Permission to care
A conversation from an inpatient unit
Andrew Blythe and Wendy Hawksworth
Prologue
Your beliefs become your thoughts,
Your thoughts become your words,
Your words become your actions,
Your actions become your habits,
Your habits become your values,
Your values become your destiny.
In 2010 I had yet to see the truth of Gandhi’s words. I was working with my peers, showcasing a strategy to promote consumer, carer and family engagement in mental health services. We were optimistic and naive in equal measure. We finished speaking, and the audience asked a few polite, sanitised questions. Everyone started to drift away and within minutes there were only two of us left in the empty boardroom, its walls filled with aspirational posters of strategies long since defunct. She held my gaze as she started work at one of end of the table, and I the other, re-packaging the biscuits I’d recycle for the next talk, funneling the sugar into its packet and re-homing stray tea-bags. She introduced herself and her passion: values. Over the next half hour she told me about her work on values-based practice and the systemic changes she thought it might bring. We chatted right through to the car park and on into the spring sunshine, resolving to catch up again. Soon.
Nearly four years later we’ve had those conversations many times, and feel a degree of comfort both with practising and teaching values-based practice; in some ways they are one and the same thing. So what do we think you need to know, encountering this for the first time? First, who we are: I’m Andrew Blythe, a consumer consultant in a public mental health service in Australia, and she’s Wendy Hawksworth, a nurse educator with the same service. Wendy has a Masters degree in Philosophy and Psychiatry, and has written a curriculumfor clinicians working with people experiencing psychosis in inpatient units.
Second, that we’ve practiced values-based practice: for example, in one setting we co-facilitated, with other nurse educators, six groups over six months. We’ve also completed many evaluations, but the comment that sticks in my mind is from a nurse who said to me, at the conclusion of one group, “you’ve given me permission to care”. We’ve given numerous presentations promoting both values-based practice and the curriculum, along with its application. We’ve seen people’s eyes light up in recognition but, wary of group dynamics, have come over afterwards in solidarity to confirm what we’d been speaking about: good care is all about recognising and acting on the importance of values. Yet we’ve also angered people who feel it demeans their professional knowledge, threatened by its implications; vitriolic comments, never delivered to our face, also have a home in our evaluations folder.
So the third thing you need to know is what values-based practice is. There’s no easy to answer to that. We’re mindful that while it appears deceptively simple on the surface, it has a depth that can only be experienced when you start moving down through its layers; we are still surprised, even now, at what we are learning from our practice. At its foundation is four practice skills: awareness, reasoning, knowledge, and communication. We’ve chosen to present a commentary—part memoir, part reflective essay—on what practicing those skills has taught us. To give equal weight to our experiences—unlike in this prologue—we’ve chosen to use two first-person voices: I’ve given Wendy a bold font because she’s tall, and defiant, and absolutely the kind of nurse I’d want looking after me if I ever became unwell again; and I’ve given myself an italic font, partly because it's a good contrast, but also because its gentle lean and organic curves speak of fluidity and movement—the way I’d like to approach values conversations.
Awareness
Awareness was the beginning of all these conversations. Awareness that, after countless years of using the mental health system, and a further four working inside, it still didn’t make sense to me. Awareness that the gaps I once fell through were still not closed, and that no amount of evidence-based, clinically-informed practice was going to provide that safety net; if it were, it would have performed that role by now. Awareness that there was something else that needed to happen, some other layer that needed to be acknowledged, verified, and mandated. So I came to work and tried to look for it, consciously trying to see the inpatient ward anew—a patient once again—every time I stepped through its doors. I kept my identification out of sight, chose not to brandish a security alarm—I'd never really felt threatened by the patients—and smiled, acknowledging all those around me. Amid the sights and sound and smells of this place, I became aware of another language that was being spoken; the language of values.
Awareness for me was simply that something was not right. I’d been a proud mental health nurse for 30 years. I’d enjoyed the work—supporting both patients and colleagues—yet in the last 10 years I’d felt it was out of kilter with who I was, and my view of mental health nursing. There were ways of working that didn’t feel right. A dominant focus on risk had evolved, expressed as mistrust, disbelief and judgements around potential ‘problematic’ behaviour. Education too had become dominated by teaching risk-based assessments—prioritised as core skills for working in mental health—including defensive risk assessment, mental state examination and aggressive behaviour management. In this concrete arena I felt my natural understanding overwhelmed, indoctrinated into a way of thinking that dismissed my thoughts of caring for another person—through understanding and tolerance—as secondary, and not as important.
I struggled to find words to convey the importance of my beliefs within this newly-dominant and dominating discourse. My approach remained flexible and individual, changing according to each new patient interaction. My interactions couldn’t be standardised, generalised and controlled; my evidence base could not relate to this. However, even that seemed insufficient. Nursing ethics told me it was about principles, rules, codes of conduct and standards. But surely ethics was about the person? I struggled to find acceptance, a gap for the tensions I held. Inevitably, without my own words, they were chosen for me. “Wendy, you’re in ‘la-la land’”, “you’re too touchy-feely”, and “you need to get in the real world”.
But surely I was in the real world? A world that didn’t automatically respond to pre-determined judgments about the person, but considered their perspective as vital. Surely this was fundamental to mental health nursing? In my mind, the ‘rightness’ of nursing that cared about people with mental illness had never wavered, but I needed a theory, moreover a language, to substantiate my thoughts. Ironically this didn’t come from within the mental health system but from a serendipitous encounter with a book on a library shelf; my first encounter with values-based practice. It was filled with many new ideas about mental health and working with people: it spoke about a post-modern psychiatry bereft of a dominant knowledge, and about a marrying of science and values, the professional knowledge and the subjective experience. It was not anti-psychiatry but pro-psychiatry, and acknowledged that things needed to change to embrace a more humanistic practice. Moreover, it gave some examples of this way of working. The book was Postpsychiatryby Pat Bracken and Phil Thomas; it was the catalyst for my awareness and the starting point to understand how values worked, especially through the language by which they were expressed.
In this language I could see that words were used as weapons; the lexicon of mental health practice had stockpiled an unenviable arsenal. Although discussions about the ambiguity of their meanings remained silent, their presence boomed across the textual landscape. As a patient, one word could change your trajectory. There were many words to choose from, but the most potent was ‘aggressive’. Having that single word in your case note might mean everyone viewed you with suspicion, with every subsequent shift of staff looking out for evidence of its existence. Some might take it further, perceiving you as less deserving of care, the ‘other’ who could not control their anger, unapproachable and deserving of reproof. The word follows you. And yet, ironically, as evidence of your transgressions accumulate, their context becomes further detached from any common incident or understanding. It might mean that you had hit someone trying to forcibly inject you with something you didn’t understand and didn’t want. But it might also mean that you had waited hours in emergency, unwell, and had shouted because no-one acknowledged you, invalidating you with averted gazes and seemingly essential tasks that didn’t include you. Divorced from its unexamined, values-laden context, rich in circumstance and nuanced emotion—lost forever to the outside observer—‘aggressive’ becomes nothing more than an empty label. But you go on wearing it, whether you want to or not. And in the final twist of that irony, you may not even be aware that this is the weight holding you down, stopping you every time you reach out for care.
I walk into the ward and it hits me. Oh! My! God! The values are everywhere, and suddenly I can see them. In the foyer, large posters tell me “we don’t tolerate anger or aggression in this workplace”, slapping me in the face with their ill-considered assumptions—based on naive interpretations—of the dynamics underpinning violence. I walk through locked doors using my swipe card and see the mediated space, where I can freely roam, privileged by my wellness. Do patients see me and want what I have? That I can choose what I wear, and reach for a jacket, MY jacket, if I feel cold? That I don’t have to ask for my simple pleasures: a steaming cup of tea, a biscuit, and a steady hand to hold them both? I just take what I want, when I want, because these are things I value. But the detail drives deeper. I decide I don’t want black tea, but herbal; I don’t like black tea because it’s too strong, plus I know the herbal tea is good for me. Chamomile calms my mind. Peppermint soothes my stomach. But do the patients see the tiny coloured square stapled to the string of my tea-bag, signalling my choice, poking over the end of a cup, MY cup, my nice china cup that I can store somewhere safe? Do they see how I value my cup by the way it folds into my palms, making my hands warm, the tea infusing the water, just like my values infuse the minutiae of my daily life? Of course they do. What’s changed is that I see it now, looking at myself from the outside in.
But it doesn’t stop there. I see all the values jostling in the room when I face the processes that punctuate patients’ lives. I read handover notes in a patient’s chart and alongside ‘aggressive’ see words like ‘demanding’, ‘non-compliant’, and ‘isolating’. I can see the nurse’s jargon, writing as she’s been taught, aping and aspiring to a medical terminology. The patient’s words—if there are any—do not sit close by; rather, the nurse’s perspective becomes a mono-view, lacquered over with each subsequent shift, a pristine surface impenetrable to the chips of alternative views. And then I sit in the mental health team review, and think that might be the place to bring some of these values out into the open. But my awareness stops me short. Do I feel safe to talk about the words that I see? Patients don’t sit in these meetings; do I have the right to speak on their behalf, without even asking them? Who would I choose to speak for me if I knew I had no choice about who would speak for me? I feel angry, confused, and heavy-hearted. I need to do something with my awareness before it drives me MAD.
Reasoning
When I’m sufficiently aware, I realise that my answers lay in reasoning. I need to put my anger to one side, and the barriers it raises. I need to put my values to one side and take myself out of the equation. I need to reflect back on what brought me to this position and retrace my steps. And I need to start again, this time with reasoning. Reasoning based on the person’s mental illness, and how they in turn may reason their way out of their position, especially if they don’t believe they have a mental illness. Reasoning based on person-centred care principles, which sees the person as a person first and always, and only sometimes as a patient, whether they want to be or not. And reasoning based on the bottom-up processes of making sure that person’s perspective is always the first to be considered.
Values-based practice has given me a mandate to have difficult conversations, via reasoning, that had previously remained unspoken. It has given me an opportunity when talking about patients—when all their options seemed exhausted—to say to staff, “have you considered that it might be a clash of values?” I’ve learnt not to spring this on them unawares, but wait until the quiet moments—that always come—and speak to them privately when the heat of the situation has dissipated. I can show them that I respect the difficulty of the situations that they find themselves in, sometimes getting hit, or swore at, or even invalidated when their concerns in turn have not been taken into account in the bigger picture of service planning. Reasoning has let me create that safe space to speak about the things that get brushed aside, and slowly build on the foundation of hope and compassion I like to think we’re establishing, a space where we can all reflect and regroup, ready to face another day.
Walking into the ward again I find myself confronted by another obvious conflict. Two patients are arguing. I stand back and watch the situation unfold: high-expressed emotion, words and threats of anger, potential personal attacks. Yet as quickly as it starts it settles. Words calm. “OK Bro…I get where you’re coming from. Friends? Friends!” Hugs, and a truce. Only a minute or two has passed, the situation resolved in this hothouse environment. But what has been happening in the background? Security have been called. Alarms have been pressed. Nurses are congregating around the scene. I see the patient being ‘escorted’ down the corridor. I hear his pleas: “Don’t take me to seclusion…” I hear the rationale: “You need some time out!” ‘Rational’ reasoning has been activated, an unstoppable juggernaut. The nurses’ fear leads to pre-conceptions about the patient, which generates automatic pre-determined actions: the sanctity of organisational values, the obsession with order, the need for a ‘productive shift’. I re-consider the truce between the patients and wonder why this was completely overlooked. The pre-judgements are impasses to change, disabling person-centred care. In contrast, considering the person requires flexibility, being responsive to the changes that occur, being tolerant of emotion, and for the whole team to support this understanding.
Reasoning is sometimes the only option I’m left with in a field that struggles to value my experience as a former patient. Without any clinical experience—and certainly no inclination to acquire it—and often only having recourse to my wits, my gut instincts, or the things I’ve seen but struggle to comprehend, reasoning gives me licence to demand a place in the conversation. Regardless of whether my presence provokes false inclusion—“oh, we must get a consumer representative for this”, without any intention of using my perspective beyond tokenistic incorporation—or outright belligerence—“what do we need them for, they don’t do anything!”—reasoning lets me challenge. It lets me listen to all the tired justifications, the moribund discussions, the endless, vacuous appeals to ‘recovery’, to ‘choice’, and to ‘self-determination’—where non of these things exist—and open up the conversation with “I’m curious, but…”. Reasoning lets me see that there is very little reasoning going on around me, but rather appeals and injunctions to competing values that have never been acknowledged. Reasoning lets me say, with confidence, “that’s really interesting. However, what I think we need to consider are the values in this…”
My head is now full of values; I am aware of them in every nook and cranny. But are they only from my perspective? How can I ensure my pre-conceptions, my idea of what should be, does not suffocate others’ values? How do I ensure a space for all values and yet avoid subjective chaos, keeping all the values in play, including the professional, the organisational and the personal, balancing values as they present in action. Do I really know the others’ values? What’s important for them at this time? What’s driving their actions? And if I come back to my role, and want to trumpet myself as a liberated, values-aware nurse I have to ask myself: have I linked in with the patients’ perspective? When I am giving them their depot medication? When I am writing in the chart about their day? When I am visiting them at ‘home’? In short, do I truly know their values are? There are so many questions, and not enough answers; maybe more knowledge will solve the problem?