Overview of selected research: What protects dignity
Studies have found that the inner strength and resilience of many older people enables them to bear situations which others might find challenging or disabling. Researchers in Sweden (Franklin et al., 2006) interviewed a group of very elderly people (aged 85+), living in nursing homes and nearing the end of life. Taped conversations based on questions about the residents’ past and present lives, and views about their future revealed three consistent themes. The first two related to very negative aspects of their situation: 'unrecognisable’ bodies, and dependency or fragility. Both undermined their self-respect and dignity, often as a result of the attitudes of others.
When I lost my hearing, people started to ignore me. They didn’t treat me as a human being any more and then when I lost my eyesight, there was nothing left. They never have time for us here, not even to say a word: it’s like we are nothing.Study participants
But the third theme demonstrated that a sense of self-worth, coherence and meaning was strongly maintained by many of the older people despite the sometimes grim aspects of their daily lives. References to their families and their previous lives, a focus on small pleasures, and finding ways of 'being needed’ all helped. Other people – especially family members, but also key staff – reinforced this strength, and enabled them still to enjoy life.
Research with older people who were admitted to acute hospital care in the USA (Jacelon, 2003) also found that they developed strategies for resisting the demoralising effects of their situation. These involved maintaining a 'positive attitude’; managing how they appeared to staff – for example, by deliberately 'not bothering the nurses’; and supporting their sense of worth by consciously reviewing their previous lives and achievements.
These and other studies make the point that resilience can be reinforced or undermined by the practice of health and social care workers; and that the existence of this quality in older patients should not be used as a reason for underestimating the very real threats to their self-esteem and well-being in some care settings.
Another Swedish study, involving interviews with people aged over 75 who knew they were approaching the end of life, broadly confirmed the themes outlined above. But in addition, it found that, ‘the last phase of life in old age meant turning inwards, reflecting on the entire life as a way to reach peace’ (Andersson et al., 2008). The implications of dignity for end of life and palliative care will be considered more fully below, but it is clear that for these people, part of the quality described above as ‘resilience’ enabled them to preserve their sense of self-worth, and the meaning of their lives in face of the challenge of death.
Older people receiving care at home, in hospital or care homes have a wide range of rights, and some analysts (Townsend, 2006) see the enforcement of these rights, and increased insistence on them by people who use services, as the best way to overcome embedded systems and outdated attitudes. They include the following:
The Human Rights Act 1998 (HRA), which incorporates the European Convention on Human Rights into English law, protects all citizens from action by public authorities that threaten their fundamental freedoms. These include freedom from 'degrading’ treatment, which affects the person’s human dignity (Article 3), and from arbitrary detention (Article 5). Article 8 also protects a person’s private life, including 'his home and correspondence’. Although 'human dignity’ is not explicitly mentioned in the Convention, the High Court has held that it is implicit in almost every one of the Convention’s provisions (High Court of Justice, 2003).
In the second half of the decade, debates about the care of the elderly increasingly appealed to the language of the HRA; and in 2007, the Parliamentary Joint Committee on Human Rights took the situation of elderly people as the focus of their Eighteenth Report, The priority, they concluded, was, ‘to develop greater understanding of the application of the HRA to older people’s healthcare’. Voluntary organisations developed materials which would promote awareness and use of the Act amongst the general public, and older people in particular : see, for example, material published by the British Institute of Human Rights (Matthews et al., 2008). Following public pressure and debate, the Act was amended in 2008 to extend its protection to elderly people who live in private and voluntary sector homes, and whose care is paid for by the local authority.
The Mental Capacity Act provides the legal framework for decision-making when a person may lack capacity to make decisions themselves. This provides a range of safeguards including access to the Court of Protection to challenge decisions and the availability of Independent Mental Capacity Advocates in some situations for people who don’t have family or friends who can represent them. Other safeguards for people with mental health problems are as follows:
- There are additional safeguards to protect people from being unlawfully deprived of their liberty. An example of this could be a person being kept in a care home against their wishes and those of a family member. The Deprivation of Liberty Safeguards aim to ensure that people are not subject to significant restraint or restrictions in care homes or hospitals without the appropriate authority.
- Older people with mental health problems who are subject to the Mental Health Act have the protections afforded by that legislation. This includes the powers of the nearest relative, the availability of Independent Mental Health Advocates, and access to a Mental Health Review Tribunal.
The rights of older people receiving health and social care services to safe, fair and high-quality provision are supported in a number of ways:
- Standards reflecting a new approach to quality and safety in health and social care, were published by the Care Quality Commission in December 2009. These are part of a new registration system for care providers, designed to ‘make sure that services to meet essential standards of quality and safety that respect their dignity and protect their rights’. (See CQC: Essential standards of quality and safety (PDF file))
- From October 2009, the Vetting and Barring Scheme began to register the workforce to prevent unsuitable people from working with ‘vulnerable adults’. No Secrets, statutory guidance on the safeguarding of adults, is currently under review (see below).
- From October 2007, the Commission for Equality and Human Rights has had the duty to combat age discrimination, made under the Equality Act 2006.
- In 2010, the Law Commission launched a consultation paper that makes proposals for rationalising and updating the current legal framework for adult social care. ‘Dignity in care’ features among the possible ‘statutory principles’ which might underpin consolidated legislation. Views are sought from a wide range of professionals, from carers and people using services, and the general public. (See The Law Commission: Consultation Paper No 192 - Adult Social Care (PDF file))
There is evidence that older people – especially the very elderly – may not be aware of these rights (Harding, 2005); advocacy may have an important part to play here (Wright, 2006). Many care staff also remain unaware of them (Woogara, 2005). But inspection and research have also found that the framework of rights is gradually having some impact on standards of care, and next and subsequent generations of older people may increasingly demand them (Woolhead et al., 2004, Stratton and Tadd, 2005).
The person, at the centreOpen
‘Acknowledging patients as whole persons is one of the most ardent predictors of dignity’ (Chochinov, 2006)
Person-centred care – care that empowers, includes and puts the needs and aspirations of the individual at the centre of planning – has been the subject of much policy, research and comment. Person-centred planning was first identified with the reform of care for people with learning and physical disabilities in North America, and has gradually been adopted for other groups of people. Some of its principles appeared in community care policy in the UK as early as 1989 (Dowling et al., 2006). More recently, it has been linked to debates about choice and quality in the NHS; about direct payments and individual budgets as a means of supporting people with a range of care needs; and about the promotion of dignity, privacy, respect and autonomy throughout the care system.
Putting the commitments about person-centred care made in law and policy statements into action has involved campaigns to change practice, change attitudes and promote new ways of working. One of these – Essence of Care (384kb PDF file), launched in 2001 and revised two years later (DH, 2003c) – was intended to embed good person-centred practice in the care of NHS patients. It is organised around ten key themes or 'benchmarks’. During 2009, the DH launched a consultation on a proposed new benchmark in relation to the management of pain. (See DH: Essence of care - a consultation on a new benchmark on pain).
The table below shows the factors that were identified as important, in consultation with patients, carers and professionals, when it comes to privacy and dignity. Although designed mainly for use in the NHS, many of the aspects of dignity in care generally discussed in this guide feature in the table.
Benchmarks for privacy and dignityOpen
Factor Benchmark of best practice Attitudes and behaviour Patients feel that they matter all the time Personal world and personal identity Patients experience care in an environment that actively encompasses individual values, beliefs and personal relationships Personal boundaries and space Patients' personal space is actively promoted by all staff Communicating with staff and patients Communication between staff and patients takes place in a manner which respects their individuality Privacy of patient -confidentiality of patient information Patient information is shared to enable care, with their consent Privacy, dignity and modesty Patients' care actively promotes their privacy and dignity, and protects their modesty Availability of an area for complete privacy Patients and carers can access an area that safely provides privacy
Privacy = freedom from intrusionDignity = being worthy of respect
From Essence of Care (384kb PDF file), 2003
Research into the extent to which the dignity benchmarks were being met in three NHS hospital wards in 2002 (Woogara, 2005) found that they were not met by health professionals, and the 'little things’ which would protect the patients’ privacy and dignity were often forgotten.
Another article (Birrell et al., 2006) reports on a privacy and dignity project launched at a major NHS hospital – Addenbrooke’s – in 2001, led by the palliative care team. Patient and staff views on privacy and dignity were collected by interview and questionnaire, followed by 'specific and prompt’ action. For example, when patients identified that they preferred being wheeled to the toilet rather than using commodes, more wheelchairs were purchased. This enabled staff and patients to see that their views were being acted on, and that the team produced tangible outcomes.
The project led to the development of a local guide, which translated patients’ worries about privacy and dignity into practical and detailed instructions for care staff. The guide was expanded and extended throughout the trust and five years later, the project is still under active review and development. Locally defined Addenbrooke’s Standards for privacy and dignity, linked to the Essence of Care benchmarks, were agreed in January 2005, and formed the basis for a practice audit later that year. The audit found much good practice, but also specific areas for improvement, which led to a range of recommendations and the development of targeted projects within the hospital (McIntyre and Woodruff, 2006).
Another study (Innes et al., 2006), involving a literature review as well as consultation with discussion and focus groups of people who used services (including older people), focused on the role of frontline workers in promoting a person-centred approach to community care services. It found a number of barriers in the way of person-centred care including: increasing bureaucracy, tighter budgets and restrictive commissioning leading to limited staff time for flexible, personal care; poor and inconsistent management, and a mixed picture on training. These barriers were made even worse for people using services and staff from black and ethnic minority backgrounds by language and cultural factors as well as discrimination.
A current King’s Fund programme, The Point of Care, aims to improve all hospital patients’ experience of care, and has adopted a definition of person-centred care based on one developed by the US Institute of Medicine (PDF file) in 2001. One focus of the project has been the exploration of ‘compassionate’ care, based on empathy, respect for the individual and honesty.
Self-directed support has featured as part of the government’s ‘personalisation’ agenda for more than a decade. First through the Direct Payments Scheme, and subsequently through personal budgets, people in need of services have in principle been able to use allocated funds to secure personally-tailored care. A major evaluation of the introduction of Individual Budgets at 13 pilot sites in England, published in 2008, found that the elderly were underrepresented among people taking advantage of the new scheme (Evaluation of the Individual Budgets Pilot Programme (IBSEN) (PDF file), 2008).
Guidance produced by DH in the same year commented that:
The evaluation reports that older people did not benefit across the pilot in the same way as the other groups. They were less likely than others to report higher aspirations as a result of the individual budget process and people in the individual budgets group reported lower psychological well-being. The qualitative interviews suggested that many people and their carers interviewed for the pilot did not want the additional burdens that they associated with planning and managing their own support.DH: Making personal budgets work for older people: developing experience (PDF file)
A review of literature commissioned by DH on ageism and age discrimination in social care in the UK (Clark, 2009) found that older people were being excluded from funding by the local operation of Fair Access to Care Services, which determined eligibility and discriminated against people directly by the allocation of differential rates of support, according to age. In October 2009, the Association of Directors of Adult Services published a Common Resource Allocation Framework (PDF file). This was designed, amongst other things, to establish principles of fairness and transparency in the allocation of budgets, and eliminate discrimination in resource allocation on grounds of age.
Take-up of personal budgets among older people is now increasing, and is likely to do so further if the principle is extended into health care provision, on the completion of the current pilots in 2012 (Personal health budgets update (PDF file)). A recent article in The Guardian suggested anecdotally that, with proper support, older people are using the budgets to restore parts of their personal lives that were gradually being lost, and to regain the sense of control that is a fundamental element in dignity. (See The Guardian: Boost for 'cost-effective' individual budgets)