Abstract
Objectives
To examine: older people's and their relatives' views of dignified care; health care practitioners' behaviours and practices in relation to dignified care; the occupational, organizational and cultural factors that impact on care; and develop evidence-based recommendations for dignified care.
Methods
An ethnography of four acute trusts in England and Wales involving semi-structured interviews with recently discharged older people (n = 40), their relatives (n = 25), frontline staff (n = 79) and Trust managers (n = 32), complemented by 617 hours of non-participant observation in 16 wards in NHS trusts.
Results
‘Right Place - Wrong Person’ refers to the staffs' belief that acute wards are not the ‘right place’ for older people. Wards were poorly-designed, confusing and inaccessible for older people; older people were bored through lack of communal spaces and activities and they expressed concern about the close proximity of patients of the opposite sex; staff were demoralised and ill-equipped with skills and knowledge to care for older people, and organizational priorities caused patients to be frequently moved within the system. In none of the wards studied was care either totally dignified or totally undignified. Variations occurred from ward to ward, in the same ward when different staff were on-duty and at different times of the day.
Conclusions
The failure to provide dignified care is often a result of systemic and organizational factors rather than a failure of individual staff and it is these that must be addressed if dignified care is to be ensured.
Introduction
Maintaining the dignity of older people receiving health and social care is of growing concern in the National Health Service (NHS), not least because 70% of bed days involve people over 65 years of age. Despite the interest and increasing emphasis on dignity within English health policy and in professional codes and research literature, dignity remains difficult to translate into practice, especially in the care of older people.1-7 Why this is so is not clear. Accounts of older people being treated in undignified ways continue to capture media headlines and challenge care providers.
This study explored the experience of dignity in the acute care of older people in four acute NHS trusts. It considered the views of staff about the ability of acute hospitals to respond to the needs of the majority of its patients, namely older people. We also sought to identify those factors that enable or promote dignified care.
Methods
The study involved an ethnography 8 of four acute hospital Trusts in England and Wales as the aim was to explore the prevalence and practice of dignified care as well as the structures and rules influencing its provision. The Trusts were purposively selected according to their organizational characteristics, Care Quality Commission ratings for quality of care and resource use and their involvement in dignity-related initiatives.
Semi-structured interviews with recently discharged older people (65 and over) (n = 40) and their relatives (n = 25) were undertaken about their experiences of dignified care. Frontline staff (n = 79) and middle and senior managers (n = 32) were also interviewed to explore the occupational, organizational and cultural factors that foster or detract from dignified care (Table 1).
The interviews were complemented by 617 hours of non-participant observation of practices and activities in 16 wards in the four Trusts to avoid discrepancies between what people say they do and what they actually do, thereby reducing potential bias. Observations were undertaken across 24-hour periods, on all weekdays, in each of the 16 wards. In each Trust, two wards exclusively for older adults and two for adults of all ages were chosen by Trust managers in consultation with the research team. The range of wards included:
Characteristics of interviewees
Notes: 1. Many carers said they could not remember 2. Includes dietician and an activities coordinator
Site 1: Stroke; Trauma/Orthopaedic; Care of Older People; Acute care of people with dementia.
Site 2: Rapid discharge/general medicine; Stroke; Care of Older People; Rehabilitation.
Site 3: Care of Older People; Vascular/Rheumatology; Respiratory medicine; Trauma/Orthopaedic.
Site 4: Care of the Older People; Orthopaedic; Female Surgery; Rehabilitation.
The observations identified aspects of ward and staff activity, the environment, and processes and organisational elements that maintain and challenge dignity. No intimate personal care was observed, as this could infringe a person's dignity. Particular aspects of observed care were discussed with patients as a means of triangulation to check researchers' interpretations of events. The unstructured observations were informed by a topic guide developed from current policy, audit developments 9 and the literature 10-13 paying particular attention to practices which enhance, maintain or detract from an older persons' dignity such as being recognised and respected, and maintaining identity, independence or autonomy. 14
Using an agreed format, field-notes were systematically logged and expanded soon after the observation. Researchers undertook simultaneous observations in each other's sites comparing field-notes to ensure consistent interpretation of the observation brief. The fieldwork was carried out between November 2008 and April 2010.
Written information about the study was given to all participants prior to seeking written informed consent for the interviews. Much discussion took place regarding consent procedures for the observation. Because the inpatient population changes so rapidly, written consent was deemed impractical especially as intimate care was not being observed and researchers would only be present in areas where visitors had access. At the commencement of every observation period, researchers introduced themselves to patients and visitors, gave a verbal explanation of why they were there, answered questions and sought verbal consent while ensuring individuals were given ample opportunity to object to their presence. No patient or visitor objected to the researchers' presence.
All staff on the observation wards were given written information describing the study and the purpose of the observation. Researchers made themselves available to answer questions at pre-specified times to ensure all staff had the opportunity to raise concerns. No staff member raised concerns about the study.
Data from each site were pooled and analysed using an inductive, thematic approach aided by N-vivo 8, as the intention was not to maintain the specificities of ‘cases’ but to identify overarching themes to form a comprehensive picture of the collective experiences of older people and those working on acute wards. The findings could then be said to logically ‘represent’ 15 other similar acute Trusts in England and Wales. Individual researchers independently analysed and coded a selection of transcripts prior to discussion, justification and refinement of the coding framework applied across the data. Interpretations and refinements continued in analysis meetings and emergent themes were identified and agreed. Older people and carers were involved with and informed each stage of the research process and three older people were employed as members of the research team. Ultimately, the analysis identified four overarching policy and practice themes: whose interests matter?; right place - wrong person; seeing the person; and influences on dignified care. 16 The first two themes are discussed in detail in this paper as they are the most relevant to policy development. Four stakeholder workshops for NHS managers and staff, voluntary organizations and policy-makers (n = 150) were held to validate the findings and explore how they resonated with participants' experiences.
Results
Whose interests matter?
This theme reflects the multiple and competing interests of NHS Trusts at the organizational, ward and individual levels. By paying attention to the contexts of care, it was clear that the interests of patients can conflict with those of acute Trusts, and their staff.
Risk avoidance
A key concern of the Trusts was patient safety, particularly infection control and avoiding falls, which resulted in many audits and interventions to manage these risks effectively. Focusing only on what these measures highlight can result in older people's experiences of care being neglected. For instance, processes put in place to control and manage infections, such as being nursed in a side-room, engender feelings of isolation. Similarly, being moved around or between wards to ensure people with infections are nursed separately can result in disorientation, apprehension and confusion. The impact on individuals' experiences of care is likely to be ignored as this is not part of what is measured. This participant explains her experience of being barrier nursed in a side room:
‘You wouldn't want to be in a little room on my [sic] own because you felt lonely, on your own. You're not feeling well. If there's something going on around you that you can watch it takes your mind off it. But that's the only time I've cried in hospital, being in a little room on my own. No, I didn't like it.’ (Interview with a 68 year old woman, Trauma/orthopeadics. Site 1)
Concerns about falls and other untoward incidents resulted in patients being nursed at the bedside and bedpans or commodes being used rather than taking people to a toilet. Bed rails where often used unnecessarily:
‘I think that staff are very safety conscious and if bedrails are on beds, they think they need to pull them up and if they leave them down that could be being neglectful, even though that actually might be the right decision for that patient and there might still be risks, it's about balancing them.’ (Interview with a Consultant Nurse, Site 2)
When asked to be taken to the toilet, people were frequently encouraged to use incontinence pads, without consideration of the indignity and degradation experienced by soiling oneself. Such risk-averse practices ignore the possibilities of harm to the person's sense of worth, their identity and fundamentally their dignity.
The fear of people with dementia interfering with technical equipment and posing risks to others was evident on many wards, despite the fact that constant attempts to control their movement can lead to increased agitation: 17
Phillip is standing up and is trying to walk. Both the staff nurses rush to him and take him gently back to his chair, saying, ‘There's a cup of tea coming round in a minute.’ (I later discover Phillip is described as a ‘wanderer’ and has had a number of falls). Phillip has got up again; he says he is going next door. The health care assistant says, ‘I need you to sit down, will you sit down for me? Stay there for a bit, stay there for me’. (Observation: Care of older people, Site 1, Afternoon)
Other examples of risk avoidance included ‘de-cluttering’ which in one area involved replacing bedside lockers with overhead cupboards, which patients could not reach, leading to increases in lost property. The centrality of risk in the culture and practices of acute Trusts led to people losing control over fundamental aspects of their bodies, for instance by automatically using wheelchairs to transport people capable of walking independently. This often resulted in a reduced sense of control, jeopardizing self-image, identity and dignity.
Unintended consequences of Trust priorities
The policy of high bed occupancy in the NHS has an impact on older people's experiences of care as staff are under immense pressure to make beds available. This priority also works against the organization by increasing other risks, especially hospital-acquired infections.
Moving patients to meet bed occupancy targets can also increase lengths of stay, result in poorer outcomes and other negative impacts. Older people are affected more than most as their clinical needs fit less easily into single specialisms and those whose acute illness is complicated by confusion or dementia are most likely to be moved as their needs are often seen as ‘inappropriate’ in specialist acute wards.
This policy can lead to poorer outcomes as it can cause increased confusion and patients may receive less attention on outlying wards where they are seen as being in the ‘wrong’ place, as this nurse identifies:
She immediately tells me she knows what is wrong - she says it is having dementia patients on acute wards. She tells me of the difficulties nursing aggressive dementia patients on bays with other patients. She says dementia patients can be moved round the hospital three or four times during their stay and this increases their confusion and aggression. (Observation: Medicine, Site 3, Night Duty)
Frequent bed movements are a drain on Trust resources in a number of ways, including increased compensation payments for lost possessions:
‘He lost part of his property in that move because it happened in the middle of the night and that's not supposed to happen. There is a cut off point for transfers, so I believe you're not supposed to be transferred after 8 pm. And that's certainly something we see, there's a lot of claims for lost hearing aids, glasses and false teeth. It's a massive amount of money this Trust pays out for that.’ (Interview with Complaints/PALS Manager, Site 1)
A further example is the cost in staff time spent packing belongings, transporting patients, handing over to other clinical teams and cleaning vacated areas for the next incomer. It is demoralizing for staff who feel this should not be the primary focus of their role:
‘I didn't come into nursing care to ship patients to different wards; I came into nursing to nurse in care, you know, and all the nurses are the same’ (Interview with a Staff Nurse, Site 4)
The ways in which staff interpret clinical governance requirements and target driven priorities such as bed occupancy have many unintended consequences for patients, Trusts and staff, which can mean that staff become risk averse, often protecting themselves and the Trust, rather than acting in the patients' best interests.
Right place - wrong person
This theme refers to the almost unanimous view expressed by Trust staff that the acute hospital is not the ‘right place’ for older people.
‘In a busy acute hospital because with the best will in the world, they do need to be somewhere where the staff have some awareness of the needs of people.’ (Interview with Safeguarding Co-ordinator, Site 1)
‘It's just not the right place for them.’ (Interview with a Staff Nurse, Site 3)
The interpretation here is that the needs of older people on acute wards are not those that the ward staff should be concerned with. Oliver's comments about ‘socials’ and ‘acopias’ 18 spring to mind as older people are seen as needing some type of care delivered somewhere other than the acute ward.
Despite older people occupying the majority of beds in acute hospitals, 19 the quotation below was a solitary voice amongst those interviewed:
‘When we talk about providing care for inpatients, we are in effect talking about care of the elderly’&; One of our doctors recently did a survey on our medical wards, it was about 200 beds &; and the average age of the patients in the beds &; was 82 and ten percent were over 92.' (Interview with Director of Operations, Site 2)
The prevalence of this view results in physical environments, staff skills gap and organizational processes acting as barriers to the delivery of dignified care.
Impact of the environment
The hospitals were confusing places with identical corridors lacking colour, signage or distinguishing features. Similarly, wards and bays were often identical, as one man who had experienced six moves commented:
‘One ward looked very much like another. If they'd moved me when I was asleep, I simply would not have known I'd been moved.’ (Interview with 79 year old man, Care of older people, Site 4)
It was rare to find directions to toilets, bathrooms or exits and some facilities had changeable signs according to the patients' sex in adjacent bays. Few clues existed to orient people in time and place and when clocks were present, they often showed the wrong time. There were few date boards or signs showing the hospital or ward name and when patients were moved from ward to ward they often forgot where they were. The monotony of daily experience meant that even those who were not cognitively impaired lost track of time and day:
As the health care assistant is leaving the ward, Alan asks, “Is it Saturday 23rd May?” The assistant confirms this and Alan says, “It's hard to know what day it is - they are all the same.” (Observation: Trauma/orthopaedics, Site 1, Morning)
All except two wards in this study accommodated men and women in single-sex bays in configurations ranging from completely segregated accommodation to barely separated bays for each sex. Where toilet and washing facilities were unisex patients had to walk in their night-wear past, or through, bays of people of the opposite sex. The similarity of the bays caused difficulties for confused patients and increased the potential for embarrassment. All patients spoke about the embarrassment and humiliation experienced in such situations:
‘Well certainly mixed sex wards I find that very undignified, for not just the women, for men as well. One would go in - you'd go in there [the toilet] and as you're coming out a gentleman's going in. I mean I was okay because I had you [her husband] with me or Julia [her daughter]. But if you were on your own and worrying about whether the toilet door's shut or the bathroom door, that's very undignified.’ (Interview with a 76 year old woman, Care of older people, Site 2)
Where day rooms existed, they were rarely used for their original purpose, leaving nowhere for people to go - other than their bed or bedside chair. Some loitered at the nurses' station, which had implications for privacy and confidentiality, as conversations about patients could easily be overhead.
Technical equipment beside beds or in corridors caused difficulties for less mobile people and for those who lacked confidence as having to navigate an array of equipment reduced their sense of competence and control and impacted on their self-image as they perceived themselves as dependent. The disempowering nature of many wards leaves people lacking control and losing self-esteem. This older person echoes the views of many about what is important in maintaining dignity:
‘I kept my dignity. I didn't have to keep asking to be helped.’ (Interview with a 76 year old woman, Care of older people, Site 2)
The skills gap
Very few staff had specific training to work with older or confused people:
‘Obviously when you train to be a nurse you go through so many different placements every year and they normally do throw in a health care of the elderly placement. So that's all the real training you get is whether you pick it up while you're training as a nurse.’ (Interview with a Staff Nurse, Site 3)
Ward managers recognised the skills gap, particularly in caring for people with dementia:
‘I don't think we do focus on it [older people's care and dementia] as much as we should do really, no. And I would like to see it being a lot more&;focus on older persons and dementia care because it is a bigger part and it's growing, it's increasing day by day, year by year is the older population&; But no I don't think we focus on it as much as we should do to be quite truthful.’ (Interview with a Ward Manager, Site 3)
The lack of skills resulted in most staff dealing with people with dementia as they thought best, often using personal experience, resulting in the same patient being treated differently by different people. Often confused patients were brought to the nurses' station to distract them while staff completed paper work. Even patients commented that staff experienced difficulties in relation to dementia care:
‘A lot of the staff didn't bother. All they [confused patients] needed was somebody to sit and talk and explain, and OK within five minutes they might forget and they would have to have it explained to them again but that's what you do isn't it? You know, that's just life when people are confused.’ (Interview with a 78 year old man, Stroke Ward, Site 1)
These concerns raise questions about whether the skills required for such patients, should be core or specialist. The tendency towards specialism is tempting, however as older people are the greatest users of inpatient services, there is a powerful argument that these skills should be core.
Given the recent emphasis on dignified care, all staff were asked about training opportunities in relation to dignity. Although students emphasised that this was important in their education and they would fail if they ‘did not state that patients were treated with respect’, how to do this was not always specified. Few qualified staff or health care assistants had received continuing education or training on delivering dignified care.
The ward milieu
During the field work, the researchers tried to gain an understanding of what the ward might feel like for an older person. First impressions were of immense busyness, particularly during mornings when doctors, physiotherapists, occupational therapists, dieticians, cleaners as well as nurses and health care assistants may all be present. The focus was on completing tasks rather than providing individual care, high activity levels with staff walking quickly, avoiding eye contact and having minimal engagement with patients whilst carrying out their work. Thus many older people felt unable to call staff as they did not want to bother them:
‘They seemed awfully rushed and so they didn't really have time I don't think to look at you, and to take the time to see if you was okay.’ (Interview with a 63 year old man, Trauma/ orthopaedics, Site 1)
Often patients or relatives would hover at the nurses' station trying to catch someone's eye, only to give up as staff rushed about, ignoring them. This sense of pressured activity was in stark contrast to the inactivity of the majority of patients who found the monotony difficult to deal with:
‘Oh dear, these days are a week long.’
(Observation: Care of older people, Site 4)
The findings suggest that there is a mismatch between the needs of the majority of patients in acute hospitals and the organisation of acute wards, however, staff at all levels concluded that it is the older patient who is in the wrong place.
Most older people and their relatives, expressed views about the overall standards of care received, and were generally complimentary about the hard-working nursing staff Similarly, most staff wished to deliver high standards of care and regretted that this was not always possible with staff shortages and bed pressures being a daily reality. Despite such sincere intentions, the care provided to patients was variable. Nowhere was the care totally dignified or totally undignified, instead, the randomness of the quality reflected a lottery. This variability, which emphasises the systemic nature of the problems in delivering dignified care, occurred from ward to ward, in the same ward when different staff were on duty and at different times of day. For many individuals, this inconsistency was something with which they had to come to terms. Comments such as, ‘&; the day staff were very nice,&; had a wonderful attitude with some patients. It was a different story on night time &; I was horrified by some of the night staff highlight the unpredictable standards resulting in apprehension and uncertainty about what would happen or what was expected of them.
Discussion
The failure of acute Trusts to acknowledge that most of their patients are old, frail and dependent, directly impacts on patients' experience of care and influences how staff work and the ward atmosphere. It results in environments that are not ideal for older people and are especially hostile to those with cognitive impairments which, when added to the difficulties imposed by avoiding risk and meeting Trust priorities, results in older people's care being less than dignified.
That many staff recognised these issues but concluded it was the older person who was in the wrong place seems strange when the majority of in-patients are elderly. The assumption that there must be a better place for ‘them’ to be, but wherever it is, ‘it is not here’, is suggestive of an underlying institutional ageism as the more obvious response would be to accept that acute care should adapt to meet the needs of the majority of patients and thus become the right place for each patient.
This work was undertaken in only four acute NHS Trusts in England and Wales. However, the similarities in what was observed and recounted by interviewees and the resonance with which the findings were endorsed in the later workshops suggests that they are commonplace. The study findings also reflect the findings of other research studies and independent reports 6,7,10,11,20,21 highlighting the lack of dignity for older patients in acute hospitals in many countries.
Risk aversion is particularly concerning as it affects staff-patient interactions and makes staff reluctant to determine an appropriate balance between risk-taking and autonomy. Clinical governance systems work to operationalise risks, rendering them calculable and monitoring them for the danger posed to organizations. 22 Systems then become less about the individual at risk and more about managing responsibility, blame and possible repercussions of risk to the organization. There is also a potential for distortion when performance targets are privileged above all else. As Strathern 23 highlights, audit technology is not a good means of understanding how organizations work, because it consumes only one kind of information but cannot get to the essence of overall quality. This results in aspects of practice that are not measured being given less priority. As patient experience and dignified care can be difficult to quantify, this poses serious challenges to the provision of dignified care.
Speculation about why achieving dignified care for older people remains a persistent problem abound, including the emphasis on technocratic, consumerist business models and productivity ideologies that demand a high price. That price is the commodification of care and services, resulting in people being treated as objects to do things to, and from which it is a short step to treating them without respect. 24 There is much evidence that mechanistic ways of working affect how individuals perceive their moral role and agency. 25 The loss of control and fragmentation make it difficult to retain a sense of responsibility for the whole and this may be one reason to explain the growing calls for greater humanity (dignity, respect, compassion, empathy, and kindness). What is clear is that entreating one group of staff to care more will not solve these problems.
Conclusion
Systemic problems require systemic solutions and many of these are necessarily long-term. In the short-term there must be recognition at all levels of the NHS that older people are the main business of acute hospitals -it is not enough to say they should not to be there. There should be compulsory induction and training for all staff groups about providing dignified care and the needs of older people, especially those with dementia. Effective leadership, time to reflect on practice and confidence to question inappropriate practices that have become accepted norms require urgent attention if dignified care is to become a reality for acutely-ill older people.
Footnotes
Acknowledgements
We would like to thank all of the older people, their families, frontline staff and Trust managers who generously gave their time to be interviewed. We are particularly indebted to the four acute trusts who agreed to participate and who openly welcomed us into their organizations.
This paper presents independent research commissioned and funded by the National Institute for Health Research (NIHR) Service Delivery and Organization (SDO) programme to whom we are very grateful. The views and opinions expressed by the authors in this publication are those of the authors and do not necessarily reflect those of the NHS the NIHR, the NIHR SDO programme, the Policy Research Programme (PRP) or the Deparment of Health. The views and opinions expressed by the interviewees in this publication are those of the interviewees and do not necessarily reflect those of the authors, those of the NHS, the NIHR, the NIHR SDO programme, the PRP or the Deparment of Health.