Dignity in care
Investigator
Liz Lloyd, University of Bristol
Team
Michael Calnan, University of Bristol
Ailsa Cameron, University of Bristol
Randall Smith, University of Bristol
Kate White, University of Bristol
Jane Seymour, University of Nottingham
Background
As people live longer it is more likely that they will experience a period of poor health prior to death and will need support and help from families and from health and social care services.
These circumstances challenge older people’s autonomy and sense of dignity. Those who provide help and support play a crucial role in maintaining older people’s sense of dignity.
There is a need to understand more about older people’s perspectives on dignity and how these are affected by changes in their circumstances.
This research combined the disciplinary backgrounds of the research team, which cover gerontology social policy, sociology, primary health care and social work.
Aims and objectives
This project had the following aims:
To gather information from older people about their perceptions of dignity.
To identify the factors that are perceived to support or to undermine a sense of dignity.
To identify the resources available to them to draw on.
To identify how older people in need of ongoing support and care prepare for the future and the last stage of life..
To contribute to the development of gerontological knowledge about dignity.
Design
Our approach was open and exploratory. Through our GP partners we established a group of 40 participants aged 75+ who need help or support from families or from health and care services to enable them to remain living in the community.
Between March 2008 and July 2010 we aimed to meet each participant in person on three occasions (at annual intervals) and by telephone every two months.
This extended period of contact enabled us to see more clearly how people’s views on dignity are affected by their changing circumstances. It also enabled the participants to get to know and trust the researchers so that they were able to share how they feel when they are being given help.
Supporters
All participants were invited to nominate a trusted friend or relative to act as their supporter throughout the study. The contribution of supporters was important in providing reassurance to participants and facilitating data-gathering.
Interviews
Areas that we explored with our research participants:
Their everyday lives and routines, the kinds of things they enjoy doing and how changes in their health have affected their everyday lives.
The kind of help and support they receive. What arrangements have been made to provide them with help? Who was involved in making these arrangements and how were decisions made about the kind of help needed? How do they feel about this?
How they see the future, what plans they have made. For example, are they thinking about making changes, to their living arrangements? Have they thought about decisions concerning future medical treatment?
Analysis of data
We used Framework to analyse the data, because of its capacity to deal with longitudinal data as well as to enable us to identify key themes about dignity across the whole sample.
Advisory panel
At all stages of the project, we were advised by an advisory panel with members drawn from voluntary organisations and older people’s groups and chaired by Help the Aged UK.
Policy implications
Three main policy implications:
The DH End of Life Initiative, based on the principles of extending choice, responsiveness and equity with the NHS. Some initiatives such as the Preferred Place of Care plan are particularly relevant. Awareness is rising of age- and diagnosis-related inequities in access to services and lack of choice over place of death. Currently, the Department of Health is conducting a review of end of life care within SHAs, with an End of life Care Strategy expected in June 2008.
The Department of Health Dignity in Care Campaign, launched in November 2006, which aimed ‘to eliminate tolerance of indignity in health and social care services through raising awareness and inspiring people to take action’.
Long-term care for older people, which evidence suggests is increasingly focused on older people with complex health needs such as experienced by research participants in this project. Currently this area of policy is undergoing further change with the implementation of more personalised adult care services.
These currently high levels of activity, together with the longitudinal nature of our project make it difficult to specify a policy/practice target. However, because the scale of change and the resource implications are so significant we expect that these policy and service developments will be ongoing throughout the duration of the project and beyond.
The research will:
Contribute to a better understanding of dignity. Within policy debates perceptions of dignity in relation to the end of life are highly contentious and the term is utilised by various, sometimes opposing ‘camps’ of people in relation to euthanasia or physician-assisted deaths (dignity in dying groups, Care not Killing Alliance etc). It is important that within these broad-ranging ethical and political debates the voices of older people who are facing the end of life at a near but uncertain time are heard.
Raise awareness amongst policy-makers and practitioners of the links between these areas of practice through reporting first-hand accounts from older people that will bring issues to life and provide data about the need for integrated approaches that might otherwise be missing.
Highlight the experiences of older people who are ‘living with’ as well as ‘dying from’ health problems. Through its focus on gathering the experiences and perceptions of older people over a period of time we aim to capture a view of the dynamic nature of older people’s perceptions as they go through a period of significant change in their life course. This being the case, the ‘end of life’ is not understood as a short period of time prior to death but a more indeterminate and subjectively understood period of time.