Not in a Vacuum: System-Level Perspectives on Choices to Live at Risk Christy Simpson NSHEN 2015 Conference

Overview Setting the stage Three vignettes Analysis Wrapping up Note: composites of several different situations and experiences Analysis Values, tensions, and reflections – situate in broader context Wrapping up

Setting the stage Consider for a moment… How does the health system address risk? What examples come to mind of where the system influences risk… In helpful ways? Makes addressing risk more challenging?

Setting the stage System-level – “care for all and care for one” How should we make these types of decisions? What needs to be considered? What values are relevant?

Setting the stage Values embodied in the care we provide, in our decisions and actions Individually, collectively, and as health organizations/the health system Shaped by social norms, organizational culture, professional and personal perspectives

Setting the stage Also applies to how we understand “living at risk” Tend to focus more on risk at an individual (patient and health care provider) level Need to recognize that health organizations and the health system also structures where, when and how we focus on risk(s) Sufficient attention and reflection on these aspects? Implications?

Vignettes…

Vignette #1 After a swallowing assessment six months ago, Rick has been on a diet of thickened liquids due to being at a high risk of aspirating and choking Last week, Rick indicated that he wants to go back to solid food His care team is very concerned about this choice and many have expressed their discomfort about following Rick’s wishes; some try to avoid being the one who is helping him eat

Vignette #1 (cont’d) Familiar case? Pretty typical – should we support patients in making these types of risky decisions… However, a few more details come to light…

Vignette #1 (cont’d) There used to be three choices of thickened liquids that Rick could select. He now only has one choice, and this is the one that Rick says, “has the least flavour and is pretty gross.” “If this is all I can get, I’d rather have solid food.”

Vignette #1 (cont’d) A committee tasked with reducing health care costs recently made the decision to stop using/ordering the two more expensive thickened liquids. Of note: No patients or persons from the continuing care sector are part of this committee Data about who (groups of patients) were using the different thickened liquids and to what degree was not included as part of the process

Consider… Selected, relevant values Sustainability/stewardship How should we contain costs in light of supporting person-centred care? Justice (fairness) Differential impact of decision on short versus long term patients Accountability For how decision is made as well as the outcomes (intended or not)

Consider… Importance of reflecting on our decision-making processes Who needs to be at the table? Why? In what sorts of policy and organizational decisions should patients be involved? What’s at risk if patients and other key stakeholders are not included? What’s at risk if patients and other key stakeholders are included?

Vignette #2 What? She’s back in hospital again? We only sent her home a week ago. “I told you. I knew it wasn’t going to work. Too risky. We should have just told Robyn and her family that she had to go to a nursing home and be done with it.” “Great – another failed discharge. This isn’t going to help our numbers at all.”

Consider… Influence of system pressures and what we measure Bed management “Risky discharges” What constitutes a “failed discharge”? Do we look closely enough at these? Especially from a risk perspective? Who decides if it is a failure? On what basis? What would the patient say?

Consider… Several values underpin these discussions “Do no harm” – beneficence For each patient For all patients Person-centred care Seeing the patient as a person – relationships, home env’t Risks related to staying in hospital, going home and/or long term care Trust

Vignette #2 (cont’d) “Why did we let the other care team talk us into discharging Robyn home? “Robyn certainly didn’t want to hear my thoughts about what would be best for her or that I had a different opinion from the other health care team.”

Consider… “Sowing the seeds of doubt” How often, when we have concerns about a decision that is being made, do we assume that the discussion with the patient and/or between the involved health care teams can’t have happened properly? Need to acknowledge that this is being driven by our own values and assumptions (for better or for worse)

Consider… Need to name and address these issues Patient and inter/intra-team conflict Different perceptions of risk Part of our health care system Relative to goals and type of care Role of policy and clinical practice guidelines

Vignette #3 Sharon is on a mental health unit, waiting for placement with a group home At a team meeting, the following comments are made: “This isn’t the place for her. She’s deteriorating, picking up poor behaviours from some of the other patients.” “Why can’t they see that Sharon is more than what’s on the form? It doesn’t convey who she is actually is – just the risks.”

Consider… “Just because she’s here doesn’t mean she’s safe.” Expanded appreciation of what is at risk - more than just physical safety Intersections with other organizations/groups who may have conflicting views of what is risky (or safe) Challenges of trust, advocacy, and priorities across the broader system

Consider… “Sharon’s more than the form.” Forms and documentation - what do we record? Why? If asked to list the risks for a patient and what strategies or approaches have been put in place…

Consider… Forms and documentation Who decided what is on the form? Are we placing the emphasis in the right places? Where is the patient’s voice in this? Is it only physical risks? What about risks to self-hood? Relationships of meaning? What values are we privileging by the ways in which we construct and share this information?

Consider… If we don’t get the forms “as right as possible”… May encourage actions that undermine integrity Such as, health care providers downplaying or fudging the answers a bit on a form to get the right score or picture of the patient (able to go home, suitable for placement…) Harder to facilitate appropriate alignment and use of health resources to support person-centred care

Wrapping up… Fundamentally, we need to think sensitively and carefully about “risky decisions” at the systems level too – underlying concern is that, otherwise, we can create, exacerbate and focus on the vulnerability of patients and then take advantage of it.

Thank you also to Marika Warren for several helpful discussions on this topic.