Dignity factors - Choice and control

Enabling people to make choices about the way they live and the care they receive.

If my mother was ill I would want people to remember who she was, the things she used to like to do

Control and choice in practice

Take time to understand and know the person, their previous lives and past achievements, and support people to develop ‘life story books’
Treat people as equals, ensuring they remain in control of what happens to them.
Empower people by making sure they have access to jargon-free information about services when they want or need it.
Ensure that people are fully involved in any decision that affects their care, including personal decisions (such as what to eat, what to wear and what time to go to bed), and wider decisions about the service or establishment (such as menu planning or recruiting new staff).
Don’t assume that people are not able to make decisions.
Value the time spent supporting people with decision-making as much as the time spent doing other tasks.
Provide opportunities for people to participate as fully as they can 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. For example, 'full documentation of a person’s previous history, preferences and habits’ can be used by staff to support 'choices consistent with the person’s character’. (Randers and Mattiasson, 2004).
Identify areas where people’s independence is being undermined in the service and look for ways to redress the balance.
Work to develop local advocacy services and raise awareness of them.
Support people who wish to use direct payments or personal budgets.
Encourage and support people to participate in the wider community.
Involve people who use services in staff training.

Download poster (PDF file) | Download factsheet (PDF file)

What others are doing – ideas you could use

These practice examples are self-reported and have not been evaluated.

Care Quality Commission - what the regulator says

The CQC is the independent regulator for health and social care services. They have set out Essential Standards of Quality and Safety (CQC, 2010) for all those registered to provide health and social care services. There are 28 outcomes relating to the different aspects of care provision.

What CQC outcomes say about Choice and controlOpen

These are the outcomes that relate to choice and control:

Outcome 1 Respecting and involving people - services are required to provide appropriate opportunities, encouragement and support to service users in relation to promoting their autonomy, independence and community involvement and to ensure that they are enabled to make, or participate in making, decisions relating to their care or treatment.

See all outcomes in the Care Quality Commission Essential Standards of Quality and Safety (PDF file)

Choice and control, and dignity - key points from policy and research

Choice and control are key defining aspects of dignity.
Withdrawal of respect inhibits choice and control (Dignity and Older Europeans Consortium, 2004).
Choice and control are 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 (see 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 choice and control ( Owen, 2006).
An addition to the NHS Essence of Care (384kb PDF file) benchmarking tool focuses on people making healthier choices for themselves through 'empowerment and informed choice’ (DH, 2006g).
For people with dementia, reminiscence activities and life story books may support the maintenance of a person’s identity.
People who are unable to make choices or decisions about their care due to mental impairment are now protected by the Mental Capacity Act and the Deprivation of Liberty Safeguards.

Choice and control, and dignity - policy and research in more detailOpen
Choice and control (also known as ‘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’.

Choice and control is about freedom to act, for example to be independent and mobile, as well as freedom to decide. Having choice and control 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. Putting People First (2007) outlined a shared vision for social care and radical reform. Autonomy - through maximum choice, control and power for people over the services they receive – is central to the values outlined in the paper. Information, advice, advocacy and support with decision-making, are all key to ensuring that people can exercise autonomy.

Choice and control 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). Choice and control 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 personal budgets can offer increased independence, choice and control for people using 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.

In a Swedish study (Randers and Mattiasson, 2004), the identification of 'authentic autonomy’ was found to be dependent on 'full documentation of a patient’s previous history, preferences and habits’. Patients in a US study (Jacelon, 2004) found that 'consciously reviewing their previous lives and achievements’ was a strategy that helped them to maintain a positive attitude and to 'resist the demoralising effects of their situation’. My Home Life: Quality of life in care homes (Owen, 2006) asserts that maintaining a sense of identity is key to retaining self-esteem. For people with dementia, reminiscence activity has been used for many years to reaffirm the identity of individuals based on their own personal history. Life story books are also a useful tool for those working with people with cognitive impairments.

The Older Europeans study (Cardiff University, 2001 – 2004) found that personal identity and human worth were the most often mentioned aspects of dignity. There are many components that form a person’s identity, from appearance to forms of address and, very importantly, personal history. Perhaps one of the reasons for the failure to respect dignity in care services is the failure to see the person for what they are rather than to see them in terms of their illness, condition, behaviour or disabilities. It is very important that care providers ensure that staff understand the importance of a person’s identity by ensuring time is taken to understand and know the person, their previous lives and past achievements. Over reliance on short term or agency staff may significantly undermine the development of positive relationships between staff and the people they work with.

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) and the Mental Capacity Act now gives a right to independent advocacy in some circumstances.. 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.