Overview of selected research: What threatens dignity
Many of the threats to dignity take place at an apparently 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
- seeing pain as an unavoidable and therefore tolerable consequence of older age
- repeated 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 older patients or residents as real people with personalities and histories
- 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 that act as barriers to dignity in care.
Ageism is prejudice against people purely on grounds of age; and in the case of old age, may be 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 that their condition provokes (Menzies, 1977).
Ageism and the age discrimination that 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 (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.
Another national report on services for older people (Commission for Healthcare Audit and Inspection, 2006), tested them against the NSF standards, and 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 – for example, 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.’
Since 2006, the Employment Equality Act (Age) Regulations have protected people aged between 50 and 65 from being discriminated against with regard to employment and education. This legislation has had important implications for older people’s rights in relation to training and retirement, for example. It has been argued that the Regulations are a diversion from the ageism experienced by older people, since they deal with discrimination against people at any age; and some commentators have seen legislation as primarily dealing with the symptoms of ageism rather than the disease (Duncan, 2008). However, the Equality Act 2010, which received Royal Assent on 13 April, imposes a duty on all public authorities to combat unfairness of all kinds, and has been explicitly linked by ministers to combating discrimination against old age in the provision of healthcare.
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 discriminationOpen
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 that 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 mentioned above (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 race and equality advisers at the Joseph Rowntree Foundation (JRF) 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 wellbeing. 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 looked at the experiences of black and minority ethnic older people in hospital, focused on their views of dignity. The patients 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 patients 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.
- 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’.
In 2007, the Healthcare Commission’s national report on dignity in care for older people noted that, among all the small but important ways in which dignity-supportive care could collapse in the day-to-day hospital round, ‘culturally-sensitive meals were not always available out-of-hours’ (Healthcare Commission, 2007).
The nature of culturally sensitive nursing care was explored in a qualitative study which analysed the views of minority ethnic patients of all ages on the nursing care they had experienced. This identified a number of lessons for nursing training: ‘The main elements identified by participants are the need to ensure that nurses have as a starting point some basic knowledge of cultural and religious requirements, and the need to be treated with dignity and respect. This respect should extend to the acceptance of mode of dress, particularly for women.’ The challenge, say the researchers is to ensure that nurses’ education prepares them to, ‘demonstrate in practice cultural understanding and sensitivity’ (Hamilton and Essat, 2008).
The same study found that basic communication problems for minority ethnic patients persist, despite being well-known; while Gallagher and others make the point that language barriers may be a two-way issue: ‘the NHS depends on a large number of staff from outside the UK for whom English is not their first language, while the patient population also represents considerable ethnic diversity’ (Gallagher et al., 2008). Effective and respectful communication should be supported by the right training for staff, and sufficient resources such as translators and translated materials.
No secrets (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.
A consensus has emerged identifying the following main different forms of abuse:
- physical abuse …
- sexual abuse …
- psychological abuse …
- financial or material abuse …
- neglect and acts of omission …
- discriminatory abuse …
(No Secrets, p 9)
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, disrespectful and inadequate communication; target- and/or routine-driven care; unequal power relations, ageism, and racism; staff shortages and poor morale (Shore and Santy, 2004).
In 2005, a team based at King’s College London, were funded by DH and Comic Relief to undertake an extensive, national study of the prevalence of elder abuse and neglect. Their report, published in 2007, found that four per cent of people aged 66 and over, living in private households, had experienced some form of mistreatment over the previous year, involving a family member, friend, care worker, neighbour or acquaintance. This was equivalent to about 342,400 older people. The most common kinds of abuse were neglect, followed by financial abuse (Biggs, 2007).
Meanwhile, the kinds of incidents that had given rise to the guidance in the first place continue to be reported. In 2008, the (then) Commission for Social Care Inspection undertook an extensive study of arrangements in place in England to help prevent abuse, and support people who experienced it. The study found uneven progress in developing effective, local safeguarding mechanisms, and variable support for people who were abused. The best councils were succeeding through a combination of strong leadership and local strategic partnerships; but the worst were far from achieving this. No council had a systematic approach to safeguarding people who directed or funded their own support (Commission for Social Care Inspection, 2008).
This study was intended to inform the national consultation on No Secrets, launched by the Department of Health in the same year. This reflected a growing sense that the guidance was no longer fully meeting the needs of people at risk of abuse and neglect. A report on Safeguarding Adults was published in July 2009 which analyses the issues raised by the very extensive consultation, which had closed at the beginning of the year. The Government’s response, published in January 2010, highlighted a number of key messages: ‘These included that stronger national leadership was needed; that local arrangements should be placed on a statutory basis; and that revision and updating is needed to the No Secrets guidance’. A Ministerial Statement in January 2010 set out a programme of work in response to all these points.
Often linked to ageism, and arguably a form of abuse or neglect, untreated pain is a powerful threat to dignity. The significance of pain management in the care of older people will be considered in a range of contexts below. But freedom from acute or chronic pain is highlighted here because it has been repeatedly found by research to be fundamental to the ideas of dignity which older people themselves express.
Pain changes you completely… It just takes your life away. Your whole personality changes.Kumar and Allcock, 2008
This quotation is taken from a document published by Help the Aged (now Age UK), which brings together qualitative research, the personal testimonies of older people about their experiences of pain, and a summary of key literature and policy. The authors cite a wide range of evidence to illustrate the fact that older people are more likely to experience pain, to live in institutions where the experience is prevalent, to suffer from the conditions which cause pain, and to believe that pain is an unavoidable part of ageing. They are also less likely to receive adequate pain management, or to complain than younger sufferers. Many of these factors increase with age.
A review of literature of the assessment and management of pain in older people, published in 2006, concluded that, ‘the specific problems of pain management in older people [had] only just begun to be addressed systematically over the last decade.’ The researchers found that older people were less inclined to report pain, were more likely suffer from adverse reactions to pain-relieving drugs, and – for a variety of reasons – were less compliant with medication. They point out that, internationally, on current projections, older people would represent two-thirds of the ‘pain population’ by 2020 (Schofield and Reid, 2006).
Palliative sedation – controlling pain with continuous medication towards the end of life – is controversial in circumstances where it may hasten death; but ‘an additional negative effect which receives much less attention is the diminished consciousness that influences the end of life experience for both patient and family,’ (Higgins and Altilio, 2007). These authors argue that the moral and medical complexities surrounding this issue call for a very high level of expertise in enabling informed consent from individuals and their families.
In the foreword to important National Guidelines for the assessment of pain in older people, Ian Philp emphasises the centrality of dignity to work on the National Service Framework for Older People, (see, for example, Philp, 2006). He identifies, ‘the appropriate management of pain [as] essential to ensure the dignity and wellbeing of older people’ (Royal College of Physicians, 2007). It is, of course, the case that by definition, older people are likely to be closer to death than younger people. The principles of palliative care will be discussed in the next section; but the extensive work of the Hospice movement in the UK, and of Chochinov and his colleagues in Canada, to take two examples, make it clear that symptom management and pain relief are not in themselves sufficient for a dignified death. They are, however, essential.
Dignity and deathOpen
Communication about death and dying is another problem. It's a big problem because all of us are so near to death. By 90 you can't get much nearer without knowing that it's round the corner, and we need to be able to express that if we want to.Owen, T. and National care homes research and development forum (Eds) (2006) My Home Life: Quality of life in care homes - short report (1.81mb PDF file). London, Help the Aged. See also My Home Life: Quality of life in care homes - summary (130kb PDF file) and My Home Life: Quality of life in care homes - literature review (794kb PDF file)
I think we are a death-denying society, but I personally feel that death is natural, it’s time to just go, why keep prolonging it?(Calnan et al., 2006): focus group member
Care at the end of life is of concern to everybody. Yet there has been evidence that death remains a taboo subject – something to be swept out of sight (DH, 2004c). Even in palliative care, care staff would 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).
The priority given by the Government to end of life care (EoLC), dates back to the Initiative of 2003, and the subsequent NHS development programme. By 2006, the EoLC Programme could report progress in relation to training initiatives aimed at GP practices and the acute sector; and in the Preferred Place of Care scheme – a form of advance directive which provides people with the opportunity to express where they would prefer to be treated, and to die (Philp and Richards, 2006).
The aim was to provide a coordinated approach to end of life care; and this was given new impetus by the development of a comprehensive strategy, based on wide consultation, and published in 2008. The links between dignity, the management of pain and ‘a good death’ were made explicit in the strategy:
‘Although every individual may have a different idea about what would, for them, constitute a “good death”, for many this would involve:
- being treated as an individual, with dignity and respect
- being without pain and other symptoms
- being in familiar surroundings
- being in the company of close family and/or friends.’ (See DH End of Life Care Strategy (PDF file))
Dignity and end of life care
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 the people whose sense of dignity remained intact; and they 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.
Research with older people at the end of life has included a Swedish qualitative study which 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 protect against loss of dignity, and despair (Franklin et al., 2006).
A systematic review of literature on the experience of older adults at the end of life, supported by the US Department of Veterans Affairs, identified ‘six overarching elements’ which emerged from the qualitative literature:
- burden – distress at having to depend on others
- suffering – anguish and distress
- hope – sustained meaning or purpose in life
- dignity – self-esteem, respect, well-being and pride
- decision-making – planning for change and end of life
- control and autonomy. (Gruenewald and White, 2006)
The Canadian research group mentioned above, led by Chochinov has continued throughout the decade to explore and refine a ‘Dignity Model’ – an empirically-based model for identifying factors contributing to or threatening terminally-ill patients’ sense of dignity (Chochinov et al., 2006) (Chochinov et al., 2008); develop and test an approach to ’Dignity Therapy’ (Chochinov, 2006., McClement, Chochinov et al., 2007); and develop a framework for practitioners, described below (Chochinov, 2007).
The Dignity Model:
consists of three major categories including: 1) illness-related issues pertaining to bodily concerns or problems; 2) the dignity-conserving repertoire pertaining to the patient’s psychological makeup and spiritual beliefs; and 3) the social dignity inventory, referring to external influences affecting dignityChochinov, 2006
The Dignity Therapy developed by the group is based on the principle that recognising patients as people with histories and legacies to leave, promotes their dignity and reduces distress. It consists of a recorded interview, which – transcribed and edited – can be left by the patient to people of their choosing. The therapy has been positively evaluated in use with patients dying of cancer; in 2009, a multi-national team set up a Randomised Controlled Trial of the therapy with elderly people reaching the end of life in care homes in London (Hall et al., 2009).
Burden, hopelessness and the wish to die
Another Canadian team has reported on a systematic review of literature relating to what they call ’self-perceived burden’ (that is, the person’s sense that their existence constitutes a burden to others) among people receiving end of life care. They found that self-perceived burden is reported as a problem by significant numbers of terminally-ill patients in a wide range of studies: ‘It is correlated with loss of dignity, suffering and a “bad death”. [It] has also been identified as a significant factor in death-hastening acts among patients.’ (McPherson et al., 2007).
The same emphasis on ‘being a burden’ is found in studies in the UK (Calnan, Badcott et al., 2006), Austria (Pleschberger, 2007), the States (Gruenewald and White, 2006), and Japan (Hirai et al., 2006). All of this analysis argues for sensitive care, by care providers, and sensitive support for informal carers.
Chochinov has noted that, ‘the loss of will to live or a mounting desire to die may be a litmus test for quality end of life care’. The studies considered in his review identified a loss of the will to live with depression, unmanaged pain and physical distress as well a range of psychological and social factors, including, ‘hopelessness, [being] a burden to others, [a loss of] sense of dignity’. Analysis of the interaction of all the many factors he identifies is beyond the scope of this summary, but leads Chochinov to the conclusion that, ‘a mechanistic or technical paradigm is too narrow to encompass the full potential of palliative care, which aims to deliver holistic, compassionate, and medically-savvy end of life care… knowing how to provide comfort requires insight into the whole landscape of a dying patient’s experience’ (Chochinov, 2006).
A good death
Meaning’, a sense of self-worth and dignity are, almost by definition, closely linked to the care cultures of the institutions in which older people die, which in turn mirror the attitudes of the wider society to ageing and deathDwyer et al., 2008
A growing body of research has confirmed the attributes of ‘a good death’ listed near the beginning of this section. Studies also warn about being alert to important cultural and religious priorities at the end of life, (Al-Shahri, 2005; Gruenewald and White, 2006; Hirai et al., 2006; Hamilton and Essat, 2008). All the attributes of dignity considered earlier are relevant to older people as they approach death, with some additions and differences of emphasis: support and time for reflection, planning and saying goodbye to people close to them; a continued sense of having purpose and meaning in life, maintaining some control, and ending their lives in a place where they feel they ‘belong’, (Melin-Johansson et al., 2007; Pleschberger, 2007; Chochinov, 2007 and others).
End of life planning has been associated by research with advance directives (discussed briefly later in relation to the care of older people with mental health problems), which may well be seen by the older person as empowering rather than threatening, (Calnan et al., 2006). But studies also draw a very clear distinction between this, and the ‘hopelessness’, suffering, distress and depression that are associated with a wish to hasten death.