London End of Life Care Clinical Network

Date

End of Life Care

Documentation:

A London wide approach

Caroline Stirling, Clinical Lead, Camden, Islington ELiPSe and UCLH & HCA Palliative Care Service,

EOLC Lead for UCLPartners Jenna Evans, Senior Project Manager, London EOLC

Clinical Network

Housekeeping

• Loos

• Fire alarms

• Break – 10.30

• WiFi…..

Introduction

• Project to date

• Aim of project

• Objectives of meeting

• National & local picture

• Examples of content

Project to date

• April 2014

• EOLC Strategic Clinical Leadership Group formed

• Good care, good death, good bereavement

• Workforce & training

• Engagement and social strategy

• Community

• July 2014

• Proposal to initiate project to develop unified EOLC documentation for London agreed

• October 2014

• Stakeholder event to test appetite for unified documentation and agree priorities

• Relevant in current climate, should be a suite of documents

Project to date

• February 2015

• Letter to 32 CCGs, 27 acute Trusts, 10 community Trusts, social care and 3rd sector organisations, asking for support for initiative

• April 2015

• Support secured from 30 CCGs, 18 acute Trusts, 6 others, including LAS and 111

• CCG engagement event - unanimous support for project

• May 2015

• Outline of project plan presented to CCG chairs by Peter Kohn

Aim

• By 1st June 2016, information that is relevant to the current and future care of patients with life limiting

illnesses will be recorded using the same documentation, and be valid in all care settings

throughout London

Objectives for today

• Product

• Agree on the nature of content

• Agree a name

• Process

• Agree mode(s) of documentation / communication

• Plan

• Agree implementation plan

Would unified documentation help?

• Uncertain

• Evidence is sparse, multifactorial, affected by

• Demographics

• Investment / prioritisation

• EPaCCs etc…..

• However, clinical reality and movement of patients / staff are particular factors that are worth considering

• Needs careful implementation to minimise harm

Discussion, recording and communication of preferences, including location, and plan

• Confers

• Reduced stress, anxiety (carers) and higher pt/carer satisfaction

• Fewer hospital days in last year of life

• Fewer hospital deaths

• Reduced likelihood of emergency admission

• Reduced cost of care (*)

Detering et al, BMJ, 2010;340 Andeleeb et al, BMJ Supp &PallCare 2013;3, 452-5 Abel et al, BMJ Supp &PallCare 2013;3, 168-73

www.england.nhs.uk

National Drivers

Ambitions for EOLC

• Getting care as good as it can be wherever the person is – at all stages

• Care that matches person’s preferences as closely as possible and meets needs as far as possible

• Staff who have confidence to bring these skills into other parts of care – laterally / upstream

• Reducing inequality gap

• Shared responsibility for playing positive part in EOLC

www.england.nhs

Action for EOLC: 2014-16

www.england.nhs.uk

Engaged, involved and compassionate communities

House of Care framework – for End of Life Care

Information Access Carers

Currency/toolkit Effective interventions Insight of pts/carers

NICE, PHE, RCP, CQC… supported, cohesive Audit, EPaCCS

Engagement information

Guidance Training Data Communities of practice

Choice in end of life care Support, involvement, choice, access

Choice in end of life care – DoH, Feb 2015

Every moment counts

‘Every moment counts’ – National Voices, March 2015

London

• 8 million people

• Likely to rise to 10.1 million by 2041

• 65+ will rise from 0.9m to >1.5m (2011 – 2041)

• Complex care environment

• 32 CCGs

• 27 acute trusts (>60 hospital sites)

• 12 mental health / community trusts

• >5000 GPs

• 27 hospices

• ’00s other care environments - care / residential homes / hostels / wet houses / prisons etc

London

• Differing forms used to document decisions related

to care of pts with life limiting illnesses:

• One area (Kingston & Richmond) where DNACPR is valid when a patient moves between settings (for 7/7)

• EPaCCS used in London, uptake variable, outcomes positive

• Coordinate My Care:

• (21,270 records created since 2010 (~12% expected deaths),

• 79% of deaths with PPD recorded (5,222) were in preferred place,

• 82.9% all deaths (8723) were out of hospital

• Health Informatics- NE

Unified DNACPR policies in the UK

y

y

y

y

y

y

y

y

Scotland

Wales - draft

y - Torbay

Preferred and actual place of death – national / London data

Place of death

Preferred – National

(2010) (n=1351)

Actual - National

(2010) (461,016)

Actual - London (2010)

(n=48,297)

Actual London (2013)

(47,580)

Hospital 3% 53% 59% 48%

Home 63% 21% 20% 22%

Care Home 3% 18% 13% 21.5%

Hospice 29% 5% 5% 5.5%

Other 2% 3% 3% 3%

Local preferences and place of death, Gomes et al, August 2011

ONS data (2013)

Death in Usual Place of Residence

Time period National average

London SCN

South West SCN

2010-11 Q1-4 40.3% 34.2% 46.2%

2013-14 Q3 – 2014-15 Q2

45.1% 37.1% 51.2%

EOLC intelligence network

Perceptions of care – national / London data

Question

National average

London

% bereaved relatives rate care from GPs as excellent

35% 26%

% bereaved relatives rate care from District and community nurses as excellent

45% 34%

% bereaved relatives felt they were given enough support at time of relative’s death

59% 53%

% carers felt they were included / consulted in decisions

73% 66%

VOICES 2011-12 Carer Survey 2012

Aim

• By 1st June 2016, information that is relevant to the current and future care of patients with life limiting

illnesses will be recorded using the same documentation, and be valid in all care settings

throughout London

Objectives for today

• Product

• Agree on the nature of content

• Agree a name

• Process

• Agree mode(s) of documentation / communication

• Plan

• Agree implementation plan

Current models

• Whole system approach to EOLC – professional or patient led

• DNACPR

• ‘Treatment escalation’ plans

• Advance Decision to Refuse Treatment

• Advance Statement

• Patient information leaflet on advance care planning

• Care in the last days of life??

Deciding Right

www.nescn.nhs.uk/deciding-right/

Deciding Right

www.nescn.nhs.uk/deciding-right/

• Shared decision making

• Recording of mental capacity / best interest decision making

• DNACPR form

• Emergency Health Care Plan

• Advance Decision to Refuse Treatment

• Supporting ‘App’

Deciding Right

Deciding Right

Deciding Right

0

20

40

60

80

100

120

Oct-Dec 2012 Jan-Mar 2013 Apr-Jun 2013**

Jul-Sep 2013** Oct-Dec2013**

Jan-Mar2014**

Number of emergency admissions ~ Nursing Home Residents

Deciding Right outcomes

0

500

1000

1500

2000

2500

0

5000

10000

15000

20000

25000

30000

Oct-Dec 2012**

Jan-Mar 2013**

Apr-Jun 2013**

Jul-Sep 2013** Oct-Dec2013**

Jan-Mar2014**

Nu

rsin

g H

om

e R

es

ide

nts

All

No

rth

Tyn

es

ide

ove

r 7

5 y

rs

Number of Bed Days ~ All North Tyneside over 75 years v Nursing Home Residents

All North Tyneside over 75 yrs Nursing Home Residents

£-

£50,000

£100,000

£150,000

£200,000

£250,000

£300,000

£350,000

£400,000

£0

£1,000,000

£2,000,000

£3,000,000

£4,000,000

£5,000,000

£6,000,000

£7,000,000

Oct-Dec2012

Jan-Mar2013

Apr-Jun2013**

Jul-Sep 2013 Oct-Dec2013

Jan-Mar2014

Nu

rsin

g H

om

e R

es

ide

nts

All

No

rth

Tyn

es

ide

ove

r 7

5s

Cost of Emergency Admissions - All North Tyneside over 75 years versus Nursing Home

Residents

All North Tyneside over 75 yrs Nursing Home Residents

Milton Keynes / Essex ACP guide

• Patient held

• Contains information and forms relating to:

• Advance statement including PPC & PPD

• ADRT

• LPA

• Putting affairs in order /will / tissue donation / funeral

Milton Keynes / Essex ACP guide

Planning your Care in

Advance

DNACPR & Treatment Escalation Plans

• 2014 - Resuscitation Council UK updated national DNACPR form post Tracey case.

• Working group formed to review form and process:

• 1st meeting February 2015 - agreed to develop a national form that records CPR decisions and decisions about other life-sustaining treatment in the context of a broader plan

• Patient-focussed, cross boundary, all ages

• June 2015 - subgroup formed to examine current examples and create a draft form

• August 2015 – Meeting planned to review / finalise this and discuss implementation plan

UFTO outcomes

Fritz et al, PLOS ONE, 2013, 8;9 e70977

• Significant reduction in harm if DNACPR form alone:

• frequency

• Severity, including harm contributing to death

• Themes from interviews

• Interdisciplinary communication

• Clarity and consistency

• Patient dignity and respect

Torbay TEP/DNACPR

The Mental Capacity Act ( 2005) requires you to assume that individuals have capacity, unless you suspect the person

has an impairment or disturbance of the mind or brain. It also requires any assessment to be decision specific

.

If you

suspect someone lacks capacity you are required to complete the 2 stage Mental Capacity Assessment.

Mental Capacity Assessment

Stage 1:

Document the reason you believe the individual has an impairment or disturbance of the functioning of the mind or brain.

Reason;…………………………………………………………………………………………………………………

Stage 2: Can the individual: Yes No

1. Understand information about the decision to be made?

2. Retain that information in their mind?

3. Use or weigh that information as part of the decision making process?

4. Communicate their decision (by talking, using sign language or any other means)?

This form should be completed legibly in black ball point ink

• Complete patient details or affix

the pat ient ’ s identifica t ion label to the top right hand cor ner

• The date and time of writing the form should be entered

• This form will be regarded as ‘INDEFINITE’ unless it is clearly cancelled

• The form should be reviewed whenever clinically appropriate or whenever the patient is transferred from one

healthcare setting to another, and admitted from home or discharged home

• The TEP V10 Guidance can be found on the Devon TEP website (www.devontep.co.uk)

If following clinical review, treatment decisions are changed:

• Clearly score through this form, then sign and date the discontinuation box overleaf

• File at the back of the patient’s medical notes

• Document the change of decision in the patient’s medical notes

• Complete a new form and insert in the patient’s medical notes

“On discharge, if appropriate and the patient and or family have been informed of the decisions, then the

original form should accompany the patient and a photocopy should remain in the patient’s medical notes”

Is the response yes to all four Stage 2 questions?

No

Is this loss of capacity likely to be

temporary and can the decision wait?

Is there a valid ADRT?

(Advance decision to refuse treatment)

Proceed with completing TEP in line with Best Interest principles (please note if the person has no friends, relatives or unpaid carers

then you must include IMCA services). Please document rationale/Best Interest principles for treatment and discussion in boxes overleaf

Is there a Personal Welfare Lasting

Power of Attorney (PW-LPA)

registered with the Offic

e

of the Public Guardian?

If No

If No

If No

Complete TEP form as part of

discussion with patient.

Incorporate into TEP form or

Best Interests Decision

If Yes

Set decision review date:

……........……………….

If Yes

If Yes Ensure that the PW-LPA is

consulted and incorporated in

any decisions regarding TEP

Yes

Gloucester TEP/DNACPR

AMBER Care bundle

Patient information

AND Milton Keynes Essex leaflets

Advance Decision to Refuse Treatment - NCPC

National Council for Palliative Care

Advance Decision to Refuse Treatment – Deciding Right

Name on each page GP details

Advance Statements - NHS

Advance Statements - Leeds

Discussion

• Views on potential content

• Further questions

• Anything we have missed

• Agree what should be included - use pack slide number 3

Product voting

Document Number of votes out of 14

Patient information leaflet

Family/friend/carer information leaflet

Mental Capacity Act assessment form

DNACPR & Treatment Escalation Plan

Emergency Health Care Plan

Advance Decision to Refuse Treatment

Advance Statement/Preferred priorities of care

Care in the last days of life

Name of suite

• Thinking ahead in London

• Planning ahead in London

• Deciding Right in London

• Coordinate my Care

• My choice

• Future care planning

• …….??

Brain storm – 10mins

• View on names

• Power of veto

• Any other names to add

• Order of preference

Sign off of name

• London EOLC Alliance

• Patient focus group

• Clinical Senate

• Anywhere else??

Process

• Paper

• Electronic

• Both

• Flagging system for LAS

• Stays with patient / those important to him/her

• Date and review date are crucial

• Paper trumps electronic

Discussion

• What process should we have?

• Paper - stays with the patient

• Electronic

• Both

• +/- flagging system

• Risks and how to overcome it?

Process

Process Please tick for yes cross for no

Paper – stays with patient

Electronic - EPaCCS

Both

Flag on EPR / LAS

Risks and how to overcome it?

Implementation plan – things to think about

• Wider engagement including public - how and who? Tables 1-3

• Policy development

• Funding – how / what for? Tables 4-6

• Legal review - Hempsons

• Communication strategy

• Testing / roll out / big bang – how? Tables 7-9

• Training plan - ?through champions – Acute trusts / CCGs / 3rd sector… ‘super group’! How and what? Tables 10-12

• Outcome measures - Tables 13-15

Next steps

• Write up and dissemination

• Evaluation

• Expressions of interest for ‘super group’

• Development of work plan

Summary

The specifics of the documents and processes

are important for success.

The concept and culture needed for early shared decision making as patients approach

the end of life are vital for success.