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 with a sense of who you are. Threats to dignity have been identified with a very wide range of issues: how you are addressed having to sell your house to pay for long-term care; the kind of care patients receive at the end of life; or 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 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 person receiving care put it more briefly, 'Being treated like I was somebody'Policy Research Institute on Ageing and Ethnicity/Help the Aged, 2001
Aspects of dignityOpen
Building on a long tradition in medical ethics that encourages critical analysis of key concepts, nursing research has explored and tested the concept of dignity. The kind of ‘concept analysis’ of selected literature from the UK, the rest of the EU, Canada, the USA, Japan and Australia has provided some clear themes about the fundamental meanings of dignity. 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), found 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:
A wide range of other aspects is listed under each attribute, including privacy, choice, self-esteem and taking time with the person.
The Dignity and Older Europeans studyOpen
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). These 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.
The four types of dignity identified by the DOE research team:
- moral status
- personal identity
- the universal worth of human beings (Menschenwürde).
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
It is in care that human dignity is consolidated... You feel more valued, when someone takes care of you.Focus group member, France
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 and with the views of professionals involved in caring:
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
In interviews and discussion, providers of care came up with definitions of dignity that were broadly similar to those of people using services, 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 peopleCalnan et al., 2005)
This has proved to be an influential project – especially, the ‘Four types of Dignity’ formula which has provoked extensive academic debate and analysis – see (Agich, 2007; Anderberg, Lepp et al., 2007; Baillie, 2008; Gallagher, Li et al., 2008; Jacobson, 2007) and others).
Autonomy, privacy and informed consentOpen
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 'care covenant' and the indignity of sufferingOpen
Conceptanalysis focusing on nursing care, especially the nursing of chronically ill patients, or of people near the end of life, has increasingly listed being pain-free as an important indicator of care that respects dignity, (see, for example Coventry, 2006): ' - the ultimate indignity is to suffer prematurely and unnecessarily'. This is discussed within the framework of a covenant between people giving and receiving care - an idea which is taken up by many other studies which see this reciprocal relationship and the quality of communication which it supports as key contributors to dignity in care (Woolhead et al., 2006; Webster et al., 2009; Harrefors et al., 2009).
Relationship-centred care aims to promote and maintain key 'senses' - of security, purpose, significance and so on - among both carers and cared for people. This has been developed over more than a decade by Nolan and colleagues, and has been tested in a variety of care settings for older people (Nolan, 2006). The theory and practice of relationship-centred care has interesting parallels with the development of Chochinov's dignity model, which will be discussed below in the context of palliative care.
Meanings of dignity: a summaryOpen
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, extensive research in the EU, Norway, Canada, and the USA has uncovered a number of consistent, overlapping themes, as summarised in the box.
The meanings of dignity
Research with older people, their carers and careworkers has identified five overlapping ideas of dignity:
Respect, shown to you as a human being and as an individual, by others, and demonstrated by courtesy, good communication and taking time.
- Source: Birrell et al., 2006, Davies et al., 1997, Woolhead et al., 2004, Woogara, 2005, Calnan et al., 2005, Bayer et al., 2005, (Thompson and Chochinov, 2008), (Mangset et al., 2008),
- Privacy, in terms of personal space; modesty and privacy in personal care; and confidentiality of treatment and personal information.
- Source: 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, (Skorpen et al., 2008)
- Self-esteem, identity, a sense of self and self-worth, promoted by all the elements of dignity, but also by 'all the little things’ - a clean and respectable appearance, pleasant environments - and by choice, and being listened to.
- Source: 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, (Nolan, 2006), (Calnan et al., 2006)
- Freedom from unnecessary pain, including chronic pain; recognition that pain is avoidable and treatable at all ages.
- Source: (Coventry, 2006), (Råholm, 2008), (Giordano, 2006), (Kumar and Allcock, 2008)
- Autonomy, including freedom to act and freedom to decide, based on clear, comprehensive information and opportunities to participate.
- Source: Davies et al., 1997, Randers and Mattiasson, 2004, Scott et al., 2003a, Hickman, 2004, Cloutterbuck and Mahoney, 2003, Bayer et al., 2005, (Thompson and Chochinov, 2008); (Coventry, 2006), (Boyle, 2008), (Pérez-Cárceles et al., 2007), (Holmerova, Juraskova et al., 2007), (Calnan et al., 2006)
Meaning and practiceOpen
Throughout the decade, some commentators have taken the view that difficulties of definition made an emphasis on dignity in care, at best, of limited use in practice (see Macklin, 2003, for example). More recently, Billings has suggested that the concept, used rigidly, is in danger of overriding other, important elements in end of life care. He has questioned whether, ‘dignity will elbow out our broader views of the goals of palliative care, such as treating and preventing suffering, or achieving “a good death”’, (Billings, 2008). While most would agree that dignity must not simply be the, ‘last refuge of the medical community’s values’, research into dignity in palliative care has challenged such a narrow definition.
In arguing for the usefulness of the concept, Jacobson has drawn a distinction between discussion of ‘social dignity’ –that is dignity as defined in social situations such as health or social care), and intrinsic ‘human dignity’, (Jacobson, 2007) – the ‘intrinsic dignity of human beings, discussed by the Dignity and Older Europeans project above. This division has been found useful by other researchers (Thompson and Chochinov, 2008). Agich also discusses, ‘the apparent lack of specific content in many conceptions of dignity’, while accepting that the term reflects a ‘broadly shared’ understanding in relation to the care of older people (Agich, 2007).
Others have confirmed the well-researched fact that – whatever its theoretical difficulties or shortcomings – the concept has real, important meaning for older people receiving care services in different countries and cultures. The debate, for many, has moved on to consider how dignity can be promoted, preserved, monitored and evaluated in practice (Anderberg, Lepp et al., 2007), (Gallagher et al., 2008), (Iliffe et al., 2008), (Magee., 2008).