SCIE Practice guide 09: Dignity in care

Overview of selected research - What 'dignity’ means

Despite being widely used and discussed, dignity has seemed a difficult term to pin down. It is often linked with respect from others and with privacy, autonomy and control, with self-respect and a sense of who you are. Threats to dignity have been identified with a very wide range of issues: with how you are addressed; with having to sell your house to pay for long-term care; with the kind of care patients receive at the end of life; or with inadequate help to clean or maintain your home. And the impact of factors linked to disadvantage and discrimination of all kinds further complicate the picture.

The provisional meaning of dignity used for this practice guide is based on a standard dictionary definition:

a state, quality or manner worthy of esteem or respect; and (by extension) self-respect. Dignity in care, therefore, means the kind of care, in any setting, which supports and promotes, and does not undermine, a person’s self-respect regardless of any difference.

Or - as one service user put it more briefly: 'Being treated like I was somebody' (PRIAE/Help the Aged, 2001).

Aspects of dignity

Building on a long tradition in medical ethics, nursing research has explored and tested the concept of dignity. Analysis of existing literature from the UK, the rest of the EU, the USA and Australia has provided some clear themes. One article in the nursing press (Haddock, 1996) concluded that dignity depended both on the interaction between an internal sense of identity and self-esteem, and the external respect with which a person is treated by others. A nurse is able to maintain and promote dignity by treating patients 'as valid, worthy and important at a time when they are vulnerable’. A study by Jacelon and colleagues (Jacelon et al., 2004), based on a literature review and focus groups with older people, found that dignity was widely seen as somehow reciprocal: behave with dignity, and you are more likely to be treated with dignity. But it was also an inherent part of being human: 'It doesn’t have to be an educated person: just being a human being we have worth. Every person has this basic value, and that value is dignity’ (focus group member).

Another concept analysis, by Griffin-Heslin (2005), finds all the characteristics of dignity listed above, and adds a set of 'defining attributes’ - aspects of a person’s situation which tell you that dignity is present:

• respect
• autonomy
• empowerment
• communication

A wide range of other aspects are listed under each attribute, including privacy, choice, self-esteem and taking time with the person.

The Dignity and Older Europeans study

Dignity and Older Europeans (DOE) (Cardiff University, 2001 - 2004) - a three-year international study involving researchers from six countries (Spain, Ireland, Slovakia, Sweden, France and the UK) - was funded by the European Commission. The first phase of the project involved a review of relevant philosophical and professional literature. The research team identified four 'types of dignity’ on the basis of this review (see box) and were then tested in a series of studies in each of the countries involving older people, people of all ages, and health and social care professionals.

Nearly 400 older people were involved in focus groups and interviews (Bayer et al., 2005), and there was 'substantial agreement’ across the partner countries about the significance of dignity: 'Dignity was seen as a relevant and highly important concept which, if maintained, enhanced self-esteem, self-worth and well-being’. Older people across Europe identified three key themes:

• respect and recognition, broadly similar to the 'internal’ and 'external’ aspects described above
• participation, linked to views about autonomy and equality, choice and control
• dignity in care, including the importance of maintaining independence, being fully informed, and of fighting ageism

Other major issues included staff and family attitudes, and patronising and disrespectful ways of addressing older people; the embarrassment and humiliation caused by exposure and the denial of privacy; and the importance of treating people with dignity when they were dying, and of respecting 'living wills’.

In the discussions and interviews with older people, research team members found that of the four types of dignity identified, the last two - relating to personal identity and universal human worth - were the most often mentioned.

Similar but not identical results were reported by Woolhead and others (Woolhead et al., 2004), following analysis of the UK data alone. The 72 older (aged 65+) British people also confirmed the importance of dignity, although it was easier to describe its absence than its presence. Findings fell into three categories:

• Dignity of identity Issues here concerned maintaining self-respect, which could be undermined by disrespectful address or labelling; by neglect of patients’ appearances and clothing; by exposure, lack of privacy in personal care, and mixed wards. Dignity was put at risk by suffering, and dying with dignity involved control of suffering, maintenance of a 'respectable’ appearance, and not dying alone.
• Human rights Participants emphasised the intrinsic dignity of all human beings, and the importance of being treated as an equal, regardless of age. Older people want to choose how they live, and how they die (for example, through the use of living wills): 'euthanasia was highlighted as an example of the right to end a life deprived of dignity’.
• Autonomy Participants wanted to retain independent control over their lives for as long as possible. Some felt that resisting the inevitable - nursing home care, for example - was itself undignified. For those who had accepted the necessity of nursing home care, their priorities shifted to maintaining their dignity by being helped to remain clean and tidy.

Other parts of the Dignity and Older Europeans study provide the opportunity to compare the views of older participants with the general public:

More than five hundred people in the six countries, aged between 13 and 59 years, took part in focus groups and discussed their views on old age, and caring for older people. Once again, 'dignity’ emerged as an important element in older people’s lives, which lack of time and resources could undermine. Many participants had negative views of the health and social care available to older people (Stratton and Tadd, 2005).

and with professionals involved in caring:

In interviews and discussion, providers of care came up with definitions of dignity which were broadly similar to those of service users, and agreed that dignity and respect were important for people of all ages. However, the standard of care was not always what it should be. Levels of training, staff and other shortages, and lack of time were all cited as reasons for dignity becoming a low priority. Others believed the 'system’ was to blame - an emphasis on performance targets was discouraging staff from providing personalised care: 'There is a great pressure of time getting things done and it is because of what the system values, which is getting off trolleys, getting them sorted out quickly, getting them through quickly and not being delayed - it’s a factory’ (focus group member). Another participant said, 'It’s very easy to focus on problems, rather than people’ (Calnan et al., 2005).

The study produced a number of policy and practice documents, all of which can be found on the Dignity and Older Europeans study website.

Autonomy, privacy and informed consent

Another EU-funded study (Scott et al., 2003a) explored the meanings of patient autonomy, privacy and informed consent in five countries. One part of this looked specifically at the views of older people who were living in long-term care homes in Scotland, and compared them with the views of nursing staff. The study found significant differences of view on the extent to which patients were given enough information on some topics, and on patients’ opportunities to take decisions about their care. On privacy, the evidence was mixed. Encouragingly, both nurses and patients agreed on the importance of privacy, and there was strong agreement about the extent to which privacy was protected in some situations. But in others - for example, in relation to protecting privacy while giving an enema - nurses felt that they successfully protected privacy, but patients disagreed. There was also disagreement about informed consent. In general, nurses reported that they were satisfied that informed consent had been sought and given in appropriate situations. Patients were much less certain that this was the case.

The meanings of dignity: a summary

This section has brought together a range of ideas derived from research and policy documents about how dignity is seen and described by older people, their carers, practitioners and analysts. The validity of the research depends, of course, on the extent to which all potential shades of opinion and cultural difference are represented among the people interviewed. Despite some gaps in the research and identified differences of emphasis depending on ethnicity and culture (see Inequality, disadvantage and discrimination), extensive research in the EU and the USA has uncovered a number of consistent overlapping themes, as summarised in the box.

Footnotes

1. Birrell et al., 2006, Davies et al., 1997, Woolhead et al., 2004, Woogara, 2005, Calnan et al., 2005, Bayer et al., 2005
2. Woolhead et al., 2004, Turnock, 2001, Woogara, 2005, Street and Love, 2005, Randers and Mattiasson, 2004, Birrell et al., 2006, Jacelon, 2003, Scott et al., 2003a
3. Birrell et al., 2006, Furness, 2006, Jacelon, 2003, Afshar et al., 2002, Arino-Blasco et al., 2005, Franklin et al., 2006, Woogara, 2005, Commission for Social Care Inspection, 2006
4. Davies et al., 1997, Randers and Mattiasson, 2004, Scott et al., 2003a, Hickman, 2004, Cloutterbuck and Mahoney, 2003, Bayer et al., 2005

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