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“Keeping Her Whole”: Bereaved Families’ Accounts of Declining a Request for Organ Donation

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1. NHSBT; available at http://www.uktransplant.org.uk/ukt/default.jsp (last accessed 11 Jan 2011).

2. The Human Tissue Act, which got royal assent in November 2004 and was implemented in April 2006 (for transplantation September 2006), states in part 1, section 2, that in the case of a child “appropriate consent means the consent of a person who has parental responsibility for him (the child).” Section 3 states that in the case of an adult “appropriate consent” rests with “a nominated person” or “person who stood in a qualifying relationship to him immediately before he died.” There are a number of criteria listed defining qualifying relationships.

3. Human Tissue Act, London: Her Majesty’s Stationery Office; 2004.

4. Department of Health (DH). Organs for Transplants: A Report from the Organ Donation Taskforce. London: DH; 2008.

5. Sque M, Long T, Payne S, Allardyce D. Why relatives do not donate organs for transplants: "Sacrifice" or "gift of life"? Journal of Advanced Nursing 2008;61:134–44.

6. See note 4, DH 2008.

7. Department of Health (DH). End of Life Care Strategy: Promoting High Quality Care for All Adults at the End of Life. London: DH; 2008.

8. Richardson R. Human dissection and organ transplantation in historical context. In: Sque M, Payne S, eds. Organ and Tissue Donation: An Evidence Base for Practice. Maidenhead: Open University Press; 2007:420.

9. Glaser B. The use of secondary analysis by the independent researcher. American Behavioural Scientist 1963;6:93102.

10. Heaton J. Reworking Qualitative Data. London: Sage; 2004.

11. Long-Sutehall T, Sque M, Addington-Hall J. Secondary analysis of qualitative data: A valuable method for exploring sensitive issues with an elusive population? Journal of Research in Nursing 2010:110.

12. See note 5, Sque et al. 2008, at 134–44.

13. Hodge R, Kress G. Language as Ideology. London: Routledge; 1993.

14. van Leeuwen T, Wodak R. Legitimizing immigration control. Discourse Studies 1999:1:83118.

15. Fairclough N. Discourse and Social Change. Oxford: Polity Press; 1992.

16. Halliday MAK. An Introduction to Functional Grammar. 2nd ed.London: Edward Arnold; 1994.

17. Van Dijk TA. Principles of critical discourse analysis. Discourse & Society 1993;4:249–83.

18. Barker C, Galasiński D. Cultural Studies and Discourse Analysis. London: Sage; 2001.

19. See note 15, Fairclough 1992.

20. See note 16, Halliday 1994.

21. See note 16, Halliday 1994.

22. See note 16, Halliday 1994.

23. For more accessible reading, we decided to simplify the transcription to the absolute minimum, leaving only the basic intonation signatures (full stops) as well as noting significant pauses (dots in round brackets) and backchannel responses. Omitted text is noted in square brackets. Italicized text indicates the fragments to which we want to draw the readers’ attention.

24. Halliday MAK. Language as Social Semiotic. London: Edward Arnold; 1978.

25. Halliday MAK, Hasan R. Language, Context, and Text. Oxford: Oxford University Press; 1985.

26. Galasiński D. Men and the Language of Emotions. Basingstoke: Palgrave; 2004.

27. Epistemic modality is the capacity of clauses to express the speaker’s certainty, from very low to very high (see note 16, Halliday 1994). Modalization introduces an aspect of degree and thus makes propositions weaker or stronger.

We would like to thank NHSBT (formerly UK Transplant) for funding the study Exploring the End of Life Decision-Making and Hospital Experiences of Families Who Did Not Donate Organs or Tissues for Transplant Operations, on which this article is based.

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Cambridge Quarterly of Healthcare Ethics
  • ISSN: 0963-1801
  • EISSN: 1469-2147
  • URL: /core/journals/cambridge-quarterly-of-healthcare-ethics
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