Transforming End of Life Care in Acute Hospitals AM Workshop 6: Helping you to ‘Transform’ your local services, open to wannabee, new or established organisations participating in the Transform programme. Find out about the Transformathon… you will hear it here first! by Maggie Morgan-Cooke, Jennifer Clemo, NHS England and Anita Hayes, The National Council for Palliative Care

1. Transforming end of life care in
acute hospitals [established and
wannabee sites!]
Maggie Morgan Cooke
Jennifer Clemo
Anita Hayes
Maggie.morgan-cooke@nhsiq.nhs.uk

2. ‘Transform Programme’ for acute trusts
• Provides hospitals with a comprehensive service
improvement framework and improvement tools to
help you to ensure consistency, reliability, safety and
effectiveness by implementation of 5 key enablers in
a ‘How to’ guide
• Supports Trusts to deliver compassionate EoLC of
the highest quality, which is accessible to all who
need it across NHS England
• Over 80 (51%) enrolled in the programme - interest
from further 6 by December 2015

3. Key enablers:
• Advance Care Planning (ACP)
Identifying and recording a persons wishes and outcomes
of any advance care plan
• Rapid End of Life Transfer
Developing individual plans of care for anticipatory
management for a predictable clinical event
• The AMBER care bundle
A tool and package of interventions supporting teams to
identify and respond to end of life care needs when their
recovery is uncertain.

4. Key enablers:
• 5 new Priorities for Care - possibility that a person may die within the
coming days and hours is recognised and communicated clearly, decisions
about care are made in accordance with the person’s needs and wishes, and
these are reviewed and revised regularly.
• Sensitive communication takes place between staff and the person who is
dying and those important to them.
• The dying person, and those identified as important to them, are involved in
decisions about treatment and care.
• The people important to the dying person are listened to and their needs are
respected.
• Care is tailored to the individual and delivered with compassion – with an
individual care plan in place
• EPaCCs- Electronic Palliative Care Co-ordination System
Promoting choice by helping deliver 100% national coverage of EPaCCS
and aligning with the National Information Board agenda

5. What opportunities are there for you as
part of this programme?
• End of Life Care Facilitators and Champions Network- 850+
members and still growing!
• Creation and distribution of the monthly newsletter- providing
over 4000 contacts up to date news, information on
resources, events
• Transforming End of Life Care ‘Share and Learn’ webinars
as a key feature of our learning and virtual networking offer

6. More opportunities
• Massive Open Online Course [MOOC]
• Website
• Telephone Coaching Support
• Diagnostic visit around what is important
to you

7. Welcome to the
NHS Transformathon
Let’s all connect, share and learn to make
the NHS better.
7

8. @theedgenhs 8
What is the NHS Transformathon?
We all want the NHS to be great.
We can help make it better by sharing and learning from each
other. The NHS Transformathon is an online event bringing global
leaders and health and care staff and service users together. It
will bring fresh ideas and new perspectives to your screen.
Let’s all connect, share and learn.

9. @theedgenhs
What is the Transformathon?
• Its starts at 16.00 GMT on Wednesday 27 January and
ends at 16.00 GMT on the Thursday 28 January
• It’s a free, 24 hour, online event/conference.
• It’s a live event.
• It will feature change experts, health and care staff,
patients and service users.
• It will feature people from across the world.
• It will feature a mixture of speakers, films, question and
answer sessions, debates and discussions.
• It will be on a website that most people can access via
their computer or mobile, and we will be using YouTube
and Google hangouts.
9

10. @theedgenhs
What type of content will be featured?
10
We want the NHS Transformathon to provide people with
food for thought that will help them to make change
happen and address how change is changing.
We also want to bring together people who will share
stories of past successes and lessons learnt.
We want to feature content that is useful to those working
in health and care.
The key thread that we will be exploring throughout the 24
hours is: “how is change changing and what does this
mean to people working in health and care.”

11. @theedgenhs 11
Find out more and join the
programme at:
theedge.nhsiq.nhs.uk/transformathon

12. A national framework for local
action

13. Six ambitions
Each person is seen as an individual
I , and the people important to me, have opportunities to have honest,
informed and timely conversations and to know that I might die soon.
I am asked what matters most to me. Those who care for me know
that and work with me to do what’s possible.
Each person gets fair access to care
I live in a society where I get good end of life care regardless of who I
am, where I live or the circumstances of my life.
Maximising comfort and wellbeing
My care is regularly reviewed and every effort is made for me to have
the support, care and treatment that might be needed to help me to
be as comfortable and as free from distress as possible.

14. Six ambitions
Care is coordinated
I get the right help at the right time from the right people. I have a
team around me who know my needs and my plans and work
together to help me achieve them. I can always reach someone who
will listen and respond at any time of the day or night.
All staff are prepared to care
Wherever I am, health and care staff bring empathy, skills and
expertise and give me competent, confident and compassionate care.
Each community is prepared to help
I live in a community where everybody recognises that we all have a
role to play in supporting each other in times of crisis and loss.
People are ready, willing and confident to have conversations about
living and dying well and to support each other in emotional and
practical ways.

15. “I can make the last stage of my life
as good as possible because
everyone works together
confidently, honestly and
consistently to help me and the
people who are important to me,
including my carer(s).”

16. Improving the quality of end of
life care in acute hospitals
Building on the Best
Adrienne Betteley
Anita Hayes
Chris Sutcliffe

17. Macmillan’s current activities are focussed on four
core areas
Existing assets and people Advance Care Planning
Partnerships and Innovation Influencing
• Buildings including palliative day care (20),
palliative inpatient (59), Oncology (40) and
Information Centres (104)
• 551 palliative care beds
• Approx. 1,700 posts
• L&D offer including face to face courses, e‐
learning and grants
• To ensure people approaching the end of life
receive support to die in the place they
choose
Pushing for a commitment to
implement free social care at the end
of life (England)
Improving healthcare support/services
for people approaching the end of life,
e.g. 24/7 community nursing

18. What is NCPC?
• The umbrella charity for palliative and end of
life care
• Influences government policy
• Supports all sectors involved in providing,
commissioning and people using services
• Promotes equity of access to palliative care
and good end of life care for all
• Key priority-models to support more people
people with multiple conditions& dementia
• Dying Matters Coalition

19. The Dying Matters Coalition
Dying Matters was set up by the National Council for
Palliative Care, the umbrella charity for all those involved in
palliative care, to support the 2008 End of Life Care Strategy
Our aim is to raise public awareness about the importance of
talking more openly about dying, death and bereavement and
of making your wishes known
Dying Matters has over 32,000 members ranging from health
and care organisations, funeral directors, legal and financial
organisations and thousands of individual members

20. Partnership Initiative
• NCPC & Macmillan Cancer Support
• NHSIQ, NHSE & TDA
• Hospitals
• Aiming for;
‐ Continual Quality Improvement
‐ Building on the Best

21. The challenge
UK wide
quality improvement
within a two and a half year timeframe
learning from across four nations
flexibly across four nations
best use of all available resource
develops service improvement capability
building on success of Transform
www.ncpc.org.uk

22. Opportunity for improvement

23. % people who die in hospital
Percentage of people dying in
hospital 2010‐12
Marie Curie data atlas. 2010‐
2012. Copyright Marie Curie.

24. 82,060,422 outpatient appointments
in 1 year in England [5]
10% of these were attended by patients aged 80+
36% of the Welsh population had an
outpatient appointment [6]
Emergency readmissions within 30 days are
high xx for patients who had a period of uncertainty during their
inpatient stay who died within 100 days of discharge.
33% of around 10,000
incidents related to
discharge in 2012/13 were
due to communication at
handover. England [9]
One third of patients die during the one year
follow‐up period. 9.3% of all patients died in
the admission period. 25 Scottish Teaching Hospitals [2]
Systematic review showed variation in
home preference estimates ranged
31% to 87% for patients (9 studies),
25% to 64% for caregivers (5 studies),
49% to 70% for the public (4 studies).
[3]
Studies included in our efficacy
analysis of advance care planning
were all conducted in an outpatient
setting during scheduled visits. [4]
How well pain was relieved during the last three months of life, England, 2013 [7]
Around half of the 570,000 people who
die in the UK each year, die in hospital [1]
25% patients who receive ICU / HDU
care are near end of their lives . Around 30k
patients admitted to ICU/HDU in Scotland. Around
16% receive last days of life care in the unit. A further
9% die in a general ward/ post discharge. [8]
On average there were xx
emergency readmissions per
acute hospital in 2011.

25. "Those with experience
of relatives dying in
hospitals report
the medical support is
not as good as expected,
while personal support is
poor, but as expected."
Sue Ryder, a time and a
place[12]
69% of bereaved people whose relative or friend died in a
hospital, rated care as outstanding, excellent or good. Significantly
lower than hospice (83%), care home (82%) or at home (79%). England,
VOICES‐SF survey
33% reported that the hospital services did not
work well together with GP and other services outside the
hospital. England VOICES‐SF survey [7]
some aspects of the dying
environment as being more
important than physical
location. [11] Choice
report
More than 73% respondents felt
hospital was the right place for their
friend or relative to die, despite only 3%
of all respondents stating patients
wanted to die in hospital. [7]
“Sometimes, it's
the little things
that matter, and
that is what you
remember.”
Expert with lived experience. [10]
While the majority said choice is important, many
said an important consideration was quality. [11]
Themes from ombudsman report [13]
•Not recognising people are dying, not responding to
need
•Poor symptom control
•Poor communication
•Poor care planning (hospitals and GPs liaise)
•Delays in diagnosis
Hospital staff received
the lowest
proportion always
showing dignity and
respect (58% for
hospital doctors and 51%
for hospital nurses). [7]
Most bereaved people did not
talk to anyone from any support
services since the death, most.
18% said they had not, but
would have liked to. VOICES‐SF

26. What should the priorities be?
Patient focused outcomes
Clinicians/Funders/ User & Carer
engagement
Logic Modelling approach
Long List of Priorities to Short List

27. ‘A logic model’ and shared
learning and insights

28. Aim:
2 stones
lighter!
Energy Out
Energy In
Walk daily
commute
Stairs not
lift
Exercise
Reduce
alcohol
intake
Eat Less
Pedometer
Gym work
out 3 days
Squash
weekends
No pub
weekdays
Take
packed
lunch
Low fat
meals
Driver Diagrams ‐ weight loss

29. Transforming End of Life Care in
Acute Hospitals: driver diagram

30. Long List Priorities
• Hospital outpatients: advance care planning,
anticipatory planning and co‐ordination
• Emergency care: facilitating the best place of
care for patients
• Communication on handover to GP and
services in the community

31. Continued.........
• Shared decision making on treatment options
• Improve pain and symptom management
• Bereavement and post death care
• Sustainability ward and system capability to
sustain improvement

32. Short List to date
• OPD – opportunity for ACP etc
• Communication on handovers to GP /
Community
• Pain & Symptom Management
• Shared Decision making – Patient / family /
clinician

33. Your Contribution
• Give us your feedback on Priorities
• Share your learning what works / what
doesn’t
• Any resources you have found helpful
• Solutions to barriers
• Good Practice examples / case studies