SCIE Practice guide 09: Dignity in care
Autonomy
Autonomy is a key factor relating to the dignity of older people and is set within the context of human rights and equality. Dictionary definitions of autonomy include: 'the power of self direction’ and 'the ability to make independent choices’. Autonomy is about freedom to act, for example to be independent and mobile, as well as freedom to decide. Control and choice over one’s life and involvement - in day-to-day living and the wider community - supports autonomy and self-esteem. For example, being given support to cook a meal will help the person to remain in control and be far more rewarding and meaningful than passively waiting for staff to cook the meal. In terms of involvement in the wider community, being supported to continue with routine daily tasks such as shopping, walking a dog or going to a place of worship, as well as involvement in community activities such as social clubs, can be instrumental in maintaining a person’s autonomy.
The issues of choice, control, involvement and self-determination are at the forefront of current government policy. Department of Health (DH) research (DH, 2005b, DH, 2006d) found that health and social care recipients value having information to make choices and decisions for themselves, and that feeling confident and maintaining control is important. The need to know about, and access, advocacy services was also raised. Information, advice, advocacy and support with decision-making, are all key to ensuring that older people can exercise autonomy.
Autonomy is particularly at risk where a person needs support to meet their most basic and private needs (Dignity and Older Europeans Consortium, 2004), during hospital stays (Randers and Mattiasson, 2004, Scott et al., 2003, Jacelon, 2004) and (due to the permanence of placements) in residential care (Hickman, 2004). Autonomy is more easily lost where people have impairments that affect their ability to communicate, including dementia. As one carer points out, this can have a detrimental effect for care workers as well as the cared for:
Careworkers who are bossy, over-controlling, or who scold or argue with people with dementia, are not only compromising the autonomy of the person with dementia, but are actually creating a situation in which resultant frustration, anger or self-loathing can boil over into resistant or aggressive behaviours or actual physical violence. By breaching that sense of autonomy, care workers can actually create a dangerous situation for themselves and others. (Barbara Pointon, carer and member of Alzheimer’s Society)
Direct payments (and in the future individual budgets) can offer increased independence, choice and control to users of social care services. It is important that people have the support they need to cope with the administrative and human resource management aspects of the schemes.
The issues raised here point to the provision of person-centred care, which can be achieved through enabling people to make their own decisions with regard to all aspects of their care. People want care that is driven by the person receiving it and not by bureaucratic systems, targets or staff priorities. A major culture shift is required to support the autonomy of people within the health and social care systems.
Key points from research and policy
- Autonomy is one of the key defining aspects of dignity.
- Withdrawal of respect inhibits autonomy (Dignity and Older Europeans Consortium, 2004).
- Autonomy is important to support the maintenance of skills, particularly in hospital (Randers and Mattiasson, 2004, Scott et al., 2003, Jacelon, 2004).
- There is evidence that the framework of rights within social care is gradually affecting standards (Research overview).
- Some of the reasons identified by staff for not maintaining dignity in care are: levels of training, staff and other shortages, lack of time and emphasis on performance targets (Calnan et al., 2005).
- Participation in day-to-day life is crucial; involvement in meaningful activity is closely linked to autonomy (Owen, 2006).
- The national minimum standards for domiciliary care require that: 'Managers and care and support workers enable service users to make decisions in relation to their own lives, providing information, assistance, and support where needed' (DH, 2003b). This includes ensuring that service users and their carers are informed about local advocacy and self-advocacy schemes.
- The national minimum standards for care homes (340kb PDF file) require the registered manager to 'maximise service users’ capacity to exercise personal autonomy and choice’ (DH, 2003a).
- An addition to the NHS Essence of Care (384kb PDF file) benchmarking tool (DH, 2006g) focuses on people making healthier choices for themselves through 'empowerment and informed choice’.
- Proposed amendments to the Mental Capacity Act will ensure that people with dementia, who are effectively detained in hospital or residential care, have an assessment of whether the placement is in their best interests.
Advocacy
The three key principles of advocacy are: independence, inclusion and empowerment.
Advocacy services form an essential part of the inter-agency framework for the protection of vulnerable adults (DH, 2000). A recent study by the Older People’s Advocacy Alliance (OPAAL) UK defined advocacy as:
A one-to-one partnership between a trained, independent advocate and an older person who needs support in order to secure or exercise their rights, choices and interests.
(Wright, 2006)
The study found that:
- older people thought awareness should be raised about advocacy
- advocacy had been used for a number of reasons: protection from abuse; combating discrimination; obtaining and changing services; securing and exercising rights; being involved in decision-making and being heard
- participants identified two sets of successful outcomes - those relating to tangible or material gains (for example, obtaining a service) and those bound up in feelings of greater confidence and self-esteem and of being better equipped to deal with life situations themselves.
Practice points
- Treat older service users as equals who are in control of what happens to them.
- Empower older people by providing jargon-free information about services at the right time and make sure it is accessible to the target group.
- Ensure that people using services are fully involved in any decision that affects their care - this should include both personal decisions on a daily basis (such as what to eat, what to wear and what time to go to bed) and decisions that relate to the service or establishment in a wider sense (such as menu planning or recruiting new staff).
- Don’t make assumptions about whether people are able to make decisions or not.
- Respect time for staff to support people with decision-making as much as other practical tasks.
- Ensure that older people have opportunities to participate as fully as possible at all levels of the service, including the day-to-day running of the service.
- Ensure that staff have the necessary skills to include people with cognitive or communication difficulties in decision-making. 'Full documentation of a person’s previous history, preferences and habits’ will support 'choices consistent with the person’s character’ (Randers and Mattiasson, 2004).
- Highlight areas where practice undermines the autonomy of older people and develop strategies to redress the balance.
- In partnership with older people, develop advocacy services locally and raise awareness of them.
- Provide support for older people who wish to use direct payments.
- Encourage and support participation in the wider community.
- Involve older people in staff training.
Ideas from practice
- Five factors of privacy (Southampton University NHS Trust)
- A reassuring checklist (Burntwood, Lichfield and Tamworth Primary Care Trust)
- On the road to independence - Betty’s story (Staffordshire County Council)
- Tapping into knowledge and experience (Westminster Children and Community Services Department, London)
- Escort duty (Bucknall Hospital, Staffordshire)
- Setting goals (Oldham Intermediate Care Team)
- Providing advocacy support (East Cheshire Advocacy)
- Peter’s story (Advocacy Partners)
- Transport with care (Lincolnshire Teaching Primary Care Trust)
Other resources
The Picker Institute’s evaluation of 'experience’ rather than satisfaction surveys includes attention to the issue of autonomy.
Link: Picker Institute: Survey information
Now I feel tall (DH, 2005b) offers practice examples on 'having information to make choices, to feel confident and to feel in control’.
Link: Now I feel tall (522kb PDF file).
Older People’s Advocacy Alliance (OPAAL) UK is an organisation which promotes the development of independent advocacy services for older people.
Link: OPAAL's development plan for advocacy services to the English regions.
Independence, Choice and Risk: a guide to best practice in supported decision making offers a range of resources and case studies relevant to anyone involved in helping vulnerable adults to take decisions, make choices, manage risks and support independence. The resource includes a Supported Decision tool.
Link: Independence, Choice and Risk: a guide to best practice in supported decision making
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