1. 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 Kiehlmann
GP, Aberdeen & National Clinical Lead Palliative Care eHealth
Dr Libby Morris
GP, Edinburgh & National Clinical Lead Primary Care eHealth 1

2. 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) 2

3. A journey…
This is taken from a folding kayak, starting to paddle the length of Loch Ness
Patients have journeys, and at times they feel unprepared, esp. at transitions eg OOH or between community &Hospital 3

4. The maze of trees
The maze of trees -by Michel Petroni see MAP Foundation
Artist who painted his journey with Hodgkin’s disease.
I'm confused. I'm lost as to which way to turn - who to turn to. Before, everything seemed so clear. Now, which way to turn, which path to follow? Help me, please somebody show me the way. I had an exhibition on then, called Into the light. It was designed as a celebration of my restoration to health - but in fact it marked my relapse. Was the light, into which I might be going, the great celestial light? 4

5. “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

6. 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

7. 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

8. 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

9. Emergency Care Summary –benefits
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…. 9

10. Usage & progress of ECS Pilot 2004, full rollout 2006
Over 5.3 million patient records
1900 patient opt-outs (0.03%)
5.5 million clinical accesses to ECS since launch
Average 195,000 accesses per month
2.17 million ECS accesses were made from Jan – Dec 2009, an increase of 37% from 2008

11. Total Accesses 50000 100000 150000 200000 250000 Jan Feb Mar Apr May
50000
100000
150000
200000
250000
Jan
Feb
Mar
Apr
May
Jun
Jul
Aug
Sept
Oct
Nov
Dec
Month
Accesses
2008
2009

12. 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

13. ePCS Overview OOH clinician ePCS display NHS 24 A&E TBD… GP /DN
Ambulance
TBD…
GP /DN
consultation
ePCS update
1. During consultation
2. Due to prescription
3. Team meeting or other contact
ECS Store
Audit
trail
Practice Admin. Staff

14. 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 )

15. EMIS - Summary Examples of screenshots This is std EMIS Summary page
84 yr man with extensive med Hx
Lung cancer and widespread mets

16. ePCS no diagnosis added yet
This is GSFS Screen – no diagnosis chosen yet

17. Diagnosis agreed with pt & added
The malignancy plus diabetes are added for sending OOH

18. Patient/Carer Wishes
This screen shows pts wishes

19. New ECS build screenshots
Access to PCS Information

20. Base ePCS –view in Adastra

21. Mobile ePCS - Adastra

22. Using ePCS in practice – a continuing process
Does this pt have Palliative Care Needs?
Add to Pall Care Register,
Once Consents to send ePCS ->OOH,
agree Medical History, set review date
Once consented any new info goes automatically
Not expected to complete in one go!
Complete pt wishes and Understanding, DNA CPR, record “Just in case” Rx and Equipment as appropriate
Regular review at PHCT
Keep updating!

23. Profile of People who die
UK1900 /
Age at death 46
Top 3 causes
Infectious diseases
Accident
Childbirth
Disability before death
Not much
UK 2000
Age at death 78
Top 3 causes
Cancer
Organ failure
Frailty/ dementia
Disability before death
Months - many years
100 years ago people what do we die of It used to be. It used to be…now top 3 causes can be grouped as. These are the choices we have today: organ failure HF, lung failure, COPD, liver failure, kidney failure

24. How to deliver End of Life care for all?
Death
High
Low
Months or years
Function
Death
High
Low
Weeks, months, years
Function
Organ failure 6 5
Cancer
Death
High
Low
Many years
Function
GP has 20
deaths per
list of 2000
patients per
year
These are how people die, nowadays
Out of 20 death, 5, 6, or 7. Which group would you? You may wish to be in 2..not realistic option
3 trajectories
Cancer has all the good stories
But focus
Acute 2
Dementia, frailty and decline 7

25. 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

26. Current ePCS Use – Aug 2010 Health Board Practices % of Total
Lothian %
Greater Glasgow & Clyde %
Grampian %
Dumfries and Galloway %
Forth Valley 8
Ayrshire & Arran 5
Lanarkshire 5
Western Isles 2
Orkney 1 %
Total summaries

27. 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
summary

28. Key Information Summary
Proposal / Early development stage
Aims to replace paper based faxing of “Special Notes” from GP Practices
More generic version of ePCS
Support for:
electronic Anticipatory Care Plans (eACP)
Long Term Conditions
Mental Health
Use existing infrastructure and process

29. Principles of KIS Patient consent required to send information
Explicit Consent to view record
Review date & consent only mandatory fields
Flexible
Only send information required
Focused on Patient Wishes and Safety
KIS sent automatically to ECS
Further consultation with patients and clinicians to be carried out

30. 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

31. 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

32. KIS Next Steps Further consultation planned
Development of specifications and plan
Discussions with GP Suppliers
Discussions with End Users
Accelerate to support eACP timescales
Learn from ePCS rollout….
Maintain patient focus

33. 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

34. Thank you Dr Peter Kiehlmann
GP, Aberdeen & National Clinical Lead Palliative Care eHealth
Dr Libby Morris
GP, Edinburgh & National Clinical Lead Primary Care eHealth 35

35. We started our journey on Loch Ness – a wonderful water feature in creation.
This is the man-made Falkirk wheel – where in Scotland we have made water go uphill!
Let’s continue to strive to offer our patients and their families the best possible care – even when it looks difficult – after all in caring for dying patients, we only get one chance! 36

36. ePCS Overview OOH clinician ePCS display NHS 24 A&E TBD… GP /DN
Ambulance
TBD…
GP /DN
consultation
ePCS update
1. During consultation
2. Due to prescription
3. Team meeting or other contact
ECS Store
Audit
trail
Practice Admin. Staff