CHESHIRE & MERSEYSIDE PALLIATIVE AND END OF LIFE CLINICAL NETWORK ADVANCE CARE PLANNING FRAMEWORK PROMOTING CONVERSATIONS AND PLANNING YOUR FUTURE CARE

What is ACP? Process for planning for future health and personal care Beliefs and preferences used to guide clinical decision making in future when person unable to make / communicate them Verbal or written Strengthened if written

Who is ACP for? Frail elderly People of any age with chronic progressive and life-limiting conditions People approaching end of life People with multiple co-morbidities and /or at risk of stroke or heart failure People with early cognitive impairment

Why do ACP? 1.Deliver patient centred care Enabled to make decisions regarding their own care Reduces anxiety / Improve QoL / improve chronic disease management People engaged with decisions more satisfied with their care Reduce unwanted / unnecessary treatment

Why do ACP? 2. Caring for an ageing population Over 70 years more likely admitted to hospital with multiple co-morbidities including dementia Complex needs with decision making needed from wide group of specialists Many older people have limited decision making capacity before they die Elderly often do not want life prolonging treatments if no realistic expectation of recovery

What do people want at End Of Life? Symptoms managed Avoid prolongation of dying Achieving a sense of control Relieving burdens placed on families Strengthening relationships Singer et al 1998; Steinhauser et al 2000

In the 21 st century, people are living longer, ageing further and dying slower, with more degenerative disease, than ever before. The medicalization of death has resulted in us dying away from home, in relative isolation, often in a hospital where the first priority is to prevent death. We face an increasingly degenerative end to life with less and less control over our dying process In the 21 st century, people are living longer, ageing further and dying slower, with more degenerative disease, than ever before. The medicalization of death has resulted in us dying away from home, in relative isolation, often in a hospital where the first priority is to prevent death. We face an increasingly degenerative end to life with less and less control over our dying process. GUY BROWN. AUTHOR OF ‘THE LIVING END’ COMPASSION IN DYING TRUSTEE

82% people have strong views about EOL care 48% wrongly believe legal right to decide to make treatment decisions  22% don’t know 9% GPs not heard of ADRT  4% refused to sign ADRT validity/payment  4%have ADRT You Gov / Compassion in Dying Survey 2013

Cheshire & Merseyside Network

12 months to develop ACP framework Clinical lead Palliative Medicine Consultant Scoping / literature review Project management group – Multi-disciplinary - All areas - 3 Patient representatives Clear governance structure Network ACP project

Agree principles and working definitions Make recommendations on utility of identification tools Make recommendations to promote discussions of ACP among wider public Make recommendations regarding development of systems for transfer of information Recommendations of educational models Recommendations on assessment of ACP process Network ACP Project Objectives

Definition of the ACP process

Statement of wishes, beliefs & prefences Statement of wishes, beliefs & preferences Named person to speak on behalf INFORMAL Do Not Attempt Resuscitation Definition of the ACP process

INFORMAL FORMAL Do Not Attempt Resuscitation Clinical Management Plan Definition of the ACP process

Do Not Attempt Resuscitation Clinical Management Plan CLINICAL Statement of wishes, beliefs & preferences Named person to speak on behalf INFORMAL Advance Decision to Refuse Treatment FORMAL Appoint someone to make decisions Definition of the ACP process

Electronic Palliative Care Co-ordination Systems (EPaCCS) Advance Decision to Refuse Treatment

Do Not Attempt Resuscitation Clinical Management Plan CLINICAL ADVANCE CARE PLANNING

ANTICIPATORY CLINICAL PLANNING ADVANCE CARE PLANNING

ANTICIPATORY CLINICAL PLANNING ADVANCE CARE PLANNING BEST INTEREST DECISION

Agree principles and working definitions Make recommendations on utility of identification tools Make recommendations to promote discussions of ACP among wider public Make recommendations regarding development of systems for transfer of information Recommendations of educational models Recommendations on assessment of ACP process Achieved

Way forward Framework and all forms available at: Disseminate network wide Local Implementation plans