Route to success - treat

Section 4 The route to success

Treat

Section 4

In this section you will be focusing on each of
the six steps of the end of life care pathway,
which is underpinned by good communication
skills to enable early identification of people
in your care who will be supported by the
pathway:
Step 1 – discussions as the end of life
approaches
Step 2 – assessment, care planning and
review
Step 3 – co-ordination of care
Step 4 – delivery of high quality care in
an acute setting
Step 5 – care in the last days of life
Step 6 – care after death

Who to involve
Multidisciplinary ward team
Specialist palliative care team
GPs, primary and community care staff
Ambulance services
Social care services
Generalist and specialist disease specific

staff
Support staff
Out of hours services
Discharge liaison co-ordinators
Hospices
Pharmacies
Equipment providers
Service managers
Commissioners and clinical
commissioning groups
Mortuary staff
Bereavement services
Volunteers.

This section will guide you through implementing systems to facilitate advance care planning and
care co-ordination, ultimately delivering high quality care.
Importantly, your service improvement activities will support you in developing good
communication systems both within your hospital teams and with partners working in the
community and social care services.

2

The route to success ‘how to’ guide

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ins
is guide conta
Section 7 of th speciﬁc end of life
links to disease es on:
uid
care resource g
idney disease
· Advanced k
· Dementia
· Heart failure
disease
· Neurological

3

Section 4

Step 1 – discussions as the end of life approaches

Discussions
as the
end of life
approaches

Assessment,
care
planning
and review

Co-ordination
of care

Challenge: One of the key barriers to
delivering good end of life care is a failure
to discuss things openly. Agreement is
needed on when discussions should occur,
who should initiate them and the skills and
competences staff need for this role.
Outcome: People receiving care and
their families and carers will be given
the opportunity for open and honest
discussions with staff that form the basis
for advance care planning and meets
individual choices wherever possible.

4

Delivery
of high
quality care
in an acute
setting

Care in the
last days of
life

Care after
death

What you need to do
1. Implement an identification model using

recognised good practice to ensure
generalist and specialist staff are trained
to recognise a dying person, for example
the Gold Standards Framework Prognostic
Indicator Guidance (see step 1 resources)
2. Ensure generalist and specialist staff have
capacity and are competent and confident

in communications skills, including breaking
bad news to individuals and their relatives
3. Check that your environment has safe,
private and appropriate places for having
these types of conversations with individuals
and their relatives
4. With your primary care and community
partners, work towards establishing an
Electronic Palliative Care Co-ordination
System (EPaCCS) and mechanisms for
keeping it up to date
5. Find out if your Trust has a recognised end
of life care pathway and whether staff are
trained in its use.


Practice example

clinical pathway group uses a whole systems
approach for all adults with a life limiting
disease, regardless of age and setting, moving
from recognition of need for end of life care, to
care after death.
In order to apply the model, staff across
organisations are required to understand the
needs and experiences of people and their
carers. The pathway model identifies five key
phases:

North West End of Life Care Model
The North West End of Life Care Clinical
Pathway Group included staff who are involved
in the care of people at the end of their life,
including social workers, ambulance services,
nurses, doctors, commissioners and faith
groups.
The model of delivery advocated by the
1
ADVANCING
DISEASE

1 YEAR

2

3

INCREASING
DECLINE

LAST DAYS
OF LIFE

6 MONTHS

4

5

FIRST DAYS
AFTER DEATH

DEATH

BEREAVEMENT

1 YEAR

Figure 1: the North West end of life care model (NHS North West)
1. Advancing disease – the person is placed on a supportive care register in GP practice/care
home. The person is discussed at monthly multidisciplinary practice/care home meetings
(Gold Standards Framework – GSF)
2. Increasing decline – DS1500 eligibility review of benefits, Preferred Priorities for Care
(PPC) noted, Advance Care Plan (ACP) in place and trigger for continuing healthcare
funding assessment
3. Last days of life – primary care team/care home inform community and out of hours
services about the person who should be seen by a doctor. End of life drugs prescribed
and obtained, and Liverpool Care Pathway (LCP) implemented
4. First days after death – prompt verification and certification of death, relatives being
given information on what to do after a death
(including D49 leaflet), how to register the death For further information please contact:
Elaine Owen
and how to contact funeral directors
Tel: 0151 201 4150 ext 6202
5. Bereavement – access to appropriate support
Email: elaine.owen@mccn.nhs.uk
and bereavement services if required.
5

Section 4

Resources
1. Electronic Palliative Care Co-ordination
System (see Section 3: plan)
2. AMBER Care Bundle
(see Section 3: plan)
3. Gold Standards Framework Prognostic
Indicator Guidance
Clinical prognostic indicators are an attempt
to estimate when people have advanced
disease or are in the last year or so of life.
This indicates to those in primary and
secondary care that people may be in need
of palliative/supportive care:
www.goldstandardsframework.org.uk

gold standards
4. Quick guide to identifying patients for
supportive and palliative care
Developed by Macmillan Cancer Support,
NHS Camden and NHS Islington to help
identify those needing end of life care
services: www.endoflifecareforadults.
nhs.uk/publications/quick-guide-toidentifying-patients-for-supportiveand-palliative-care

6

5. Dying Matters information resources
Numerous resources available to raise
awareness and promote conversations about
death, dying and bereavement:
www.dyingmatters.org/overview/
resources

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CONTENT
To view this podcast please visit:

tinyurl.com/acute-rts-howtoguide

A Party for Kath is an award-winning, fiveminute film produced by the Dying Matters
Coalition to demonstrate the benefits of
greater openness around death and dying.

6. e-ELCA e-learning
Free to access for health and social care
staff and includes modules on initiating
conversations and communications skills:
www.e-lfh.org.uk/projects/e-elca/index.
html


7. Finding the Words
A workbook and DVD developed following
discussions with people who have life
limiting conditions or have experienced the
death of a loved one. The aim is to help staff
with end of life conversations:
www.endoflifecareforadults.nhs.uk/
publications/ﬁnding-the-words

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9. Case study – development of a
communication prompt
East Lancashire Hospice and NHS Blackburn
with Darwen’s communications prompt
aims to assist professionals in having
conversations and advance care planning
discussions:
www.endoflifecareforadults.nhs.
uk/case-studies/development-of-acommunication-prompt
10. Truth-telling and end of life care
In November 2011, Prof Rob George
was interviewed by BBC Radio 4 on
truth-telling and end of life care

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To listen to this interview please visit:


This edit of Finding the Words focuses on the
importance of initial conversations about end
of life care and what it means to those who are
dying and their families.

8. Skills for Health Workforce Functional
Analysis Tool
Six workbooks which describe the workforce
skills required to ensure people receive
quality care in their last year of life:
www.endoflifecare-intelligence.org.
uk/end_of_life_care_models/skills_for_
health.aspx

Professor Rob George, consultant in palliative care
at Guy’s and St Thomas’ NHS Foundation Trust,
talks to BBC Radio 4’s One to One show about the
importance and implications of telling the truth
when people are at the end of life.

11. National End of Life Care Programme
support sheets
Support sheet 2 – Principles of good
communication:
publications/rtssupportsheet2
7

Section 4

Step 2 – assessment, care planning and review

Discussions
as the
end of life
approaches

Assessment,
care
planning
and review

Challenge: An early
assessment of an
individual’s needs and
an understanding of
their wishes is vital
to establish their
preferences and
choices and to identify
any areas of urgent
need. Too often an
individual’s needs and
those of their family
and carers are not
adequately assessed.
Outcome: Each
individual has a holistic
assessment resulting
in an agreed care plan
with regular review
of their needs and
preferences. The needs
of carers are assessed,
acted on and reviewed
regularly.

8

Co-ordination
of care

Delivery
of high
quality care
in an acute
setting

Care in the
last days of
life

Care after
death

What you need to do
5. Work with multidisciplinary
1. Utilising the AMBER Care
teams and social care
Bundle will trigger a
services to raise awareness
holistic needs assessment
and broaden understanding
and should provide the
of the issues related to
opportunity for initiating
end of life care in order to
Advance Care Planning
ensure that both health and
conversations as part of an
social care needs are met
ongoing process
6. Establish mechanisms
2. Establish a mechanism
for sharing results of
for checking whether an
assessments across teams
individual has an existing
and agencies that are
personal support plan or
meaningful but do not
social care assessment and
conflict with confidentiality,

whether a joint assessment
for example with GP out
might be appropriate
of hours and ambulance
3. Agree an appropriate
services
holistic assessment tool or
7. Ensure that appropriate
tools for your ward / Trust
training, which includes
4. Establish a system whereby
needs of carers are assessed, Advance Care Planning,
takes place for all
planned for and acted upon
professionals undertaking
assessments.


9

Section 4

Key principles in advance care planning
Advance care planning (ACP), when done
well, can achieve a number of important
outcomes. It can help:
Improve people’s wellbeing by
improving their understanding of their
illness
Help people to be involved in decisions
about their care
Enable communication between
individuals, families and clinical teams
Ensure that the care and treatment
people receive is informed by their own
decisions and preferences when they
become incapable of decision making
Improve the healthcare decision making
process by facilitating shared decision
making between the individual, their
family and clinical teams.

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• Get the envi rson’s emotional state and
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• Consider the
ound
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• Create
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•
ppor
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• Arrange for h information and the
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• Don’t avoid
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• Allow time fo

10

One useful way of thinking about advance
care planning is to consider it as a series of
steps:
1. Assess the person’s understanding of
their illness
2. Determine how the person wants to
make decisions
3. Determine what the person’s
expectations are about their illness and
treatment
4. Determine if the person has any
important care preferences or
choices about their treatment and
care, including end of life care, that
they want to be taken into account
once they can’t make decisions for
themselves.
Helping staff to start advance care
planning conversations is crucial but can be
something that many find challenging
Advance care planning conversations
must be sensitively introduced and not
imposed on an unwilling person. However,
all individuals should be provided with the
opportunity to participate if they wish.


In addition, research-based suggestions include the following examples of better words to say:
Instead of:

Better words to say:

There is nothing more we can do

We want to find out how to help you

Would you like us to do everything possible?

How were you hoping we could help?

Withdrawal of treatment

Withdrawal of ventilation (or other specific
treatments) and making sure you are
comfortable

Davison S et al. (2010) Advance care planning in patients with end-stage renal disease. In: Chambers EJ, Germain MK, Brown EA (eds)
Supportive Care in the Renal Patient. Oxford: Oxford University Press (2nd Edition)
Pantilat, S (2009) Communicating With Seriously Ill Patients - Better Words to Say. JAMA, 301(12): 1279-181

11

Section 4

Practice example
Barnsley preferred priorities of care (PPC)
pilot study
NHS Barnsley launched the use of PPC in
June 2010 and it was decided:
To avoid using abbreviations within any
professional or user documentation or
information
To use a register to record details of
those who have completed a PPC
document
To attach a sticker with information
provided on the PPC and any advance
statements decisions documentation to
link each document to the other.
To introduce the PPC into practice, a project
plan was formulated and agreed with the
Barnsley end of life care strategy group. One of
the key milestones of the implementation plan
was to produce an audit report in July 20113
to review progress and present to relevant
governance groups.
To support the introduction of PPC a
significant amount of training was undertaken,
including a launch, study days, and community
workshops. In addition a leaflet to support the
use of the PPC was developed.

3

12

From June 2010 to June 2011 over 120 PPC
documents were completed. Early evidence
demonstrated that use of the PPC document
benefited care home residents by establishing
their preferred place of care and reducing
unnecessary hospital admissions and the
distress this causes.
The vast majority of people who had
completed a PPC died in their expressed
preferred place.
9%

15%

76%

Preferred place of care met
Preferred place of care not met
Preferred place of care not stated
Figure 2: Highlights from those who have
died, how many people died in their
preferred place of care? (South West Yorkshire
Partnership NHS Foundation Trust)
For further information please contact:
Suzanne Wise
Tel: 01226 433558
Email: suzannewise@nhs.net

www.endoflifecareforadults.nhs.uk/case-studies/barnsley-preferred-priorities-for-care-pilot-study-audit


Resources
1. AMBER Care Bundle
(see Section 3: plan)

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Dr Irene Carey and Dr Adrian Hopper,
consultants at Guy’s and St Thomas’ NHS
Foundation Trust, outline the AMBER Care
Bundle and its benefits to both staff and those
at the end of life.

2. Holistic common assessment
Guidance for holistic common assessment
of the supportive and palliative care
needs: www.endoflifecareforadults.
nhs.uk/publications/
holisticcommonassessment

3. Capacity, care planning and advance
care planning in life limiting illness
This guide covers the importance of
assessing capacity to make particular
decisions about care and treatment, and of
acting in the best interests of those lacking
capacity: www.endoflifecareforadults.
nhs.uk/publications/pubacpguide
4. Thinking and planning ahead: learning
from each other
This training pack is designed to help people
understand what advance care planning
is, how to do it, and how to assist others:
uk/education-and-training/acp-forvolunteers
5. Advance decisions to refuse treatment
A guide to help understand and implement
the law relating to advance decisions to
refuse treatment:
publications/pubadrtguide

See also: www.ncat.nhs.uk/our-work/
living-with-beyond-cancer/holisticneeds-assessment

13

Section 4

6. Preferred Priorities for Care tools
Including documentation, an easy-read
version, leaflet, poster and support sheet:
www.endoflifecareforadults.
nhs.uk/tools/core-tools/
preferredprioritiesforcare
staff and includes modules on advance
care planning and assessment, as well as a
secondary care learning pathway:
html
support sheets
• Support sheet 3 – Advance care planning:

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Jane Seymour, Sue Ryder Care professor in
palliative and end of life studies at the University
of Nottingham, talks through the principles of
advance care planning and its importance in a
hospital setting, providing practical top tips for
getting started.

14

• Support sheet 4 – Advance decisions to
refuse treatment:
• Support sheet 6 – Dignity in end of life care:
• Support sheet 12 – Mental Capacity Act
(2005): www.endoflifecareforadults.
nhs.uk/publications/rtssupportsheet12
• Support sheet 13 – Decisions made in a
person’s ‘Best Interests’:
• Support sheet 16 – Holistic assessment:
publications/support-sheet-16-holisticassessment
• Support sheet 17 – Independent Mental
Capacity Advocates (IMCAs):
uk/publications/support-sheet17-independent-mental-capacityadvocates


15

Section 4

Step 3 – co-ordination of care
Discussions
as the
end of life
approaches

Assessment,
care
planning
and review

Challenge: If a holistic
assessment has been
carried out and shared
appropriately it should be
possible to co-ordinate
care for the individual,
their family and carers.
This should cover primary,
community and acute
health providers, the
local hospice, transport
services and social care.
Electronic Palliative Care
Co-ordination Systems
(EPaCCS) provide the good
practice model.
Outcome: Systems
developed across local
primary, community,
secondary and social care
as well as ambulance
services will ensure coordinated care that is
responsive to individuals
and their carers’ needs
and choices.
16

Co-ordination
of care

Delivery
of high
quality care
in an acute
setting

Care in the
last days of
life

Care after
death

What you need to do
1. Ensure there is a
for review of fast track
mechanism to identify a
discharge processes
cross agency key worker
for all people receiving
6. Establish a system to
end of life care
ensure access to specialist
palliative care services 24
2. Examine the systems and
hours a day
processes in place for
communicating across
7. Ensure the day to day coagencies and resolving
ordination of care for the
blockages
individual whilst they are
in hospital.
3. Establish a framework
for key agencies
to ensure
joint working,
carers.
including
der the needs of d
ember to consi
Rem
tails an
governance
orker contact de
Provide key w information and support
arrangements
to
signpost them
as:
4. Establish a system
services, such
htalkonline.
to ensure fast track
line: www.healt
• Healthtalkon d_bereavement/Caring_for_
discharge planning
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•
continuing care
s-330-

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org.uk/be/
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NHS Choices en ners/end-of-life-care/
•
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www.nhs.uk/Pl e-care.aspx
-lif
Pages/End-of


Practice example
Integrated health and social care
community discharge planning in Essex

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Service manager Jill Catchpole and discharge
facilitator Claire Walker set out the steps taken
at NHS West Essex towards an integrated
health and social care rapid discharge pathway.

Partner organisations in West Essex had been
working to improve integrated management
of end of life care, but it was recognised
that more needed to be done, particularly
in relation to the discharge from hospital of
people with life-limiting conditions.
A discharge facilitator was appointed at
the start of the project which ran from March
to May 2011. The facilitator sought to raise
awareness of end of life care and the preferred
priorities for care, and encouraged referrals
from both the hospital and the community.
She worked with a range of agencies to
support discharges from hospital of those who

wished to die elsewhere and in some cases
accompanied the person home.
During the project 78 referrals were made
of which 87% were appropriate – making an
average of 7.5 referrals each week. Of these
64.6% were discharged within 48 hours of
referral and 47% of these were within 24
hours. Nearly 90% were discharged to their
preferred place of care.
The project has helped to dispel a number of
myths and engender greater trust between the
different sectors. It has also raised awareness
of the role of social care at the end of life and
the value of an integrated approach to service
delivery.
Adopting a holistic and integrated approach
can make a significant difference to the quality
and efficiency of discharge for people at the
end of life in a short space of time.

Claire Walker
Tel: 07989 204148
Email: claire.walker19@nhs.net

17

Section 4

Resources
1. NICE end of life care for adults quality
standard (2011)
The NICE standard consists of 16 quality
statements and measures to define high
quality end of life care: www.nice.
org.uk/guidance/qualitystandards/
endoflifecare/home.jsp
2. Electronic Palliative Care Co-ordination
Systems (see Section 3: plan)

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4. End of life locality registers evaluation:
ﬁnal report
This Ipsos MORI report (2009) presents the
findings from an evaluation of eight locality
register (now EPaCCS) pilot sites across
England and includes case studies:
publications/localities-registers-report
Free to access for health and social care staff
and includes modules on integrated learning
and a unified DNACPR policy:
html



Dr Julian Abel, medical director at Weston
Hospicecare, discusses Electronic Palliative Care Coordination Systems and how they benefit people
at the end of life in hospital. Practical steps and
challenges for implementation are also identified.

3. National end of life care information
standard
This national standard sets out the minimum
core content required to be recorded in
Electronic Palliative Care Co-ordination
Systems: www.endoflifecareforadults.
nhs.uk/strategy/strategy/coordinationof-care/end-of-life-care-informationstandard
18

6. NHS continuing healthcare
More information about continuing
healthcare is available on the NHS Choices
website, including frequently asked
questions: www.nhs.uk/CarersDirect/
guide/practicalsupport/Pages/
continuing-care-faq.aspx
7. The six steps to success programme for
care homes
This North West workshop style training
programme enables care homes to
implement the structured organisational
change required to deliver the best end
of life care, with a view to reducing
inappropriate admissions to hospital:
www.endoflifecumbriaandlancashire.
org.uk/six_steps.php


8. Uniﬁed Do Not Attempt CardioPulmonary Resuscitation (DNACPR)
principles
Several Strategic Health Authorities
across the country are working towards
implementing DNACPR policies:
www.endoflifecareforadults.
nhs.uk/case-studies/south-eastcoast-dnacprprinciples and www.
southcentral.nhs.uk/what-we-aredoing/end-of-life-care/do-not-attemptcardio-pulmonary-resuscitation/

MEDIA
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10. Lincolnshire discharge liaison nurse
The Marie Curie Cancer Care delivering
choice programme in Lincolnshire
developed the role of the discharge liaison
nurse and an independent evaluation
found that 61% of patients referred to the
service were transferred to their preferred
place of care. Download the Lincolnshire
evaluation reports: deliveringchoice.
mariecurie.org.uk/independent_
evaluation/
11. Safeguarding adults practitioners
guide
Developed by Birmingham Safeguarding
Adults Board, this guide promotes every
adult’s right to live in safety, be free from
abuse and live an independent lifestyle free
from discrimination: www.birmingham.
gov.uk/safeguardingadults

NHS South of England has produced an extensive
DVD on the subject of DNACPR. This edit focuses
particularly on achieving best practice through
the use of a universal DNACPR form.

9. Blackpool rapid discharge pathway
Blackpool Teaching Hospitals’ rapid
discharge pathway for people at
end of life aims to facilitate a safe,
smooth and seamless transition of care
from hospital to community: www.
endoflifecareforadults.nhs.uk/casestudies/blackpool-rapid-dischargepathway

support sheets
Support sheet 1 – Directory of key contacts:

19

Section 4

Step 4 – delivery of high quality care in an acute setting
Discussions
as the
end of life
approaches

Assessment,
care
planning
and review

Challenge:
Individuals and
their families and
carers may need
access to a complex
combination of
services. They should
expect the same
high quality of care
regardless of the
setting. Their care
should be informed
by senior clinical
assessment and
decision making.
Outcome: Each
individual will have
access to tailored
information,
specialist palliative
care advice 24/7
and access to
spiritual care
within a dignified
environment,
wherever that may
be.
20

Co-ordination
of care

Delivery
of high
quality care
in an acute
setting

Care in the
last days of
life

Care after
death

What you need to do
core principles and values,
1. Ensure a fully complemented
including after death care
specialist hospital palliative
care team is present, in line 7. Ensure appropriate staff
with NICE guidance
have communication
skills, assessment and
2. Gather information on
care planning, symptom
how you are doing from
management, and comfort
complaints, compliments,
and wellbeing training
suggestions and significant

events
8. Examine your ward
environment to ensure it is
3. When things go wrong
supportive of dignity and
identify what happened
respect for individuals and
and set up mechanisms for
carers. Ensure feedback,
remedial action
comments and complaints
4. Work through blockages
are acted upon to improve
across organisational
your ward environment.
boundaries and systems
5. Identify what has worked
well and set up mechanisms
to replicate for service
improvement
sical,
6. Ensure all staff are trained
dividual’s phy
Consider the in
and are confident and

iritual needs,
cultural and sp
g
competent in end of life care
e with learnin

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os
for example th
dementia.
disabilities or


Practice example
Analysing hospital complaints about end
of life care
In 2010 the National End of Life Care
Programme undertook a small scale exercise
looking at the number of complaints about
end of life care received by four hospital Trusts
over a six month period.
Working with Trusts from the North East and
Midlands, results showed that between 3-6%
of all complaints received were specifically
about end of life care.
The emerging complaint themes leaned
strongly towards communication issues and
appropriate clinical care, as interpreted by the
complainant. The analysis report suggests it
may be feasible to consider that improvements
in levels of communication and understanding
may also result in improvement of what is
considered to be good end of life care.
The report highlights the Solihull
Bereavement Pathway Project, which offers one
suggestion as a way of reducing complaints by
offering volunteer bereavement support and
guidance following a death in hospital.
This exercise provided some helpful
information to support hospitals in considering
end of life care complaints reporting. While it
does not provide evidenced based large scale
study findings, it may help you to consider
the current processes for review within your
hospital.

For further information please visit:
uk/publications/an-analysis-of-thenumbers-of-hospital-complaintsrelating-to-end-of-life-care-over-a-sixmonth-period

21

Section 4

Resources
1. Route to success in end of life care:
achieving quality environments for
care at end of life
This guide identifies
a number of key
environmental principles to
help improve privacy and
dignity for individuals and
their families at the end of
life:
www.
endoflifecareforadults.
nhs.uk/publications/routes-to-successachieving-quality-environments-forcare-at-end-of-life
2. Nottingham information prescriptions
NHS Nottingham City piloted a scheme of
information prescriptions aimed at giving
people approaching the end of their life
more control over the management of
their care: www.endoflifecareforadults.
nhs.uk/case-studies/informationprescription-for-end-of-life-carein-nottingham-city-pct and www.
nottspct.nhs.uk/my-nhs-services/end-oflife-care.html
3. NHS Choices end of life care guide
This online guide is for people approaching
the end of life and their carers. It explains
what to expect from end of life care and
provides information on rights and choices:
www.nhs.uk/Planners/end-of-life-care/
Pages/End-of-life-care.aspx

22

staff and includes modules on symptom
management and fast track discharge:
html

5. Royal College of Nursing’s dignity
resource
This resource aims to support everyone
working in the nursing team in the delivery
of dignified care:
www.rcn.org.uk/development/practice/
dignity
6. Social Care Institute for Excellence
(SCIE) – stand-up for dignity
This online resource features a wealth
of information about dignity in health
and social care: www.scie.org.uk/
publications/guides/guide15/
standupfordignity/index.asp


7. The Dignity in Care network
Hosted by SCIE, the network consists of
dignity champions across the country, as
well as the National Dignity Council:
www.dignityincare.org.uk/
8. The route to success in end of life care
– achieving quality for people with
learning disabilities
This practical guide supports anyone caring
for people with learning disabilities to
achieve high quality end of life care:
publications/route-to-success-peoplewith-learning-disabilities
support sheets
• Support sheet 1 – Directory of key
contacts: www.endoflifecareforadults.
nhs.uk/publications/rtssupportsheet1
• Support sheet 6 – Dignity in end of life
care: www.endoflifecareforadults.nhs.
uk/publications/rtssupportsheet6

23

Section 4

Step 5 – care in the last days of life
Discussions
as the
end of life
approaches

Assessment,
care
planning
and review

Challenge: The point
comes when a person
enters the dying phase
(the last hours or
days). It is vital that
those caring for them
recognise that the
person is dying and
deliver the appropriate
care. How someone
dies remains a lasting
memory for families
and carers as well as
staff.
Outcome: The person
dying can be confident
that their wishes,
preferences and choices
will be reviewed and
acted upon and that
their families and carers
will be supported
throughout.

24

Co-ordination
of care

Delivery
of high
quality care
in an acute
setting

Care in the
last days of
life

Care after
death

What you need to do
intervals so that a person’s
1. Ensure generalist and
choices can be taken into
specialist staff are trained to
account and acted upon
recognise a dying person
wherever possible, for
2. Develop Trust guidelines
example Preferred Priorities
for the use of the Liverpool
for Care
Care Pathway, including
5. Establish a system for rapid
diagnosing dying
discharge identified through

3. Identify relevant staff and
advance care planning or
ensure they are trained
through discussion with the
in the use of prognostic
individual and their carers to
indicators and the Liverpool
enable the person to die in
Care Pathway, and skilled
a place of their choice.
in communicating the
implications to individuals 6. Re-examine your ward
environment to ensure it is
and their carers as
supportive of dignity and
appropriate
respect for individuals and
carers throughout every
to initiate review of
stage of the end of life care
advance care planning
pathway.
documentation at regular


Practice example
The National Care of the Dying Audit –
Hospitals (NCDAH)
NCDAH is undertaken by the Marie
Curie Palliative Care Institute Liverpool in
collaboration with the Royal College of
Physicians. Specifically, it examines care
delivery in the last days or hours of life for
people who have died in acute hospital settings
supported by the Liverpool Care Pathway for
the Dying Patient.
In June 2011, the NCDAH was incorporated
within the Department of Health Quality
Accounts, which offers an important driver
for increased participation.
The audit consists of two major
components:
Organisational Data – pertinent
data from participating hospitals
are collected to provide important
contextual information. Such
information includes the number of
deaths, hospital size (wards/beds),
education and training provision and
staffing to support end of life care.
Patient Level Data – information
coded at the point of care delivery is
extracted from a consecutive sample
of completed Liverpool Care Pathways
used within participating hospitals
during the three month data collection
period.

The data is analysed descriptively to provide
an overall benchmark against each of the goals
for all individuals in the sample, compared to
performance within each hospital.
A series of regional workshops are held
to enable discussion of the results, sharing
of understanding and action planning for
improving care of the dying in individual
organisations.
The results of the third round audit
(2011/2012) were published on 1st December
2011. The audit included clinical data from
over 7,000 people (from 127 NHS Trusts) on
the Liverpool Care Pathway.
Findings highlighted that hospitals are
reaching high standards of care in a wide
variety of areas. However, while care was
of high quality overall concerns remained
regarding education and training, and the
limited availability of support services from
specialist palliative care teams.
For further information please visit:
www.mcpcil.org.uk/liverpool-carepathway/national-care-of-dying-audit.
htm

25

Section 4

Resources
1. The Liverpool Care Pathway for the
Dying Patient (see Section 3: plan)

MEDIA
CONTENT

3. Finding the Words
A workbook and DVD developed following
discussions with people who have life
limiting conditions or have experienced the
death of a loved one:
publications/ﬁnding-the-words



MEDIA
CONTENT


Deborah Murphy, national lead nurse for the
Liverpool Care Pathway (LCP) at the Marie Curie
Palliative Care Institute in Liverpool, provides an
overview of the LCP and its benefits to people at
the end of life in hospital.

staff and includes modules on symptom
management and diagnosing dying:
html

This edit of Finding the Words focuses on the
care received by people in hospital during the
last days of life, as well as the long-lasting impact
that this can have on carers and relatives.

support sheets
• Support sheet 8 – The dying process:
• Support sheet 14 – NHS continuing care
fast track pathway tool:

26


27

Section 4

Step 6 – care after death
Discussions
as the
end of life
approaches

Assessment,
care
planning
and review

Challenge: Good end of
life care does not stop at
the point of death. When
someone dies all staff need
to be familiar with good
practice for the care and
viewing of the body as
well as being responsive to
family wishes. The support
and care provided to carers
and relatives will help them
cope with their loss and are
essential to a ‘good death’.
Outcome: A system is
in place that ensures the
emotional and practical
needs of families and carers
are supported after death.
Verification and certification
of death is timely, including
notification to the coroner
where necessary as well as
appropriate and continuous
carer support throughout
bereavement.

28

Co-ordination
of care

Delivery
of high
quality care
in an acute
setting

Care in the
last days of
life

Care after
death

What you need to do
appropriate training to at
1. Develop guidelines for
least signpost to spiritual,
your Trust’s viewing
emotional, practical and
arrangements and facilities

to ensure they are sensitive financial support
to different needs, cultures 5. Identify and communicate
and faiths
the place and the process
for collection of official

2. Ensure communications
documentation and
skills training is in place
the deceased person’s
and undertaken for all
possessions
staff likely to be in contact
with carers immediately
6. Establish a system to send
post death
relatives a bereavement
3. Establish a system whereby questionnaire, such as
the National Bereavement
carers’ post bereavement
Survey (VOICES), and to
needs are assessed and
provide frontline staff
recorded as part of the
with feedback in order
carers assessment whilst
to support continuing
their loved one is still alive
improvement.
4. Ensure all staff likely
to be in contact with
bereaved people have


Practice example
Redesign of bereavement services and
mortuary viewing area
Staff at Salisbury District Hospital used to
refer to the journey relatives had to make
between the bereavement office and the
mortuary viewing facilities as the ‘walk of
shame’. It involved a long, gloomy walk along
a basement corridor populated by clinical
waste bins, with the ever-present possibility of
bumping into an undertaker.
In 2008 the Trust teamed up with The King’s
Fund’s Environments for Care at End of Life
programme. The first plan was a fairly modest
one to redecorate and introduce new furniture,
artwork and extra facilities.
But once the Salisbury team started
discussing the possibilities in more detail, their
thinking became more ambitious. They realised
this was a chance not only to improve the
environment but to integrate bereavement and
mortuary services within one building and raise
the profile of care after death within the Trust.
With a £30,000 grant from the Department
of Health, via The King’s Fund, topped up by
£10,000 from the Trust, the team managed to
secure an extra £100,000 from local hospices,
charities and other organisations.
Work on the major revamp of the mortuary
building was completed in October 2009. The
result is a new purpose-built structure that
incorporates the bereavement office, a waiting
area and the viewing room under one roof.
A light, airy reception area together with
dedicated parking makes the building both

welcoming and private. And the other rooms,
decorated with original artwork and textiles
and simply furnished, give a calm, noninstitutional feel.
The changes have transformed the
experience of many bereaved relatives and
friends. They can attend the bereavement
office in pleasant, private surroundings, collect
the death certificate and their loved one’s
belongings and then proceed to the viewing
suite if they wish.
Sam Goss
Email: samuel.goss@salisbury.nhs.uk

29

Section 4

Resources
1. Guidance for staff responsible for care
after death
This publication emphasises that the care
extends well beyond physically preparing the
body for transfer. It also covers privacy and
dignity, spiritual and cultural wishes, organ
and tissue donation, health and safety and
death certification procedures:
uk/publications/guidance-for-staffresponsible-for-care-after-death

MEDIA
CONTENT


Jo Wilson, Macmillan consultant nurse
practitioner at Heatherwood and Wexham
Park Hospitals, talks about care after death
guidance and the steps needed to implement it
successfully in hospitals.

30

2. When a person
dies: guidance
for professionals
on developing
bereavement
services
This covers the
principles of
bereavement
services and
guidance on
workforce
education and the commissioning and
quality outcomes of bereavement care:
publications/when-a-person-dies
3. National Bereavement Survey (VOICES)
The National Bereavement Survey aims to
capture the Views Of Informal Carers and
an Evaluation of Services (VOICES). It is a
postal questionnaire to measure satisfaction
with services received in the year before
death: www.ons.gov.uk/ons/aboutons/surveys/a-z-of-surveys/nationalbereavement-survey--voices-/index.html


4. Improving Environments for Care at
the End of Life
In 2006 a pilot programme was launched by
The King’s Fund across eight sites to improve
environments for care at end of life:
www.kingsfund.org.uk/publications/
care_at_end_of_life.html

MEDIA
CONTENT


This edit of a National End of Life Care
Programme / King’s Fund DVD looks at the
importance of environments of care at the end of
life and gives examples of what can be achieved.

Free to access for health and social care staff
and includes modules on care after death,
bereavement and spirituality:
html

support sheets
• Support sheet 9 – What to do when
someone dies:
• Support sheet 15 – Enhancing the healing
environment:

5. Route to success in end
of life care: achieving
quality environments for
care at end of life
This guide identifies
a number of key
environmental principles to
help improve privacy and
dignity for individuals and
their families at the end of life:
uk/publications/routes-to-successachieving-quality-environments-forcare-at-end-of-life
31

www.endoflifecareforadults.nhs.uk
Published by the National End of Life Care Programme
ISBN:
978 1 908874 04 7
Programme Ref: PB0005 A 02 12
Publication date: Feb 2012
Review date:
Feb 2014
© National End of Life Care Programme (2012)
All rights reserved. For full Terms of Use please visit www.endoflifecareforadults.nhs.uk/terms-of-use
or email information@eolc.nhs.uk. In particular please note that you must not use this product or
material for the purposes of financial or commercial gain, including, without limitation, sale of the
products or materials to any person.

Supported by the NHS Institute for Innovation and Improvement

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