electronic Palliative Care Summary (ePCS)

1. electronic Palliative Care Summary (ePCS) December 2009 Dr Peter Kiehlmann GP, Aberdeen & National Clinical Lead Palliative Care eHealth peter.kiehlmann@scotland.gsi.gov.uk http://www.scotland.gov.uk/Topics/Health/NHS-Scotland/LivingandDyingWell http://www.ecs.scot.nhs.uk/epcs.html

2. Ann • 43 years • Diagnosed Breast cancer Dec • Intensive investigations • Planned surgery • Cancelled • Rapid deterioration – liver, brain spread • Died after weekend 999 admission Feb

3. … daughter • “I feel that even when my mother was diagnosed with cancer that I was left to deal with it without professional help…” • “…although I argued and screamed at the hospital doctors they would not listen until it was too late….”

4. Improving experience? • No key GP- changes in practice • Communication & coordination in secondary care • Failure to recognise divide between expectations and reality • Impact of investigations • Symptom control • SEA • Bereavement support

5. 3 Steps in Gold Standards Framework 3. Plan 2. Assess + communicate 1. Identify

6. GSFS - Key Tasks - 7 Cs • Cancer Register & Team Meetings, Pt info, Treatment cards, PHR • Key Person, Checklist • Assessment, body chart, SPC etc • Faxed Form • Learning about conditions on patients seen • Practical, emotional, bereavement, National Carer’s Strategy • C7 Care in dying phase C1 Communication C2 Co-ordinator C3 Control of Symptoms C4 Continuity Out of Hours C5 Continued Learning C6 Carer Support

7. Reactivepatient journey:in last months of life • GP and DN ad hoc arrangements & no ACP in place - was PPoC discussed or anticipated? - what is pt/carer understanding of diagnosis /prognosis? • Problems of anxiety & symptom control • OOH Crisis call - no ACPor drugs available in the home • Admitted to and dies in hospital • Was Carer supported before/after loved one’s death? • Did OOH, PHCT or Hospital reflect on care given? • Was use of hospital bed appropriate?

8. GSFS Proactivept journey: in last months of life • On Pall Care Register - reviewed at PHCT meeting (C1) • DS1500 and info given to pt + carer (home pack) (C1, C6) • Regular support, visits phone calls - proactive (C1, C2) • Assessment of symptoms, partnership with SPC - customised care to pt and carer needs (C3) • Carer assessed incl psychosocial needs (C3, C6) • Preferred Place of Care (PPoC) noted & organised (C1, C2) • OOH form sent – care plan & drugs in home (C4) • End of Life pathway/LCP/minimum protocol used (C7) • Pt dies in their preferred place - bereavement support • Staff reflect-SEA, audit gaps improve care, learn (C5, C6)

9. Illness trajectories GP will have 20 pts die every year A Cancer Organ failure Dementia and decline Sudden death B C

10. diagnosis of a progressive or life-limiting illness critical events or significant deterioration during the disease trajectory indicating the need for a change in care and management significant changes in patient or carer ability to ‘cope’ indicating the need for additional support the ‘surprise question’ (clinicians would not be surprised if the patient were to die within the next 12 months) onset of the end of life phase –‘diagnosing dying’ Palliative Care for whom?

11. Place of death Scotland 1981-2006

12. So by 2030…if current trends continue • home deaths will reduce by 42.3% • Less than one in 10 (9.6%) will die at home • increase in institutional deaths of 20.3%.

13. Choice-preferred/actual place of death Higginson I (2003) Priorities for End of Life Care in England Wales and Scotland National Council Place: Home Hospital Hospice Care Home Preference 56% 11% 24% 4% Cancer 25% 47% 17% 12% All causes 20% 56% 4% 20%

14. Symptoms Carer Breakdown They don’t know they can They don’t know they are dying Home situation Patient and family wishes Lack of services Admitted by out of hours doctor What stops people dying at home?Susan Munroe, Marie Curie Cancer Care and Scott Murray, University of Edinburgh, & Scottish Partnership for Palliative Care 2005

15. Living and Dying Well

16. Living and Dying Well • Assessment and Review of palliative and end of life care needs • Planning and delivery of care for patients with palliative and end of life care needs • Communication and Coordination • Education, training and workforce development • Implementation and future developments

18. Board Delivery Plans Triggers and Assessment tools Palliative Care Registers Service Information Directories Community Nursing Care Homes Education champions Anticipatory Rx & Equipment DNA CPR Policy E-Health inc. ePCS 1st 6month review encouraging Activities from Living and Dying Well

19. ECS • New GP Contract • GP not responsible 24/7 • Risks to safe, effective care • Patient info from GP computers -> ECS store twice daily • Medication & Allergies • 99.5% of GP Practices • >5.4 million patients Explicit Consent to view • ‘Read only’ available to… • NHS24, A&E, AMAU, SAS

20. 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

21. 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

22. 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 )

23. EMIS - Summary

24. ePCS no diagnosis added yet

25. Diagnosis agreed with pt & added

26. Patient/Carer Wishes

27. GP View – Dr Brown DalmellingtonePCS on Gpass • Live document • Easily updatable • Can be filled in by any member of team • Out of hours only need notified when initially commenced.

29. New ECS build screenshots Access to PCS Information

30. Base ePCS –view in Adastra

31. Mobile ePCS - Adastra

32. 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!

33. Palliative Care DES (1 of 26!) 1. Put pt on Palliative Care Register • Clinical, Pt choice, Surprise Question • From Prognostic Indicator Guidance 2. Make Anticipatory Care Plan – as ePCS 3. Send OOH form/ePCS within 2w 4. When dying use LCP /locally agreed pathway Aim- encourage anticipatory care, for all diagnoses

34. When will it be available? • Pilots completed Aug 09 • EMIS, Vision – Grampian, Gpass – A&A, Lothian • Issues addressed included • acceptability & ease of use, • improving the consultation & communication, • anticipatory care planning, • NHS Lothian Rollout Sep 09 • Vision more user-friendly late 09 • Evaluation, national rollout late 09 • Link with Board Leads for timings • Palliative Care, eHealth,OOH

35. 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

36. How best to roll out in your Board? Lothian Pall Care/Oncology Discharge letters Benefits to Sec Care EPS /ePCS Meetings planned with key stakeholders eHealth Primary Care Palliative Care OOH Living and Dying Well delivery 2010 Assessment Tools Anticipatory Care Plans Palliative Care DES ongoing Communication Training National Resuscitation Policy – DNA CPR “Public awareness Death, Dying & Bereavement” Questions?