Continuity Community and Sharing

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?

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

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

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

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

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

Decision Making Tools NICE Patient Decision Aid Statins: Nov 2014

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

Tools to support Anticipatory Care Planning

Decision Making Tools

Most important tools for SDM