SCIE Practice guide 09: Dignity in care

Overview of selected research - What protects dignity?

Resilience

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.

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.

Rights

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of these rights, and increased insistence on them by service users, as the best way to overcome embedded systems and outdated attitudes. They include the following:

The Human Rights Act 1998, which incorporates the European Convention on Human Rights into English law, protects all citizens from action by public authorities which threatens 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) Independent care providers are not subject to the Act, but when care is purchased from an independent provider on behalf of an older person by a council, it has the duty to guarantee the person’s human rights (for example, by monitoring the contract) (High Court of Justice, 2006).

• Older people with mental health problems have the usual protections provided under general Mental Health legislation (currently waiting for amendment), and questions of 'capacity’ are covered by the Mental Capacity Act 2005. Proposals have been published for strengthening the rights of people in hospitals or registered care homes who suffer from dementia or profound learning disabilities, which the 'Bournewood’ case raised (DH, 2006a) by amendments to the Mental Capacity Act. Under these proposals, whenever hospitals or care homes find that a person who cannot argue for themselves is being effectively detained, or is at risk of it, they must apply for permission for the current treatment programme to continue and demonstrate that it is in the patient’s best interests. The agency which controls permissions will arrange for assessors to establish what is in the patient’s best interests, taking account of the patient’s and their carer’s views. Where a patient has no representative to ensure that the recommendations of the best interests assessor are carried out, an independent advocate will be appointed.
• Regulations made under the Care Standards Act 2000 protect the privacy and dignity of older people receiving care in their own homes or in care homes, for which there are national minimal standards (340kb PDF file) (DH, 2003a) and they are protected from abuse by the Protection of Vulnerable Adults Scheme (DH, 2006b).
• From October 2007, the Commission for Equality and Human Rights will have the duty to combat age discrimination, made under the Equality Act 2006.

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).

Person-centred care

Person-centred care - care which empowers, includes and puts the individual needs and aspirations of the service user 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 service users. 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 government 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’. The table below shows the factors which 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 practice guide feature in the table.

Benchmarks for privacy and dignity

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 (see ideas in practice) (McIntyre and Woodruff, 2006).

Another study (Innes et al., 2006), involving a literature review as well as consultation with discussion and focus groups of service users (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 service users and staff from black and ethnic minority backgrounds by language and cultural factors as well as discrimination.

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