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Dignity in care: the views of patients and relatives

VOL: 98, ISSUE: 43, PAGE NO: 38

Ann Gallagher, MA, BA, PGCEA, RMN, RGN, is lecturer in mental health, The Open University, UK

David Seedhouse, PhD, BA, is professor of health and social ethics, Auckland University of Technology, New Zealand, and professor of health care analysis, Middlesex University, London

Reports in the 1990s asserted that 'dignity' in health care had been violated, particularly in relation to the care of older people (O'Sullivan, 1991; Pink, 1994; Hannibal and Hardy, 1997; Kmietowicz, 2000).

Reports in the 1990s asserted that 'dignity' in health care had been violated, particularly in relation to the care of older people (O'Sullivan, 1991; Pink, 1994; Hannibal and Hardy, 1997; Kmietowicz, 2000).

In response to complaints about poor standards of care in the NHS made by the relatives of older people, The Observer newspaper initiated a campaign titled 'Dignity on the ward' in 1997. This prompted the then health secretary, Frank Dobson, to commission a study of 16 randomly selected acute wards in general hospitals. The subsequent report, Not Because They Are Old (Health Advisory Service 2000, 1998), indicated that older patients and their relatives were less satisfied with care than other age groups.

The NHS Plan (Department of Health, 2000) states that the government expects dignity to be a priority in care. Standard 2 of the National Service Framework for Older People (DoH, 2001a) also highlights this issue. In addition the patient-focused benchmarking exercise, The Essence of Care (DoH, 2001b), cites 'privacy and dignity' among eight fundamental aspects of care. What is lacking is the voice of older patients and their relatives.

This article reports on a small pilot study carried out to explore dignity in health care and the circumstances which may have an effect on it.

There is a wide range of definitions of dignity in the literature (Mairis, 1994; Haddock, 1996; Moody, 1998). For the pilot study, we adopted one developed by Shotten and Seedhouse (1998). Dignity involved being in a position where one is capable: that is, we feel dignified when we have the physical and psychosocial wherewithal to respond appropriately when our capabilities are threatened.

Clients usually feel dignified when they are able to function as independently as possible and have a genuine role in decision-making in relation to their care. This may involve simply asking older clients what their preferences are or it may require more creative strategies.

The data gathered during the pilot study suggests that staff were not always aware of patients' capabilities. One relative commented: 'They said: 'She can go to the toilet.' I said that she wouldn't. She can't walk. She couldn't get out of her chair. That's one of the reasons she came in. They said: 'We can give her a buzzer.' I said she wouldn't know what to do with it ...

'On the second night she tried to climb out of bed. I think since then they have realised how bad she is. The situation has been good. I just don't think they realised how bad she was.'

Dignity also requires circumstances that enhance an individual's capabilities. We define such circumstances as the external factors that may influence one's sense of dignity. While a simple thinking exercise - 'In what circumstances do I feel undignified?' - can identify examples of dignity-promoting or dignity-diminishing issues, it may not highlight the priorities of older people.

To maintain dignity, health professionals must either expand the patient's/client's capabilities and/or improve their circumstances. In this way, where circumstances and capabilities match, those involved are likely to feel dignified. Where they do not, the reverse will be true.

The pilot study provided information on which circumstances were most significant for older people. Gleaned from staff who were in close contact with older patients, and from patients and their families, this information showed a consensus on the issues of staffing, the environment and resources.

The tools used for the pilot study
The pilot study, conducted from 1999 to 2000, evaluated the impact of an educational intervention related to dignity in practice. It was carried out in three settings dedicated to the care of older people in south-east England: a medical ward in a large general hospital; a purpose-built unit for older people with mental health problems; and a rehabilitation ward.

Three tools were used to gather data on staff responses - an interview, an observation tool and an attitude scale. Some older patients and relatives were also invited for interview, with a total of nine patients and seven relatives across the sites involved. The interviews were qualitative in nature and focused on three main questions:

- What does dignity mean to you?

- What factors promote or enhance dignity on the unit/ward?

- What factors make maintaining dignity difficult?

Patients were also asked to describe situations in which they felt their dignity had or had not been maintained. The discussion is structured around patients' and relatives' responses to these questions and includes selected responses verbatim.

What dignity means
Respect was a key theme of all the patient/client and relative interviews. Patients spoke about dignity in relation to self-respect and of being treated with respect.

A typical comment was: 'I'm a lot older than some of these young nurses - you don't need to be treated as though you've lost your marbles. You need to be addressed in a manner that shows a little care and respect. I'm OK, I get on, but sometimes I've heard some of the older patients treated as if they were three years old. Respect for all patients, young or old, whatever race they are. That's the main thing. You're not a lump of meat, you're a patient.'

What this and most of the other interviews revealed was the link between independence/dependence and dignity. The patient quoted above refers to the need to be treated as a competent adult and compares the treatment of some older people to that of children. There is evidence that older people are not treated equitably and that age discrimination persists (Roberts and Seymour, 2002).

Patients and relatives also spoke of privacy and about the importance of non-exposure in relation to promoting dignity. This includes being covered up and having the curtains pulled around the bed during care activities.

Patients spoke about feeling embarrassed, degraded and depressed in situations where they lacked dignity. This supports Haddock's (1996) view that dignity involves a feeling, a behaviour and a value judgement. There was also evidence that relatives experienced negative emotions when their family member's dignity was undermined.

One relative said: 'On one occasion when I came in, the toilet door was wide open and my husband was sitting on it with not a stitch on him. He was 15 stone when he came in here, and when I saw him it really shook me and I couldn't sleep for a week because he'd got so thin. I said to one of them, do you mind shutting the door - it depressed me, it really depressed me. It's not happened since. They do their best here, some of them are better than others.'

The relatives of patients on the mental health unit and rehabilitation ward emphasised issues such as cleanliness and grooming more than respect. There were indications that they felt that a patient's pre-illness preferences on issues such as grooming should be aspired to. One said: 'I think dignity is connected with bearing, the way she kept herself, well-dressed and clean. She was in the fashion business so she was always well dressed. I think dignity in a hospital revolves around keeping the physical things and keeping her clothes in good shape.'

Interpreting the findings
The data suggests that patients' capabilities are often compromised in hospital. They depend on staff for the most personal activities of daily living and staff may, occasionally, undermine patients' capabilities by not paying enough attention to what they are capable of.

Even when patients' subjective awareness is severely compromised, relatives expressed the view that patients' previous preferences should be respected. The data also shows that the well-being of relatives can be compromised if patient dignity is not maintained, such as when the woman saw her husband naked on the toilet.

The interviews with staff, patients and relatives revealed a consensus on the circumstances that promote or inhibit dignity in practice. The key issues centred on staff, the environment and resources.

Staff
This was the dominant theme and it appeared to make the greatest contribution to promoting or diminishing dignity. Patients and relatives referred to staff statements, behaviours and characteristics as promoting or inhibiting dignity. One patient revealed that she found it difficult to ask staff to take her to the toilet, which affected her dignity. On one occasion a nurse had remarked: 'Can't you ask somebody else?' Asking then became an issue for her.

Perhaps the nurse was not aware of the effect such an off-the-cuff remark could have on a patient whose dignity was already compromised.

Citing situations in which her dignity had been compromised, another patient highlighted the subtleties of promoting dignity which could be understood and responded to only after getting to know the patient. She said: 'For instance, this morning she brought me my tea, quite unnecessarily without a saucer, the same person brought the breakfast and more or less threw it at you. Well, I suppose it's a big place.'

This demonstrate the overlap between etiquette and ethics in practice. For example, the patient quoted above emphasised that the way things were done was significant - that tea and meals should not simply be delivered but that they should be delivered thoughtfully and courteously. The importance of staff taking time, maintaining cleanliness and comfort, listening to and speaking with patients is further emphasised by relatives' comments.

Environment
This theme was common to all three sites. One patient spoke about the challenges presented by curtains and by being in bays with four or six beds. Mixed-sex wards were also identified as potentially able to diminish dignity.

On the mental health unit, one relative expressed concern about the risk of aggression from other patients. Relatives on this site also referred to previous care environments that had maintained patients' dignity. One woman spoke of the importance of her spouse living in a clean and pleasant environment. Another said: 'I suppose I've thought about it [dignity], that's why I try to make the room smell nice, bring flowers in, and she has a certain amount of recognition. There's a nice ambience in the room. I feel very lucky, privileged in a way that she has her own room.'

Another woman commented: 'This place is the best place he's been in. It's kept nice and clean.' Later, she talked about another care environment she had visited. 'I said: 'My husband is not going to the place that you're wanting to send him to.' She [the doctor] said: 'Why not?' I said: 'It's like Dickens, 100 years old. Have you seen where you are sending people? Have you been there?' She said: 'No, I haven't.' I said: 'Do yourself a favour and see it.''

Resources
On all three sites, patients and relatives referred to the impact of staffing levels on maintaining patients' dignity. A typical comment was: 'You know they can't cope with the various types of clients they've got now. They need more, almost one to one. I wonder about the use of agency staff in this type of environment. I always say that people with this type of problem, dementia, need continuity.'

Relatives highlighted the importance of continuity of care and of staff knowing the patient. One consequence of staff shortages is the use of agency nurses, which was mentioned by three of the four respondents on the mental health unit, and never in a positive context.

Relatives appeared to fear that agency staff might lack the skills necessary to work in a specialist area, not pull their weight - leaving regular staff to do more work - and not know patients well enough to guarantee an acceptable quality and continuity of care. One relative also implied that agencies were not selective about the people they recruited.

Another issue, which may have been associated with inadequate staffing, was haste at mealtimes. One relative said: 'I think they feed them too quickly. I bring food in for my wife. They must go at it a hundred miles an hour. I've noticed that with a bit of patience I can put the tea in her mouth, to start her off. She was doing that until a few months ago. I suppose the more things are done for you, the less you remember.'

However, a contrary view was also expressed on the same site. 'I've watched them feeding them and they do a nice job of it - it's not forced in their mouths or anything like that'.

Conclusion
This article provides an overview of responses from a small number of older patients and their relatives regarding their understanding of, and priorities in relation to, dignity in health care. There was consensus that respect was a key concept in relation to dignity. What this amounted to appeared to be a recognition of patients' common humanity, whatever their illness status, age or race.

Staff can show respect for dignity by, for example, finding out a patient's preferences and adapting circumstances to meet them. If patients cannot speak for themselves much can be gleaned from relatives.

Interviewees spoke of the importance of staff being aware of patients' capabilities, and listening to and talking with patients. What also emerged was the need for staff sensitivity and reflection in practice.

Environment was also crucial. It is clear, for example, that having to share a bay with other patients can affect a patient's dignity. Relatives also valued a pleasant environment and saw this as a means of promoting dignity.

The final issue of resources related mainly to staff shortages. Patients gave examples of how this undermined their capabilities and relatives cited discontinuity of care. The use of agency nurses was not perceived positively.

We were unable to develop the pilot into a full-scale research project, but this study enabled us to identify factors that promote or diminish dignity in practice. There is much in it to prompt practitioners to reflect on their practice. Given the small-scale nature of the study, we do not claim to have identified a definitive set of factors but hope that our work will prompt others to investigate further.

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