A wise friend once said to me ‘When you face uncertainty, look back, and tell yourself the stories of your past, how you have learned and gained from them, and how those you believe in and who believe in you have stood the test of time.’ I was a medical student, suffering from imposter syndrome, and had much to learn about the importance of stories in healthcare, as well as my own life.

Sometime later, as a new PhD graduate, I was questioned about my evolving career: ‘what links your work?’ Although I could give it academic labels, (socio-cultural, interpersonal interactions and relationships, complexity and unintended consequences), it could be summed up in a less fancy way—I was fascinated by the stories people tell and trying to see how to answer the challenge of ‘but that’s not how it works in the real world’ as a riposte to theory and research from frontline clinical practice. I wanted, and still want my work to lead healthcare professionals to seeing things differently, prompting improvement through different thinking and actions.

These experiences came back to me  when someone suggested a helpful exercise for developing my career might be to consider what I would want people to say at my funeral. I now think that if the practitioners think I’m a bit too keen on theory, and the theorists think I’m a bit too pragmatic then I might have the boundary tensions—living in the gap—about right.  I hope what people would say about me come down to two essentials: time for others and an interest in improving the consequences of ‘what happens in the in-betweens’—that is actions and reactions between people and artefacts within the ‘system(s)’ (also known as life!).

This is because I believe the stories we tell about ourselves and others matter. Stories, told and untold, are how we create meaning, make sense and live with uncertainty. Stories create and limit our imagined futures. Arthur Frank (2010) describes humans as being the “sum of perpetually accumulating stories” with each of us embodying an inner library of stories that work with, for and on us:

“To be human is to confront a sequence of questions throughout a life, of which boundaries to respect, which to cross, and how to know the rules of crossing. Stories create boundaries, yet they are also the humans’ companion in living with—though not necessarily within—these boundaries.” (p. 1)

In this way we understand ‘how things work in the real world’. Yet another aspect of being human is to live with uncertainty. The uncertainties described in medical students by Renee Fox (1957) apply to us all. These come from:

• “incomplete or imperfect mastery of available knowledge”
• “Limitations in current medical [or other] knowledge”
• And, perhaps most importantly: “difficulty in distinguishing between personal ignorance or ineptitude and the limitations of present medical [or other] knowledge”(p. 2).

Our stories provide ways to attempt an untangling of which sort of uncertainty we are facing and how to live with it.

Stories are both personal and collective. When I meet people in my professional roles—clinician, researcher, educator—I’m interested in how our stories will interweave. If we engage meaningfully we will also leave each encounter a little changed, hopefully for the better. Yet care needs to be taken; the stories we tell have potential for unravelling if an interaction causes a thread to snag. Most of the people I meet in my professional work don’t have very tidy or certain stories: sometimes that’s because they have a serious illness but mostly it’s because life just isn’t tidy or certain, and none of us know quite how near the beginning, middle or end of each story thread we might be.

When I was growing up my mother would encourage us to take care of our best clothes by turning them inside out, and carefully folding or hanging to avoid snagging. We would see the messiness of the construction and had to resist the temptation of pulling randomly at loose threads. Instead my mother would decide if a loose thread needed attention or not, and if so variously thread these back in, add new stitches or cut away redundant material—according to what was needed to keep the clothes ‘best’.

I find this craft-based metaphor in keeping with my experiences in practice and the ideas I research with the goal of improving what happens in the in-betweens and the workings of the real world. In Palliative Care, patients and those close to them are often trusting us with what is on the inside as much as with the messiness of their stories. When we engage with them, a key question is how do we identify which stories it is helpful to attend to and how. Thoughtlessly pulling threads might do much damage, but ‘doing nothing’ may equally have untoward consequences. An active decision process is needed to maintain the ‘best’. This may require turning things inside out, but should be done so without wilful snagging or unthinking pulling of threads. Instead we should delicately explore what needs to be woven back in, or cut out, to allow each person to live their best possible story despite the questions and boundaries faced.

I was recently asked to collaborate and participate, along with colleagues, in Forms of Care, a study of ‘actively-not-intervening’ as a key feature of palliative care practice.(3). This brought my  ideas of stories and craft metaphors to a professional learning experience through collaborative research work.

As a clinical team we hoped participation in the research would help us develop our reflective and reflexive practices in meaningful ways. I am using reflective here to mean thinking after the event about decisions from different perspectives including what one might repeat or do differently in the future. Reflexive refers to the more intuitive but essential acting on reflections on the spot based on what is happening in my interactions with other people ‘live’. Of course, the former is needed to inform the latter (and vice versa) as our capacity to act and learn depends on past experiences.

Anthropologists can help healthcare teams reclaim a broad perspective on what reflexivity and reflective practice is, at its best, by providing evidence to support how teams draw on a spectrum of creative and timely ways to thoughtfully engage in daily work. If we as healthcare professionals are to to play our roles well (metaphorically dressing for different occasions and purposes so we are well equipped to complete each activity well) we need to practice layering (what is needed for a particular time or place, neither too much or too little) and crafting an overall construction (different items that complement into integrated whole ‘outfits’).

To express that more practically, our purpose in palliative care might be to work alongside someone who asks ‘how long do I have to live?’ when we meet them. There are many possible layers to this question and first we need to understand why it is being asked. Just as when different people look at the weather forecast to decide how to dress it depends on the activity they intend to carry out, so the content and detail of our layered answer will only be helpful if we have unpicked what is underlying and driving this question of time left. Doing our work well is to find a combination of layers that when crafted together will construct a helpful framework to support the person asking – and hence successfully achieving this for them means finding something that matches their individual concerns and priorities.

Participant-collaboration in ethnographic research creates an opportunity for mutual learning through layering the perspectives of healthcare teams and anthropologists to construct new stories. In this way there is potential for local impact as well as wider transferable findings.

When healthcare professionals undertake reflection and seek to be reflexive this is because we want to take care rather than to snag, to be deliberate and informed in weaving together our conscious and active decision-making even if the decision is to simply be alongside or to help hold uncertainties in our therapeutic and collegiate relationships. In a speciality such as palliative care it is rare to find someone who is not genuinely and meaningfully attempting this. Yet, in contrast, mandated ‘official’ reflections commonly demanded by regulators and employers in pre-prescribed formats, for summative purposes, are a negative experience. The pervasive sense that written evidence is required to prove reflection is happening frustrates many. Dissociation from, or devaluing of, the process because of ‘what counts’  to officialdom can paradoxically lead to loss of learning—hiding the clothes at the bottom of the wardrobe when instead loose threads should be woven back in, repaired with new stitches or cut away.

The ethnographic gaze offered to us as part of our collaboration prompted for me a much more constructive approach to taking another look at what is on the inside, personally and professionally. We were encouraged to look at ‘place’ differently and think more deeply about ‘home’ and our role in making it. Place is a key theme within the Forms of Care project, shown to intimately interrelate with changes in condition or personal factors. The idea of  ‘placing’ (4), both people and things, in the sense of situating or contextualising is an ongoing process. This, rather than gatekeeping places as appropriate or not for people to be in, or access, is coming to the fore. The real life experience in palliative care for patients, informal carers and professionals is that needs are relational within places. How place helps or hinders meeting needs varies by a wider range of characteristics than simple fixed physical location. We have been encouraged to recognise that where people live may fall short of cultural ideas of ‘home’ as a ‘familiar, safe place’ when uncertainty, messiness and disorder are defining characteristics of illness. The idea of placing as an ongoing concern gives us a framework to think more carefully about how to provide a sense of safety, order and care in emotional and symbolic realms as well as clinical and practical.

As a result of this we have been strengthened in our ability to think differently and deeply about how to articulate what it is to care and to hold situations where success needs to be defined by something other than cure. I have gained a greater awareness of the nuances and subtle shifts in the choices I make and how the challenges to oneself as well as to others of a fluid, mixed yet integrated identity can be used to deepen reflection and reflexivity. In these situations I am actively and deliberately doing things that equally mean not doing other things but are most certainly not ‘nothing’. It is not ‘just doing’ but choosing to ‘do differently’ not being under-dressed, or even undressed, instead being dressed differently for different goals.

An example of this awareness is making more deliberate and conscious efforts to be explicit with people about my willingness to ‘co-….’—sometimes this is co-llaborate, co-produce, co-construct, or co- something else. I’ve always tried to practice with an emphasis on empowering and respecting autonomy and choice. Often this means discussing the pros and cons of various options with people. I had not previously thought so much about making explicit my approach as well as carrying it out so we are jointly working in the same framework—and if necessary modifying my approach to a framework that better suits others. I have a new inner question—‘what is the pattern this person wants to weave?’ Knowing this will help me offer new threads of thought or action that they might choose to interweave into their current and future stories of health and care.

A further example is expanding the range of conversational approaches I might take—a conscious tentativeness (taking care not to snag threads)—to allow people to explore preferences for care and weigh up difficult choices from the available options by actively reflecting and working reflexively with them—often reframing non-intervening as an active rather than passive approach. I have only anecdotal data (stories!) but it seems to help by emphasising a willingness to listen, seek to understand a person and ultimately convey a sense of care.

Inviting ethnographers into our working lives is enriching our practice. Many threads need to come together to capture the complexity of what we do. We all need critical friends (in research and in practice) and to engage in joint enterprises to develop our thinking and abilities to do so and I’d encourage anyone considering having an ethnographic team to include one to enrich their practice. I’ve gained much from the process to help me in my motivation to be as well-equipped as possible in my approach to therapeutic and collegiate relationships at work.

Before finishing on a personal note, my plea to anthropologists and others in related fields is please do help the frontline practitioners of healthcare reclaim what reflexivity and reflective practice can look like with evidence to support diversity in addressing the mandate to prove that we are thoughtfully engaged in our work. Recapturing the value of creativity and drawing on different paradigms to help us make the familiar unfamiliar as well as helping develop a wider understanding of ‘what counts’ could greatly help us as we seek to use our reflections to expand our individual and collectively capabilities to ensure care when cure is not possible is delivered well. Joint endeavors using these principles can be equally beneficial to practice and research.

Perhaps inevitably, writing a piece like this, raises as many new ideas and questions for me to explore in my own personal narrative as much as it helps me make sense of where I have come from. Some of my learning is perhaps only new to me, after all medicine has long been considered an art as well as a science. Even so, I hope this contribution will be useful even if only by prompting others to consider what works for them metaphorically to develop their practice.

When researching professionalism I was told by a medical student that what it meant was ‘you were not a person anymore’—she perceived the requirement as suppression of all individual identity to become something homogenous and nondescript. Her early experiences of practice were that to stand out in any way was wrong, and that to do more for a patient than senior colleagues thought was appropriate would be deemed as unprofessional as doing less than expected. Boundaries are helpful, and often how we get through the day, but there is great danger in defining unprofessional as anything someone more powerful does not like. I hope stories, scholarship and practice such as mine will challenge these ideas. Healthcare is people not just about people. The in-betweens, stitches if you will, are what will almost always make or break it in the boundary-crossing work needed if we are to construct the best tools (clothes) for ourselves and our patients suitable for each occasion. Respectfully and consciously interweaving our stories may be one way to do so.

Acknowledgements

With thanks to the Forms of Care Team: Simon Cohn, Erica Borgestrom & Annelieke Driessen for their helpful comments on earlier drafts and enthusiastic collaborative engagement with our clinical service during the course of their research.

References

Frank A. (2010). Letting stories breath: a socio=narratology. London, University of Chicago Press, pp. 3, 60,70.

Fox, R.C. (1957). Training for Uncertainty. The Student-Physician, Merton, R.K., Reader, G., and Kendall, P.L., eds., Cambridge, Mass.: Harvard University Press, pp. 207-241.

Cohn S, Borgstrom E & Driessen A. Forms of Care study website https://www.lshtm.ac.uk/research/centres-projects-groups/forms-of-care#welcome [accessed 10.07.2020]

Driessen A, Borgstrom E, Cohn S (2020). 55 Placing death and dying: on the work of making place at the end of life. BMJ Supportive & Palliative Care, 10:A28.