1. Continuity Community and Sharing

2. Continuity, Community and Sharing
Increasing numbers of elderly people living with long term progressive health conditions, frailty, cognitive impairment and with variable support from family, friends and carers.
Will further tests or investigations help?
How safe is this person at home?
If there is a sudden deterioration, what plans are in place?
What additional care might they accept and might be available?

3. What gets in the way?
It would be a whole lot easier if she’d just accept a care package
This is my 3rd visit to Mrs B this week – what am I going to do?
Got to be quick as my GP surgery starts in 15 minutes
I hope her daughter is not here – she is scary
I’ve already admitted 3 people to hospital today – can’t possibly send in another

4. What gets in the way? I wish it was the female doctor visiting today
He had better not talk about that blasted red resuscitation form again
I was hoping my daughter would be here when the doctor arrived
I wonder if he has spoken with my nurse, as I told her everything
Why lunchtime? My soup will be cold by the time I’m finished here

5. Consequences of getting it wrong
Guilt
Suffering
Grief
Family conflict
Erosion of trust
Anxiety
Frustration
Wasted resources
Regret
Failure
Lord, Livingstone and Cooper. University College London ‘A systematic review of barriers and facilitators to and interventions for proxy decision-making by family carers of people with dementia’ International Psychogeriatrics (2015) 27:8

6. Factors to consider Beliefs, Values, Preferences
Consequences of doing nothing
Quality of life
Options available
Burden of treatment
Support available at home
Location of treatment
Timing of decision
Potential benefits and harms
Impact on others
Capacity to decide
Power of attorney

7. Barriers and Facilitators
Health Professional:
- communications skills
- knowledge
- socio demographic factors
- experience
- attitudes
Person:
- medical knowledge
- previous decision making experience
- acceptance of illness
- relationship with family
- understanding of ACP
System:
- private room
- continuity
- time available
- home setting

8. Decision Making Tools
NICE Patient Decision Aid Statins: Nov 2014

9. Decision Aids towards End of Life
Systematic reviews conclude:
Tools most useful when:
there is not one clear option
treatment pathway is highly dependent on individual’s preferences and values
People often require more detailed information about prognosis to make decisions
Care preferences may change as death approaches
Decision aids can improve satisfaction levels and reduce regret

10. Tools to support Anticipatory Care Planning

11. Decision Making Tools

12. Most important tools for SDM