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'Choice is a small word with a huge meaning': autonomy and decision making at the end of life
- Authors:
- SUTTON Eileen, COAST Joanna
- Journal article citation:
- Policy and Politics, 40(2), April 2012, pp.211-226.
- Publisher:
- Policy Press
The United Kingdom End-of-Life Care Strategy, published in June 2008, recommends the identification, documentation and review of people's preferences for care and highlights the importance of choice at an individual level. This article, drawing on qualitative data, reflects on the complex range of interconnected factors impacting on older people's preferences and decision-making processes at the end of life. Interviews were conducted with 23 people over the age of 65 from the Bristol area of England – 7 people were living in residential care facilities, 5 receiving palliative care, and 11 from the general population. Findings revealed that, as older people began to consider not only themselves but also the impact on loved ones when making decisions, the pertinence of a relational conceptualisation of autonomy was considered. The impact of structural issues on the realisation of preferences is also explored. Implications for theory and practice are discussed.
Valuing the ICECAP capability index for older people
- Authors:
- COAST Joanna, et al
- Journal article citation:
- Social Science and Medicine, 67(5), September 2008, pp.874-882.
- Publisher:
- Elsevier
This paper reports the first application of the capabilities approach to the development and valuation of an instrument for use in the economic evaluation of health and social care interventions. The ICECAP index of capability for older people focuses on quality of life rather than health or other influences on quality of life, and is intended to be used in decision making across health and social care in the UK. The measure draws on previous qualitative work in which five conceptual attributes were developed: attachment, security, role, enjoyment and control. This paper details the innovative use within health economics of further iterative qualitative work in the UK among 19 informants to refine lay terminology for each of the attributes and levels of attributes used in the eventual index. For the first time within quality of life measurement for economic evaluation, a best-worst scaling exercise has been used to estimate general population values (albeit for the population of those aged 65+ years) for the levels of attributes, with values anchored at one for full capability and zero for no capability. Death was assumed to be a state in which there is no capability. The values obtained indicate that attachment is the attribute with greatest impact but all attributes contribute to the total estimation of capability. Values that were estimated are feasible for use in practical applications of the index to measure the impact of health and social care interventions.
Hospital at home or acute hospital care? A cost minimisation analysis
- Authors:
- COAST Joanna, et al
- Journal article citation:
- British Medical Journal, 13.6.98, 1998, pp.1802-1806.
- Publisher:
- British Medical Association
Compares from the viewpoints of the NHS and social services and of patients, the costs associated with early discharge to a hospital at home scheme and those associated with continued care in an acute hospital. In the project evaluated the hospital at home scheme was less costly than care in the acute hospital. These results may be generalisable to schemes of similar size and scope, operating in a similar context of rising acute admissions.
Welfarism, extra-welfarism and capability: the spread of ideas in health economics
- Authors:
- COAST Joanna, SMITH Richard D., LORGELLY Paula
- Journal article citation:
- Social Science and Medicine, 67(7), October 2008, pp.1190-1198.
- Publisher:
- Elsevier
This paper explores the spread of ideas within health economics, in relation to the impact of the capability approach to date and the extent to which it might impact in the future. The paper uses UK decision making to illustrate this spread of ideas. Within health economics, Culyer used the capability approach in developing the extra-welfarist perspective (where health status directly influences which social state is preferred). It is not a direct application of capability as the evaluation's focus remains narrow; the concern is with functioning, and maximisation is retained. Culyer's work provided a theoretical basis for using quality-adjusted life-years in decision making and this perspective is accepted as the basis for evaluation by the UK National Institute of Health and Clinical Excellence (NICE). To the extent that extra-welfarism represents a capability approach, capabilities influence NICE's decision making and hence UK health care provision. This paper explores the extent to which extra-welfarism draws on the capability approach; the spread of extra-welfarist ideas; and recent interest in more direct applications of the capability approach.
What do people value when they provide unpaid care for an older person?: a meta-ethnography with interview follow-up
- Authors:
- AL-JANABI Hareth, COAST Joanna, FLYNN Terry N.
- Journal article citation:
- Social Science and Medicine, 67(1), July 2008, pp.111-121.
- Publisher:
- Elsevier
Government policies to shift care into the community and demographic changes mean that unpaid (informal) carers will increasingly be relied on to deliver care, particularly to older people. As a result, careful consideration needs to be given to informal care in economic evaluations. Current methods for economic evaluations may neglect important aspects of informal care. This paper reports the development of a simple measure of the caring experience for use in economic evaluations. A meta-ethnography was used to reduce qualitative research to six conceptual attributes of caring. Sixteen semi-structured interviews were then conducted with carers of older people to check the attributes and develop them into the measure. Six attributes of the caring experience comprise the final measure: getting on, organisational assistance, social support, activities, control, and fulfilment. The final measure (the Carer Experience Scale) focuses on the process of providing care, rather than health outcomes from caring. Arguably this provides a more direct assessment of carers' welfare. Following work to test and scale the measure, it may offer a promising way of incorporating the impact on carers in economic evaluations.
Patient-reported use of health service resources compared with information from health providers
- Authors:
- RICHARDS Suzanne H., COAST Joanna, PETERS Tim J.
- Journal article citation:
- Health and Social Care in the Community, 11(6), November 2003, pp.510-518.
- Publisher:
- Wiley
Examines the accuracy of older people's reports of health services resource use after discharge from acute care compared with information from healthcare providers. Paired data were obtained from health providers and a consecutive sample of hospitalised patients (60 or over) enrolled in a randomised controlled trial of hospital-at-home versus usual acute care. Retrospective reports of use (yes/no) and number of patient hospital admissions, and community nursing, physiotherapy, health visiting and GP services were obtained between baseline and 4- and 12-week follow-ups, although the recall period varied for different resources. The comparability of paired reports was examined using crude and chance-corrected agreement and by testing for systematic differences in the distribution of paired responses. Of 219 patients enrolled in the trial, 190 and 185 provided data at 4 (87%) and 12 weeks (84%). Crude agreement was over 72% (range 42-93%), and chance-corrected agreement was moderate or good for 11 of 12 comparisons. Systematic differences in the pattern of paired responses were observed for 7 comparisons. Patients more often reported receiving a routine GP home visit (by 12 weeks), whilst health providers reported statistically significantly more patients admitted to hospital (12 weeks) and more admissions per person, requesting a GP home visit (12 weeks) or surgery consultation, and having district nursing (4 and 12 weeks) and physiotherapy (4 weeks only). The data indicate that patients tend to underestimate resources used compared with health providers over relatively short time frames.