Improving the quality of end of life care in acute hospitals

Building on the BestAdrienne Betteley

Anita HayesChris 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 challengeUK widequality improvementwithin a two and a half year timeframe learning from across four nations flexibly across four nations best use of all available resourcedevelops 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 reportthe 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 thingsthat matter, and that is what youremember.”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 lowestproportion 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 approachLong 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