Excellence in end of life care –

is it possible?

Dr Suzanne Kite

Leeds Teaching Hospitals NHS Trust

RCP London, 10 November 2015

Leeds Teaching Hospitals NHS Trust

What does excellent look like?

Well described:

Ambitions for Palliative & End of life Care 2015

One Chance to Get it Right 2014

NICE Quality standards for EoLC 2011

GMC EoLC guidance 2010

CQC – eg Frimley Park, ‘outstanding’

“The whole care team on the ward were excellent. Mum was with them for nearly 8 weeks and they formed a bond with her and were able to help her on her final journey with dignity and respect.

After mum passed away two of the doctors who had delivered the majority of her care spoke to me and made me feel much better because they had understood and acted on her behalf and within her wishes. It was comforting to me and my family.

The communication throughout was open and clear. We knew exactly what was happening and it was given in clear language we could understand. I have a lot of admiration for the role they undertake. It wasn't just clinical it was personal and they have my sincere thanks and gratitude”.

Patient experience

And caring for the family…

“Ward X were wonderful – discrete yet available,

cups of tea were plentiful, and (nurse) and (nurse)

were terrific at the time of mums death”

“We were very well cared for in the two days

before the death. In hospital conditions it was

impossible to better the care”

What have we done?

Education

Partnership working and integration

Building leadership and infrastructure

Continuous quality improvement

Networking

Settings standards and assurance

….. fostered a culture

Education

With thanks to Lesley Charman

Education – what we’ve learned so far:

Local ownership

Building clinical end of life care champions

link nurses

senior clinicians development programme

Understanding behavioural change

Working relationship with HEYH

Embedding within organisational learning

Menu of learning opportunities

Partnership working

Longstanding close working relationship between

specialist palliative care providers, acute and

community trusts, primary care & commissioners.

Includes:

Five year strategies

Marie Curie Delivering Choice Programme 2006-9

Health Needs Analysis 2013

Commissioning Strategy 2014

Palliative Care Ambulance

Building leadership and infrastructure

Developed:

an EoLC Operational Team

a management triumvirate of doctor, nurse, and a

manager senior enough to have influence and

perspective and WITH ENOUGH TIME to do some of the

detail

a wider EoLC group drawn from relevant clinical areas

across the trust - strategy & action plan

Clearer Executive leadership

Started small.

Waiting area for relatives visiting the

mortuary, 2011

New waiting room, 2012

New entrance to Bereavement Suite

Continuous quality improvement

‘The most important single change in the NHS in

response to this report would be for it to become, more

than ever before, a system devoted to continual

learning and improvement of patient care, top to

bottom and end to end’ (Berwick, 2013)

‘Give the people of the NHS career-long help to learn,

master and apply modern methods for quality control,

quality improvement and quality planning’ (Berwick, 2013)

Model for improvement

A framework for accelerating improvement, based

on three fundamental questions:

What are we trying to accomplish?

How will we know that a change is an improvement?

What changes can we make that will result in

improvement?

Combined with the Plan-Do-Study-Act (PDSA)

cycle.

7 Repeat steps 4-6

7 Steps to

measurement

for improvement

1 Decide Aim

2 Choose Measures

3 Define Measures

4 Collect Data

5 Analyse & Present

6 Review Measures [2]

Identify gaps and sustain improvements

Quality assurance

To involve

patients

more in care

decisions

towards the

end of life

Increased

identification of

patients

approaching eol

Improved

communication

with patients

regarding eolc

Eliciting &

recording &

sharing patient’s

wishes &

preferences

Patients with eolc

needs identified by

community

services

Staff training and

education

Aim and main drivers

LTH generic driver

diagram

Identification of

patients last days /

hours

Identification of

patients with limited

prognosis & whose

recovery is uncertain

Patients /

carers/public

education & info

Documentation

Admission

processes

Handover

processes

AMBER care

bundle

End of life

care plan (last

days / hours)

Audit

Advance care

planning

Oncology driver diagram

To ensure all Inpatients

with: an unplanned

admission & advanced

, progressive

malignancy &

uncertain recovery

have a ceiling of care

plan incorporating their

preferences & priorities

Fully informed consent

for oncology Rx (OPC)

Possible outcomes of

oncology Rx planned

for at outset (OPC)

Assessment includes:

Is acute problem

reversible?

Benefits/burdens for Rx

options.

Options for post-

discharge oncology Rx

Have patient priorities

changed?

Symptoms

Treatment options &

care plan discussed

with patient & family

including therapeutic

uncertainty & change in

prognosis as

appropriate

Documentation of

patient priorities &

preferences, and aims

of oncology Rx,

shared with GP

Early consultant

inpatient review

Escalation & medical

plan discussed with

nursing staff

Care plan

documented in

medical notes & ACB

nursing care plan

Daily reassessment of

goals of care

Ongoing discussion

with patient/family on

preferred plan & place

of care

For patients

who recover &

are discharged:

clear

communication

with GP,

community

nursing &SPCT

on care plan

For patients

who continue to

deteriorate,

preferred place

of care/death

discussed and

planned for

appropriately

Review of

patients who

die at M&M

meetings

Daily board round

handover

Consider

EPaCCS

Measurement/evaluation

National VOICES Survey of bereaved carers(‘12+’13)

Annual LTH bereaved families’ survey

Biannual national eolc audits

Annual trustwide mandatory medical audit

Outpatient clinic letter audit

Feedback from training

ONS/HES data

CQC visit

Complaints/compliments/incidents

Clinical practice

Challenges in end of life care measurement

for improvement

often can’t ask patients directly

multiple care settings, overlapping initiatives

requires triangulation/ synthesis of multiple data sources

waiting for data supplied by others ….

constant reorganisation of NHS

improvement methodology better suited to technological

interventions than to interpersonal aspects of care (Conry

2012)

Key learning

“Improving end of life care” is too generic

Need ‘SMART’ aims

Ownership by clinicians vital

Demonstrating an impact for specific

interventions is difficult

Now focussing on embedding eolc within other

initiatives eg:

Deteriorating patient workstream

Mortality review programme

27 6

TEP

Networking

For example:

Transform programme – pilot site in 2011

DH EPaCCS pilot, 2011

Regional Acute Hospitals Group, 2012-15

And informally

Setting standards and assurance

EoLC group drawn from relevant clinical areas across the trust &

embedded in quality and governance processes of trust including:

linkage to commissioning strategy, risk register

annual work plan

reporting to Board

Executive leadership.

Quality assurance provided directly to clinical areas:

Annual LTH bereaved families’ survey

Biannual national eolc audits

Annual trustwide mandatory medical audit

CQC visit

Complaints/compliments/incidents

Clinical practice

What next?

Palliative care and interstitial lung disease project:

6/12 SPCT consultancy model, June-Dec 2015

1PA SPC Consultant time

Aims to improve access to palliative care:

Upskill respiratory team

Improve information sharing and access

Establish greater links between the respiratory team and hospital

+ community palliative care teams

Method:

Identify unmet patient needs, and address

Identify staff training needs, develop bespoke education

Develop relevant business cases as necessary

In conclusion

Excellence in end of life care is ‘Everybody’s business’

Listen, and engage with people.

Tailor approach to your environment.

Create management capacity and a

“ culture firmly rooted in continual improvement”(Berwick,

2013)

With thanks to:

Palliative Care Team and

Elizabeth Rees, Lead Nurse EoLC

Dr Fiona Hicks

Karen Henry

Christopher Stothard, EoLC Nurse

Claire Iwaniszak, EoLC Nurse

Deborah Borrill, EoLC Discharge Facilitator

Dr Adam Hurlow

Lesley Charman

Kathy Gibson

Dr Suzie Gillon

Dawn Marshall, Deputy Chief Nurse

Susannah Shouls

And the many others who have contributed across the acute trust and city

References

The How-to Guide for Measurement for

Improvement, www.patientsafetyfirst.nhs.uk

Conry MC, A 10 year systematic review of

interventions to improve quality of care in

hospitals, BMC Health Services Research 2012,

12:275