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Research 30 August 2018

The role of Ambulance Trusts in respecting people’s end-of-life wishes

Findings from a Freedom of Information request.

In this report


Compassion in Dying frequently receives enquiries from people who are concerned about whether their wishes for the end of life will be respected in an emergency situation or when they are being transported between care settings.

These people have some form of advance care plan in place, such as an Advance Decision to Refuse Treatment (often known as ‘Living Will’), a Do Not Attempt Cardiopulmonary Resuscitation form (DNAR) and/or a Lasting Power of Attorney for Health and Welfare.

However, without effective recording systems and training, paramedics often struggle to access individuals’ stated wishes. This makes it difficult for those wishes to be respected, causing distress to both the individual and their loved ones, as Christine Erskine’s story shows:

At the age of 96, my mother had a severe aneurysm and the paramedics wanted to take her to hospital to have a stent fitted. She was adamant she was not going into hospital and I respected these wishes… I explained about her Advance Decision, which they knew nothing about. Halfway to hospital, having finally read the relevant document they had subsequently been given, they changed their minds and palliative care was put in place.

Christine Erskine1

We decided to find out more about Ambulance Trusts’ policies and practice on advance care plans.


We contacted the 13 Ambulance Trusts in the UK under the Freedom of Information Act 2000 asking:

We received a 100% response rate.


Does the Ambulance Trust have a system for holding copies of advance care plans?

Whether or not Ambulance Trusts will be aware of their wishes is a concern of many people who contact Compassion in Dying’s Information Line. We uncovered diverse policy and practice across the Ambulance Trusts, revealing a postcode lottery in accessing services that acknowledge and respect individuals’ stated wishes for end-of-life care.

  • One Trust highlights the existence of advance care plans but does not hold copies.
  • Seven Trusts are able to upload advance care plans on to their systems.
  • Two Trusts have systems that allow access to advance care plans via the electronic record keeping systems used by GPs in their regions.
  • Three Trusts do not have systems for holding advance care plans.

Under the Mental Capacity Act 2005 Advance Decisions are legally binding in England and Wales as long as they meet certain requirements. The Act also enables people to appoint a Lasting Power of Attorney for Health and Welfare.

Responses from the 13 Ambulance Trusts revealed varying policies

Responses from the 13 Ambulance Trusts revealed varying policies

  • Six Trusts accept advance care plans from individuals.
  • Four Trusts only accept advance care plans from healthcare professionals.
  • Two Trusts require original documents to be seen and one Trust only accepts a particular Advance Decision form.
  • Two Trusts were able to report on the number of advance care plans adhered to in 2017.
  • Eleven Trusts provide training on end-of-life care to ambulance crews.

Ambulance Trusts requiring original documents; only accepting information supplied by a healthcare professional; and only recognising information in one format, create unjust barriers to advance care planning and also contravenes Section 25 of the Mental Capacity Act 2005.

The absence of a unified system for recording and implementing advance care plans across the 13 Ambulance Trusts results in significant inequality when it comes to protecting patient choice at the end of life.

A recent study among ambulance staff also found that they were limited in the care they could provide due to the absence of information about patients.2 This situation persists despite the fact that recommendations on improving information sharing were made by Public Health England in 20153 and within the Ambitions for Palliative and End-of-life Care Framework.4 The importance of effectively sharing information about people across organisational boundaries to make more informed decisions on people’s care and to avoid unwarranted admission to secondary care has also been highlighted by the recent Care Quality Commission report, Beyond Barriers.5

Policy and practice: what we have learned

The calls Compassion in Dying receives, alongside the research into our service users’ experience, demonstrate that the current systems for recording individuals’ treatment and care preferences cause real problems for individuals and their loved ones.

“My dad was dying…I was not prepared for the care workers calling an ambulance against mum’s wishes and the paramedics asking for a “yellow DNAR” which we didn’t have as we’d already got a Power of Attorney… his breathing worsened and he appeared distressed but we knew he didn’t want to go to hospital or be resuscitated. I didn’t know what we were supposed to do or who we should call for information. Eventually, having discussed the situation with their boss, which took some time, the paramedics made sure dad was comfortable and allowed him to stay at home.”

Wendy Knight

We have learned that current policy and practice cause problems for paramedics and ambulance crews.

“As a paramedic it is immensely frustrating and upsetting when things aren’t put in place allowing us to leave someone at home where they wish to be. I was not prepared for the heartache of having to take a dying patient away from their home and into general hospital.”

Donna Main-Clancy

As well as the ‘postcode lottery’ of different policies uncovered by our Freedom of Information request to Ambulance Trusts, the inconsistent implementation of Ambulance Trust policies is also cause for concern.

We requested four people who had completed Compassion in Dying’s Advance Decision form to contact the Ambulance Trust which has a policy of only accepting a specific Advance Decision template, and ask if they might hold a copy.

While these are just four examples, it indicates that good practices, as in the case of the first caller, exist and could easily be replicated. Again, it appears there is a lottery in terms of the standard of current practice within Trusts as well as between them.

Recommendations for Ambulance Trusts

We recognise that ambulance crews work in time-pressured environments and that commencing life-sustaining treatment is a default action, particularly where crew members feel the context is uncertain. Moreover, we understand that withholding life-sustaining treatment requires significant confidence, skill and experience. However, if person-centred care is to become a reality, it is important to consider how systems for respecting end-of life wishes could be strengthened within Ambulance Trusts.

There are already well-documented and significant inequalities experienced in end-of-life care and shared decision making.6 Ambulance Trusts are well-placed to help tackle these rather than contribute to them.

It is with this in mind that we propose the following recommendations which we believe would help ambulance crews to respect individuals’ wishes:

Many of these issues, which range from the importance of education, training and awareness of issues relating to end-of-life care at an individual level, to information sharing systems, policies and protocols at a systems level, were raised by the Association of Ambulance Chief Executives in 20127 and prioritised again in 2014.8 We remain hopeful that this rhetoric will be translated into reality and welcome all opportunities to collaborate with Ambulance Trusts to make this happen.

Meanwhile, Compassion in Dying will continue to encourage and support individuals to give copies of their Advance Decisions and other advance care plans to their local Ambulance Trusts, or request their GPs to do so on their behalf.


1 All quotes are drawn from the survey conducted by Compassion in Dying in 2016 of over 600 people who were living with a terminal illness or had cared for someone at the end of life.

2 Hoare S et al, Ambulance staff and end-of-life hospital admissions: A qualitative interview study, Palliative Medicine, June 2018

3 National End of Life Care Intelligence Network, Ambulance Data Project for End of Life Care, 2015,

4 National Palliative and End of Life Care Partnership, ‘Ambitions for palliative and end of life care: a national framework for local action 2015-20’ (Ambition 4)

5 Care Quality Commission, Beyond Barriers: How older people move between health and social care in England, July 2018

6 Care Quality Commission, A different ending: addressing inequalities in end of life care, 2016

7 The route to success in end of life care – achieving quality in ambulance services, 2012

8 Future National Clinical Priorities for Ambulance Services in England, 2014

Summary table

Ambulance TrustDoes your
Ambulance Trust
have a system for
holding copies of
advance care plans
Who can provide
you with these
Do ambulance crews
receive special training
on identifying and
implementing Advance
Decisions, Lasting Powers
of Attorney and
DNAR orders?
When an
ambulance crew
adheres/does not
adhere to an
Advance Decision
or a DNAR order
is it recorded?
East Midlands Ambulance
Service NHS Trust
NoNot applicableYesYes
East of England
Ambulance Service
NHS Trust
Via GP systemHealthcare
London Ambulance
Service NHS Trust
North East Ambulance
Service NHS
Foundation Trust
NoNot applicableOnly after a change
in legislation
North West Ambulance
Service NHS Trust
YesIndividualPlanning an e-Learning
If investigation
is required
South Central Ambulance
Service NHS Foundation
South East Coast
Ambulance Service NHS
Foundation Trust
Existence of ACP
IndividualYesIf investigation
is required
South West Ambulance
Service NHS Foundation
West Midlands Ambulance
Service NHS Foundation
Yorkshire Ambulance
Service NHS Trust
NoNot applicableYesYes
The Welsh Ambulance
Services NHS Trust
The Scottish Ambulance
Via GP systemHealthcare
The Northern Ireland
Ambulance Service Health
and Social Care Trust ¥
* In Scotland, the Adults with Incapacity (Scotland) Act 2000 requires that when healthcare professionals are making a decision for a person who does not have capacity, they must take into account the past and present wishes of that person. Advance Decisions provide evidence of a person’s wishes and therefore should be taken into account when a decision is made on their behalf.

¥ The Mental Capacity Act (Northern Ireland) 2016 has not yet come into force. Currently Advance Decisions are given legal effect in Northern Ireland under common law, which means a clear and specific Advance Decision to refuse treatment must be followed.

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