Wandering the Wards

Front matter

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< & FF EEN o ; WANDERING ® the WARDS « e Q,

An Ethnography of Hospital Care ee and its Consequences L T for People Living with Dementia

Contents

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Preface Acknowledgements

Recognition and attribution of dementia at the bedside

Preface

This book is the culmination of the five years we have spent wandering these wards, exploring the everyday organisation and delivery of work within them, to examine the experiences and consequences for the significant population of people living with dementia admitted within them. Our research could not have happened without the support of the hospital staff, the nurses, healthcare assistants, auxiliary and administrative staff, therapists and medical teams who were so warm, open and receptive in welcoming two strangers into their workplace to observe, shadow, and essentially to follow them around with a note pad and pen. Nor would it have been possible without the many people living with dementia, their families and friends who were willing to let us observe their care, to join them at the bedside, to speak to us and share their deeply personal stories and experiences.

Our research is publicly funded and has been supported by grants from the National Institute of Health Research Health Services and Delivery Research (NIHR HS&DR) funding programme. They have funded Katie as Principal Investigator, and Andy as co-applicant and researcher across two projects since 2015, and continue to fund and support our research. The work presented in this book is drawn largely from our experiences during our first ethnography, exploring ‘The management of refusal of food, drink and medications by people with dementia admitted to hospital with an acute condition’ (NIHR HS&DR project number 13/10/80) but also draws on elements of our second ethnography ‘Understanding how to facilitate continence for people living with dementia in acute hospital settings: raising awareness and improving care’ (NIHR HS&DR project number 15/136/67). We were wandering the wards for this second study during the writing of this book and this enabled us to deepen, test, and refine our analysis. This funding has given us the opportunity to spend 330 days within wards in 8 hospitals across England and Wales, almost a full calendar year, exploring and understanding the social processes and the cultures of care that inform the organisation and delivery of everyday bedside care that we present in this book.

The start of our involvement

Our own awareness of the impacts and experiences of people living with dementia within our wards happened by chance. We were invited to join a research development meeting with clinicians from the medical and surgical teams within

Preface ix a large regional teaching hospital to discuss what they described as the ‘problem’ of dementia in their wards. The room was full and there was an animated debate about the best solution; the focus was on finding a potential ‘off the shelf” intervention they could use and evaluate in their acute wards. We repeated a number of times: could they tell us what the key problem was? In the midst of intense debate, no one seemed to be listening and so tuning out we turned to our neighbour, who was the only dementia specialist nurse within this 1000-bed hospital. We still didn’t understand the issue and as we talked it became clear to her that we assumed she worked within one 30-bed specialist ward caring for people living with dementia, who had been admitted because they required specialist support and could no longer be cared for in the community. She viewed us with a mixture of exasperation, frustration, and weariness, and explained that no, almost 50% of the patients across the acute wards in this hospital were also living with dementia. This was the pivot point where the focus for our research programme became clear.

Involving carers and people living with dementia

At this very early development stage we relied on carers, who confirmed that the acute setting was an important site where research was needed, and where care quality was a pressing issue having a significant impact on their partners living with dementia. We were introduced to a local group of carers who kindly invited us to meet up with them. Over lots of tea and cake one afternoon, we asked them if hospital care was an issue for them. From our notes at the time, they all described the hospital as ‘the worst experience’, ‘scary’, ‘horrendous’, and ‘a very bad time’. Key factors for them included feelings of staff not listening to them, not respecting their experience or expertise in looking after their partner who was living with dementia and not considering their specific needs. They believed their partner was typically in worse health, with their condition significantly deteriorating following an admission. They reported having lots of work to do to help their partners recover from a stay on an acute ward, regaining skills and independence (particularly the loss of mobility and walking, continence, and sleeping patterns) that had been lost during their admission. They reported that in their experience, people living with dementia were expected to conform and to behave ‘normally’ within wards. They described to us how failure to conform often resulted in further sanctions, including security guards being called and stationed at a person’s bedside. This was the start of a longer-term collaboration with this group and a large network of carers, which have become more enduring friendships.

Throughout our ethnography, at every stage we have involved carers and people living with dementia in the priority setting, development, planning, analysis, and governance of our research. They have also been closely involved in our ongoing efforts to use these findings to develop and test interventions to support acute wards and improve care. We have involved them formally as co-applicants in our funding applications, and as part of our research governance through membership of our research management group, carers’ steering group, and external oversight committee.

x Preface

Throughout this time, we have also carried out a series of public consultation events with people living with dementia and family carers, which is ongoing. During these events, we discovered that our findings strongly resonated. This work represents a form of member checking or respondent validation and their recognition of the ward cultures we present and examine, support the reliability and validity of our fieldwork and analysis.

Systematic inequalities

When we began exploring what was already known about hospital care we were immediately struck by the significant number of government reports, audits, and enquiries published over the last decade that together establish a consistent experience. This patient population receive poor care in hospital, to the extent that currently every person living with dementia (in England) will receive poor care at some point during their hospital admission (Care Quality Commission 2014). Importantly, this provided insights into these cultures of care and tells us that there is something deeply systematic about the inequalities people living with dementia experience, as we will explore within this book.

This growing body of work also suggests that these inequalities are an intractable issue. The poor outcomes and experiences of this population are continually being reported, yet the systems that produce them seem incredibly resistant to change. We see this as deeply connected to the invisibility of both people living with dementia and of frontline staff within acute hospital wards. There is a clear disconnect that exists between the policy directives that recognise the need for change, innovation, and improvement, and the enduring stasis and durability of these ward cultures. It is surprising that, despite the continuous transformations observable more widely within biomedicine, and the many interventions, techniques, and technologies, entering the contemporary hospital, there has been little impact on improving the organisation and delivery of timetabled care at the bedside.

In the context of the increasing demands on hospital services and their changing in-patient population, the acute setting and the field of nursing has typically reacted to reports and recommendations of the need for improving care quality, with a recognition of the need for change and innovation. Despite this, there are still widespread failures in recognising and supporting frontline staff. One of our goals was to provide a detailed understanding of ward cultures and its consequences that could provide the evidence base to inform such improvements and to ensure they support both patients and staff.

During every ward rotation we observed staff, often working in poor conditions, where understaffing was expected. Here they talked of being in a ‘war zone’, of physical and emotional exhaustion and burnout, of coming close to fainting from the heat and the pace of work, of crying in the sluice rooms. At the same time, staff would often go the extra mile for their patients, taking shorter breaks or staying after the end of their shift to support colleagues with a patient that needed urgent care. However, organisational cultures seemed disconnected from this and appeared unwilling or unable to recognise or value this work. We

Preface xi feel that the origins of this disconnect can be traced back to the earlier periods of the modern hospital.

Our ethnographic approach

This context informed our ethnographic focus on examining cultures of care within acute wards. Hospitals, particularly Euro-American hospitals and wards, appear to have received relatively little attention from contemporary ethnographers (van der Geest and Finkler 2004, Long et al. 2008). For our inspiration, we looked further back, to the pioneering institutional ethnographies that focussed on the hospital and the work of the ward: to Julius Roth (1963), Roth and Elizabeth Eddy (1967), Rose Laub Coser (1962), Alfred Stanton and Morris Schwartz (1954), Isabel Menzies Lyth ([1959] 1988), and, to a lesser extent, Willian Caudill (1958), Renee Fox (1959) and Eviater Zerubavel (1979). We understand that no hospital is the same as another, nor any ward in a given hospital quite the same as its neighbour. Yet while there was significant variation across time, specialism, location, and population, we felt a recognition of and connection to our experiences and analysis of ward life powerfully within all of these ethnographies that transcended geographical place and time period.

Involving these wards and sites

Throughout this monograph we will often refer to ‘these wards’; in doing so, we are referencing an amalgamation of the cultures and practices viewed within and across these eight hospitals in England and Wales. Within this book we focus on our first period of fieldwork, exploring ten wards in the first five hospitals that allowed us to observe the everyday work within them. We also partially draw on the second phase of fieldwork carried out in six wards within three further hospitals during the writing of the book. Given that one of our goals was to provide a detailed understanding of care and its consequences that could provide the evidence base to inform improvements, we felt a strategy of examining care across a range of institutions would enhance the potential for our findings to be recognised as credible and valid by public policy, hospital institutions, and frontline staff. Our ethnographic fieldwork and analysis were informed by the analytic tradition of grounded theory (Glaser and Strauss 1967), which supported our focus on examining the phenomena of ‘dementia’ and the care of people living with dementia, rather than a broad and unfocussed description of the setting itself (Charmaz 2014). The aim of our approach was to uncover the relevant conditions of people with dementia within the acute hospital setting and to understand how both they and the wide range of social actors within these settings (nurses, healthcare assistants, and the large number of hospital staff and specialisms they will come into contact with during their admission) actively shape the social world of these wards. Ethnography allows us to examine these elements, but also, importantly, the interplay between them. Our emphasis was on the organisational features of these wards and the interactional work of everyday bedside care, with the aim to access the unspoken and tacitly understood, and importantly paying xii Preface attention to communication that is embodied, which may be particularly important in understanding the experiences of people living with dementia within these wards (Kontos 2012).

We utilised the constant comparative method whereby fieldwork, theoretical sampling, and analysis were interrelated (Glaser and Strauss 1967, Corbin and Strauss 1990) and carried out concurrently (Green 1998, Suddaby 2006). Preliminary analysis of fieldwork within individual sites informed the focus of later stages of sampling, fieldwork, and analysis. The flexible nature of this approach was important, because we felt it allowed us to increase the ‘analytic incisiveness’ (Charmaz and Mitchell 2001:160) of our ethnography.

These hospitals were purposefully selected through theoretical sampling to represent a range of hospitals types, geographies (each served a wider region covering both urban and rural populations), socio-economic catchment areas, and the interventions put into place by institutions at an organisational level to support the care of people living with dementia. We also wanted to capture the ‘average’ and the everyday, and each hospital in our study was selected in part because they were unremarkable. We were careful to select institutions that had not been identified by the independent regulator as failing or in special measures’.

Within each of the first five hospitals, we focused on two types of acute wards that can be found within every hospital and known to admit large numbers of people living with dementia: five trauma and orthopaedic wards, and five medical assessment units. Trauma and orthopaedic wards are where patients are transferred, typically from an admission via accident and emergency (A&E), with a fracture. The largest contingent of patients within these wards are older people who have in layman’s term broken their hip, usually following what was always described as ‘a fall’, or in medical terms, had sustained a neck of femur fracture. These wards were sometimes referred to as ‘the NoF ward’ due to this overwhelmingly being the cause of admission. While a common acute admitting condition for older people and people living with dementia, these types of fractures typically require surgical intervention, a significant period of admission within the ward, including considerable time for post-operative rehabilitation.

Assessment units go by a variety of names, but most commonly are given the title of the Medical Assessment Unit, or ‘MAU’. These units are a key site for unscheduled admissions within these hospitals. The patient caseload within MAU represents a range of demographics and admitting conditions and it is where people with medical conditions are admitted by referral from their GP, from long-term community care settings, or following triage from the emergency department. Patients are admitted to these units for the assessment and stabilisation of their medical conditions and are then discharged or transferred within the hospital to a specialist acute service. Unlike trauma and orthopaedic wards, where admissions can be measured in weeks and sometimes (although less common) months, an admission to MAU typically lasts anywhere from between 12 to 48 hours, although we observed far longer admissions for people living with dementia within this setting (in some cases lasting up to 10 days). This service model is intended to facilitate patient ‘flow’ and improve the speed of

Preface xiii patient assessment, and their subsequent transfer or discharge. They are typically very noisy, with more equipment and machinery and a large number of staff. As well as the staff based within the unit, there are large numbers of medical teams and specialisms from across the hospital entering this setting to assess specific patients throughout the day and night. Staff typically recognise and characterise MAU as ‘chaotic’, with working on one seen as a badge of honour, second only to the emergency department (in the UK, the Accident and Emergency Unit (A&E) itself). These units are not areas designed or conducive to supporting the needs of any particular patient group, which means they can be particularly disorientating for the large number of people living with dementia admitted to them. Prior to fieldwork, our network of carers and their partners living with dementia all told us they had poor experiences of this setting and found it a ‘frightening’ place.

In total, during our first phase of fieldwork within 5 hospitals (which represents our first funded ethnography), we spent 155 days within these wards, observing everyday cultures of care and the ways in which care was organised and delivered at the bedside for people living with dementia. We focussed on the work of nurses and healthcare assistants, following ward teams from handover and shadowing individuals as they worked at the bedside. We watched these teams throughout the day, at evenings, through night shifts and across weekends. We also followed other members of staff who entered these wards sporadically, those arriving to conduct certain tasks or see specific patients. During this time, we carried out 486 ethnographic interviews with staff, carers, and, importantly, patients living with dementia themselves. A further cohort of people living with dementia and their families were followed during and after their admission.

We were still wandering these wards (within three further hospitals) at the time of writing (this began in October 2018 and continued until October 2019) and we also draw on these data in this book. We do not quote directly from the data collected from these wards in this book, but the phenomena we describe here were repeated and reinforced across the later wards. While looking at other elements of everyday care we observed the same patterns of behaviour from both people living with dementia and the staff caring for them, the drive to support them and the organisational obstacles that prevent this, and echoes of the deeply engrained ward cultures which exist from site to site. While collecting these data we also increasingly utilised visual and participatory methods to involve a wider group of people living with dementia, their carers and their families, input from which we directly draw on within this book.

Ethnography by its very nature is incomplete and yet we do not have the space to do justice to all our data and analysis here. Given the significant and growing body of literature within the fields of social psychology, nursing, sociology, and anthropology focussing on the lived experience of people living with dementia and their carers and family members, within this book, we largely draw on our observational data within the over 600,000 words of fieldnotes, taken between 2015 and 2017, with a smaller number taken from the 2018-2019 fieldnotes (700,000 words) in order to examine ward cultures, which remain relatively underexamined but critical in informing the care of people living with dementia.

xiv Preface The ethics of entering these wards

Conducting any type of research within hospital settings in the UK requires NHS ethics committee screening, governance, and permissions, an important and necessary process, but which is a source of ‘mock terror’ in the corridors of universities across the UK. It was only once we had secured funding and started to uncover and identify the many stages of these (rightly) rigorous and complex governance processes that the barriers to ethnographic research (and research more widely) within hospital wards started to become clear to us and to become a pressing concern.

We had been through these processes and obtained NHS ethics committee approvals for previous ethnographic research examining out-patient clinics. However, these studies had examined highly specialised fields of medicine and healthcare (e.g. clinical genetics services). This meant that they constituted naturally bounded and distinct entities, containing within them a limited and known group of participants consisting of small clinical teams, out-patients and their families (these clinics also had a narrow focus on diagnosing and classifying a range of rare familial and de-novo genetic conditions (Featherstone et al. 2005, 2006)). In contrast, we could see there were some particular challenges in developing rigorous procedures for our hospital ethnography. We could foresee that asking for permission to observe everyday care in the busy and high-pressured context of hospital wards, where the teams and individuals entering them cannot be predicted or controlled, and involving people living with dementia during their acute hospital admission, would all require sensitive and nuanced approaches. While we found our NHS ethics committee supportive with regards to the study in itself, it took two hearings with the committee, and significant modifications to the protocol and the study documentation, before the committee was satisfied the study posed no risk for patients and staff, a process that took close to six months.

What we learnt quickly was that what made complete sense on paper, and in discussion with a research committee, in a pleasant air-conditioned conference room in a non-descript business hotel at a motorway junction, did not translate to the constant motion of an acute ward. In particular, obtaining written consent prior to all observations was not very practical within the fast pace of these wards. Staff were always busy, and patients could be sleeping or too unwell to approach at the start of a shift. Following initial fieldwork within two wards at our first hospital, we returned to the committee to ask for amendments to the study protocol. A system of obtaining initial verbal consent was agreed to minimise interruptions to staff at busy points in their shifts, such as handovers at the start of shifts, with formal written consent taken later for those directly observed or spoken to during the study. This modification was also supported by the ward teams, who said that looking back, they appreciated being able to gain a clearer understanding of the unfamiliar research method and the type of data we were collecting once fieldwork had started.

We also found that the use of the formal detailed consent forms required and approved by the committee were often difficult for people living with dementia during their admission. This is not surprising given that they were all admitted for

Preface xv a suspected acute condition such as an infection within MAU, or a fracture, and most likely a hip replacement within the Trauma and Orthopaedics (T&O) wards. With the support of the NHS ethics committee, we agreed that all patients would be informed of the study and the research at the start of and during all periods of observations, when we would also emphasise that they were able to choose to opt out then or at any point during the observations. We used a form of process consent (Dewing 2007) and spoke to each individual patient in the area of observation throughout the periods of observation to regularly re-introduce ourselves in order to familiarise and remind them of who we were, our role, the study and what it involved, and to request their consent verbally throughout the periods of observation. The committee agreed that patients within the ward would only be required to sign a consent form if they were approached to take part in interviews or if the researcher closely observed the care they received at their bedside.

We took this time obtaining and refining our approaches to consent as an opportunity to develop our understandings of and impacts of dementia by attending undergraduate nursing modules on dementia care, shadowing clinical staff, including an experienced dementia care specialist nurse, and became ‘dementia friends’ by completing the online UK Alzheimer’s Society awareness course. We also spent time with people living with dementia, carers, and families, through our local networks. We wanted to ensure we reflected the right approaches in being with and supporting people living with dementia so that they could make decisions about taking part in the research and were given opportunities to express and share their experiences.

We are grateful to the members of NHS Research Ethics Service, and in particular the members of the Wales Research Ethics Committee, not only for approving our studies but also for their advice and critique of our study designs and approaches to involvement. Their knowledge of the wards was invaluable in shaping our project into something that was both workable within the ward setting, protecting the participants within it, and for meeting the requirements of the Mental Capacity Act 2005 (Section 31). With their help and feedback our initial study was approved in June 2015 (15/WA/0191) and subsequently accepted by NHS Research Permissions Wales (and subsequently the newly formed Health Research Authority), with whom recruitment for our studies has been managed and recorded via their Central Portfolio Management System. Amendments were approved for our observations in December 2015, to improve our consent and recruitment processes to better fit the realities of life within these wards. Approval for our ongoing second study was again granted by members of the Wales Research Ethics Committee in April 2018 (18/WA/0033), and accepted by the Health Research Authority and Health and Care Research Wales in September 2018.

All sites, individuals, and data collected were anonymised and sorted in line with the Data Protection Act 1998, and NHS England Data Protection Policy 2014. In order to protect the anonymity of our participants, all patients directly presented within this book have been given a pseudonym, and any recognisable features of individuals, wards, or sites have been altered or removed. Staff are referred to only by their role or job title, and the generic term for each role is used xvi Preface to prevent revealing participating individuals, wards, and hospitals. This reflects our recording practices to ensure participant anonymity (patients and staff) within our fieldnotes, which was to refer to patients by their bed number and staff by their role. Although this reflects a familiar practice within these wards, we are aware that it also has the potential to be dehumanising and desensitising.

Similarly, when we discuss ‘these wards’, it is an amalgamation. This amalgamation was straightforward in many ways: with only minor exceptions, the overall cultures of these wards, and the organisation and delivery of care within them, were surprisingly similar and comparable. These hospitals have also been anonymised. We considered replicating the strategy of Julius Roth, and the ethnographies of the 1950s and 1960s, who in part inspired our work and this book, and giving each site a pseudonym, but have settled instead on giving each site a simple alphabetic code to maintain the anonymity of these wards and the participants who supported our research.

Beyond protecting anonymity, the safety of all participants within our ethnography was a key priority for us. Before undertaking this study, the ethics of observing care, and the ethics of reporting (where necessary) what we observed, was frequently discussed with staff in the hospital sites and with our carers’ steering group. In meetings with the NHS REC that approved our study it was clarified that although we technically did not have a clinical duty of care (both researchers were academics without clinical qualifications or professional affiliations), we would still be bound to safeguard any patient participants observed over the course of our ethnography.

Before starting our ethnography, we undertook (and have since updated) Good Clinical Practice certification, Adult Safeguarding certification, and Protection of Vulnerable Adults (POVA) training. We were made aware of safeguarding and whistleblowing procedures at each site and had a named member of staff (the site principal investigator or research nurse on shift) to contact if malpractice or behaviour that put vulnerable people at risk was observed.

Over the course of our ethnography, as will be detailed in the course of this book, we saw many aspects of everyday practice that concerned us, but were both viewed and described as normal practice within these wards and were not considered problematic. The examples we present throughout this book were not isolated and we have taken care not to include any atypical or unusual examples from our data. Each formed part of the systemic and established everyday routine practice within every ward at each hospital site. While some of the phenomena presented and discussed in this book may be upsetting, over the course of our fieldwork we did not witness malicious behaviour or isolated incidents of deviance that placed a patient at risk. Instead, we observed how the everyday organisation and delivery of bedside care itself often has the potential to place individual and cohorts of patients at risk, but that this is part of the routine and established cultures of these hospitals and reflected the everyday care practices within these wards. At no point did we feel that any individual member of staff or ward team was acting in a way that required escalation or whistleblowing. Had we observed behaviour that we felt breached guidelines, or deliberately placed a patient in danger, we would have immediately ceased observations and

Preface xvii reported the incident in line with site procedures. Throughout our time within the wards, and during our research, we regularly presented emerging finding and our analysis to our wider research team, steering groups and collaborators, including nurses, allied health professionals, clinicians, and NHS Trust leads. Although it was agreed that the care observed could be detrimental or distressing to a person living with dementia, it was also routine and recognisable to them as the everyday practices of staff within acute wards.

We did, however, question staff about their practises and frequently intervened to support people living with dementia and their families and carers where we felt it was necessary to protect and support the comfort of the patient. People living with dementia would tell us frequently that they wanted to go to the bathroom or that they were in pain, or shared their concerns (about their home, their family or their pets, or how to pay for their care). In response to these disclosures, we (with permission from the patient) would inform ward staff and ensure that this was not forgotten and was attended to by the ward team.

In addition, we were sometimes the only member of ‘staff’ spending uninterrupted time on a hospital bay and so would regularly ask patients if they needed anything. Sometimes when staff were not present or able to be called quickly to a bay, we provided immediate support and help. For example, if we observed a patient trying to get out of bed unaided, leaving the ward, or putting themselves at immediate risk of physical danger, we would call staff and, if necessary, intervene. Similarly, we would fetch cups of tea and pour glasses of water and carry out other simple requests within these wards when required. Although we accept that this may have, on occasion, contaminated the purity of the research, the welfare of those within these wards was always our priority.