information about a patient.

Dr Kath Lambert, a consultant in palliative medicine in Harrogate, has been leading a vanguard project to deliver an electronic palliative care co-ordination system (EPaCCS) which is about to be trialled in the community.

This will make it easier to record the outcome of Advance Care Planning discussions with patients – discussions that can improve quality of life, minimise the use of aggressive medical care before death, lead to fewer hospital admissions.

A national After Death Audit showed that only 27 per cent of patients who died had been identified as in the last year of life – and only four out of 10 of those had a recorded Advance Care Plan.

It is hoped that the project will increase identification of patients in the last year of life. They will be registered on the new system and this will create reports that multidisciplinary health and care teams can review with patients to plan care that respects their choices.

Shared templates have been developed, based on the National Information Standard. They also contain links to national and local guidance, policies and documents around care for patients at the end of life. This effectively creates a one-stop shop for all clinicians and saves the patient, or their carers, having to endure difficult conversations over and over again with professionals looking after them.

Reports will be generated for each locality and will reveal information on whether patients achieve their preferred place of death, and the reasons why this may not have been achieved. This will help to plan local services in the future. Dr Lambert also hopes the system will flag patients being admitted to hospital. The palliative care team will then be better placed to assess these patients in a more proactive way.

Meanwhile across Hampshire and East Berkshire a slightly different story about end of life planning is emerging.  They are working to ensure urgent care information feeds through to the national Summary Care Record (SCR).

At its most basic, the SCR contains information on patients’ medications, adverse reactions and allergies. With patient consent, it can also hold Additional Information.

Dr Steve Plenderleith, consultant in palliative medicine, has been developing a solution to replace two EPaCCS systems that previously covered Hampshire.

Future Planning templates on the two primary IT systems (SystmOne and EMISweb) allow all items to be raised to the SCR as Additional Information. Rather than focusing just on end of life care, the templates provide a Treatment Escalation solution also cover chronic condition and frailty patients. They are now in use across 10 clinical commissioning groups.

Their Future Planning website allows easy access to templates which are free to use if other areas around the country would like to try them.

In Hampshire, recording of consent for sharing Additional Information to the SCR rose from 200 per month in September 2016 to 1,000 a month in August 2017. They now have 6,000 patients registered, with most of these showing CPR preferences. Future Planning information can be accessed by any professional, with the appropriate permissions and a legitimate relationship to the patient, directly via SCR or through their own IT systems – as is the case for all community, out-of-hours and ambulance staff across Hampshire.

While South Hampshire is ahead of Harrogate, interoperability remains a significant challenge for both vanguards – and we need to continue to work with system suppliers and NHS Digital to ensure that other clinicians can see end of life records, particularly in our hospitals.

Sonny Patnaik

Sonny Patnaik is a member of the New Care Models team working within the Harnessing Technology workstream as a project manager. He has a specific interest in supporting vanguards to understand and deliver the interoperability and information sharing agenda that will enable the delivery of better care services. This includes working with organisations who are looking to ensure that the end-of-life preferences of an individual are visible to those who are involved in their care via the IT systems that they use.