end of life care documentation: a london wide...
TRANSCRIPT
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.