Using Electronic Data Systems in End-of-Life Care

This case study will present ways of transforming end-of-life care through running Electronic Palliative Care Coordination systems (EPaCCs).

The EPaCCs keep a saved, electronic care plan for the last year of a patient’s life on a purpose-built database.

When in the last year of life, it is important for a patient and those closest to them to have some difficult conversations, about their choices and preferences for their care and subsequent death. There is a need for a systematic approach to this, ensuring consistent best practice for patients, families, and carers. [1]

The EPaCCs database includes data on the patient that is collected from care providers and uploaded to create a digital profile of the patient, their medical history and their care needs and preferences.

It includes:

• Demographic Information of the patient

• Current involvements including carers and next of kin

• Medical Information including frailties and disabilities and use of medication

• Legal Information 

• Special requirements including preferences for last day of life

What are the Benefits?

This dataset provides a real-time view of palliative care information that has been recorded by a GP. GPs usually have a longstanding relationship with the individual, which makes them an important source of patient information [2].

EPaCCs also ensure good communication between services that the patient has been using, as service providers can input information onto a shared EPaCCs system. It allows multi-disciplinary teams access to the information they need to make informed decisions, which align with the requests of the patient.

The systems also reduce the need for the patient to tell their story again and again to various palliative carers. All their preferences are easily stored in a computer system so the desired care can be distributed efficiently.

Using EPaCCs to Improve the Quality of Care in Hampshire

We heard from Dr Steve Plenderleith, Palliative Medicine Lead and Medical Director at SE Division Southern Health NHS Foundation Trust [3].

Steve is an advocate for the use of electronic data planning systems. They piloted early EPaCCs in 2010-12 using the systems in place rather than buying a new kit. Additionally, for the last 5 years, they have led the Hampshire Future Planning Project to again develop EPaCCs using current systems.

The New Care Models fund is being used to extend the coverage and usage of EPaCCs data in Hampshire. Their locality has chosen to deliver the integration using Summary Care Record (SCR) AI.

Alongside the complete adoption of EPaCCs, Hampshire is now moving forward with several paper publications including the My Wishes leaflet, designed to sit alongside the AgeUK Let’s talk about death and dying booklet. 

Handwriting end of life preferences aims to encourage people to start a dialogue with those delivering their care, helping them to submit their preferences for care to be added to their GP record using Future Planning templates [4].

In their presentation Steve also covers:

• The importance of the community setting: exploring how EPaCCs should be centered away from acute care environments

• Highlighting the benefit of early flagging systems to alert users to the presence of new data

• Patient Information Input: Allowing patients to support the EPaCCs through website or apps

The Community Setting

Steve highlights the importance of making sure that the wider community is involved in the development of EPaCCs.

They explain that on average, end-of-life patients have 4 hospital admissions a year. Consequently, all service providers in the care community of the patient, should contribute to the EPaCCs to determine the triggers of these admissions, whilst ensuring quality care is provided to the patient each time they are in hospital.

Additionally, 90% of the last year of the patient’s life is spent at home. Therefore, much of the end-of-life planning is done in the community, away from the hospital setting.

Steve maintains that the acute setting is therefore not as important as some people might think.  There is significantly less opportunity to discuss and change preferences in acute settings, especially during an emergency.  The plans that are drawn up are mostly about what should happen for the patient in the community, so it is most important that the community owns that plan.

The Benefit of Flagging Systems to Alert Users of any EPaCCs Data

The overall design of the Summary Care Record (SCR) interface/experience (and the supplier software using the API) is critical to pull out the important bits quickly.  A treatment escalation plan and an anticipatory planning tab could be added to the digital EPaCC interface. For example, a section that talks about what is going to happen, not what has happened so that distributors of care have quick and easy instructions to follow.

The flagging would be useful in the event of a paramedic needing to access information on the patient such as resuscitation instructions at the scene of an accident.

Additionally, it would also be useful for GPs to be flagged prior to appointments with patients so that they know if there have been any changes to the details of the patient’s EPaCCs. This also goes for every other service provider including hospice nurses and care home workers.

Benefits of Patient Access to EPaCCs

Steven is firm in their belief that it would be a positive thing if patients were able to access and edit their own EPaCCs.

This works via paper, with patients being able to handwrite their wishes in the My Wishes leaflets. Using the electronic system makes for better, more confidential, filing of data.

Patient access to EPaCCs would allow end-of-life patients to update their own emergency contact and access details, as well as their preferences and wishes for care before and after death, should these details change at any point.

If patients were able to submit their own information to the EPaCCs then it would promote consideration of religious and cultural requirements surrounding death for some people.

However, Steve warns that we would need to ensure that it is the patient or their legal representative recording the information. To do so, appropriate, and accurate guidance would need to be readily available.

Advice for Successful EPaCCs [4]

Steve presents their key recommendations for the adoption of EPaCCs in end-of-life care.

• Get the data in first before you sell to data viewers.  If you persuade care providers to change their habits and use the SCR AI, then you must be sure that the viewers will regularly see useful information.  They will not access SCR AI if they never find any added value there.

• ReSPECT (Recommended summary plan for emergency care and treatment) is potentially a distraction.  Driving paper forms into people’s hands is moving things away from integrated electronic solutions.  However, Steve does accept that, treatment escalation planning is something that all clinicians in both acute and community settings should be thinking about.

• Rollout of templates to GPs was not as difficult as might have been thought. During the rollout of EPaCCs in Hampshire Steve noted that no major training was needed for GPs, as they are familiar with using templates.

• Call it “future planning” – Hampshire is keen to move away from the “end of life” description.  The tools provided in Hampshire work just as well for the wishes, preferences, and Treatment Escalation Plans for a 25-year-old unstable diabetic or epileptic as they do for an end-of-life cancer or COPD patient.

What do we still need from EPaCCs?

Paramedics should have access to EPaCCs. Although they are not able to add to the patient’s database due to the nature of their work, important end of life details may be relevant to a patient with life-threatening injuries.

Patient access. Potentially developing an app for patients to access their data as well as maintaining an open dialogue with GPs who can directly feed the patient wishes onto the database.

Access for care homes and hospices. These service providers should be able to add notes to the EPaCCs based on what they have learned through providing care to this patient.

1] NHS Harrogate and District. Electronic Palliative Care Co-ordination System (EPaCCs). Identifying patients who may be in the last year of life is an important step in providing good quality care.

[2] HealthCare Gateway. Electronic Palliative Care Co-ordination Systems (EPaCCS) Dataset

[3] Dr Steve Plenderleith. 2021. Palliative Medicine Lead and Medical Director at SE Division Southern Health NHS Foundation Trust

[4] Future Planning. 2018. End of Life Care Interopalability Review