by Daryl Harris, Care Aims Facilitator and Consultant Clinical Neuro Psychologist (December 2022)
“Hope locates itself in the premise that we don’t know what will happen and that in the spaciousness of uncertainty is room to act. When you recognise uncertainty, you recognise that you may be able to influence the outcomes – you alone or you in concert with a few dozen or several million others. Hope is an embrace of the unknown and unknowable, an alternative to the certainty of both optimists and pessimists. Optimists think it will all be fine without our involvement: pessimists take the opposite position; both excuse themselves from acting. It’s the belief that what we do matters even though how and when it may matter, who and what it may impact, are not things that we can know beforehand.” (Solnit (2016), P xii).
The above quote is taken from the introduction to Rebecca Solnit’s book Hope in the Dark: Untold Histories, Wild Possibilities. This blog draws parallels between this quote and some of the key concepts of the Care Aims framework. First, hope is key to every episode of care. This raises the question of hope for what? This is a deeply personal question. One person’s hopes in a set of circumstances will be different to another’s. This in part reflects differences in what is important to each of us. Care Aims advocates that even in the bleakest of circumstances there are grounds for hope. No matter how dark the moment, there are ways for people to express and achieve valued outcomes. This might include finding new ways to achieve, connect with other people, maintain a sense of control or safety, or finding meaning in suffering.
A second overlap is the recognition and embracing of uncertainty as an essential ingredient of effective care. When we find certainty in our own position, we have little reason to listen to others. This can undermine our openness to what matters to the people we are caring for. In essence, we are at risk of assuming we know up-front what is best for them and how to give it to them. This false sense of certainty can be bolstered by being satisfied that we have followed the necessary process, ticked the required boxes, completed the relevant paperwork, or applied the correct clinical protocol. All of these have their place, but this place is secondary to listening to and supporting the personal nature of hope and its underpinning in what matters most to the people we are caring for
Holding uncertainty is a skilled and challenging task. It involves resisting the comfort of false certainty and providing a space to contain the anxiety, fear, and frustration this creates. This requires the compassionate support of those around us. Solnit recognises this when she talks about the task of influencing outcomes as being a collective one that is done in “concert” with other people. This is another key aspect of care aims. The framework defines the role of health workers as enabling people proximal to the patient to manage risks and impacts to wellbeing. The framework highlights how the ability to tolerate uncertainty lays the foundations for exploration of what matters to the person we are trying to help. It also creates the conditions for a shared and sustained enquiry into what might help them to address risks to or impacts on valued outcomes.
In conclusion, we cannot know in advance what matters to a person and the ways they are making sense of their ill health. In turn we cannot prejudge who or what may impact positively or adversely on these. We can seek cover in the certainty of checklists and protocols, or we can focus on listening to and clarifying what matters. The problem with the former is that certainty of process does not equate to meaningfulness of impact. The risk being that we substitute the certainty of the impression of diligent care, for the “spacious uncertainty” of not knowing in advance but unrelenting focus on clarifying what matters most to each person we care for.
“Hope locates itself in the premise that we don’t know what will happen and that in the spaciousness of uncertainty is room to act. When you recognise uncertainty, you recognise that you may be able to influence the outcomes – you alone or you in concert with a few dozen or several million others. Hope is an embrace of the unknown and unknowable, an alternative to the certainty of both optimists and pessimists. Optimists think it will all be fine without our involvement: pessimists take the opposite position; both excuse themselves from acting. It’s the belief that what we do matters even though how and when it may matter, who and what it may impact, are not things that we can know beforehand.” (Solnit (2016), P xii).