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Programme Board deep dive

session

Identifying people who are likely to

be in the last year of life

9th August 2017

Chaired by:

Professor Bee Wee,

National Clinical Director for End of Life Care

NHS England

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Purpose of the session:

• To provide an overview on why identification is important; what the current situation is and some of the tools available

• To hear different perspectives from across the system on identification including: people with lived experience; clinicians/providers and commissioners

• To inform the scope of a project NHS England will lead in this area to improve identification of those in the last year of life and agree actions and next steps across system

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Throughout the presentation - consider the

following questions, which we’ll come back to at

the end:

• What mechanism should we use for supporting better identification?

• Should we be using prognostication tools? If so, how do we encourage /enable use of the tools?

• Are there any barriers or opportunities not already raised?

• Is there any other national work we need to be aware of which may have an impact on this project?

• What leverage options do we have?

• What else do we need to consider?

• What are the agreed actions and next steps?

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Scene setting: context

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Why?

For the person

• Opportunity to initiate conversations about important

decisions – now, for future and in parallel

• Optimise symptom management and quality of life

• Encourage person to consider and discuss views and

preferences with family and those close to them

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Why?

For clinicians and ‘system’

• Triggers proactive approach and MDT involvement

• Documentation:

• Facilitates information sharing across organisational boundaries

• Data monitoring for inequalities

• Pitfalls with over-identification

• Aiming for the right outcomes

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Current situation

• Identification – patchy, often not timely

• GP – specialist: who triggers?

• Cancer vs non-cancer difference in GP registers:

• 48-66% of people with cancer on register vs <20%

non-cancer

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Tools to assist identification

CLINICAL JUDGEMENT, supported by:

• Surprise question

• Gold Standards Framework Proactive Identification

Guidance (ex-Prognostic Indicator Guidance)

• Supportive and Palliative Care Indicators Tool (SPICT)

• Palliative Performance Scale

• Palliative Prognostic Index

• Prognosis in Palliative Care

• …….

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Accuracy of Surprise Question

• Systematic review: 22 papers

• 25,718 estimates: clinician intuition correct in 82%

• Meta-analysis:

• Correct prediction of outcome: 74.8%

• Slightly higher as more imminent: 76.4%

• Doctors slightly more accurate than nurses:

• C-statistic: 0.735 (docs) vs 0.632 (nurses)

• Accuracy better in cancer:

• 78.6% (cancer) vs 76.1% (renal) vs others (72.3%)

• But low proportion of deaths in each study (16% overall) and low numbers of high quality studies included

Ref: White et al, 2017

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Discussion today….

• How can we improve identification or recognition of people

with advanced conditions who are at risk of deteriorating

and dying, such that they could benefit from holistic needs

assessment and proactive care planning?

• Whilst avoiding:

• inherent inaccuracies in prognostication, and

• pitfalls of over-identification?

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A Service user perspective

Tony Bonser

Patient & Public Voice representative

Diana Robinson

Patient & Public Voice representative

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Clinicians/service

providers perspective

Catherine Millington-Saunders

RCGP and Marie Curie National EoLC Clinical Champion

David Warriner & Dr Lucy Flanders

National Medical Director’s Clinical Fellows

NHS England

General Practice

Deep Dive Identification

Dr Catherine Millington-Sanders

RCGP and Marie Curie National EOLC Clinical

Champion

9th August 2017

1

3

Main Funding Sources

• GMS and PMS contracts

• QOF and Clinical Disease Registers

• National or Locally Enhanced Services

GMS and PMS contracts

General Medical Services

The contract provides a ‘global sum’, which is

determined by linking the amount paid to a

practice to the needs of its registered patients.

Personal Medical Services

rather than a ‘global sum’, PMS providers are

paid a fixed annual rate for the provision of

services. This is another way of allowing them to

tailor their services to meet local needs.

QOF – PC Clinical Disease Register

The value of a QOF point for 2016/18 is £165.18.

Rise in multi-morbidity

And complexity

Systems on the left, the population is on the right

Why is this Important to General

Practice

Traditional bio-medical model

History

Examine

Physical or

mental

state

What is the

problem

and how

does it

affect you

Investigations

Blood tests x-

rays, scans etc.

Diagnosis

Differential

or absolute

diagnosis of

the

presenting

problem

Treat

Medication

advice,

surgery

and/or

referral

Review

Reassess

diagnosis

and/or

impact of

treatment

Of course, life is not so easy and

anyway medicine is rarely a simple

straight forward linear process!!!

Modeling Care - LTC/Dementia/Frailty/EOLC

Top 20% takes

=80% cost of total

Top 5% takes

= 65% cost of total VHR Very High Risk - Patients/YR

0.5

% 4.5

% 20%

HR High Risk – Patients/YR

Community

Services

(a)Proactive

– risk

stratified

populatio

n +

clinical

judgment

(b)Reactive

- clinical Modeling Care

Impact on the System

3 59 14 21

3447

64

85100

151

20

31

51

74

115

151

200

242

318

342

479

0

100

200

300

400

500

600

0 1 2 3 4 5 6 7 8 9 10+

An

nu

al a

dm

issi

on

rat

e p

er

10

00

pat

ien

ts

No of conditions

Potentially preventable admission

Other emergency admissions

And on us!

Medical or Social Model?

Crisis plan,

focus on bio-

medical

solutions –

passive

involvement

Support

planning

focus on

biosocial

solution –

active

involvement

Neither is right or wrong it

depends on context

Reactive Proactive

MDT

A proactive social model

Care and Support planning: a consultation model for

Long Term Conditions – Page 11

Think Local Act Personal, Personalised care and support planning tool. Available at: http:// www.thinklocalactpersonal. org.uk/personalised-care-and-support-planning-tool

http://www.rcgp.org.uk/clinical-and-research/our-programmes/~/media/Files/CIRC/Care%20Planning/stepping-forward-web-061015a.ashx

Purpose

UK General Practice:

Quality Improvement Standards

For Advanced Serious Illness + EOLC

Free, self-directed resource for practices

Robust, evidence-based quality

improvement step-by-step guidance

To inspire, support and enable general

practice to improve EOLC quality and

outcomes, at scale.

The 8 Standards

Standard 1: Professional and competent staff

Standard 2: Early identification

Standard 3: Carer Support - pre and post death

Standard 4: Seamless, planned, coordinated care

Standard 5: assess unique needs of the patient

Standard 6: Quality care during the last days of life

Standard 7: Care after death

Standard 8: General Practice being hubs within

Compassionate Communities

Next steps?

RCGP Quality Improvement team review

Working Group of practicing

clinicians/commissioners/legal/ PPI for independent

review and challenge – June 2017

Pilot practices/ CCGs to commence–Sept/Oct 2017

Pilot evaluation and model evolution–Feb-Mar 2018

Wider implementation and evaluation to

start April 2018

Dr Catherine Millington-Sanders

RCGP and Marie Curie National End of

Life Care Clinical Champion

For more information:

catherine.millington-sanders@rcgp.org.uk

Acknowledgement: CCSP slides from Dr. David Paynton

Clinical Lead for RCGP Centre for Commissioning

IDENTIFICATION OF PATIENTS AT THE END OF

THEIR LIFE C ON D I T I ON S PE C I F I C G U I D E

Dr David Warriner and Dr Lucy Flanders

National Medical Director’s Clinical

Fellows

NHS ENGLAND

BACKGROUND

• The Ambitions for Palliative and End of Life Care focuses on 6 key

ambitions.

• This is further supported by the foundation of ‘Personalised Care

Planning.’

“everyone approaching the end of life must be offered the chance to

create a personalised care plan.”

BACKGROUND

• The focus of end of life care is often on managing patients with a

cancer diagnosis

• We identified that there is a less unified approach to those with non-

cancer diagnosis, despite the numbers of elderly patients with

multiple co-morbidities and chronic disease

• The numbers of patients approaching the end of life with multiple

morbidities is increasing and it was felt necessary to think about how

guidance could be developed to help in the management of this cohort

• Decision to hold a scoping workshop with a multidisciplinary group

of generalists and specialists with an interest in end of life care

SPECIALIST INTERVIEWS

• Conducted with a range of senior healthcare professionals e.g. commissioners,

NCD’s, specialist nurses, GP’s and specialists.

• Designed to feed into the workshop and help shape the input and output

• Common themes :

• multi-morbidity, community,

• identification

• transfer of patients

• everyone's responsibility

• prognostic uncertainty

NON-CANCER WORKSHOP KEY THEMES

When is the right

time to have the

conversation?

Who should be having

the discussion?

primary/secondary/palliat

ive care?

Interface between primary and

secondary care- documentation,

conversations, discharge summaries

Every transition between care setting,

should be an opportunity for a discussion

Unpredictable disease

trajectories

Complex patients,

therefore seen by

multiple

specialties…who takes

the lead?

Poor evidence base around

prognostic indicators

Importance of using

the right language

CONCLUSIONS FROM THE WORKSHOP

• A group of clinical fellows met to discuss the key

themes raised from the workshop and to

determine what they felt should be the outputs of

the meeting

• A number of different options were considered

• What does good look like for end of life care in

patients with a non-cancer diagnosis?

• Need to be solution not problem focused

• These were presented to the EOLC team

• Conclusion was to produce condition specific

guidance for recognition and care of patients at the

end of their life for the generalist

OUR PLAN

• Each fellow to compose a

guidance document for their

area of interest

• For there to be a common

format for the guidance

• Introduction of a new toolkit

named REACT

• Request input from experts,

patients and specialist

organisations

OBJECTIVES OF THE DOCUMENT

• To include key symptoms which allow identification of patients at

end of life

• To include a patient perspective

• Condition specific top tips for managing the patient

• Encourage the involvement of other healthcare professionals early

on

• Focus on the importance of communication involvement of the

MDT team and shared decision making, in keeping with the

Ambitions.

• Highlight available resources that may be less well known to

healthcare professionals

OUR VISION

• Creation of a suite of documents

• Available to all healthcare professionals, but aimed at the

generalist

• NHS England document, but supported by specialist organisations

• Dissemination through patient organisations, specialist societies, royal

colleges

WHAT WE HAVE ACHIEVED SO FAR

• Two mature draft documents for respiratory and cardiovascular disease,

with a third for liver disease in development

• Input received from NCDs

• Input received from British Lung Foundation, British Society for Heart

Failure, British Thoracic Society

• Contact made with the RCGP

WHAT WE STILL NEED TO DO

• Consult expert patient groups

• Request a review of the document from the generalists

• Consider whether there needs to be a patient translated document

• Who is going to own this document?

• How do we measure impact?

• Requirement to keep document up to date- who is going to sustain this?

HOW CAN YOU HELP US?

• What do you think of the documents?

• Can you point us in the direction of expert patients?

• Where do you think the documents would be best placed?

• Any ideas for dissemination?

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A commissioner

perspective

Jacqueline Lansley

Director of Strategy, Commissioning &

Procurement

Integrated Commissioning Team

NHS Southend CCG and Southend-on-Sea

Borough Council

End of Life

A South East Essex approach to identification

• Identification happens via health and care professionals asking the simple question …. • ‘would I be surprised if the patient died within the next 12

months?’

• Health and care professionals range from GPs, Care Homes, Community Health, Hospice, Hospital, ambulance service etc

• Referrals are made to South East Essex Palliative Care Support Register (PCSR)

• PCSR maintained on SystmOne and managed by Community Health provider

• The benefits of being on the PCSR are better / more bespoke care, reduced admissions and a higher rate of achieving preferred place of death

Identification (1)

• SEE total population is circa 360K. National figures suggest that 1% of population will die per year of which 25% will be sudden / accidental

• We therefore expect for 2,700 people be in classed as EoL

• As at June 2017 the PCSR has 1307 patients registered as EoL

• Capacity to deliver enhanced services aside, there are circa 1400 patients in SEE who should be on the register

• This represents a challenge for SEE health and care providers to identify patients for the register

Identification (2)

• Other ways of identifying patients for the PCSR include;

• Serious Illness Conversation training;

• EoL champion within the Ambulance service;

• Treatment & Escalation planning;

• Macmillan GPs

Identification (3)

Increasing identification (1) … to increase confidence and raise profile of register

• Audit of Out of Hours (OOH) data for EoL patients; – Making sure that we understand the types of service

EoL patients require OOHs to ensure there is a benefit of being referred to the register

• Making sure the register is effective; – Time of referral (i.e. early enough to make a difference

to quality of life and not just referring in last days of life)

– Ensuring that there is enough staff to provide a high quality of care

• Treatment & Escalation planning;

– Hospital working in partnership with community health and primary care to provide high quality care for EoL register patients

• One care record across the system;

– Access to care records from health and care providers from different organisations

Increasing identification (2) … to increase confidence and raise profile of register

• Treatment & Escalation planning;

– Hospital working in partnership with community health and primary care to provide high quality care for EoL register patients

• One care record across the system;

– Access to care records from health and care providers from different organisations. Challenge is for the hospital to provide access to staff to SystmOne

Increasing identification (3) … to increase confidence and raise profile of register

• GP training;

– Vast majority of interaction with potential EoL patients is with primary care

– Resource and efforts being made to encourage primary care to refer patients to register, eg serious illness conversation, Mac GP, Governing Body lead by examples etc

Increasing identification (4) … to increase confidence and raise profile of register

Key Challenges

• Ownership of referrals to the register;

• Timeliness of referrals to the register;

• Current capacity of register team and keyworkers to undertake advanced care plans;

• Resource required for SystmOne rollout at hospital;

• Engagement with wider system professionals for Treatment & Escalation plans

• Data

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Questions for board discussion:

• What mechanism should we use for supporting better identification?

• Should we be using prognostication tools? If so, how do we

encourage /enable use of the tools?

• Are there any barriers or opportunities not already raised?

• Is there any other national work we need to be aware of which may have an impact on this project?

• What leverage options do we have?

• What else do we need to consider?

• What are the agreed actions and next steps?