Difficult discussions at the end of life SCIMP Nov 2010

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

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)

4. The maze of trees

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. 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

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 250000 200000 Accesses 150000 2008 2009 100000 50000 0 Jul Jan Jun Apr Oct Aug Feb Nov Dec Mar May Sept Month

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

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

16. ePCS no diagnosis added yet

17. Diagnosis agreed with pt & added

18. Patient/Carer 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. 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 Profile of People who die

24. Function Function High High Death Death Low Low Months or years Weeks, months, years Organ failure Cancer Function 5 High 6 7 2 Death Low Acute Many years Dementia, frailty and decline How to deliver End of Life care for all? GP has 20 deaths per list of 2000 patients per year

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 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

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

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 peter.kiehlmann@scotland.gsi.gov.uk Libby.morris@scotland.gsi.gov.uk http://www.scotland.gov.uk/epcs http://www.ecs.scot.nhs.uk/epcs.html

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