Hot Topics and Advance Care Planning in a snap shot! Dr Ros Taylor Hospice Director, Hospice of St Francis, Berkhamsted Trustee, Help the Hospices 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 or 1 ‘Are you prepared should one of you melt ?’

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

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

Demographics aaaaaaaaaaghhhhhh

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

Palliative Medicine MANAGING SUFFERING & UNCERTAINTY

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

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

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

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

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

Family Care …..Or is it Family Scare OR

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

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

When we die ? Assisted Suicide Decision making

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

= DECISION POINT = Transforming points

How we die ???

TERROR fear panic death anxiety

Advance Care Planning

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

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 Practical Palliative Care: Mental Capacity 4.10 th July 2012: Hospice of St Francis, Berkhamsted Case Studies in End of Life Care (Advance Care Planning, Assisted Suicide, Psychological 5.Homelessness and End of Life Care Workshop: 6.Case Studies in Non Malignant Palliative Care 7.Resources on MVCN website For more info Or 26 Whats going on...whats coming up across the area

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 Supportive and Palliative Care Groups End of Life Care

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

How we die ? Lots of help…. Guidelines…. Pathways….LCP Web sites Local training….eg 10 th Francis

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

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

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

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

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