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Are patients receiving enough information about healthcare rationing? A qualitative study
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  1. Amanda Owen-Smith1,
  2. Joanna Coast2,
  3. Jenny Donovan1
  1. 1Department of Social Medicine University of Bristol, Bristol, UK
  2. 2Health Economics Unit, University of Birmingham, Edgbaston, Birmingham, UK
  1. Correspondence to Dr Amanda Owen-Smith, Department of Social Medicine, Canynge Hall, University of Bristol, 39 Whatley Road, Bristol BS8 2PS, UK; a.owen-smith{at}bris.ac.uk

Abstract

Background There is broad international agreement from clinicians and academics that healthcare rationing should be undertaken as explicitly as possible, and the BMA have publicly supported the call for more accountable priority setting for some time. However, studies in the UK and elsewhere suggest that clinicians experience a number of barriers to rationing openly, and the information needs of patients at the point of provision are largely unknown.

Methodology In-depth interviews were undertaken with NHS professionals working at the community level of provision, and with patients and professionals receiving or providing treatment for morbid obesity and breast cancer (n=52).

Results Nearly all patients wanted to know about healthcare rationing and had high expectations of their clinical professionals to provide all relevant information about treatment options. However, professionals did not always understand these information requirements, and cases of implicit rationing were common. The existence of relevant national guidance was not always known about, meaning that patients were often reliant on other sources of information about treatment options, which included the popular media, the internet, patient advocacy groups and informal networks of support.

Discussion Clinical professionals need to understand patients' need for detailed information when it comes to rationing, and to understand that they are the main gateway for this to be provided. However, disclosure could be distressing for both patients and professionals, and thus the most sensitive and acceptable ways to make this information available requires further investigation.

  • Truth disclosure
  • allocation of healthcare resources

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Footnotes

  • Funding The research was undertaken as part of the fieldwork for AOS's PhD research, which was jointly funded by the Medical Research Council and Economic and Social Research Council.

    The University of Bristol acted as sponsor for the research, but had no direct role in its planning, conduct, data analysis and interpretation, or the decision to submit this article for publication. The research was undertaken independently of funding bodies (MRC and ESRC).

  • Competing interests None.

  • Ethics approval Ethics approval was provided by Southmead NHS Local Research Ethics Committee in May 2005 (05/Q2002/11), and approval for the case studies of morbid obesity and breast cancer was received from the Multicentre NHS Research Ethics Committee for Wales in November 2005 (05/MRE09/9) and May 2006 (06/MRE09/22), respectively.

  • Patient consent Obtained.

  • Provenance and peer review Not commissioned; externally peer reviewed.

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