Dignity in older age: what do older people in the United Kingdom think?
Woodhead G, Calnan M, Dieppe P and Tadd W;
Commented by , 24 Mar 2004
Background
Despite a number of government driven initiatives such as the National Service Framework for Older People, health and social care for older people in the United Kingdom remains in some disarray.
Problems include poor quality secondary care with bed-blocking and excessive length-of-stay in hospital; lack of primary care, intermediate care, health promotion and home care to support older people living in their own homes; privatised long term care and end-of-life care that is variable in quality; and poor co-ordination of services between multiple agencies.
In an age of user and carer involvement, surprisingly little is known about what older people actually want for their own health and social care. This qualitative study is aimed to explore the complex concept of dignity in older people.
Methods
15 focus groups (of 4-6 older people) and 2 individual interviews were conducted in 12 different cities in South West England and Wales over 6 months in 2002. Participants were chosen to represent a mix of socioeconomic status, ethnicity, gender, age (65+) and level of fitness. A semi-structured schedule was developed to explore participants’ perceptions of dignity.
Focus groups were tape recorded and fully transcribed. Data were analysed by constant comparison of transcripts to identify themes, which were compared and coded into separate word processing files. Two researchers independently coded the transcribed data, consensus on themes was agreed by discussion. Analysis continued until all categories were saturated producing no new information.
Results
72 out of 108 invited participants contributed. Dignity was important to older people. 3 major themes emerged:
1. Dignity of identity – including dignity as it affected the self, younger age groups, and health care personnel.
Participants discussed other people who had lost dignity, who had “let themselves go” or “given up” on their self care or appearance. They identified disrespectful labels such as “wrinklies”, “bed-blockers” and “geriatrics”.
Dignity was felt to be violated by hospital staff exposing their naked bodies when, for instance, a hoist was used for lifting, or drawing curtains around beds inconsistently. Mixed wards and being nursed by men were deemed undignified by females. Dignity was compromised by suffering, particularly at the point of death. Being addressed in a casual manner (eg., by Christian name or as “love”) was felt to be patronising.
2. Human Rights
Participants thought “everyone should be treated as an individual” and as an equal, regardless of age. An important theme was the right to choose how they lived – and died, as euthanasia was highlighted as a right to end a life deprived of dignity. Living Wills were viewed positively.
Government finances and policies were deemed inadequate to support the rights of older people.
3. Autonomy
Participants wanted to remain independent, control their lives, and maintain their mental ability. Some participants, particularly those in nursing homes, believed some people were too stubborn to give up their independence and subsequently lost dignity.
Discussion
The qualitative research techniques used in this study were sufficient, though there is no detail on the semi-structured interview used, and some doubt that the sampling frame may have been weighted towards middle class participants.
Dignity is a complex concept, but this study lends support to how important dignity is at the end of life, and how health and social services in the UK are failing to provide a dignified end of life period for many older people.