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. Screens; future developments Use in practice Outline What is ePCS? Journeys Why is ePCS needed?

4. The maze of trees

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

6. … 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….”

7. 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

8. Improving Experience EXPERIENCE EVIDENCE BASED PRACTICE MODELS of CARE Working in Partnership Improving Outcomes

9. 3 Steps in Gold Standards Framework 1. Identify 2. Assess 3. Plan + communicate

10. GSFS - Key Tasks - 7 Cs C1Communication C2Co-ordinator C3Control of Symptoms C4Continuity Out of Hours C5Continued Learning C6Carer Support 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 C7Care in dying phase

11. Reactive patient 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?

12. GSFS Proactive pt 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)

13. Aims Patient-centred information clearly documented – better, safer experience, in preferred place of care, with fewer crisis admissions Carers - feel supported, informed, involved, acknowledged, empowered Staff – clear instant access to relevant information, increase in confidence, teamwork, communication, job satisfaction “ more time to spend caring for patients & families” A move from Reactive to Anticipatory Care

14. TimescaleBenefits What is ePCS? Why is it needed? Outline Context Journeys

15. World Mortality Rate 100 %

16. 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

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

18. Death High Low Many years Function Death High Low Months or years Function Death High Low Weeks, months, years Function Practice might have 18 patients /full time GP on the supportive and palliative care register No. pts in need of supportive/ palliative care at any point in time, per average GP Organ failureCancer Dementia, frailty and decline

19. Implications for Service Planning and Redesign We need services which meet the typical needs of people on these three different trajectories --- “Well, this certainly scuppers our plan to conquer the universe”

20. Copyright ©2005 BMJ Publishing Group Ltd. Murray SA, Kendall M, Boyd K, Sheikh A. Illness trajectories and palliative care. BMJ. 2005; 330:1007-1011. When is a Palliative Care approach needed?

21. Death High Low Time Function Sentinel events Caring for people with organ failure: 3 stages Gold standards Framework Liverpool Care Pathway Care Plan Stage 1 Physically well Stage 2 Active supportive and palliative care Stage 3 Terminal care

22. physical psychological social spiritual Challenge 3: researching all dimensions

23. Spiritual needs We all have them faced with serious illness Accepted definition used internationally Relates to meaning and purpose of life People may or may not use religious vocabulary Such needs may cause distress Murray SA, Kendall M, Worth A, Boyd K, Benton TF, Clausen H. Exploring the spiritual needs of people dying of lung cancer or heart failure: prospective qualitative interview study. Pall Med 2004;18:39-45

24. Dying is a 4-D activity What’s happening with respect to other dimensions of need? Method Thematically analysed the serial interviews as case studies longitudinally and then cross- sectionally from a number of studies. Identified the presence and characteristics of social, psychological and spiritual needs

25. Murray SA, Kendall M, Grant E, Boyd K, Barclay S, Sheikh A. Patterns of social psychological and spiritual decline towards the end of life in lung cancer J Pain Sympt Man 2007; 34: 393-402 His old friends won’t even take a cup of tea with me now I’ve got cancer” Mrs LR.

26. Lung Cancer - psychological trajectory Four times when distress was common 1. At diagnosis 2. After initial treatment 3. At recurrence or disease progression 4. At terminal stage

27. “living with uncertainty” “It was like a black hole” “It’s much worse the second time round” “You don’t know what is is going to happen to you, fear is the worst thing” “great nurses and departments they are so caring”

28. .

29. Midlothian Care Homes project Routine advance care planning from admission to care homes Increase in DNAR status documented from 8 to 71% in patients who died Reduction of nearly 50% (from 15% to 8%) of residents dying in hospital Interviewed bereaved relatives reported better care Lothian Health Board

30. Palliative Care for whom? 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’

31. Place of death Scotland 1981-2006

32. 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%.

33. 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%

34. What stops people dying at home? Susan Munroe, Marie Curie Cancer Care and Scott Murray, University of Edinburgh, & Scottish Partnership for Palliative Care 2005 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

35. Policy and Strategies etc- Palliative Care in Scotland

36. 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

38. Activities from Living and Dying Well 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 1 st 6month review encouraging

39. TimescaleBenefits What is ePCS? Why is it needed? Outline Context Journeys

40. Why ePCS? Since New GP Contract GPs not responsible 24/7 Many formats sent by GPs - OOH Handwritten Print out of entire Medical Record No consistent format Transcribed by OOH staff Risks to safe, effective patient care

41. 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

42. 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

43. Covers 99%+ of population Used by over 8500 NHS staff 40,000 accesses per week (4.1 million 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

44. ECS –costs & benefits

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

46. 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 )

47. EMIS - Summary

48. ePCS no diagnosis added yet

49. Diagnosis agreed with pt & added

50. Patient/Carer Wishes

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

56. New ECS build screenshots Access to PCS Information

57. Base ePCS –view in Adastra

58. Mobile ePCS - Adastra

59. 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 date agree Medical History, set review date Once consented any new info goes automatically Once 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 “Just in case” Rx and Equipment as appropriate Complete pt wishes and Understanding, DNA CPR, record “Just in case” Rx and Equipment as appropriate Regular review at PHCT Regular review at PHCT Keep updating! Keep updating!

60. TimescaleBenefits What is ePCS? Why is it needed? Outline Context Journeys

61. 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

62. 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 early 10 Evaluation, national rollout 2010 Link with Board Leads for timings Palliative Care, eHealth,OOH

63. 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

64. Questions? 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”

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