Changing European Societies – The Role for Social Policy
13.-15. november 2003
The promotion of quality of life in long-term care policy
Dr. Geraldine Boyle (2003)
Internationally, quality of life has been prioritised by the World Health Organisation as
an outcome in relation to diverse groups of people such as those with chronic illness,
informal caregivers and refugees and immigrants (WHOQOL Group, 1995). In particular,
quality of life is increasingly being used as “an endpoint in the evaluation of public
policy”, for example, as an outcome of health and social care (Bowling et al, 2002: 355).
In relation to health and social care in the United Kingdom, government policy has
sought to improve the quality of life of older people needing long-term care, whether in
institutional or community care settings (DOH, 1989).
This paper explores the stated and actual aims of the community care policy - Caring for
People - in relation to the quality of life of older people, and questions how the ‘quality’
in quality of life is being defined. In particular, whilst the policy promotes choice and
independence (DOH, 1989, Para 1.8), my paper questions whether these components
sufficiently promote the quality of life of older people, especially in terms of supporting
and enhancing their autonomy. In addition, I discuss how the policy focuses on physical
independence to the detriment of autonomy. The paper also looks at how older people
themselves prioritise both physical independence and autonomy. I additionally examine
how physical independence is promoted in other policy instruments such as the National
Service Framework for Older People (which relates to health and social care services
generally) and Modernising Social Services (which relates to social services), and
question whether these policies adequately promote quality of life, particularly autonomy.
The paper ends by examining how a high quality of life for older people in long- term
care settings is to be achieved and how it should be measured.
Policy instruments and objectives
Despite the underlying financial agenda, the stated objectives of the White Paper on
community care - Caring for People - were to achieve improvements in quality of life for
people with long-term care needs and their carers (DOH, 1989). In particular, choice and
independence were promoted (Para 1.8). Specifically, “community care means providing
the right level of intervention and support to enable people to achieve maximum
independence and control over their lives” (DOH, 1989, para 2.2). Thus, disabled and
elderly people should have “a full say in how they live their lives and in the services they
need” (Secretary of State for Northern Ireland, 1990: 5). Levick (1992: 86) argued that
the concepts of consumer participation, preference and choice embodied in the White
Paper reflected “an underlying philosophy of self-determination” and was thus “a
potentially transformative vehicle for user sovereignty in decision making”. However,
“despite the political rhetoric concerning choice and user involvement accompanying the
White Paper, neither the Act nor the policy guidelines accompanying it contain any
concrete proposals for user involvement or empowerment” (Walker, 1993: 218). Walker
and others have argued that the aim of increasing user choice has been compromised by
the assessment process which involves rationing resources and which enhances
professional power (Walker, 1993). Moreover, the concepts of choice and user
involvement promoted by policy fall short of respecting the rights of older people to be,
as far as possible, self-determining, autonomous individuals (Boyle, 2001).
The National Service Framework for Older People was developed as a ten-year strategy
for health and social care to ensure that older people receive high quality services which
support their independence and promote good health. The National Service Framework
stated that the goals of health and social care policy are to respond to problems (taking
into account physical, mental and social care factors) which can compromise
independence and quality of life (DOH, 2001). However, the National Service
Framework does not include the promotion of quality of life as a goal of policy in itself,
particularly for people living in long-term care settings. Moreover, the National Service
Framework promotes physical independence at the expense of personal autonomy.
Specifically, whilst Standard Three of the strategy - relating to intermediate care -
emphasises the need for services at home or in care settings to maximise the
independence of older people, there is no mention of the importance of supporting their
autonomy. Likewise, Standard Eight promotes healthy and active life in old age, but
emphasises physical independence rather than autonomy. Similarly, in promoting personcentred
care, although Standard Two specifies that older people should be involved in
decisions about their care, the strategy overall does not require health and social care staff
to ensure that control over decisionmaking is retained by the older person (DOH, 2001).
Modernising Social Services (Secretary of State for Health, 1998) set out the
government’s proposals for developing social services which promote people’s
independence and improve protection for vulnerable people and for raising standards in
social services generally. The Secretary of State stated that, in the past, social services
have sometimes been provided in a way that created, rather than alleviated, dependency.
Hence, the proposals sought to develop services which prioritise promoting and
supporting independence. In particular, the White Paper emphasised the need for better
preventative services and a greater focus on rehabilitation, to ensure that adult social
services improve people’s health and social functioning. Again, however, the policy
prioritises support for physical independence over support for autonomy. Harding et al
(1996) had argued that long-term care policy (for older people) should focus on
prevention and rehabilitation in order to enable older people to remain physically
independent. On the contrary, however, adopting physical independence as a central
focus of policy will be detriment to older people’s autonomy.
Moreover, the reality is that older people in long-term care settings (whether institutions
or domiciliary care settings) are generally ‘dependent’ such that they require assistance
with activities of daily living. However, being physically dependent necessitates relying
on others as much to execute one’s decisions as to provide assistance with personal care.
However, because policy promotes supporting physical independence over supporting
autonomy, the organisation of care in institutions and the provision of informal care in
private households similarly prioritises help with personal care over executing decisions
on behalf of the older person. Consequently, the autonomy of older people is neglected
Older people prioritise physical independence
Of course, remaining physically independent is of fundamental importance to older
people (Henwood and Waddington, 1998). Boaz et al (1999) reviewed the literature on
the attitudes and aspirations of people aged 50 and over in relation to health and social
care and found that older people want to do without care from family and friends and the
state for as long as possible. Boyle (2001) carried out research in Greater Belfast and
found that over a quarter of older people living in private households and receiving
domiciliary care and sixteen per-cent of residents in institutions prioritised having good
health or being free of disability or cognitive impairment (or wanting better health or a
reduction in disability) as the most important aspect of their current lives. Hence, older
people also want domiciliary and residential care services which seek to enhance their
independence, for example, by improving their ability to get about, by managing or
reducing their symptoms of ill-health and by developing their skills and confidence after
an accident (Qureshi and Henwood, 2000). Similarly, residents in residential and nursing
homes want access to equipment and adaptations and types of support which promote
their ability to self-care (Raynes, 1998).
Older people also prioritise autonomy
At the same time, however, exercising autonomy is equally important to older people,
whether or not they remain physically healthy (and retain their cognitive capacity).
Moreover, quality of life for older people is about more than just physical and mental
health and functioning (Bowling et al, 2002). Specifically, older people want to have
choice and control over their daily lives and want services which support such control
(Qureshi et al, 1998; Qureshi and Henwood, 2000). In relation to vulnerable older people,
it is also important to people with dementia to feel ‘in control’ and to have their
autonomy respected and supported (Qureshi et al, 1998; Bamford and Bruce, 2000).
Hence, maintaining autonomy is fundamental to the quality of life of older people in
long-term care settings.
However, older people in long-term care settings often experience a lack of choice and
control within their everyday lives. Counsel and Care found that some residents had very
low expectations of living in residential care and did not see the home where they lived
“as their home” or as a place where they had rights as well as responsibilities” (2000: pg.
1). In addition, the research undertaken by the author found that older people (particularly
those who were physically impaired) living in long-term care settings - both institutions
and private households where domiciliary care was provided - often experienced
constraints on their autonomy imposed by care workers and/or informal carers. Similarly,
it was found that the autonomy of older people with dementia was unnecessarily
constrained simply because of the presence of some cognitive impairment (Boyle, 2001).
Counsel and Care recommended that residential homes need to have flexible routines if
the residents are to have real choice in their everyday lives (2000). Similarly, long-term
care provision needs to focus on maintaining and supporting the autonomy of older
people, rather than inordinately focusing on physical care as at present.
Physical independence at the expense of autonomy
Government policy in relation to the autonomy of older people is inherently contradictory
in that, on the one hand, policy relating to adults who lack mental capacity - including
older people with dementia - requires that the individual is supported to exercise her/his
extant decisionmaking capacity (Lord Chancellor’s Department, 1999). On the other
hand, policy relating to health and social care for older people generally - whether Caring
for People, the National Service Framework or Modernising Social Services - attaches
little priority to maximising their scope for self-determination. Consequently, whilst older
people view independence as important both in terms of physical independence and
autonomy, the concept of ‘independence’ incorporated in government policy prioritises
only physical independence and attaches little significance to supporting autonomy
(Boyle, 2001). Specifically, whilst providing older people with choice and control has
been endorsed in health and social care policy, the Government have not gone as far as
emphasising their fundamental right to be autonomous individuals.
Caring for People did specify that community care means providing disabled people with
the support needed to enable them to have maximum independence and control over their
lives. In addition, Modernising Social Services specified that the guiding principle of
adult social services should be that they provide the support needed to enable each
individual to make the most of her/his own capacity and potential, and that social care
users should have a say in the services they get and how the services are delivered.
However, both policies fell short of endorsing the need for social care services to
fundamentally support the autonomy of older people. Indeed, my research in long-term
care settings showed that there is often a mismatch between the individual’s desire for
control over their daily lives and the degree of control afforded by the residential setting.
Specifically, older people in institutions and private households were frequently denied
basic choices in aspects of their everyday lives or were not provided with the assistance
to enable them to exercise significant choices and thereby live meaningful lives (Boyle,
2001). Sainsbury pointed out that community care policy “is inherently passive” (1995:
192). Similarly, health and social care policy, in general, views older people as passive
recipients of care, rather than as individuals with the capacity for self-determination.
The promotion of quality of life in policy
Although Caring for People sought to achieve improvements in the quality of life of
people with long-term care needs (DOH, 1989), it did not attempt to define ‘quality of
life’ or how such advances would be measured other than there would be enhanced
choice and independence. Nordenfelt (1993) asked how ‘optimal’ quality of life is to be
ensured and whether, if the alternative aim is to achieve a ‘minimal’ quality of life, this
was appropriate. As current social care policy emphasises concentrating resources on
those with the greatest needs (Secretary of State for Northern Ireland, 1990) and quality
of life is viewed only in terms of enhanced choice and independence, the concept of
quality of life promoted by government is a very limited one.
Similarly, whilst Standard Eight of the National Service Framework specified that
extending healthy life expectancy and reducing disability would promote quality of life
among older people, there was hardly any consideration given to the importance of
enhancing autonomy as a means of improving overall quality of life. Likewise, although
Standard Seven highlighted the importance of promoting good mental health in older
people, the need to support their autonomy in order for positive mental health to be
maintained was not considered (DOH, 2001). Whilst Modernising Social Services stated
that the development of standards in social services would focus on “the key areas that
most affect the quality of life experienced by service users” (Secretary of State for
Health, 1998: Section 4.48), there was little recognition that maintaining autonomy is
fundamental to the quality of life of older people in long-term care.
Of course, policy relating to long-term care attaches primacy to providing support to
maintaining or improving physical independence. However, as discussed above,
maintaining autonomy is fundamental to the quality of life of older people in long-term
care settings. More specifically, maintaining autonomy is essential to the happiness of the
older person living in an institution or a private household. Indeed, as constraints on the
individual’s autonomy lead to pervasive unhappiness which, in turn, expresses itself in
mental illness (specifically depression), maintaining the autonomy of older people in
long-term care is essential to promoting their mental health. However, whilst maintaining
the individual’s autonomy is fundamental to her/his overall quality of life, government
policy views supporting autonomy as only marginal to the quality of life of older people
in long-term care settings. Therefore, the concept of QOL adopted by government is very
limited one such that it is a ‘minimal’, rather than an ‘optimal’, quality of life which is
being sought for older people in long-term care settings (Boyle, 2001).
A fundamental shift in long-term care policy
Long-term care policy and practice relating to older people should have as its main
objective the support of autonomy, rather than prioritising physical independence (Boyle,
2001). The Audit Commission (2000) stated that the quality of care provided by the staff
is the most important factor determining the quality of a residential or nursing home
environment. On the contrary, however, the extent to which staff in institutions or
domiciliary settings and informal carers support or enhance autonomy is crucial in
determining the quality of the environment, In turn, supporting the autonomy of older
people - irrespective of whether they are physically independent - is central to ensuring
that they experience a high quality of life in long-term care settings. Therefore, long-term
care policy should focus less on the quality of care provided than on ensuring the longterm
care environment is an autonomy-enhancing environment (Boyle, 2001).
As autonomy is central to quality of life in long-term care, it is necessary to consider how
best to measure whether autonomy is adequately supported in such settings. Mental
health is an outcome variable which is highly sensitive to restrictions on autonomy.
Hence, poor mental health - particularly depression - indicates that the older person’s
autonomy is being constrained. More specifically, an individual’s level of happiness or
unhappiness is indicative of the extent to which her/his autonomy is supported. However,
in the absence of a developed theory of happiness, indicators of psychological well-being,
particularly mental health, should alternatively be utilised to measure ‘happiness’. In turn,
this would also be indicative of the expression, or restriction of, autonomy (Boyle, 2001).
Consequently, policymakers and care providers should focus on the measurement of the
older person’s mental health status following a long-term care placement (whether in an
institution or a domiciliary care setting). Hence, mental health - or a change in mental
health status - should be utilised as the outcome variable in the assessment of the
suitability of long-term care placements for older people. Therefore, whether from a
welfare, that is, wellbeing, or a social justice perspective, happiness is an appropriate
evaluative outcome measure for the assessment of interventions, placements and care
provision (Boyle, 2001). Contrary to the current policy focus on the promotion of
physical independence, health and social care policy relating to long-term care should
have as its central objective the support and enhancement of the older person’s autonomy.
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