SCIE Practice guide 09: Dignity in care

Overview of selected research - Dignity in practice

Dignity in care and older people’s perceptions of it have been treated so far as if they are constant across care settings. Of course, this is not necessarily the case, and this section highlights some of the differences identified by research.

At home

For more than 20 years, the emphasis within care services for older people has been shifting away from institutions towards services provided in the home. Less than 5 per cent of older people end their lives in care homes. Not everyone needs support, of course - in 2002, more than 60 per cent of people aged over 80 in England reported no difficulties with specific activities of daily living. But many are supported in their own homes by the army of informal carers, as well as domiciliary services and home-care workers provided by the state. Very recently, traditional services in the home have been joined by 'personal assistants’, paid for by the service user from direct payments, or new individual budget schemes.

As people live longer, and more people remain at home, home-care workers are called on to support people with greater disabilities and more acute needs than they encountered in the past. Increasingly, local authorities purchase care services from the independent and voluntary sectors rather than supplying their own. Another trend has been for local services to be focused on older people with the most severe and complex needs, with limited funds available for small-scale services (Godfrey et al., 2000). All these developments should be seen within the government’s vision for adult social care services, which promotes independence, choice and control, and prevention. The proposed outcomes of implementing this vision include protection from abuse and discrimination, involvement in decision-making, access to information, and 'personal dignity’ (DH, 2005a).

An extensive review of literature (Godfrey et al., 2000) on the effectiveness and outcomes in home-care services found 'very little emphasis on the service-user and care-giver well-being’. But there was evidence from a range of surveys which showed that the qualities most valued by older people in home-care services were reliability, continuity and the quality of the relationship with the care worker. Women especially valued housework: 'having a clean home was viewed as a key factor in maintaining their sense of dignity and self-respect’.

More recently, a key finding from the Older People’s Inquiry (JRF, 2005) set up as part of the JRF Older People’s Programme in 2005 was that, 'older people value "that little bit of help” to enable them to retain choice, control and dignity in their lives, but it has become very difficult for them to secure this’. The inquiry developed a range of flexible solutions, in collaboration with older people, to the problem of unmet need, including their 'baker’s dozen’ of 13 good ideas (JRF, 2005).

A long-term study (Patmore, 2005), designed to establish the kind of home care which would promote well-being and choice among older people, has investigated the factors which contribute to person-centred care in the home. It found that the most common ungranted wish among older home-care customers was for help to get out of the house, to improve morale and mobility. Where person-centred care of this kind was being provided, it could be time-consuming, but some purchasers, providers or individual care workers were prepared to spend the time. The relationship between individual care worker and customer was very important, but the role of purchasers was critical. A focus on the needs and wishes of the individual depended on purchasers, providers and care staff all believing in 'caring for the whole person’.

Acute hospitals

The big difference between a hospital and the other contexts for care is that most patients can reasonably expect that their stay will be time-limited. Several studies have identified the way in which patients of all ages retain their dignity in hospital through 'necessary submission’ to the power of others which leaves their self-esteem intact. One interviewed patient said: 'In terms of dignity, I have been in hospital before and I know what is expected of you. You just accept what is going to happen because you want to get better’ (Matiti and Trorey, 2004). In this study, the researchers emphasise the need for care staff to understand and support patients’ adjustment to hospital activities. A study of older black women in hospital (PRIAE/Help the Aged, 2001) found the same emphasis on 'getting better’, which enabled the women interviewed to suspend their normal approach to dignity, in the interests of quick recovery.

But there is, of course, an important distinction to be made between hospital patients in general, and older patients. Mobility and other key aspects of independent living are known to suffer as result of stays in hospital and other institutions, which can be particularly difficult to reverse for older people. For this reason, studies of older people’s experiences of hospital care (Randers and Mattiasson, 2004, Scott et al., 2003b, Jacelon, 2004) often emphasise the importance of maintaining autonomy (in activities and decisions) and independence. One small study (Jacelon, 2004) identified three stages of hospitalisation: 'Although autonomy was important in each stage, it became participants’ central focus during their last phase in hospital.’ Older patients interviewed in other studies resisted attacks on their autonomy and dignity in hospital by using resilience to manage their situation and maintain their self-esteem (Jacelon, 2003).

A Swedish study of ethical nursing care (Randers and Mattiasson, 2004) identifies 'delegated autonomy’, resulting from providing patients with opportunities and information which enables them to delegate some activities and decisions to care staff. In addition, the identification of 'authentic autonomy’ - choices consistent with the person’s character - depends on full documentation of a patient’s previous history, preferences and habits, and also their mental state.

Patients in intensive care (IC) may experience an even greater assault on their dignity, privacy and autonomy. Observation of practice in two IC units (Turnock, 2001) found that the dignity of all patients was maintained in only just over one-third of cases; the remaining patients were not fully screened or covered. Perhaps encouragingly, the figures in relation to exposure improved for patients aged over 60; and by the age of 70, almost half were not exposed. Effective screening, however, declined sharply with age. Working with focus groups of staff, the researchers developed a set of remedies, and later evaluations found improvements in staff awareness and practice.

Care homes

Care homes are not temporary for residents: they are 'home’ to more than 400,000 people in England. As one article on autonomy in long-term care (Hickman, 2004) has pointed out: 'Because the long-term care setting is both a residence and a place in which health care is provided, issues of autonomy take on greater significance and complexity than in hospital settings.’

Most new residents are aged over 80, and are considerably more dependent than in the past. About four in ten residents have some form of dementia (Owen, 2006). In a recent pilot study involving nine local authorities in England, 30 per cent of reported abuse against vulnerable adults took place in residential homes, and older people were the largest group of victims (Blake, 2006).

A small study of 19 care homes, carried out in 2004 (Furness, 2006), uncovered some differences between residents’ and managers’ perceptions of abuse. Managers’ responses reflected the categories of abuse set out in 'No secrets', with the exception of sexual abuse. Of the 19 managers interviewed, 17 knew of abuse happening in either their present or previous post. When asked for examples of unacceptable practice in a hypothetical home, six of the 19 residents interviewed provided them: inadequate staff resources, ill-treatment, rough handling, poor cleanliness, dictatorial staff attitudes and inferior meals. It is impossible to make general statements based on a sample of this size, but the differences in perception, and the proportion of residents who said they would take no action if they came across abuse both argue in favour of listening more carefully and more often to what residents have to say.

The quality of life in care homes has recently been reviewed by a consortium of Help the Aged and the National Care Homes Research and Development Forum, in collaboration with older people and representatives of the care home sector. The main messages resulting from this review have been published in My Home Life: Quality of life in care homes (Owen, 2006). They include several messages which are particularly relevant to dignity in care.

• Maintaining a sense of identity is key to retaining self-esteem and a good quality of life. Person-centred care will support it.
• Residents often feel that they want to be useful, and should be encouraged to use the skills and experience that they bring to the home.
• Decision-making should be shared; and assumptions should not be made about who can and cannot give their views.

My Home Life: Quality of life in care homes (Owen, 2006) makes the point that the care home should be viewed as a community rather than a domestic, family setting. One important context in which community life can be supported is at mealtimes. Meals have also been raised repeatedly in interviews with older people, in institutions of all kinds, as an opportunity to respect or undermine residents’ dignity. Issues include:

• respect for cultural, religious and other dietary requirements at mealtimes
• presenting food in an attractive way, even for people who need puréed or chopped food
• supporting eating and drinking where necessary, but without humiliating the eater
• offering food at times and in contexts which are appropriate for adults in their own home.

A recent bulletin on meals in care homes, 'Highlight of the Day?' (Commission for Social Care Inspection, 2006), found that the great majority of care homes in the country met national minimum standards for meals and mealtimes; but nearly 2,000 did not. The bulletin calls for a positive experience at mealtimes; choice and flexibility; appetising food served in pleasant surroundings; and care to avoid hidden malnutrition or dehydration.

Care of older people with mental health problems

Research (Commission for Healthcare Audit and Inspection, 2006) suggests that at least 40 per cent of older people attending GP surgeries, 50 per cent of older general hospital inpatients and 60 per cent of older care home residents have mental health problems. Around 15 per cent of older people suffer from depression and 5 per cent of people over 65 have dementia, rising to about 20 per cent among people aged over 80 (CSIP, 2005). It is estimated that 10-15 per cent of the population aged over 65 are suffering from undiagnosed and untreated depression. Despite major government programmes and advances, mental health services for older people remain problematic. Key messages from the most recent review of progress against the NSF for Older People by the three inspecting commissions included the fact that: 'Most inspected communities were struggling to deliver a full range of integrated, good quality services to older people with mental health needs’ (Commission for Healthcare Audit and Inspection, 2006).

All aspects of dignity in care are of course relevant to older people with mental health problems, but there are additional risks and barriers facing them. In care homes, for example, food and nutrition are important issues for everyone. For a person with dementia or depression who is not given appropriate help with eating and drinking, the problem becomes critical. Abuse of older people has been found in their homes, and in care homes. But the likelihood of abuse, which has been linked to the level of 'confusion’ shown by the victim, may be even greater for dementia sufferers than for other older people. Questions of information, involvement in decision-making and giving consent are of concern to all older people. Studies of 'informed consent’ in care settings (Turnock, 2001) have found significant disagreement between the views of older people and nursing staff, with patients much less clear than nurses about the extent to which consent had been clearly obtained. For people with cognitive impairments or communication difficulties, problems like these may be especially acute.

The principle of 'geriatric consent’ has been developed, particularly in the USA, to describe a package of techniques which enable care staff working with people with dementia to take full account of their individual and personal views and preferences: it involves 'an ongoing and potentially demanding process of actively engaging the patient in any major decisions’. The aim is to take account of the patient’s long-standing values and communicate with them 'in a sensitive, respectful, unhurried manner that preserves the dignity of the person’ (Coverdale et al., 2006). Similar considerations form the basis of DH’s practical guide to seeking consent from older people (DH, 2004a), as well the Bournewood proposals (DH, 2006a) mentioned in Rights.

The extent to which people with dementia were being left behind in the development of policy and practice (designed to involve service users in individual and agency decision-making) prompted the Department of Health to fund a three-year project which reported in 2005 (Cantley et al., 2005). The project involved a literature review, a review of good practice, case studies and the development of guidance in collaboration with people with dementia and their carers, as well as voluntary and statutory agencies. Practical advice on how to involve people with dementia begins with first principles: '[involvement] should be founded on the values of personhood, relationship and citizenship, and on the principles of ethical practice’.

'Raising the standard' (Cobban, 2004), an action research project which took place between 2000 and 2002, looked specifically at how person-centred care was working for people with dementia and their carers. They found an 'under-trained, under-managed and under-valued’ workforce, ill-equipped to deal with the demands of an increasingly complex set of needs. Despite improvements to the home care available to people with dementia, resources were still not adequate to meet demand for this key service, nor to achieve a consistently high standard.

Dignity in death

Care at the end of life is of concern to everybody. Yet there is evidence that death remains a taboo subject - something to be swept out of sight (DH, 2004c) Even in palliative care, care staff will go out of their way to disguise the fact of death: 'these practices were defended on the basis that staff were protecting privacy by withholding information about the impending death from other patients’ (Street and Love, 2005).

A Canadian study (Chochinov et al., 2002a) interviewed 213 adult patients, with a mean age of 62 years, near the end of life in palliative care facilities. Sixteen of them reported loss of dignity - all of them in a hospital setting. These patients tended to be younger than those with an intact sense of dignity, and reported more distress and a stronger desire for death. 'These findings accord with previous reports citing loss of dignity as one of the most common reasons doctors offer when reporting why their patients sought euthanasia or assisted suicide.’ Patients identified dignity in a range of ways, but its importance to their sense of self and inherent worth was clear.

The same research team explored in detail the meaning of dignity with 50 patients facing death. Participants described a range of factors which helped to preserve dignity: retaining a sense of individual identity; continuing to function in roles which preceded the illness, as mother or grandparent; hope for the future however short the horizon; maintaining autonomy and control (Chochinov et al., 2002b).

These and other studies have found that threats to dignity include an 'unrecognisable’ and unreliable body, and increasing dependency/loss of autonomy. Inner strength, resilience and a sense of self-help to protect against loss of dignity, and despair (Franklin et al., 2006).

As more people live into old age, palliative and end of life care are increasingly important aspects of caring for older citizens. Restoring dignity to death has two related elements. The first concerns end of life nursing practice. This involves supporting contact with valued family and friends while offering privacy when appropriate; and helping to preserve 'a sense of self’ by controlling distressing symptoms and maintaining a pleasant environment. The importance of this environment has recently been recognised in the government’s investment of £50 million in refurbishing adult hospices (DH, 2006c). The second element relates to the need of older people to have their grief at the deaths of contemporaries and companions openly respected (DH, 2004c).

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