Overview of selected research: Dignity in practice
Frameworks for practiceOpen
Dignity in care and older people’s perceptions of it, have been treated so far as if they are constant across all contexts and care settings. Of course, this is not necessarily the case, and this section highlights some of the differences identified by research.
Nonetheless, as researchers have moved their focus from theory to practice, they have been increasingly concerned to identify a list of factors that should feature in all practice that promotes and defends dignity. One Swedish team, for example, has developed a concept analysis of the meaning of ‘preserving dignity’ as a theoretical framework for nursing older people. They describe the following as ‘attributes’ of preserving dignity:
- individualised care
- restoration of control
- sensitive listening.
They suggest that the ‘antecedents’ of preserving dignity (that is, the essential professional prerequisites) are: professional knowledge, responsibility, reflection and non-hierarchical organisation. And its consequences are: strengthening the ‘life spirit’; an inner sense of freedom; self-respect; and successful coping. There is nothing very surprising here, but the authors make the point that a framework such as this may clarify difficult issues, raise awareness, start debate and provide a basis for evaluation of practice (Anderberg et al., 2007).
Chochinov and his team in Canada have built on their work with terminally-ill patients to identify the components of dignity conserving care. The 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). Further work has led to the development of a set of principles of practice for health professionals, which, ‘while emerging primarily from palliative care, applies across the broad spectrum of medicine’. The principles comprise professional Attitudes, Behaviours, Compassion and Dialogue, and together form a framework for teaching, practising and evaluating care (Chochinov, 2007).
Care at homeOpen
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. Not everyone needs support, of course, but many are supported in their own homes by the army of carers, as well as domiciliary services and home-care workers funded by individuals or the state. In 2008, 328,600 households received state-funded home care; around three-quarters of these were people aged 65 and over. (NHS Information Centre: Community Care Statistics 2008 Home care services for adults, England (PDF file)) It is estimated that a further 150,000 people of all ages are buying care at home privately. In the second half of the decade, traditional, state-funded services in the home have been joined by 'personal assistants’, paid for through direct payments or new personal 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 have been required to purchase care services from the independent and voluntary sectors rather than supplying their own - 81% in 2008 (Wainwright, 2009). Another trend has been for local services to be focused on people with the most severe and complex needs, with limited funds available for small-scale services: ‘this year 72% of councils chose to focus their funding for social care solely on people whose needs are substantial or critical (The state of health care and adult social care in England - Key themes and quality of services in 2009 (PDF file), CQC, 2010). This development has been seen as indicating a malfunction in the Fair Access to Care Services scheme, which provided a framework for applying eligibility criteria and allocating resources. In response, Government commissioned a review of the scheme, and issued revised Guidance on determining eligibility for social care in February 2010. (See Prioritising need in the context of Putting People First: A whole system approach to eligibility for social care (PDF file)).
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’s wellbeing’. 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’.
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).
Another long-term study (Patmore, 2005), designed to establish the kind of home care that 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, in order 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’.
Although a relatively small proportion of people currently die at home, the End of Life Care Strategy 2008 (PDF file), sets out a programme of action to improve care in all settings, including:
- acute hospitals
- the community (mainly in a person’s home)
- care homes and sheltered and extra care housing
- community hospitals
- ambulance services
- prisons and secure hospitals
- hostels for homeless people.
All this evidence and policy should be seen in the context of promoting person-centred care, independence, choice and control, and prevention. The proposed outcomes of implementing this includes protection from abuse and discrimination, involvement in decision-making, access to information, and 'personal dignity’ (DH, 2005a; Philp,2006)).
The future of home care is, at the time of writing, in the balance. The needs and wishes of older people, and the ways in which care services of all kinds can support or threaten dignity in meeting them are all clear. But funding and allocation systems, which will meet the needs both of a growing elderly population and the trend to personalised care have yet to be finalised.
Care in acute hospitalsOpen
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; and maintaining the privacy and dignity of older patients with dementia may require special sensitivity and expertise (Haak, 2009). 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.
Several more recent UK studies have confirmed that all the attributes of dignity discussed earlier in this review are relevant to older people’s experience of hospital care; privacy, autonomy, identity, being respected as adults, communication and cleanliness (Calnan, Badcott et al., 2006; Matiti and Trorey, 2008; Webster and Bryan, 2009; Baillie, 2009).
Baillie’s case study of one acute hospital, involving interviews with and observation of patients of all ages and staff in a surgical ward, found that, ‘Patient dignity in hospital was found to comprise feelings, physical presentation and behaviour and can be promoted or threatened by the hospital environment, staff behaviour and patient factors’. Patients saw mixed-sex accommodation as one factor threatening to their dignity; and this theme was pursued in a subsequent analysis (published earlier): ‘Hospital patients can experience a loss of dignity if bodily exposure occurs in front of patients of the opposite sex. In mixed-sex accommodation, patients – particularly older people and women – can feel uncomfortable.’ (Baillie, 2008). Eliminating mixed-sex accommodation in all wards remains an aspiration for the NHS.
The techniques that patients use to withstand threats to their dignity in hospital – in particular, the capacity to tolerate indignity on a temporary basis – inevitably become less effective in the face of death. Despite a widely held belief that home is the best place to die, it happens relatively rarely; most people die in hospital or other care settings hospitals:
Offering patients the choice of where they would like to receive end of life care is an important feature of the national [EoLC] strategy. Research shows that approximately two thirds of people would prefer to die at home, yet the percentage of deaths at home fell from 31 per cent in 1974 to 18 per cent in 2003 and has fallen at a higher rate for those aged 65 and over, for women, and for patients with non-malignant conditions …overall, forecasts project that if recent trends continue, then by 2030 fewer than one in ten people will die at homeAddicott, 2010
Given this context, one recent study asks, ‘How is privacy, a central element of a good death, achieved in [the] public space [of a hospital ward]?’ (Porock et al., 2009). Observation of practice and staff interviews took place in an acute medical gerontology ward over a 10-month period. The recommendations emerging from this study deal with:
- communication with patients and relatives in an open ward, and the ways in which constraints on privacy undermine the dignity of the person who is dying
- the often unrecognised impact of a death on co-patients
- the practical constraints imposed by an environment unsuited to the varied needs of the patients, and to the unpredictability of death.
Care homes are not temporary for residents: they were 'home’ to more than 180,000 people aged 65 and over in England at 31 March 2008. The number of older people living in residential and nursing care homes has fallen by 4 per cent in the last year and 14 per cent since 2004. (See NHS Information Centre: Community Care Statistics 2008 - Supported Residents (Adults), England) (PD file)).
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
A small study of 19 care homes 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 (Furness, 2006), 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 was 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 were published in My Home Life: Quality of life in care homes (Owen, 2006). They include several messages that 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.
The thing that would make the biggest difference is if everyone tried to imagine how they might feel when they are my age. They might understand how frustrating it is living in the body of a 93-year-old. (My Home Life: Quality of life in care homes: testimony)
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 CSCI publication on meals in care homes, 'Highlight of the Day?', called for a positive experience at mealtimes; choice and flexibility; appetising food served in pleasant surroundings; and care to avoid hidden malnutrition or dehydration. The bulletin 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 (Commission for Social Care Inspection, 2006).
We do not expect the elderly to have anything to contribute... We think that the best way to make them feel wanted is to smile nicely, and give them 'en suite' lavatories. But, in reality, the best way to feel wanted is to feel needed.My Home Life: Quality of life in care homes (Owen, 2006): testimony
A Nutrition Action Plan was jointly published in 2007 , by the DH and Nutrition Summit stakeholders from health and social care agencies and the third sector. This includes a statement of commitment to principles of good nutrition and hydration and suggests ways of putting it into action.
A research and development project funded by the Joseph Rowntree foundation over a 20-month period from April 2006 to November 2007 explored the little-researched world of care homes at night. Three care homes in Scotland were the focus of observation, interview and analysis. The research team identified key areas of practice which were ‘requiring attention:
- management involvement in night-time supervision and practice
- the frequency and nature of ’checking’
- noise levels
- light levels
- staff understanding and response to people with dementia
- staff understanding and response to issues around incontinence
- the physical environment
- relationships between day and night staff’.
The analysis was followed by an action research phase, which tested solutions to the problems identified. The report of the study concludes with a plea for ‘more rigorous, policy-driven interventions and guidance’ on night-time care (Kerr, 2008).
The particular issues surrounding the care of older people with dementia will be looked at in the next section. But all older care home residents are approaching death, and the need for expert and sensitive end of life care has been recognised by research and policy. In 2007, the national End of Life Care Programme reported that there had been a rapid take-up of end of life care models and tools by care homes since 2005, but that challenges remained. One of these was the, ‘pattern of dying’ among care home residents which differed from the ‘traditional, cancer/palliative care pattern’ (Care and Programme 2007). The same difficulty in pinpointing the likelihood of death was noted above in relation to acute sector staff, and has obvious implications for training.
Another challenge for care home providers lies in their access to and capacity to collaborate with a range of other organisations and services that can support their end of life practice. One recent study of care homes with nursing commented, among many recommendations, that ‘Although this exploratory study has helped begin unravel the complex web of the wider system surrounding nursing homes, much more work is needed to enable integration of nursing homes into the wider systems of end of life care and to enable collaboration across organisational, institutional and funding boundaries’ (Seymour, 2008).
Care of older people with mental health problemsOpen
Recent reports and research have highlighted the shortcomings in the current provision of dementia services in the UK. Dementia presents a huge challenge to society, both now and increasingly in the future. There are currently 700,000 people in the UK with dementia, of whom approximately 570,000 live in England. Dementia costs the UK economy £17 billion a year and in the next 30 years, the number of people with dementia in the UK will double to 1.4 million, with the costs trebling to over £50 billion a yearDH: Living well with dementia - A National Dementia Strategy
This was in response to mounting evidence, collected throughout the decade that, despite major programmes and advances, mental health services for older people remained problematic. One action research project that took place between 2000 and 2002, Cobban, (2004), 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. In 2006, the 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. There are the obvious, practical consequences of cognitive impairment, which increase risks to the person. Without sensitive and consistent support, serious harm can be the result. 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.
There are also subtler risks associated with the stigma attached to the condition compounded by ageism. 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. One recent study focused on the behaviour of family carers of people with dementia. It found that one third of the carers surveyed reported, ‘important levels of abuse, and half – some abusive behaviour.’ Verbal abuse was most commonly reported (Cooper, 2009).
Questions of information, involvement in decision-making and giving consent are of concern to all older people, and have an impact of their dignity and wellbeing which goes beyond simply being informed. 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 will be especially acute: see, for example Living and Dying with Dignity: the best practice guide to end of life care for people with a learning disability (Read, 2008).
‘Restraint’ in any setting can be a dramatic indicator of unequal power relations. Applied to adults in care settings without adequate therapeutic justification, it underlines and increases vulnerability, labels incapacity and humiliates. Nonetheless, in the recent past, ‘restraint’ has widely been found to be an acceptable solution to the tendency of people with dementia to ’wander’. SCIE’s recent review of selected literature about restraint in care homes for older people (including chemical restraint) identifies the ways in which it is justified and used, and presents examples of alternative practice. The author comments that very little is actually known about what happens in practice in the UK and that, although restraint education is valued for ethical reasons… the direct impact on older people of using alternatives to restraint is not easy to demonstrate’ (Qureshi, 2009). A report of a small study which followed this review describes the challenges facing staff, and the need to balance risks and rights in sensitive practice (Owen, 2009).
Qureshi comments that the history of restraint may demonstrate, ‘the over-generalisation of solutions to genuine problems’, so that something that works well in one situation becomes ‘the answer for everyone’ (Qureshi, 2009). Something similar may be happening in relation to tube feeding patients with dementia. Patients with advanced dementia often have difficulty eating or lose interest in doing so; a solution for some, after assessment and discussion may (rarely) be tube feeding. The recently-published practice guide on Oral Feeding Difficulties and Dilemmas, developed by a multi-disciplinary working party, reviewed the research evidence and found little for dementia sufferers in general, and none for people with advanced dementia: ‘It is of concern that so many new patients are being given tube feeding and raises the question as to whether informed discussion can have taken place’ (Royal College of Physicians and British Society of Gastroenterology 2010).
The extent to which the dignity of people suffering with dementia is vulnerable to attack from routinised, insensitive or discriminatory practice is clear. The protection offered by person-centred care is especially important for this group, and practice guidelines emphasise careful assessment of the needs of the individual. Non-verbal assessment tools involving observation of behaviour and physiological change have been used to assess pain or distress in elderly people with dementia (Zwakhalen, Hamers et al., 2006; Royal College of Physicians, 2007).
Some commentators have pointed out that – at present – dementia can only end in death, and this fact, coupled with the disability and distress which the disease can create, causes some commentators to recommend a palliative care approach to managing advanced dementia (Roger 2006; Volicer 2007): the ‘goals of care … can be defined as quality of life, dignity and comfort (Ostgathe et al., 2008)
The rights of elderly people with dementia, or those who are otherwise unable to make their own decisions (‘lack capacity’), have been substantially increased by the provisions of the Mental Capacity Act 2005. The MCA provides for independent advocacy support and makes it an offence to ill-treat or neglect someone who lacks capacity. It also sets out the terms in which an individual may make binding advance decisions to refuse treatment (in the event that they lose capacity). A review of literature on advance care planning, which underpins the professional guidelines issued by the Royal college of Physicians in 2009, found that the majority of people were happy to discuss advance planning when their condition is stable, and that such a discussion can increase patient satisfaction (British Geriatrics Society et al. 2009). These positive developments should be clearly distinguished from continuing debates about ‘assisted suicide’ (CPS: Policy for Prosecutors in respect of Cases of Encouraging or Assisting Suicide (PDF file)), and euthanasia; (The Director of Public Prosecutions recently issued revised Guidance for Prosecutors in relation to assisted suicide.)