A dignified life
An important part of dignity is ‘propriety’ – a sense that things are done properly, decently, in a way that is sensitive to the person’s culture and beliefs. Respecting them is fundamental to a good, dignified life.
Privacy, politeness, good communication, openness and candour, warmth and kindness all contribute to a person’s sense that who they are is properly understood and reflected in their day-to-day treatment. Identity, resilience and autonomy are all attacked by practice that ignores these feelings. A human rights approach to social care, personalisation in practice and respect for protected equality characteristics all call for propriety. These are big issues.
All the ‘little things’
Self-esteem, identity, a sense of self and self-worth are promoted by all the elements of dignity, but also by “all the little things” – a clean and respectable appearance, pleasant environments – and by choice, and being listened to.Research overview, Dignity in Care (SCIE, 2013)
Research has frequently found that people also identify propriety with ‘all the little things’. We spoke about how the ‘little things’ can support or attack a person’s identity in Recognising the individual to promote dignity in care. In this section we will talk about how these little things help improve a person’s environment – the furnishings, arrangement and décor – and how they support feelings of self-respect and demonstrate how a specific person wants to live.
When someone uses adult social care services, they’re at once in a potentially vulnerable position. In a service that does not take a sensitive, person-centred approach to care, their choices and preferences can very easily be ignored or overruled in the name of ‘risk’ or ‘lack of time’. Daily, small defeats for their personal dignity can lead eventually to despair.
Intimate, personal care is one obvious context in which a particularly sensitive approach is needed.
The possibility of humiliating somebody doesn’t stop at the bathroom door. Any issue relating to bodily functions has the same potential to distress and ‘shame’ the person.
Listen to this account from Patient Voices of how important the right kind of incontinence support was for this woman towards the end of her life.
Another sensitive area is sex. We looked at this in Freedom to choose, from the point of view of autonomy and choice. To summarise, we said that while acceptance of consensual sex between an older heterosexual adult and their existing or new partner may be growing in residential care, this is not true of every care setting.
There is evidence that the right of people with dementia to sexual expression is resisted. People with physical or learning disabilities in supported housing may well find that their autonomy stops short of intimate relationships.
There is also evidence that disabled men and men living with long-term, disabling conditions were traditionally seen as somehow ‘without gender’ and therefore without the need for (or right to) sex.
When I visited Jean in the care home, she was always sitting in the main lounge with other residents. This made it more awkward for me to hold her hand or give her a cuddle. I didn’t feel confident enough to ask the staff to move her to her own room so we could be alone for a while.Hannah, quoted in Safe to be me (Age UK 2017)
I felt like I was in a goldfish bowl with all eyes and ears on us.
Recent research has highlighted the need
… to deliver a more person-centred approach … which recognises the importance of the social and sexual lives of men.Men with long-term conditions (Wiley, 2015)
Demanding your rights is not always easy, and Hannah – ‘with all eyes and ears’ on her and her partner – certainly didn’t have the confidence to do so. Leadership, training and sensitive practice would have saved this couple’s dignity.
Faith, religion and spirituality
This is another set of issues that can easily fall into the ‘too-difficult-to-talk-about’ box. Search on the internet and you’ll find that these topics are seen as having some obvious connections to adult social care. These include:
- care at the end of life
- the growing ethnic and religious diversity of the adult care population
- the ‘spiritual’ value of music, art and the natural world to people living in residential care homes (especially people living with dementia), and
- the potential for faith groups to fill gaps in social care provision.
All of these are relevant but, taken alone, miss the bigger point.
Any religion will form a core part of the identity and values of the individual believer in every aspect of their life. Their wellbeing and resilience may well be undermined if they live in a place where religion is another thing you don’t generally admit to. This has led to calls for ‘religious literacy’ in social care, in a country which is both increasingly secular and increasingly multi-faith.
Pain – especially chronic, avoidable pain – is another enemy of dignity
Pain attacks a person’s independence, their sense of self-worth, their wellbeing and resilience. It can create anxiety, distress, anger and despair. It may not be recognised; behaviour arising from pain may be put down to ‘frailty’, ‘confusion’ or just plain old age. People living with dementia are particularly at risk of being overlooked.
The SCIE video highlights:
- the different ways in which people experience pain
- the usefulness of alternative therapies, as well as medication
- the importance of assessment
- communication – particularly for people living with dementia or learning disabilities.
In 2016, NHS England launched a report including a framework for enhanced health in care homes. This was in response to evidence that many people in care homes were not receiving the care and treatment they needed, and were entitled to. Too many unnecessary and unplanned admissions to hospital were a powerful indication that assessment in the home, and collaboration with local health services, were not working well.
The framework was intended to tackle the fact that ‘[i]n many parts of the country, the care for people who are living in care homes or who are at risk of losing their independence is being held back by a series of care barriers, financial barriers, and organisational barriers’ (NHSE 2017).
These barriers have led to a history of unequal treatment for residents in care homes. Comprehensive guidance and learning from six vanguard (demonstration) sites are aimed at removing them.
Over to you
What are the possible consequences of ignoring or failing to identify the pain experienced by people who use social care services?
What kinds of practice will protect people, and ensure that their needs are met?
These barriers have led to a history of unequal treatment for residents in care homes. Comprehensive guidance and learning Enhanced health in care home vanguards are aimed at removing them.
What does the CQC look out for?
How are people supported to live healthier lives, have access to healthcare services and receive ongoing healthcare support? ?
CQC KLOE E5
In this section we have summarised the main elements of a dignified life:
- all the ‘little things’ that add up to help a person to feel respected
- freedom to express sexuality and experience sex
- religion and spirituality as part of identity
- experience of pain minimised.