Paul Baughan Brodie Paterson Deans Buchanan

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

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?

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?

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?

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

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??

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, 2011. The Kings Fund. Making SDM a reality: no decision about me, without me

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)

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, 2015. Shared decision making: concepts, evidence and practice

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, 2015. Belanger et al SDM in Palliative Care, 2010

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

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)

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.

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……………

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.

Rod: