Improving the quality of end of 
life care in acute hospitals
Building on the Best
Adrienne Betteley
Anita Hayes
Chris Sutcliffe
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 
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
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
Partnership Initiative
• NCPC & Macmillan Cancer Support
• NHSIQ, NHSE & TDA
• Hospitals 
• Aiming for;
‐ Continual Quality Improvement
‐ Building on the Best 
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
Opportunity for improvement
% people who die in hospital
Percentage of people dying in 
hospital 2010‐12 
Marie Curie data atlas. 2010‐
2012. Copyright Marie Curie. 
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. 
"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 
What should the priorities be? 
Patient focused outcomes
Clinicians/Funders/ User & Carer 
engagement
Logic Modelling approach
Long List of Priorities to Short List
‘A logic model’ and shared 
learning and insights
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 
Transforming End of Life Care in 
Acute Hospitals: driver diagram 
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 
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
Short List to date
• OPD – opportunity for ACP etc
• Communication on handovers to GP / 
Community
• Pain & Symptom Management
• Shared Decision making – Patient / family / 
clinician 
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

Transforming End of Life Care in Acute Hospitals PM Workshop 6: Working together - Building on the best