Difficult discussions at the end of life

SCIMP Nov 2010 Using the electronic Palliative Care Summary (ePCS)

& Key Information Summary (KIS) as Anticipatory Care Plans

Dr Peter KiehlmannGP, Aberdeen & National Clinical Lead Palliative Care eHealth

Dr Libby MorrisGP, Edinburgh & National Clinical Lead Primary Care eHealth

Questions?

What is ePCS? Who can use it? How does it help

Patients & carers Staff

In-hours Out of hours?

Developing an Anticipatory Care Plan Future developments – Key Information

Summary (KIS)

The maze of trees

“How we care for the dying must surely be an indicator of how we care for all our sick and vulnerable patients. Care of the dying is urgent care – with only one opportunity to get it right, to create a potential lasting memory for relatives and carers…”

Professor Mike Richards CBE

Living and Dying Well

• “ to ensure a comprehensive approach to palliative care based on clinical need and not diagnosis, age, post code, creed or ethnicity”

• Outputs from many expert groups• GMC Guidance on End of Life Treatment and care• How to help Clinical staff to have confidence to

deliver quality Pall & End of Life Care

ePCS - What is it?

An electronic Palliative Care Summary An extension to Emergency Care Summary (ECS) & Gold Standards Framework Scotland (GSFS) For use both In Hours & OOH ePCS replaces current faxed communications Allows GPs & Nurses to record in one place

Diagnosis, Rx, Pt Understanding & Wishes, Anticipatory Care Plans, review dates, lists for meetings

ECS

Patient info from GP computers -> ECS store twice daily

Medication & Allergies 97% of GP Practices >5 million patients

Explicit Consent to view ‘Read only’ available to… NHS24, A&E, AMAU, SAS

• Covers 99%+ of population• Used by 4500 NHS staff• 50,000 accesses per week• (3.5million to date)• EU-commissioned independent evaluation• Benefits found included:

• patient safety, time saving, faster treatment decisions

• financial value assigned to costs and benefits, over time….

Emergency Care Summary–benefits

Usage & progress of ECS

Pilot 2004, full rollout 2006Over 5.3 million patient records 1900 patient opt-outs (0.03%)5.5 million clinical accesses to ECS since

launchAverage 195,000 accesses per month

2.17 million ECS accesses were made from Jan – Dec 2009, an increase of 37% from 2008

Total Accesses

0

50000

100000

150000

200000

250000

Jan

Feb Mar Apr

May Ju

n Jul

AugSep

tOct

Nov Dec

Month

Acc

esse

s

2008

2009

Ongoing ECS Projects

Go live with Scottish Ambulance Service In Cab paramedic use

Integration with Clinical Portal North and West Portals in testing

Integration with National PMS InterSystems developing user interface

Integration with FairWarning Audit reporting linked to use of other eHealth systems

ePCS Overview

OOH clinician ePCS display

ePCS update 1. During

consultation

2. Due to prescription

3. Team meeting or other contact

Audit

trail

ECSStore

NHS 24

A&E

Ambulance

TBD…

Practice Admin. Staff

PracticeServer

GP /DN

consultation

ePCS Dataset Consent - Palliative care data transfer Carer details and key professionals Diagnosis – as agreed by patient by pt & GP Current Rx –Rpt, 30/7 Acute, Allergies; Patient wishes

Preferred Place of Care [PPoC] )DNA CPR decision ) Anticipatory

Patient’s & Carer’s understanding of ) Care diagnosis/prognosis ) Plan

Just in Case – Rx & equipment ) Advice for OOH care )

GP Mobile no., death expected? Cert. etc )

EMIS - Summary

ePCS no diagnosis added yet

Diagnosis agreed with pt & added

Patient/Carer Wishes

New ECS build screenshots

Access to PCS Information

Base ePCS –view in Adastra

Mobile ePCS - Adastra

Using ePCS in practice –a continuing process

Does this pt have Palliative Care Needs?Does this pt have Palliative Care Needs? Add to Pall Care Register, Add to Pall Care Register, Once Consents to send ePCS ->OOH,Once Consents to send ePCS ->OOH,

agree Medical History, set review dateagree Medical History, set review date Once consented any new info goes automaticallyOnce consented any new info goes automatically Not expected to complete in one go!Not expected to complete in one go! Complete pt wishes and Understanding, DNA CPR, record Complete pt wishes and Understanding, DNA CPR, record

“Just in case” Rx and Equipment as appropriate“Just in case” Rx and Equipment as appropriate Regular review at PHCTRegular review at PHCT Keep updating!Keep updating!

Profile of People who die

UK1900 /

Age at death

46 Top 3 causes

1. Infectious diseases

2. Accident

3. Childbirth

Disability before death Not much

UK 2000

Age at death

78 Top 3 causes

1. Cancer

2. Organ failure

3. Frailty/ dementia

Disability before death Months - many years

Death

High

LowMany years

Function

Death

High

LowMonths or years

Function

Organ failure

6

Acute2

Dementia, frailty and decline

7

Death

High

LowWeeks, months, years

Function

5

Cancer

GP has 20deaths perlist of 2000patients peryear

How to deliver End of Life care for all?

Palliative Care DES (1 of 26!)

1. Put pt on Palliative Care Register Clinical, Pt choice, Surprise Question From Prognostic Indicator Guidance

2. Send OOH form/ePCS within 2w 3. Make Anticipatory Care Plan – as ePCS inc. Preferred Place of Care/death 4. When dying use LCP /locally agreed pathway

Aim- encourage anticipatory care, for all diagnoses

Current ePCS Use – Aug 2010

Health Board Practices % of Total Lothian 74 54% Greater Glasgow & Clyde 42 15%Grampian 24 29% Dumfries and Galloway 10 28% Forth Valley 8 Ayrshire & Arran 5 Lanarkshire 5 Western Isles 2 Orkney 1

171 16% Total summaries 1281

ePCS – Benefits

Natural progression from GSFS & ECS Fits into day to day work of GPs & DNs Aims to identify patients “upstream” ie last 6-12 months, not just last days/weeks Encourages Anticipatory Care Planning Prompts to remind to ask about “difficult” issues

“Just in Case”, DNA CPR, PPoC Shares critical info. on vulnerable patients at important times. OOH & Secondary Care say it transforms care Patients & carers reassured Safer, better experience

Key Information Summary

Proposal / Early development stageAims to replace paper based faxing of

“Special Notes” from GP PracticesMore generic version of ePCSSupport for:

electronic Anticipatory Care Plans (eACP) Long Term Conditions Mental Health

Use existing infrastructure and process

Principles of KIS

Patient consent required to send informationExplicit Consent to view record Review date & consent only mandatory fieldsFlexible

Only send information required

Focused on Patient Wishes and SafetyKIS sent automatically to ECSFurther consultation with patients and

clinicians to be carried out

4 Sections on KIS

Section 1 – “Special Note” Free text field for information (usually to OOH) Review date and consent Patient and Carer details

Section 2 – Current Situation Main Diagnosis and Current Issues ACP / Self Management Plan agreement BP and Oxygen

4 Sections on KIS

Section 3 – Care and Support details Homecare support Incapacity / Guardianship Power of Attorney

Section 4 –Information and Action for OOH / A+E DNACPR Current and Preferred Place of Care

KIS Next Steps

Further consultation plannedDevelopment of specifications and planDiscussions with GP SuppliersDiscussions with End UsersAccelerate to support eACP timescalesLearn from ePCS rollout….Maintain patient focus

Summary

ePCS rollout well underway with increasing use and clinical benefit

Further projects underway on ECS to build upon existing infrastructure and process

Key Information Summary (KIS) expected to make significant difference to patient safety and care

Thank you

Dr Peter KiehlmannGP, Aberdeen & National Clinical Lead Palliative Care eHealth

Dr Libby MorrisGP, Edinburgh & National Clinical Lead Primary Care eHealth

peter.kiehlmann@scotland.gsi.gov.ukLibby.morris@scotland.gsi.gov.uk

http://www.scotland.gov.uk/epcshttp://www.ecs.scot.nhs.uk/epcs.html

ePCS Overview

OOH clinician ePCS display

ePCS update 1. During

consultation

2. Due to prescription

3. Team meeting or other contact

Audit

trail

ECSStore

NHS 24

A&E

Ambulance

TBD…

Practice Admin. Staff

PracticeServer

GP /DN

consultation