Upeka De Silva 31 January 2023

How will paramedics know my wishes?

Findings from a Freedom of Information (FOI) request.

Freedom of Information (FOI) Working in the open Electronic end-of-life records

Callers to our free information line often have one of the following documents in place:

• Living will (advance decision)
• DNACPR (do not attempt cardio pulmonary resuscitation) form
• Health power of attorney

They often tell us how worried they are about whether their wishes will be respected and whether their advance care planning documentation will be known about and followed in an emergency situation.

Since the pandemic, we’ve also received a significant increase in enquiries from people wanting support to die at home. Occasionally, we also receive calls from GP practices unsure of how to share someone’s ADRT.

Our callers know the benefits of documenting their wishes, having them known about and respected.

When my husband was dying at home, his Advance Decision helped me advocate for him and helped the ambulance crew to care for my husband at home.

The clinicians we have spoken with echo these sentiments:

Every person we attend is so different! If they have an advance care plan in place it is far easier for us to leave them at their preferred place of care. It’s also easier if they have things like the anticipatory medication already in place so that they can be looked after properly.

We make freedom of information (FOI) requests because we need up-to-date guidance for our callers

When we support people to document their wishes using an ADRT we also outline how these plans can be shared:

• giving copies to family
• sharing with their GP so it can be placed on their medical record
• using the Lions Club Message in a Bottle scheme
• sharing it with their local ambulance trust

In 2018, thirteen Ambulance Trusts kindly supported us to gather valuable information about their role in respecting people’s end-of-life wishes.

This year to make sure that we share the most up-to-date information with callers we contacted a total of seventeen Ambulance Trusts in the UK and the Crown Dependencies.

Despite the tremendous pressures they are all under, this year, we received a 100% response rate, for which we are incredibly grateful.

In response to our callers’ needs, we asked whether:

1. the Ambulance Trust had a system for holding copies of an individual’s advance care plan and whether the document(s) were accessible to the attending crew
2. the NHS Trust recognised the Lions Club Message in a Bottle scheme

What we found

We found that systems for holding an individual’s advance care planning documentation vary across regional boundaries.

While some Trusts are able to access the documents via the person’s Summary Care Record (SCR), some expect hard copies of the documentation to be kept with the patient in their own home.

Here are a few examples of the responses we received:

• East Midlands Ambulance Service NHS Trust — when submitted by a clinician, we will place a marker on our Computerised Advanced Dispatch system to alert staff prior to arrival.
• London Ambulance Service NHS Trust — the Ambulance Trust accesses London’s Electronic Palliative Care Coordination System (EPaCCS) now known as the Urgent Care Plan (UCP) where documents can be uploaded and held.
• South Central Ambulance Service NHS Foundation Trust — crews have access to the Summary Care Record on their electronic Patient Record device(ePR) any documents shared with the service by GP, Consultants or other Health Social care partners are held on the Trusts 999 dispatch system and the 111 Adastra system.
• Isle of Wight — documentation must be with patient for attending staff to act upon it.
• The Welsh Ambulance Services NHS Trust — the NHS in Wales have gone out to procurement for an all Wales electronic care plan/DNACPR repository. Once in situ, this will be accessible by the WAST, 111, GPs, GP Out Of Hours, palliative care etc.
• The Scottish Ambulance Service — access is via a person’s Key Information Summary populated by GPs.

Additionally, all seventeen trusts confirmed that ambulance crew do recognise the Lions Club Message in a Bottle scheme which alerts them to a bottle in the fridge within which important documents can be found.

Reflections

We know that talking about end-of-life care preferences is not enough they need to be documented, shared and used. Something we raised in some recent research on electronic end-of-life records.

So meanwhile, it is up to all of us working within the system to make it work for individuals and their families.