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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.uk 07515747440 Sarah Russell
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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.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.net or sarah.russell@stfrancis.org.uk ‘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;363:733-42 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 01442 869550 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 inBarbara Monroe CEO St Christophers Hospice
When we die ? Decision making Assisted Suicide
Ask the question Is this patient dying Should we still be actively treating ??
= DECISION POINT = Transforming points
Advance Care Planning Theoretical Model Russell 2012 (in press) Health and social care parallel process of anticipating the advance care planning needs of the patient/client Advance Care Planning The Activity The Advance Care Plan Advance Advance Lasting Power Statement Decision Attorney To Refuse (Welfare) Treatment
Whats going on...whats coming up across the area • GP End of Life Education and Resources Mapping Project in Beds, Herts and Luton identify the needs of individual practices • Community and Care Home End of Life Education Programme in Beds, Herts and Luton (increase in PPD from 51% to 77%) • 21st June 2012: Peace Hospice Watford (erees@peacehospice.org.uk) Practical Palliative Care: Mental Capacity Act • 10th 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) • Homelessness and End of Life Care Workshop: • Case Studies in Non Malignant Palliative Care • Resources on MVCN website For more info Sarah.russell@stfrancis.org.uk Or sarah.russell12@nhs.net
http://pro.mountvernoncancernetwork.nhs.ukSupportive and Palliative CareGroupsEnd of Life Care
dying in thepresence 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 • http://www.endoflifecareforadults.nhs.uk/ • Local training….eg 10th July @St 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 MonroeCEO 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
St ALBANS HEMEL BERKHAMSTED Marie Curie Iain Rennie Hospice at Home Grove House Hospice at Home HOSF DAYCARE GROVE HOUSE CNS IRHH CNS Mac CNS StFrancis St FRANCIS Docs NHS Doc HOSPICE of St FRANCIS BEDS