1. Paul Baughan
Brodie Paterson
Deans Buchanan

2. Shared Decision Making in PEOLC
Co-authorship in continuous and discontinuous narrative

3. Whose decision is it anyway?
Concepts of SDM and palliative care
Deans Buchanan, Palliative Care Consultant, Tayside
Definitions
Evidence
Practice
“Do I stop the hospital or make a cup of tea?”
Brodie Paterson, Emergency Medicine Consultant, Tayside
What does SDM look like in emergency, discontinuous care?
What do the experiences in ER tell us about how we are doing?
Continuity, community and sharing
Paul Baughan, General Practitioner, Forth Valley
How can you share decisions in community care?
How can you share decisions regarding future possible events?

4. What three words come to mind when you think about sharing?
“It’s good to share”
What three words come to mind when you think about sharing?

5. Narrative
“Stories or narratives are at the centre of human understanding, memory systems, and communication. Memories and information are not just stored; they are storied”
“But patients’ stories will have been disrupted by their illness; this experience of discontinuity, of not feeling settled in the story of their lives exacerbates the illness experience and can affect their attitude and response to treatment.”
Why do people attend doctors?

6. ‘My story is broken, can you help me fix it?’

7. Shared decision making: co-authorship
Who’s is sharing with who?
What is the context for the decision?
Relationship
Shared humanity and common mortality
Knowledge of who and knowledge of what
Reality-perception-reality
What is the story, how is it broken and how will it proceed
Knowledge building is, "the social activity by which communities create new knowledge through a process of collaborative, iterative idea improvement"
If we are to engage, together to journey towards the place we want to get to (in the context of realities available) then there needs to be sharing of information/knowledge.
SDM one approach but who is sharing with who? not my story….
Clinical decision making reframed as a “social activity” function of community??

8. Definitions of SDM
‘a process in which clinicians and patients work together to select tests, treatments, management or support packages, based on clinical evidence and the patient’s informed preferences. It involves the provision of evidence-based information about options, outcomes and uncertainties, together with decision support counselling and a system for recording and implementing patients’ informed preferences.’
Coulter A and Collins A, The Kings Fund. Making SDM a reality: no decision about me, without me

9. History of sharing “Shared Decision Making”
First used in 1972 by Veatch “Models for ethical medicine in a revolutionary age”
Little more in literature until 1992
Shared decision making in the clinical encounter: what does it mean? (or: it takes at least two to tango) Charles et al
Clinical acceptance of concept increasing
Realistic Medicine,
NHS Shared decision making programme
What matters to me?
Choosing wisely
No decision about me, without me
Little evidence that shared decision making is a mainstream clinical activity (Stiggelbout et al 2015)

10. Evidently the way forward?
Ethics not evidence
Veatch first argued SDM from an ethical perspective
Move from “paternal model” to “contractual model”
Increased focus on “autonomy” from Beauchamp and Childress 4 ethical prinicples
Emmanuel & Emmanuel argued SDM was a disguised “informative model” and argued for a “deliberative model”
O’Grady and Jadad renew this with a call to “collaborative model”
Variation
Concept that SDM may help reduce variation in 1990’s by Wennberg
Evidence that variation driven by clinician preferences not evidence based medicine
He differentiated between
Effective decisions – one real option for situation on evidence base
Preference-sensitive decisions – several options available
Concepts of “co-design” emerging in healthcare that view collaborative approach at policy, service and individual level
Stiggelbout et al, Shared decision making: concepts, evidence and practice

11. Value based approaches
2007 – No agreed definition of SDM (Makoul et al)
But elements described for SDM:
Define/explain the problem
Present options
Discuss pros/cons
Assess/understand persons values/preferences (? Story)
Provide doctor knowledge/thoughts
Check understanding
Decision agreement and follow-up
Evidence around SDM improving “affective components of healthcare encounters
Little evidence around “outcomes” being improved by SDM to date
Elwyn et al (BMJ, 2017) Summarise a SDM model as:
Shay et al: A systematic review of SDM and patient outcomes, Belanger et al SDM in Palliative Care, 2010

12. Elwyn et al, A three-talk model for SDM: multistage consultation process. BMJ (2017)

13. SMD and PEOLC Little evidence and literature specific to PEOLC
Evidence around:
Majority of people wish to participate in decision-making
Most do not achieve level of involvement they would wish as decisions delayed and/or alternatives not discussed
Discussions grounded between “hope and acceptance” add extra layer sensitivity
Cognitive Capacity is a issue in palliative care
31% of patient in a SPC IPU did not have capacity
Comparable to general medical ward levels 30-40%
PEOLC decisions have three modes:
Continuous care, real time with capacity/reality to allow SDM
Emergency events with little time/capacity/consciousness for discussion
ACP discussions
Belanger et al SDM in Palliative Care, Palliative Medicine (2010)

14. Co-authorship in PEOLC: the story begins…..?
As I walk through a door into a room to meet someone for the first time – the story begins for me but actually I am entering someone else’s story. I am a character in their story. In my medical role I am there to help mend their story…….in palliative care and particularly in end of life care, it is the completion of the story that is at hand……and it’s echo through legacy.

15. Some info
Distressed person who may not be aware of surroundings….but might be
Family present - distressed
Risk of dying at that moment, in that hour, or that night is high
Professionals: thinking, acting, speaking professional
Approach….
A - Attitudes
B - Behaviour
C - Compassion
D- Dialogue
An abrupt end to a story?
Situation of heart attack…….brain injury from lack of oxygen…..distressed and rolling in bed. ? Pain in chest.
“she’s not salvageable, CCU wouldn’t have her anyway, it’s really just palliation anyway…..”
This is not the story expected……………

16. A new chapter, kind of
Suddenly this door might be a transition again……..to what, with who, where and why?
Regaining a narrative but still more to be written, further “storying” to go. It’s a lot for everyone: move from being “overwhelmed by” to some sense of “authorship” of the next steps. The legacy echoes.

17. Rod: