‘All the services were excellent. It is when the human element comes in that things go wrong’: dissatisfaction with hospital care in the last year of life

Authors


Karlsen Department of Palliative Care and Policy, Guy’s, King’s and St Thomas School of Medicine, The New Medical School Building, Bessemer Road, Denmark Hill, London SE5 9PJ, England. E-mail: saffron@public-health.ucl.ac.uk

Abstract

‘All the services were excellent. It is when the human element comes in that things go wrong’: dissatisfaction with hospital care in the last year of life

Patient satisfaction surveys are seen as an important way of obtaining ‘user views’ of health service provision. However, there is a growing body of research and theoretical literature that questions the validity of the concept of ‘patient satisfaction’ and hence the use of this type of survey. A postbereavement survey of people who registered a random sample of cancer deaths in an inner London health authority was undertaken in 1996/7. The survey questionnaire (VOICES) included 14 open-ended questions which asked respondents to add any comments they felt were relevant about the care of the deceased. This paper uses these data to examine the causes of dissatisfaction with hospital-based care. Of the 229 informants responding to the questionnaire, 138 included some written comment about care in hospital. At least one negative comment was made by 59% (82) of those making any comment. Of these, 55% (44) rated the care given by doctors as ‘excellent’ or ‘good’ and 63% (50) rated that given by nurses as ‘excellent’ or ‘good’. Qualitative analysis of responses to open questions suggest that expressions of dissatisfaction arise from a sense of being ‘devalued’, ‘dehumanized’ or ‘disempowered’ and from situations in which the ‘rules’ governing the expected health professional–patient relationships were broken. As such, the causes of dissatisfaction for this particular group of patients are similar to the causes of dissatisfaction with health care in general reported elsewhere. The palliative care approach emphasizes patient- and family-centred care and aims to promote physical and psychosocial well-being. The study findings suggest that adoption of the palliative care approach could reduce the experience of dissatisfaction for many service users, not only those whose deaths are anticipated.

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