SCIE Practice guide 09: Dignity in care

Overview of selected research - What threatens dignity?

Many of the threats to dignity take place at a small-scale, practical level. These can involve, for example:

• treating adults 'like babies’ because of actual or assumed incapacity - giving them mashed food, insisting on early bedtimes, using patronising tones of voice
• apparently small slights such as the imposition of leisure activities that imply a low intellectual level
• care which treats people as objects, or language which labels them as 'conditions’ or problems
• poor environments and dirt
• never stopping for a conversation, or taking time to get to know service users as real people
• disregarding grief at bereavement among very old people, who see their circle of friends, relatives and companions shrink.

Older people raised all of these with researchers as factors undermining dignity.

Some of these certainly have their roots in the quality of management, training, supervision and leadership. Remedies have repeatedly been suggested which emphasise these factors. But some commentators (Macdonald, 2001) have seen the need for deeper analysis and more fundamental change. Increasingly, research and policy has begun to focus on the nature of society and on a series of interrelated factors which act as barriers to dignity in care.

Ageism

Ageism is prejudice against people purely on grounds of age - based on what one psychologist (Nelson, 2005) has called 'fear of our future self’. Despite age being the third automatic common category into which we slot strangers (the other two are race and gender), relatively little is known about the origins of ageism. The tendency to view a patient as less than human has been identified with a need to defend oneself against the anxiety which their condition provokes (Menzies, 1977).

None the less, ageism and the age discrimination which follows from it were becoming common features of access to some NHS treatment and social care during the late 1990s. Older people might be refused treatment or care which a younger person could expect because of a number of factors, including:

• tight budgets, leading to locally defined systems of 'rationing’ according to age

• embedded routines with discriminatory effects, including ways of defining the benefits of a particular treatment (for example, quality-adjusted life years (Sayers, 2002, King's Fund, 2000)
• ageist attitudes which might, for example, lead care managers to assume that a 'more restricted kind of life’ was suitable for anyone over 65.

In the National Standards Framework (NSF) for Older People’s (2001), the government announced its determination to 'root out age discrimination’. Formal barriers to NHS treatment based on age were removed; procedures followed by the National Institute for Health and Clinical Excellence (NICE) were amended to ensure that access to treatment should be based on individual need rather than age; and 'older people’s champions’ were appointed to defend the rights of older people in a range of contexts, including the NHS. A review of progress in 2004 (DH, 2004b) found evidence of changing attitudes and practice. Older people’s access to non-urgent care as well as treatment for heart conditions and for cancer has been transformed since 2001, and older people’s involvement in activities designed to prevent disease has grown.

More recently, a national report on services for older people (Commission for Healthcare Audit and Inspection, 2006), tested against the NSF standard's, also found good progress but some remaining unacceptable weaknesses:

• explicit age discrimination is less common except for mental health services for older people
• poor treatment related to ageist attitudes was reported by some respondents
• some service gaps affect older people disproportionately, e.g. transport and dental care
• the impact of older people’s champions is difficult to assess
• a good range of services is less likely in rural areas
• diversity issues are only just being tackled in relation to older people’s services.

Despite marked changes for the better in relation to explicit age discrimination, the report notes

evidence of ageism among staff across all services. This ranges from patronising and thoughtless treatment from staff to the failure of some mainstream public services [reflecting a] deep-rooted cultural attitude to ageing, where older people are often presented as incapable and dependent …’

Perhaps most seriously of all, the three inspection commissions found that 'one of the reasons why some people said they would not complain was the fear that this would affect the treatment that they or their relatives received. This fear was highlighted repeatedly in the inspections.’

A bald statement of what ageism is does little to convey the impact that ageist attitudes and practice can have on older people. It contributes to the sense of being treated as 'nothing’, as one study participant described it. It undermines resilience, attacks self-esteem, promotes despair, and increases the climate of fear. All of this argues for much further effort.

Inequality, disadvantage and discrimination

The effects of ageism and age discrimination may be multiplied in a range of ways which reflect society’s approach to individuals’ characteristics and the impact that these have had on their lives. These include social class, gender, relative poverty, ethnicity, physical and learning disabilities and sexual preference. Older people, like all people, may encounter prejudice, discrimination and exclusion because of any of these factors. They may confront old age already suffering from disadvantages which threaten their sense of autonomy and self-esteem. Or they may simply encounter service providers who are unable to understand or fully meet their needs.

The inspection (Commission for Healthcare Audit and Inspection, 2006) also reported that more work is 'required to ensure that older people from black and minority ethnic groups receive services which are culturally sensitive and responsive to their needs’. In 2004, the Joseph Rowntree Foundation’s race and equality advisers organised a series of meetings with black older people in Leeds, Bristol and London, as part of JRF’s Older People’s Programme. The aim was to review with them existing research on black older people, and discuss future work: 'It was an uncomfortable fact, but mainstream services and mainstream society were still seen by the older people in the groups as being both ageist and racist. They said it was impossible to ignore this fact … ’ (Butt, 2004).

An initial review of literature by the Joseph Rowntree Foundation had established what research had found about older people from black and minority ethnic groups: their increasing numbers and proportion in the population; their considerable health and social care needs; their relatively low knowledge and use of services; their relative poverty and poor housing; and myths about the extended families who will care for them when necessary. Cultural differences and needs were not met by mainstream services - including basics, such as food - but also religious beliefs and practices, and views on health and well-being. At the same time, older people from black and minority ethnic backgrounds shared the barriers and problems confronting all older people.

One small study (PRIAE/Help the Aged, 2001) which had looked at the experiences of black and minority ethnic older people in hospital focused on their views of dignity. The service users and the managers responded to direct questions about dignity with definitions that were similar to each other, and similar to definitions found in studies already discussed:

• being treated equally and with respect
• being listened to
• self-respect, 'honour’ and appropriate care
• privacy, dignity in personal care, and single-sex wards.

But the priorities listed by these service users in terms of barriers to dignity were not identical with those found in studies of the general population:

• Food came top of their list - not just food preferences, but also the hospital’s difficulties in providing special diets.
• Communication was another priority, made acute by the lack of interpreters, and the apparent inability of staff to cope with 'ethnic’ accents or forms of speech.
• Staff insensitivity and racism came next, especially in relation to religious needs, and coupled with the more common complaint about respectful forms of address.
• And finally, bureaucracy, staff shortages and poor standards of care were all listed as contributing to the sense that the patients’ dignity was at risk.

A study of quality of life and well-being among older women from a wide range of backgrounds, part of the Economic and Social Research Council’s Growing Older Programme (Afshar et al., 2002), found that health was the most important issue, with the corollary that 'services need to be ethnically, religiously and linguistically sensitive’. It concludes that 'good policy and practice would build on what women themselves see as significant in enhancing life quality’. The study argues for very detailed analysis of what this means for different groups in the population. This included subgroups of the white population, since 'in multi-cultural settings, disadvantaged white non-migrant women can be excluded from the consultation process if it assumed that white people are homogeneous’.

Abuse

No secrets (158kb PDF file) (DH, 2000), the guidance from the Department of Health about the protection of vulnerable adults from abuse, defined key terms and established multi-agency procedures: Abuse is a violation of an individual’s human or civil rights by any other person or persons.

The guidance was developed in response to the growing sense that abuse of vulnerable adults - including, importantly, older people - was a largely hidden and under-reported but none the less important issue in health and social care. Many of the themes which emerged from the research and stimulated debate about abuse have already been mentioned as threats to dignity in care: labelling and disrespectful, inadequate communication; target- and/or routine-driven care; unequal power relations, ageism, and racism; staff shortages and poor morale (Shore and Santy, 2004).

A Health Select Committee inquiry (House of Commons Health Committee, 2004) three years later commented that the term 'abuse’ covers 'an extensive continuum, extending as far as criminal activities’. The DH general definition was widely accepted by the multi-agency teams working locally to combat abuse, indicating that it chimed with what practitioners had found on the ground.

Issues raised by the select committee - the unknown prevalence of elder abuse, the collection of data, and the definition of a performance indicator - were all considered in a study by Action on Elder Abuse (Blake, 2006). This two-year project, funded by DH, has recently reported. The recommendations to the government, based on the study, include:

• establishing a national collection of data on protection of vulnerable adult referrals
• introducing a performance measure based on reduction and elimination of risk
• introducing a statutory framework for the protection of vulnerable adults.

Although the definition of vulnerable people in 'No secrets' (158kb PDF file) was felt to be problematic in some respects, it was used for the study. In welcoming the report, the government announced the allocation of additional resources to support further action against abuse.

Meanwhile, the kinds of incidents which had given rise to the guidance in the first place continue to be reported from time to time. In 2005, Skills for Care introduced a compulsory social work training module on abuse and neglect. The joint inspection commissions’ review of progress against the NSF for Older People found that, although multi-agency arrangements for safeguarding older people, 'operated successfully in most areas … there is still room for improvement’ (Commission for Healthcare Audit and Inspection, 2006). They identified increased awareness among care staff of how and when abuse and neglect could occur as a critical area for further development.

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