Specialist care - Protecting dignity in mental health care
Research suggests a number of ways in which dignity might be promoted or protected in mental health care. These include:
- person-centred care
- improving inpatient experiences for people from BME communities
- good communication
- human rights
- the Mental Capacity Act
Research shows that respecting an individual’s identity and protecting their dignity will help to promote recovery; whereas acts that violate dignity and fail to respect an individual and their story will lead to further damage (Jacobson 2009; Kogstad 2009; Warner 2011). For example, Kogstad’s study of inpatients narratives (2009) to investigate violations of dignity from the clients’ point of view; s/he concludes that respecting integrity and dignity is not only an ethical obligation but also ‘the means to recovery’.
The dignity of people with dementia can be violated by a range of insensitive or discriminatory practice. The protection offered by person-centred care is especially important for this group, and practice guidelines emphasise careful assessment of the needs of the individual.
Non-verbal assessment tools involving observation of behaviour and physiological change have been used to assess pain or distress in older people with dementia (Zwakhalen, Hamers et al., 2006; Royal College of Physicians, 2007). Some commentators recommend a palliative care approach to managing advanced dementia, with its disability and distress (Roger 2006; Volicer 2007), aiming for quality of life, dignity and comfort (Ostgathe et al, 2008). The Healthcare Commission (2008) identified four priorities areas for achieving better outcomes for service users and their carers. The first of these was ‘putting a greater focus on the individual and care that is personalised’. The Commission suggested that commissioners and providers of acute care achieve this by:
- ensuring that all service users are effectively involved and engaged, and their views made explicit within individual care planning processes
- developing approaches to involving carers
- ensuring that service users and carers are better informed and information is more accessible
- paying greater attention to identifying and meeting the needs of people from BME groups
- promoting social inclusion, both in acute care settings and through strengthening links with the community.
Schroeder et al (2006) explored patients’ perceptions of the concept of quality of care through qualitative analysis of 20 interviews. From this, five categories emerged: dignity, security, participation, recovery and the care environment. They identified two themes of significance: ‘being helped to reduce the shame’ and ‘being looked upon as like anyone else’.
In common with care of older adults, the value of taking a person-centred approach to mental health care is that the individual is placed at the centre and their individual needs, preferences and rights are respected. In adult social care, ‘personalisation’ has been the route taken for this approach.
Personalisation’ concerns ‘respecting a person’s human rights, dignity and autonomy, and their right to shape and determine the way they lead their life…(DH, 2011)
Personalisation means whole-scale transformation of the way that adult social care services are provided. ‘Transparency in outcomes: A framework for adult social care’ (DH, 2010) sets out a strategic approach to achieving quality and outcomes in adult social care. A number of these outcomes have direct relevance for mental health care, including promoting personalisation and enhancing quality of life for people with care and support needs.
According to ‘No health without mental health’ (DH, 2011), ‘Personalised support and services are designed for the purposes of independence, wellbeing and dignity. Every person who receives support should have choice and control, regardless of the care setting.’ (para 4.13, page 32)
Personalisation has become a key concept for the future of the NHS. It is a means to protect and uphold the dignity of people with mental health problems. However, at present its reach does not go beyond social care.
In mental health care, the ‘recovery approach’ embodies many of the same principles as personalisation. ‘Recovery’ has been adopted and re-defined by mental health service users as a personal journey, a means of finding a meaningful life with or without the continued experience of mental health problems and symptoms (Repper and Perkins, 2003; Roberts and Wolfson, 2004; Brown and Kandirikirira, 2007; Shepherd et al, 2008).
Recovery 'is a way of living a satisfying, hopeful and contributing life, even with the limitations caused by illness. Recovery involves the development of new meaning and purpose in one’s life as one grows beyond the catastrophic effects of mental illness...’ (Anthony, 1993)
Dignity is closely associated with concepts of self-respect, self-worth and identity. Much literature about recovery points to the significance of establishing or re-establishing a sense of personal identity and self-acceptance (amongst other things) in enabling an individual to embark on their recovery journey. Andresen, Oades and Caputi (2003) suggested four key components for recovery:
- Finding and maintaining hope.
- The re-establishment of a positive identity.
- Finding meaning in life.
- Taking responsibility for one’s life.
In ‘Making recovery a reality’ (Shepherd et al, 2008), the discovery or re-discovery of ‘a sense of personal identity, separate from the illness or disability’, is given as one of ten principles for recovery. Mental health charity Rethink carried out collaborative research (Ajayi et al, 2009) to explore recovery with people experiencing severe mental health problems. They found issues of acceptance, self and identity to be of crucial importance to recovery:
Being disempowered may lead to people feeling less than human. Mental health recovery is fundamentally about reclaiming a personal identity and developing a renewed sense of self. This links with taking responsibility for the situation and relocating a feeling of personal power rather than feeling that power and control lie elsewhere, outside the self.(Ajayi et al, 2009, p.43)
Improving inpatient experiences for people from BME communitiesOpen
In 2009, an Expert Panel of clinicians, service-users, carers and other professionals looked at improving inpatient psychiatric services for BME communities. The panel was set up by the Delivering Race Equality (DRE) programme of the National Mental Health Development Unit (NMHDU) in collaboration with the Royal College of Psychiatrists’ College Centre for Quality Improvement (CCQI).
The panel’s report made recommendations on:
- discussing and understanding the needs of BME patients and
- the staff skills, ward environment, cultural, faith and spirituality awareness and other issues that are required to deliver effective patient assessment and care
- the education, training and support for staff that is required to ensure that staff can care for patients with the right level of cultural competence and service user involvement, while reducing the risk of violence, and ensuring that peer-to-peer and supervisory support provides a safe environment for staff to ‘debrief’.
Work by the group Maat Probe, based at Sheffield African Caribbean Mental Health Association (SACMHA), found that many local, black service users had negative experiences of control and restraint in hospital, and that it powerfully influenced their views about future hospital admission. The group recommended the use of Respect training (add respect training draft two) – a de-escalation technique for dealing with aggressive and potentially violent behaviour in a respectful manner.
Person-centred care requires good communication. Griffin-Heslin (2005) named it as one of four 'defining attributes’ of providing dignity in care, and dignity can be threatened when someone lacks communication skills. For example, a person with dementia may develop communication difficulties which can lead to a gradual breakdown in communication and in many cases a reduction of meaningful interaction, threatening what Jacobson (2009) referred to as ‘social dignity’. This in turn may threaten personhood and consequently human dignity if the people around the individual cease to consider them to be truly human.
Several authors (Kuosmanen 2007; Kogstad 2009; Mayers et al 2010) found poor or inadequate communication to be one of the key themes arising from experiences of hospital care and, in particular, of coercive treatments. The research carried out by Mayers et al (2010) is of particular significance here since it concerned the use of control and restraint measures. Clear and respectful communication with people might reasonably be expected to mediate the use of such measures, such that people’s dignity is respected in accordance with the Mental Health Act Code of Practice. Moylan (2009) argues that it is possible to restrain a person in a respectful and compassionate manner such that their safety and dignity are preserved. For Moylan (2009), there are two goals to successful restraint: maintenance of everyone’s physical safety and maintenance of the patient’s’ dignity, humanity and comfort. To achieve the latter, Moylan argues for the active application of ‘presencing’ – i.e. that is, ‘the intentional authentic responsiveness of the nurse to another human being. The nurse is sincere and expresses genuine caring feelings’ (Zerwekh 2006 p.125, quoted in Moylan 2009). Caldwell and others (2005) explored ‘presencing’ through interviews with nursing staff working in a US psychiatric hospital. The themes they found to describe ‘presencing’ included: knowing the uniqueness of individuals; listening actively; caring with confidence; creativity and perceived respect.
Hopkins et al (2009) carried out a literature review of service users’ expectations of mental health care, analysing the literature relation to the seven elements of the World Health Organization’s concept of responsiveness (respect for dignity, confidentiality, autonomy, prompt attention, quality of amenities, access to social supports and choice of provider). By far the largest theme under respect for dignity was interpersonal relations. Service users wanted good relationships with staff, to be respected by staff and for staff to demonstrate good communications skills. Significantly, there was a direct relationship between a member of staff’s ability to listen and service users feeling respected.
Communication is raised as an important factor in many areas of research, including ameliorating shame (Schroeder et al, 2006), the way in which a person is addressed (Curtice and Exworthy, 2010), the opportunity to discuss traumatic experiences associated with coercive measures (Kuosmanen, 2007) and regularly reminding people of their rights (Laidlaw and Buckle, 2006). Two important aspects where communication is key are the use of restraint and in relationships between staff and service users.
See the communication section of this guide for further information.
Some authors propose ways of protecting dignity in mental health care, to protect people’s human rights (Yamin and Rosental 2005; Burns 2009; Curtice and Exworthy, 2010). Some address wider issues of equality and human rights under this umbrella (Yamin and Rosental 2005; Burns 2009). Others discuss the value of taking a ‘bottom-up’ human rights based-approach to mental health care as a means of humanising and improving care and treatment (Yamin and Rosental 2005; Curtice and Exworthy, 2010).
In proposing a human rights-based approach to inequality and discrimination in relation to ‘mental disability’, Burns (2009) argues for strong advocacy movements, substantial legal reform, services reform that includes adequate resources, the removal of barriers to health services encountered by people with mental health problems, and extensive community based care (to enable full social inclusion). He argues that this approach means looking beyond identifying mental disability as a medical issue and acknowledging the social, economic and political forces that result in mental ill health.
For Yamin and Rosenthal (2005) too, taking a human rights-based approach goes ‘beyond quality of care to include both legal and services reforms’. They also advocate full involvement of – and transfer of power to – service users and family members in policy-making and decision-making. Kingdon et al (2004), in an editorial on the new recommendations emerging from the Council of Europe, emphasise the importance of providing appropriate resources for care and measures to de-stigmatise mental disorder to protect human rights.
Curtice and Exworthy (2010) advocate a ‘bottom-up’ approach, based on human rights, that can be used by individuals and organisations in everyday practice. They describe five key values or principles: fairness, respect, equality, dignity and autonomy (FREDA), and suggest all five values should be brought to bear to inform decisions. Adherence to the principle of dignity, they say:
requires that each person is treated as a human being with due consideration to their prevailing circumstances.
The aim of this approach is to ensure that health care workers seek to preserve dignity, rather than merely to avoid violating it.
See SCIE resources on personalisation. for further discussion of personalisation and person-centred.
There is more information on legislation concerning dignity in care and human rights in this guide.
The Mental Capacity ActOpen
When an individual loses capacity, there is the added danger that they will be treated with less respect and dignity. While the Mental Capacity Act 2005 can be used to enable and ensure that staff and carers act in service users’ best interests, day-to-day interactions remain vulnerable to violations of dignity.
The rights of older people with dementia who lack capacity have been substantially increased by the provisions of the Mental Capacity Act 2005 (MCA). The MCA provides for independent advocacy support and sets out the terms in which an individual may make binding advance decisions to refuse treatment (in the event that they lose capacity). A review of the literature on advance care planning, which underpins the professional guidelines issued by the Royal College of Physicians in 2009, found that the majority of people were happy to discuss advance planning when their condition is stable, and that such a discussion can increase patient satisfaction (British Geriatrics Society et al, 2009).
Abuse, of whatever kind, is a fundamental violation of a person’s dignity. Abuse of older people is an important issue for consideration. There is a greater risk of abuse for people with dementia (Selwood and Cooper, 2009). Issues of loss of capacity and communication assume particular significance for people with dementia and their active involvement in matters of informed consent and decision-making about their care. One recent study focused on the self-reported abuse by family carers towards people with dementia (Cooper et al, 2009). It found that one third of carers surveyed reported ‘important levels of abuse, and half – some abusive behaviour.’ Verbal abuse was most commonly reported.
Research and the views of service users suggest that prevention of abuse in adult safeguarding needs to be broadly defined, to be informed by personalisation and include all social care user groups. It encompasses multi-agency working (including information sharing), community safety, community participation and public awareness, as well as awareness-raising and skills development with adults at risk.
Social care has an important role to play in protecting adults who are at risk from abuse. Services and support must be delivered in ways that are high in quality and safe. It is best that abuse is prevented from occurring in the first place, but where it does occur, swift identification and proportionate responses are vital.
Safeguarding policies and procedures represent the commitment of organisations to:
- work together to prevent and protect adults at risk from abuse
- empower and support people to make their own choices
- investigate actual or suspected abuse and neglect
- support adults and provide a service to adults at risk who are experiencing abuse, neglect and exploitation.
People who use services are clear that the effective prevention of abuse is not about over-protective paternalism or risk-aversive practice. Instead, the prevention of abuse should occur within the context of person-centred support and personalisation, with individuals empowered to make choices and supported to manage risks (CSCI 2008a, 2008b, SCIE 2010).
Using restraint in any setting can be a dramatic indicator of unequal power in relationships. Applied to adults in care settings without adequate therapeutic justification, restraint underlines and increases vulnerability, labels incapacity and humiliates. Nonetheless, in the recent past, ‘restraint’ has widely been found to be an acceptable solution to the tendency of people with dementia to ’wander’. SCIE’s recent review of selected literature about restraint in care homes for older people (including chemical restraint) identifies the ways in which it is justified and used, and presents examples of alternative practice.
The author comments that very little is actually known about what happens in practice in the UK and that, although restraint education is valued for ethical reasons, ‘the direct impact on older people of using alternatives to restraint is not easy to demonstrate’ (Qureshi, 2009). A report of a small study which followed this review describes the challenges facing staff, and the need to balance risks and rights in sensitive practice (Owen, 2009).