* We are grateful to Kathy Cerminara, Sharon Cowan, Sarah Nettleton, Julie Latchem and Glenys Williams, all of whom read and commented on earlier drafts. This paper was part-funded by Research Priming Funds provided by the Wellcome Trust [ref: 097829/Z/11/A].

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15. Lack of mental capacity is defined in ss 2 and 3.

16. Currently, only 4% of the population of England and Wales reports having made an Advance Decision and only 4% reports having appointed anyone as their Health and Welfare Lasting Power of Attorney (YouGov 2013; http://www.compassionindying.org.uk/knowledge-end-life-rights-and-choices-yougov-poll2013, accessed 15 January 2014). In G v E [2010] EWCA 2512, J Baker elaborated the principle underpinning the statutory provisions regarding deputies: ‘the words of s16(4) are clear. They do not permit the court to appoint deputies simply because “it feels confident it can” but only when satisfied that the circumstances and the decisions which will fall to be taken will be more appropriately taken by a deputy or deputies rather than by a court, bearing in mind the principle that decisions by the courts are to be preferred to decisions by deputies’ (para 61).

17. Mental Capacity Act 2005, s 24.

18. Ibid, ss 9–11. Note, however, that, under s 11(8) an attorney can only refuse life-sustaining treatment if the grant of the power of attorney expressly provides for this.

19. Ibid, s 16.

20. Ibid, s 20.

21. Albeit wrongly, 48% of people believe that they have the legal right to make medical decisions on behalf of an adult family member who lacks capacity to make decisions for themselves; 22% did not know whether they had this legal right or not; only 22% answered correctly that they did not have this right (YouGov 2013; http://www.compassionindying.org.uk/knowledge-end-life-rights-and-choices-yougov-poll2013, accessed 15 January 2014).

22. Mental Capacity Act 2005, s 4.

23. Court of Protection Practice Direction 9E, available at http://webarchive.nationalarchives.gov.uk/20110218200720/http://www.hmcourts-service.gov.uk/cms/files/09E_-_Serious_Medical_Treatment_PD.pdf (accessed 15 January 2014).

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25. Aintree University Hospitals NHS Foundation Trust v James [2013] UKSC 67, per Lady Hale, at para 22.

26. See above n 6.

27. Mental Capacity Act 2005, s 4.

28. The ‘best interests’ test is equally applicable, of course, to more routine clinical decisions not involving ‘serious medical treatment’.

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32. For more information about interviewees (and patients) represented by the sample, see ibid.

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54. Ewick and Silbey, above n 12, p 76.

55. Ibid, p 84.

56. [2011] EWHC 2443 (Fam).

57. Ewick and Silbey, above n 12, pp 186–187.

58. Halliday and Morgan, above n 11.

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