1. Confused about Advance Care Planning?
Dr Ben Lobo, Consultant Geriatrician
East Midlands Mental Health Clinical Network 30 March 2017
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2. A Very Brief Introduction
Shared Purpose – Excellence in Dementia Care
Who’s confused?
Advance (not Advanced) Care Planning
Societal and Cultural Changes, National EoL Strategy - Ambitions
Wider issues: Ageing, Frailty Syndromes, Multi-Morbidity
Real World Prognoses for Real People
Population vs Targeted approach
System and Workforce changes
Information Sharing and Coordination of Care
ReSPECT process March 2017
Mortality reviews March 2017
Interactive and skills based approach focussing on practical issues
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4. Benefits of ACP?
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5. Evidence of benefits
Numerous challenges associated with dementia and ACP (Robinson et al, 2013)
But can deliver:
Sense of control and autonomy (O’Kelly et al, 2015)
Less anxiety (Poppe et al, 2013)
Reduced sense of being a burden to others (O’Kelly et al, 2015)
Better adjustment to diagnosis (Brown, 2016)
Dr Juliette Brown

6. Enabler - Recognising Need at Transitions
Acting on Appropriate Opportunities for ACP
Making a will or dealing with the death of spouse / family member
When undertaking a Lasting Power of Attorney for Property and Finance consider LPA Health + Welfare
Care plan/package review for community home care because changing need
Changes of care setting; transfer to acute care or residential care setting, etc.
Changes in family/ carer situation preventing meeting the needs of the person (practical issues, illness, stress, death, etc)
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7. Enabler – Understanding Event Impact
Time of diagnosis of dementia (or other neuro-degenerative condition)
Person presenting with complex medical and social care needs with no / uncertain diagnosis, treatment, support or plan
Medical decisions related to the consequence of dementia such as assisted nutrition / hydration, attempting cardio-pulmonary resuscitation
Deterioration or decline in the persons condition from organ specific (e.g. dialysis) or more general frailty issues (e.g. falls)
Safeguarding concerns / DOLS orders
Other non dementia related treatment or care issues
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8. Enabler - Communication Process and Skills
Preparation
Avoid Surprises
Give the sufficient time, at the right time
Environment private, quiet, calm, interruption free and familiar
Ensure it is person-centred - develop the conversation understand them and what matters to them first
Involve / Support They may, or may not, wish their family carer/member to be present, ensure you ask. Do they need an “advocacy”?
Verbal and Non Verbal
Face the person, make good eye contact, show that you are focused on them
Use short, clear sentences that are free of clinical jargon
Use language and words that are appropriate and familiar to them
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9. Enabler - Communication Process and Skills
Tone of voice, facial expressions, hand gestures, touch etc.
Focus on one question at a time.
Use active listening and be fully attentive to what the person is saying and what their body language and expressions are telling you.
Mirror what they say (repeat back to them) for affirmation. For example; “...so you say having your family around you at the end of your life is the most important thing to you…pause...please tell me more….?”
Additional communication aids: perceptual – hearing aids; interpretation; written word, pictures (e.g. support from experts.
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10. Barriers to ACP? Lack of knowledge about ACP
Unable to acknowledge dementia is often a life-limiting illness.
Difficult of talking about the subject
(multiple factors inc educational / psych / social / religious / cultural)
Waiting for professional to initiate a discussion
Waiting for the patient to initiate discussion
Procrastination Paralysis
Dependence on family for decision making
Believing a lawyer is needed to fill out the forms
Fear of ‘signing my life away’
Fatalism, or acceptance of the ‘will of God’
Fear of not being treated
Fear of the impact on others (emotional, practical, financial)
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11. Barriers to ACP?
The potential for loss of capacity before they can make a plan
Care professionals might lack of confidence in starting discussions due to lack of knowledge of the condition.
Care professionals might not recognise or know how to manage factors that influence the prognosis
Lack of prospective care / case management as the illness progresses
Poor continuity of care (GP and Specialist)
Poor communication, documentation, information sharing and coordination of care
People don’t follow / work with plans
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12. Family and carer stress
Attrition of Multiple (Simple / Daily) Difficulties, inc repeated assessments
Meeting increasing personal needs of the individual ( or couple)
Facing and Making Decisions Health and Care
Having insufficient information about any possible alternatives and their effects
Negative Emotional Effects: stress, guilt, self doubt, loss / bereavement
Conflicts of Interests: patient vs family; family vs family; patient vs system
Financial Impacts
Legal
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13. Summary ACP when done well is a good patient centred process
Introduce ACP and support discussions early
ACP can be a dynamic process with enablers and barriers
Be proactive but also recognise need to react quickly
Beware of “toxic mixtures”
Do not presume or accept that
Patient lacks capacity
Family members know the wishes and preferences of the person with dementia
Recognise and act on transitions and triggers
Success requires good communication, documentation, sharing information and coordination of services
Support and provide information throughout
Loss – Bereavement support
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14. United We Stand, Divided We Fall Aesop 6th C
Finally
High quality care is built of common, basic parts
We are the Champions
We set leadership standards and behaviours
We have a shared purpose, tell the stories to make change happen
United We Stand, Divided We Fall Aesop 6th C
Thank you
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