Evidence Review: Dignity. September Amy Veale Research Development Manager. Age NI 3 Lower Crescent Belfast BT7 1NR

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1 Evidence Review: Dignity September 2012 Amy Veale Research Development Manager Age NI 3 Lower Crescent Belfast BT7 1NR t: e: amy.veale@ageni.org Age NI delivers care services, provides advice and advocacy, campaigns, fundraises and lobbies decision-makers to improve later life for us all.

2 What do we mean by dignity and how does it impact on health and social care outcomes? Strategic area: Focus: Policy relevance: Health and Social Care Dignity Transforming your Care Key findings Dignity is salient to the concerns of older people. Dignity is challenged through negative interactions between staff and patients. Maintaining a sense of identity is closely linked to dignity Experience of loss can plays an important role in that it can erode selfidentity. Older people report distress in terms of the multiple losses experienced. These losses pose significant challenges to sense of self and identity and ultimately to dignity. Multiple losses can have significant psychological implications for the individual, and this should be acknowledged by service providers. Loss of independence and control also erodes an individual s sense of dignity. Being included and having control in health decisions can result in positive health and social outcomes. 2

3 Background This evidence review on dignity is one in a series of five which have been developed to correspond to and support Age NI s vision for social care, which is for quality integrated social care that recognises the rights, aspirations and diversity of us all, and is based on the right to live with dignity, independence, security and choice. These evidence reviews will draw on findings from research in an attempt to ensure that policy making is informed by a strong evidence base. The list of research articles referred to in this review is not intended to be exhaustive, but it is hoped that reference to this research will encourage evidence based thinking and further debate on this matter. Age NI believes that a good understanding of the challenges of an ageing population is vital for policy makers. It is therefore important that the right strategic policy decisions are underpinned by a strong evidence base. It is hoped that these evidence reviews will contribute to the development of that evidence base and play a role in improving social care provision in Northern Ireland. Dignity and Age NI s Vision of Social Care Age NI has a vision of what social care should look like and dignity in care provision is an essential component of that vision. The provision of dignified care can lead to improved care outcomes [1]. But what do we mean by dignity and what does it look like in practice? Tadd et al acknowledged that dignity is a complex concept that is difficult to define [2] and make reference to van Hooft who warns that;- Without clarification of what the concept entails, aspirations to recognise and respect the dignity of individuals within the daily reality of care giving, are not only subject to wide variation, they are also ineffectual and in danger of degenerating into mere slogans. 3

4 This evidence review will examine the theoretical and empirical literature in an attempt to gain a clearer understanding of the concept of dignity. It will also look at practical steps that policy makers, and health and social care providers can take in order to ensure dignified care provision. What does dignity mean? If health and social care is to be provided in a dignified way, it is necessary to firstly define what is meant by dignity in care. The concept of dignity has, at times, been criticized in the literature. For example Macklin argues that the concept means no more than respect for persons or their autonomy. In a review of the theoretical literature however, Gallagher et al argues that;- Dignity is fundamentally concerned with claims of worth or value, with behaviour that justifies such claims and with treatment by others that shows appropriate respect: dignity is thus not reducible merely to autonomy or to respect. Violations of dignity It is perhaps easier to understand what we mean by dignity when it has been violated. Gallagher et al refer to Mann s taxonomy of dignity violations [3]. These violations include; not being seen, being seen but only as a member of a group, violations of personal space, and humiliation. Not being seen occurs when someone feels that they are not acknowledged or recognised and where people feel unheard or disregarded. Being seen but only as a member of a group, may involve only being seen as an older person, or a patient. Mann argued that being seen only as a group member is pejorative and depersonalising, diminishing the dignity of the individual. 4

5 Violations of personal space are likely to vary according to the nature of the relationship, whether or not permission has been gained, and the individual. Different individuals will react in different ways. The final type of dignity violation, humiliation, occurs if people are singled out for criticism. However Mann also acknowledged that humiliation could result from any other dignity violation. For example, if our personal space is violated, humiliation could describe our affective response to the experience. Factors fundamental to dignity There are many similarities amongst the various empirical studies concerning the factors that are fundamental to dignity. These factors relate to extrinsic factors such as being valued as an individual, and being respected as an individual, and more intrinsic factors such as maintaining a sense of self and a sense of independence. They include choice and control, equal treatment, and identity. Choice and Control Woolhead et al explored the concept of dignity from an older person s perspective using focus groups and interviews [4]. They found strong evidence to suggest that dignity was salient to the concerns of older people. Three major categories emerged from their analysis. These categories were; dignity of identity, human rights, and autonomy. In terms of autonomy, research participants communicated the need to maintain independence and control for as long as possible. Those participants not in residential or nursing care stated that being told to do certain activities at certain times threatened their autonomy. Denial of personal choice and how this negatively impacted on control was evident;- They want you to do exactly what they want you to do and that s what I have really objected to.. they are taking my choice away, they seem to want to take your choice away, they want to tell you you will wear pads, you will go to a day centre. 5

6 This finding was crucial as there is evidence to suggest that not only do older people often become disempowered in a social and/ or health care setting, but also that being included and having control in health decisions can result in positive health and social outcomes. In a longitudinal qualitative study, carried out Dr Liz Lloyd of the University of Bristol, research participants also reported that loss of independence led to a loss of dignity [5]. Not wishing to be a burden but becoming increasingly reliant on others for support was a difficult reality for participants to accept. Sense of self and dignity were found to be bound up in this task. This was supported by the findings of the Dignity and Older Europeans Study [6], which involved empirical work with more than 1000 participants in six European countries. This study found that older people had a fear of becoming a burden to family, friends and even the state. Research participants associated loss of autonomy and dependence, with a loss of dignity. They saw themselves as lesser persons who have lost all value. Tadd et al reasoned that dignity is therefore not exclusively related to caring interactions, but also the value that we as a society place on autonomy. How can choice and control be operationalised? Emphasis on choice and control is one of eight factors identified by SCIE (the Social Care Institute for Excellence) as being necessary to promote dignity in care. Practical advice on how this can be achieved can be viewed through the SCIE website; Advice on improving choice and control includes the following; Take time to understand and know the person, their previous lives and past achievements. Treat people as equals, ensuring they remain in control of what happens to them. Empower older people to make 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 6

7 go to bed), and wider decisions about the service or establishment (such as menu planning or recruiting new staff). Do not assume that people are not able to make decisions. Valuing the time spent supporting people with decision-making as much as the time spent doing other tasks. Working to develop local advocacy services and raise awareness of them. Involving people who use services in staff training. Identity The concept that appeared to be most prevalent to dignity in the study by Woolhead et al was identity [7]. Older people who took part in the study emphasized the importance of self-respect in order to maintain dignity of identity. Looking respectable was considered to play an important role, however research participants stated that this was not always recognized by staff. For example, in a hospital setting, a policy of drawing of curtains around hospital beds was applied inconsistently. There were also reports of a lack of attention to people s appearance by hospital or residential staff. This evidence confirmed results from previous studies that dignity is challenged through negative interactions between staff and patients. In a study by Hall et al, feelings of loss were an emergent theme linked to identity [8]. Residents of a care home reported a loss of independence in a range of domains, including their financial affairs, personal care and their social lives. References to functional capacity were particularly strong, and concerned many current activities of daily living, including, being unable to walk, go out alone, take medication, bath, dress, eat and enjoy hobbies. Participants reported distress in terms of the multiple losses most of them had experienced: home, family, friends, important roles, function and independence. All had lost their homes and most of their personal possessions. Interventions addressing psychological distress associated with such losses are likely to help promote a sense of dignity. Again Privacy boundaries, reflecting intrusions into an individual's personal space, were identified as being of fundamental importance in order to maintain a sense of dignity in the study by Hall. In the study by Dr Liz Lloyd, all participants talked about the challenges their health problems posed to their sense of self and to their identity. Participants in this study 7

8 talked about their loss of mobility, strength and confidence, and how this led to the loss of activities which had been a major part of their lives. Finding new activities or adapting old activities was found to be necessary to address this sense of loss and to promote dignity. As found in the study by Woolhead, loss of privacy in terms of the need for personal care was dreaded. However, most found that personal care was not as bad in reality, but that this depended on how the help was given. Again, SCIE have come up with a list of practical recommendations to ensure that dignity of identity and privacy is maintained. The full list can be seen at Make issues of privacy and dignity a fundamental part of staff induction and training. Time taken to understand and know the person, their previous lives and past achievements. Get permission before entering someone s personal space. Get permission before accessing people s possessions and documents Respect privacy when people have personal and sexual relationships, with careful assessment of risk. Ensure single-sex bathroom and toilet facilities are available. Provide en suite facilities where possible. In residential care, respect people s space by enabling them to individualise their own room. Ensure only those who need information to carry out their work have access to people s personal records or financial information. Dr Liz Lloyd of the University of Bristol has also recommended the following;- Awareness of the impact of illness on the person and their sense of who they are Being treated as an individual with a unique history, preferences, fears and beliefs 8

9 Hall et al recommended the following intervention;- As many of the concerns expressed by participants were due to inevitable losses, dignity psychotherapy has been developed to address such concerns. However, it is also important to focus on the attitudes of staff towards residents and to empower older people to maintain independence and autonomy where possible. Equal treatment In terms of human rights being treated as an equal, regardless of age, is deemed to be important [9]. Some older research participants discussed the sense of inferiority older service users can have as patients don t possess the health, vigour, or knowledge of those looking after them, which means that they re in an unequal situation. The Dignity and Older Europeans Study mentioned also found that societal images, and derogatory labeling of older people contributed to a loss of dignity. Ageist remarks were viewed as an assault on older people and eroded dignity of identity. SCIE has recommended the following practical steps; Give people information about the service in advance and in a suitable format Ensure people are offered 'time to talk', and a chance to voice any concerns or simply have a chat. Involve people in the production of information resources to ensure the information is clear and answers the right questions. Concluding remarks Loss of dignity and sense of self is often related to the unavoidable losses that come with age, as well as a sense of dependency which will be inevitable for some older people. These can be considered as intrinsic factors as they relate to how the individual views themselves and their sense of self-worth. It is this intrinsic erosion of dignity which is perhaps less visible and more difficult to tackle on a policy and service 9

10 provision level. It is partly the result of the high value our society places on independence. Dignity psychotherapy has been suggested to address such concerns [10]. However, it is also important to focus on the attitudes of staff towards service users, and to empower older people to maintain independence and autonomy where possible. Care providers should take time to get to know the individual and understand their situation, perspective and vulnerability. Staff should be educated on the impact of loss experienced by older service users and the impact that this has on dignity, helping those individuals to maintain functional capacity and independence where possible, empowering and supporting individuals to follow their own personal routines. Extrinsic factors relate specifically to how service providers treat older service users. These extrinsic factors are more overt and therefore in theory more easily addressed. Steps should be taken to ensure that ageist attitudes amongst service providers are challenged, that privacy boundaries are respected, and that older service users are treated as individuals. Age NI would be grateful if you could complete a short questionnaire about this research briefing on the following link; For further information on this briefing, or if you have any other comments, please send queries to the Research Development Manager for Age NI;- amy.veale@ageni.org 10

11 Bibliography 1. Woolhead, G,.et al Dignity in older age: what do older people in the United Kingdom think? Age and Ageing. 33 ( ). 2. Tadd W, et al Clarifying the Concept of Human Dignity in the Care of the Elderly: A Dialogue between Empirical and Philosophical Approaches. Ethical Perspectives. 17 ( ) 3. Gallagher, A., et al (2008) Dignity in the care of older people- a review of the theoretical literature. BMC Nursing 7(11). 4. Woolhead, G,.et al Dignity in older age: what do older people in the United Kingdom think? Age and Ageing. 33 ( ). 5. Lloyd, L., Maintaining dignity in later life: a longitudinal qualitative study of older people s experiences of support and care. University of Bristol. 6. The Dignity and Older Europeans Study reported in Tadd W, et al Clarifying the Concept of Human Dignity in the Care of the Elderly: A Dialogue between Empirical and Philosophical Approaches. Ethical Perspectives. 17 ( ) 7. Woolhead, G,.et al Dignity in older age: what do older people in the United Kingdom think? Age and Ageing. 33 ( ). 8. Hall S., et al. (2009) Living and dying with dignity: a qualitative study of the views of older people in nursing homes. Age and Ageing 41 (1): Woolhead, G,.et al Dignity in older age: what do older people in the United Kingdom think? Age and Ageing. 33 ( ). 10. Hall S., et al. (2009) Living and dying with dignity: a qualitative study of the views of older people in nursing homes. Age and Ageing 41 (1):