1. Hot Topics and Advance Care Planning in a snap shot! Dr Ros Taylor Hospice Director, Hospice of St Francis, Berkhamsted Trustee, Help the Hospices ros.taylor@stfrancis.org.ukros.taylor@stfrancis.org.uk 07515747440 Sarah Russell Director of Education and Research Hospice of St Francis, Herts and Mount Vernon Cancer Network End of Life Education Project Lead in Care Homes and GP Practices sarah.russell12@nhs.netsarah.russell12@nhs.net or sarah.russell@stfrancis.org.uk sarah.russell@stfrancis.org.uk 1 ‘Are you prepared should one of you melt ?’

3. UK is the best place in the world to die?? Economist Intelligence Unit 2010

4. But…..NHS Complaints Audit 50% of hospital complaints ………relate to the care of dying

5. Demographics aaaaaaaaaaghhhhhh

6. What do you die of ?? Cancer 25% Long term conditions 25% Fraility 25% 75% predictable deaths 3000 in West Herts

7. Palliative Medicine MANAGING SUFFERING & UNCERTAINTY

8. New England Journal of Medicine Live longer, feel better…. …..if palliative care introduced early !! N Engl J Med 2010;363:733-42 Temel

9. Themes WHERE to die ? WHEN to die? HOW we die ??

10. Place - does it matter ?? ?Home ?Hospice ?Hospital

11. Hospice of St Francis Beds x12 Doctors ! Education Spring Centre – outpatients Triage 01442 869550 Work with the Peace, NHS, Iain Rennie Grove House

12. Canada 80% patients want to die at home Only 50% of their relatives support this Only 5% of these relatives felt they had the skills and knowledge to care Guberman

13. Family Care …..Or is it Family Scare OR

14. Debbie died at home last week…..what made it possible ? Mac Nurse diagnosed ‘terminal phase” Grove House OT …equipment GP who visited…..DNA CPR in house St Francis Hospice Doctor advised by phone Texts and mobile to main carer Just in Case meds for last hours Advance care discussions recorded Informed resilient carer….KEY

15. A good death in the bed you die in Barbara Monroe CEO St Christophers Hospice

16. When we die ? Assisted Suicide Decision making

17. Ask the question Is this patient dying Should we still be actively treating ??

18. = DECISION POINT = Transforming points

19. How we die ???

20. TERROR fear panic death anxiety

22. www.dyingmatters.org

24. Advance Care Planning

25. 25 1. Consideration of preferences & choices 2. Consideration and discussion 3. Discussion and Decision 4. Decision and Documentation 5. Documentation & Implementation 6.Implementation and patient based review 7.Measuring and recording outcomes Health and social care parallel process of anticipating the advance care planning needs of the patient/client Advance Care Planning Theoretical Model Russell 2012 (in press) Advance Care Planning The Activity The Advance Care Plan AdvanceAdvanceLasting Power StatementDecisionAttorney To Refuse(Welfare) Treatment

26. 1.GP End of Life Education and Resources Mapping Project in Beds, Herts and Luton identify the needs of individual practices 2.Community and Care Home End of Life Education Programme in Beds, Herts and Luton (increase in PPD from 51% to 77%) 3.21 st June 2012: Peace Hospice Watford (erees@peacehospice.org.uk) Practical Palliative Care: Mental Capacity Acterees@peacehospice.org.uk 4.10 th July 2012: Hospice of St Francis, Berkhamsted (janet.oates@stfrancis.org.uk) Case Studies in End of Life Care (Advance Care Planning, Assisted Suicide, Psychological Distress)janet.oates@stfrancis.org.uk 5.Homelessness and End of Life Care Workshop: 6.Case Studies in Non Malignant Palliative Care 7.Resources on MVCN website For more info Sarah.russell@stfrancis.org.ukSarah.russell@stfrancis.org.uk Or sarah.russell12@nhs.netsarah.russell12@nhs.net 26 Whats going on...whats coming up across the area

27. CreatedTypeNameDownloads Feb 01 Leaflet ACP - Planning for your future care Added: 10/04/2012 Download Jul 01 Guidance ACP - Dementia Added: 10/04/2012 Download May 03 Guidance ACP - Capacity care planning and advanced care planning Added: 10/04/2012 Download Feb 02 Guidance ACP - Concise guidance to good practice Added: 10/04/2012 Download Dec 01 Forms ACP - Preferred priorities for care Added: 10/04/2012 Download Jan 01 Forms ACP - Preferred priorities for care - easy read Added: 10/04/2012 Download Jan 01 Forms ACP -Advance decision to refuse treatment Added: 10/04/2012 Download Jul 25 Guidance ACP A guide to making an advance decision to refuse treatment Added: 10/04/2012 Download Jul 01 Guidance ACP Guide to Advance Statement Dementia Added: 10/04/2012 Download Dec 01 Forms ACP Guide to Prefered priorities for care Added: 10/04/2012 Download 27 http://pro.mountvernoncancernetwork.nhs.uk http://pro.mountvernoncancernetwork.nhs.uk Supportive and Palliative Care Groups End of Life Care

28. dying in the presence of people…… who know how to drop the professional role mask and relate to others simply and richly as a human being Prof. D. Barnard

29. How we die ? Lots of help…. Guidelines…. Pathways….LCP Web sites http://www.endoflifecareforadults.nhs.uk/ Local training….eg 10 th July @St Francis

32. How can we fund it ? 70% - 90% paid for by the public £550 million 10% - 30% paid for by the NHS £150 million

41. You matter because you are you and you matter untill the last moments of your life Dame Cicely Saunders

43. A good death in the bed you die in…. Barbara Monroe CEO St Christophers

44. Things will improve with…. Communication….?? IT and EPACCS ….sharing decisions re ACP, CPR, JIC…special patient notes etc Co-ordination…..a single point of contact

45. Marie Curie St ALBANS BERKHAMSTED HEMEL HOSPICE of St FRANCIS BEDS St FRANCIS Docs Iain Rennie Hospice at Home Grove House Hospice at Home CNS IRHH CNS Mac CNS StFrancis NHS Doc DAYCAREHOSFGROVE HOUSE