They took all your dignity away

Two recent in-depth studies of continence care of older people in hospitals and nursing homes show that older people are not always treated with dignity or able to use toilet facilities when needed. The studies, carried out by the University of Kent and the Royal College of Physicians’Clinical Effectiveness and Evaluation Unit showthe need for care which reflects the patient’s personal preferences rather than prescriptive clinical guidelines.  Here, Dr Adrian Wagg describes how a research team with the Centre for Health and Social Studies along with the Royal College of Physicians of London embarked upon a project designed to explore the factors which defined private and dignified continence care, in order to perhaps be able to generally assess the quality of care, to produce some sort of guide to providing private and dignified care and to produce an evidence based educational intervention.

The concept of privacy and dignity in healthcare has become a central platform of care over the last two years. Privacy and dignity in practice has been the focus of many publicity campaigns and political strategies within the NHS and social care field. However privacy and dignity as a concept is difficult to define and certainly to assess. Whilst it is easy to cite examples where privacy and dignity in care were lacking, it is far harder to define principles underlying the concept.

To this end, a research team with the Centre for Health and Social Studies along with the Royal College of Physicians of London, who have a long experience of working in quality and standards around continence care, embarked upon a project designed to explore the factors which defined private and dignified continence care, in order to perhaps be able to generally assess the quality of care, to produce some sort of guide to providing private and dignified care and to produce an evidence based educational intervention. The study took 2 years and happened in 3 distinct phases.

The research

The first phase was a review of what had gone before, drawing upon other researchers’ work in order to inform the current project. It became apparent from previous work that dignity could be split into 2 distinct areas. Dignity as a concept which related to the self - a kind of internalised concept, and then secondly, an external concept - dignity in relationship to other people. Of course both are modulated by perceptions, prior belief, culture, upbringing and the situation at the time.

The next phase of the work took these concepts and explored them in 1:1 interviews with frailer older people who were inpatients in hospitals and residents of care homes in east Kent and London. Rather surprisingly we found that many of our older people were unable to articulate what dignity meant to them but in similar ways to previous research, many were able to cite examples of care which were clearly undignified.

Over 20 interviews, much data were gathered and analysed for common areas and from this a list of factors which might need to be adhered to in the provision of dignified care was achieved and converted into a schedule for the observation of care.

This next stage was designed to observe continence and toileting care being delivered and to compare it or mark it according to the factors which had been identified by patients as being important in providing dignified care.

This part of the project proved to be the most difficult the research team had ever encountered. Whilst older subjects were cautious but often co-operative, care staff were often reluctant to have their care observed. Although the researchers all acknowledged that this would be a difficult area, we were still surprised by just how difficult.

After a lot of hard work and after achieving 56 episodes of observed care, the team regrouped to reconsider a change in method which might gather similar useful data. The method chosen to examine this further was to conduct further interviews following episodes of toileting care, what was termed a validation interview. It then became apparent that one interview was actually not enough and a series of 3 interviews was required for each episode of care, as patients and residents were often awfully complimentary about their care when first approached about it.

It was only later that more depth and perhaps after a period of reflection, an honest account was given. From all these data, an educational intervention based upon giving private and dignified care using a reflective model is being developed.

The findings

But what was found in the first 2 phases? The interview phase explored areas which defined dignity, coping strategies to deal with toileting and continence problems in the outside world and strategies in hospitals and care homes, then items which concerned professional care; communication, personal care and time, choice and privacy. When asked about dignity, participants provided a variety of responses; personal dignity meant different things to different people as this participant explained:

‘‘How do you put it, it varies, the other thing is some people might think something undignified and others don’t but I am not particular in these sort of ways…. ‘(NH1:3:7)

Maintaining dignity, however, was extremely important and was bound up with a sense of identity, status and independence. Its loss is clearly devastating to some:

‘I think that’s what dignity is but as they say, take my dignity away and I am finished. I want to grab hold of it. That’s what your dignity is…’(H1:1:5).

The perception of dignity appeared to be linked to maintaining personal standards and appearances, having pride and as well as having an inner sense of confidence.

Privacy was also considered a component of dignity:

‘Dignity, well its being left private. Not being asked too many questions, you know. Just to be private really…(H2:10:7).

When related to other people, subjects felt that dignity was linked with how they were seen and treated. This was an important factor in their perception of themselves and judgements about their self worth, central to keeping to dignity in relationship to others, contact and being valued by family and friends. One nursing home resident remarked:

‘Well, to treat you as a human being rather than just a job…(NH1:3:6)

Although brief, this indicated a need to be seen as an individual and equal by those caring for him.

Mutual respect and value of a real relationship became extremely apparent during this work. This real relationship meant more than just being a care recipient. It meant knowing a little bit about the person delivering care. It meant establishing rapport.

As far as continence was concerned, our subjects spoke of the importance of being able to conceal their incontinence. Some kept catheters covered with blankets, some even concealed this from even their closest family. Additionally, subjects discussed the importance of being able to conceal equipment which might indicate or provide evidence of incontinence such as pads. Choice of continence aids also assumed great significance:

‘It’s these rotten pads that I don’t like. It’s like you’ve got a bundle underneath your bottom. That’s what loses your dignity when you have to wear those things.’ (NH3:3:6).

When people could hide their incontinence they felt normal but such coping strategies had emotional and practical consequences. Not being able to share difficulties and experiences with family and friends can result in loss of relationships and isolation. Revealing and adjusting to incontinence, however, seemed to be a process that took time and with time initial embarrassment faded.

When in hospital or in care homes, however, some took active control of their situation by padding themselves up, others by self imposed toileting regimes. Self management helped people maintain their dignity:

‘It’s like outside people coming to visit you and all that, making sure that they don’t see anything, smell anything, notice anything and I suppose we all want to go out of these premises with a bit of pride I suppose. That’s how I see it anyway.’ (NH1:4:2).

Many people cope with potential embarrassment with the use of humour. This humour was used by both subjects and appreciated this quality in their carers. Some participants related how they were teased by their carers but in the context of a caring and friendly relationship but if all else failed then subjects apologised to nurses or carers providing their care.

It became clear that hospitalisation was associated with the weighing up of potential loss of dignity against the benefits to health and life and that these perceptions could be readjusted following discharge.

Nursing home care admission was usually permanent. In our study, residents appeared to be resigned to a situation they didn’t necessarily feel was the best for them in order to maintain their dignity. The use of humour and banter to diffuse potentially embarrassing situations, or apologising for extra work they’d created became common means of reducing impact on the person.

Relationships with staff were clearly very important. The empathetic manner, having people smile, being addressed by their chosen name were all very important and negative comments were made where this clearly was not the case. It did not seem to matter how inane the content of communication appeared, this was important in stimulating and helping a patient or resident to feel part of things and to reassure them that they were perceived as people. Tone of voice similarly was extremely important and negative examples were given. One hospital patient reflected on the tone of voice the nurses sometimes used and how this made her feel:

‘Sometimes it is, sometimes it’s very hard voice, you know very strict, and I tell Em they use you as if you were a child’ (H1:3:5).

Subjects appreciated staff whose approach was friendly, kind and helpful. This spilled over into activities of care where carers were:

‘Patient with my impatience’ (H2:2:6).

Participants wanted discretion, promptness and efficiency in dealing with incontinence episodes. They wanted to be cleaned up quickly and it was important for them that the staff knew their individual needs and were responsive. Being kept clean and feeling the environment was hygienic was also important.

However, not all was good news. Older people can wait less time than younger people when they need the lavatory and some subjects related episodes where they were forgotten about. ‘Sometimes they forget all about you, they forget all about you sometimes. They answer the bell and then they say:

‘I wont be a minute, I am just going to so and so’ and then they go off to someone else and forget you and you have to start pressing it again or do it in your drawers’ (NH3:3:1).

Many patients in both hospitals and residents of homes felt that staff shortages caused delays in delivering care and an increased length of time in increased anxiety both in providing toileting and waiting to be taken off commodes or bed pans:

‘…but as I say when you are sitting here and I haven’t got a watch, and perhaps that curtain is pulled so I have no idea of time, probably only about 3 minutes but it seems about 3 hours’ (H2:13:5).

Many people felt that personal care when it was given often felt rushed and fitted around staff schedules and that their needs were secondary to the needs of the institution. Some felt that speed was important and potential embarrassment was therefore minimised by so doing. Subjects agreed that there were indignities which would need to be endured as a hospital patient.

Participants in the study felt that necessity took priority over choice and the desire to be clean was more important than being offered choice over the way it was done.

Some felt that institutional routines provided some security and predictability. This may reflect part of acceptance and maybe the choice for them in dealing with incontinence was not essential. However it became clear when probed that people felt that toileting by routine to fit around the needs of homes resulted in pain, accidents and loss of dignity.

People often expressed a personal preference for the sex of their carer, but many resigned themselves to whoever came along. Initially some participants had been surprised about male nurses delivering personal care, but they spoke of ‘Going with the times and getting used to it’, but regardless many felt embarrassed about exposing their bodies and accepting care from younger people.

Privacy was important but only when appropriate. Many people did not like having single rooms and the doors shut for much of the time. They preferred a variety of environments and care to be delivered privately when necessary.

Following the difficulties with the method, the validation interviews were undertaken in phase 2. One patient remarkably said ‘Well, you leave your dignity at the door’, and this was used as a key to discuss dignity:

‘I don’t think you think much about it really. If you can’t do for yourself, there is no sense in thinking about dignity. I have always been a person that I wouldn’t strip off in front of anybody but you can’t help it, you’ve got to and they don’t make you feel out of the way, they don’t take any notice of you, they say ‘don’t worry’ but it is still something I would prefer to do with my wife.’

It became apparent that dignity permeated all aspects of care. Indeed, dignity became more evident in other aspects because, to some extent, continence care had become a familiar routine and a necessary part of their care.

One resident felt there was no dignity in the care home she lived in as she was not given her preferred title and was made to feel a nuisance when she made requests for basic care.

Some felt that patronising or childish language used to them to congratulate them in behaving in a certain way was actually complimentary as they were then not seen as a nuisance.

In most settings, subjects found it easier to access care which was routine such as using the toilet before bedtime. Such care was not personalised and failed to offer choice, often negated dignity, but became a practical way of handling the problem.

The problems of moving communication and relations, in terms of beyond the impersonal and functional, to a more supportive kind, would give some protection against the indignity of care was very clear in participants accounts of dealing with new staff or staff who were unfamiliar to them.

There was a clear difference between care home residents and patients in hospitals around privacy. Most residents had their own room. In hospitals ward spaces are public and special measures have to be taken to create private areas. Participants described how curtains provide protection from some but not all surveillance. They reported that staff were careful about making sure curtains were completely closed, but less careful about how loudly they spoke behind them. Lack of activity or background noise meant that there was little distraction from hearing what was going on behind other’s curtains and confidentiality was often compromised.

Our attempt to focus on continence care as an exemplar for dignified and private care was unsuccessful. An overarchingissue was that dignity in continence care was inseparable from how dignity was generally perceived, a broad concept difficult to pin down in detail.

The findings of the project have been extremely enlightening and important advances in our understanding of the concepts which older people value and feel important in maintaining dignified care.

Dr Adrian Wagg is clinical director of the National Audit of Continence Care