Transforming End of Life Care in Acute Hospitals PM Workshop 6: Working together - Building on the best by Professor Bee Wee, NHS England, Adrienne Betteley, Macmillan Cancer Support, Anita Hayes, The National Council for Palliative Care

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

2. 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

3. 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

4. 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

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

6. 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

7. Opportunity for improvement

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

9. 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.

10. "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

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

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

13. 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

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

15. 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

16. 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

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

18. 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