hot topics and advance care planning in a snap shot! dr ros taylor hospice director, hospice of st...

Hot Topics and Advance Care Planning in a snap

shot!Dr Ros Taylor

Hospice Director, Hospice of St Francis, Berkhamsted

Trustee, Help the Hospicesros.taylor@stfrancis.org.uk 07515747440

Sarah RussellDirector 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 Practicessarah.russell12@nhs.net or

sarah.russell@stfrancis.org.uk

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;363:733-42 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 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 ???

TERRORfear

panicdeath anxiety

www.dyingmatters.org

Advance Care Planning

25

Health and social care parallel process of anticipating the advance

care planning needs of the patient/client

Advance Care Planning Theoretical ModelRussell 2012 (in press)

Advance Care PlanningThe Activity

The Advance Care PlanAdvance Advance Lasting PowerStatement Decision Attorney

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. 21st June 2012: Peace Hospice Watford (erees@peacehospice.org.uk) Practical Palliative Care: Mental Capacity Act

4. 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)

5. Homelessness and End of Life Care Workshop:

6. Case Studies in Non Malignant Palliative Care

7. Resources on MVCN websiteFor more info

Sarah.russell@stfrancis.org.uk Or sarah.russell12@nhs.net 26

Whats going on...whats coming up across the area

Created Type Name Downloads

Feb01

Leaflet ACP - Planning for your future care Added: 10/04/2012

Download

Jul01

GuidanceACP - Dementia Added: 10/04/2012

Download

May03

GuidanceACP - Capacity care planning and advanced care planning Added: 10/04/2012

Download

Feb02

GuidanceACP - Concise guidance to good practice Added: 10/04/2012

Download

Dec01

FormsACP - Preferred priorities for care Added: 10/04/2012

Download

Jan01

FormsACP - Preferred priorities for care - easy read Added: 10/04/2012

Download

Jan01

FormsACP -Advance decision to refuse treatment Added: 10/04/2012

Download

Jul25

GuidanceACP A guide to making an advance decision to refuse treatment Added: 10/04/2012

Download

Jul01

GuidanceACP Guide to Advance Statement Dementia Added: 10/04/2012

Download

Dec01

FormsACP Guide to Prefered priorities for care Added: 10/04/2012

Download27

http://pro.mountvernoncancernetwork.nhs.ukSupportive and Palliative Care

GroupsEnd 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• 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 lifeDame 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

MarieCurie

St ALBANSBERKHAMSTED HEMEL

HOSPICE of St FRANCIS BEDS

St FRANCISDocs

Iain Rennie Hospiceat Home

Grove House Hospice at Home

CNS IRHH

CNSMac

CNS StFrancis

NHSDoc

DAYCAREHOSF GROVE HOUSE