The promotion of quality of life in long-term care policy - SFI

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The promotion of quality of life in long-term care policy - SFI

ESPAnet Conference

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)

Introduction

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.

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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 -

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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

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on behalf of the older person. Consequently, the autonomy of older people is neglected

(Boyle, 2001).

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.

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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 ofindependence’ 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.

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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

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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

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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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References

Audit Commission (2000) Forget me not: Mental health services for older people,

London: The Audit Commission.

Bamford, C. and Bruce, E. (2000) ‘Defining the outcomes of community care: the

perspectives of older people with dementia and their carers’, Ageing and Society, Vol. 20,

pp. 543-570.

Boaz, A., Hayden, C. and Bernard, M. (1999) Attitudes and aspirations of older people: a

review of the literature, Dept. of Social Security Research Report No. 101, London: DSS.

Bowling, A., Banister, D., Sutton, S., Evans, O. and Windsor, J. (2002) ‘A

multidimensional model of the quality of life in older age’, Aging & Mental Health, Vol.

6, No. 4, pp. 355-371.

Boyle, G. (2001) Quality of life and autonomy in long-term care: A Belfast study,

Doctoral thesis, Belfast: Queen’s University.

Counsel and Care (2000) Moving to quality, No. 6: Fostering residents’ selfdetermination,

London: Counsel and Care.

Department of Health (1989) Caring for people: Community care in the next decade and

beyond, Cm 849, London: HMSO.

Department of Health (2001) National service framework for older people, London:

DOH.

Harding, T., Meredith, B. and Wistow, G. (1996) ‘Looking to the future’ in Harding, T.,

Meredith, B. and Wistow, G. (eds.) Options for long term care: Economic, social and

ethical choices, London: HMSO.

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Henwood, M. and Waddington, E. (1998) Expecting the worst? Views on the future of

long-term care, London: Help the Aged.

Levick, P. (1992) ‘The janus face of community care legislation: An opportunity for

radical possibilities?’, Critical Social Policy, Vol. 12, No. 1, pp. 75-92.

Lord Chancellor’s Department (1999) Making decisions: The government’s proposals for

making decisions on behalf of mentally incapacitated adults, Cm. 4465, London: The

Stationery Office.

Nordenfelt, L. (1993) Quality of life, health and happiness, Aldershot: Avebury.

Qureshi, H. and Henwood, M. (for Joseph Rowntree Foundation) (2000) Older people’s

definitions of quality services, York: York Publishing Services.

Qureshi, H., Patmore, C., Nicholas, E. and Bamford, C. (1998) Overview: outcomes of

social care for older people and carers, Outcomes in community care practice, No. 5,

York: Social Policy Research Unit.

Raynes, N. V. (1998) ‘Involving residents in quality specification’, Ageing and Society,

Vol. 18, pp. 65-78.

Sainsbury, S. (1995) ‘Disabled people and the personal social services’, in Gladstone, D.

(ed.) British social welfare: Past, present and future, London: UCL.

Secretary of State for Health (1998) Modernising Social Services: Promoting

independence, improving protection, raising standards, Cm 4169, London: The

Stationery Office.

Secretary of State for Northern Ireland (1990) People First: Community care in Northern

Ireland in the 1990s, London: HMSO.

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Walker, A. (1993) ‘Community care policy: From consensus to conflict’ in Bornat, J.,

Pereira, C., Pilgrim, D. and Williams, F. (eds.) Community care: A reader, London:

Macmillan.

World Health Organization Quality of Life Group (1995) The World Health Organization

Quality of Life Assessment (WHOQOL): Position paper from the World Health

Organization, Social Science and Medicine, Vol. 41, No. 10, pp. 1403-1409.

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