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Mandatory Disclosure and Medical Paternalism

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Abstract

Medical practitioners are duty-bound to tell their patients the truth about their medical conditions, along with the risks and benefits of proposed treatments. Some patients, however, would rather not receive medical information. A recent response to this tension has been to argue that that the disclosure of medical information is not optional. As such, patients do not have permission to refuse medical information. In this paper I argue that, depending on the context, the disclosure of medical information can undermine the patient’s ability to exercise her autonomy or have therapeutically detrimental effects. In the light of these insights I go on to develop a context-sensitive approach to medical disclosure. The advantage of this account is that it addresses concerns on both sides of the debate; whilst it acknowledges that patients do not have an exercisable ‘right not to know,’ it allows that in some cases medical information ought to be withheld.

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Notes

  1. A second requirement of this doctrine is that the patient’s consent is freely given. Because this paper focuses on the disclosure of information, I will not explore the implications of this requirement here.

  2. It is widely acknowledged that it is impossible to give patients ‘full’ or ‘complete’ information about their condition and the treatments available to them. See for instance, Beauchamp and Childress 1989; Grisso and Appelbaum 1998; Brock 1993, and Manson and O’Neill 2007. As such, the demand is only that the patient receives an adequate amount of relevant information in order for her consent to be valid. There is no principled way of determining what information counts as adequate/relevant – but we do have a rough and ready idea. (See, for instance, English et al. 2004: 78)

  3. Many reasons have been given for this, including the importance of respecting the patient, obligations of fidelity and promise-keeping, and establishing trust between the doctor and patient (Beauchamp and Childress 1989)

  4. Discussion as to whether or not patients are permitted to give up their informed consent has been framed in terms of the patient’s possible ‘right not to know.’ (See for instance, Ost 1984 and Laurie 2014). In this paper I have opted not to refer to the patient’s decision to forgo medical information in terms of the ‘right not to know’ in order to avoid the orthogonal discussion as to whether such a right exists.

  5. A full discussion of the reasons why a patient might not want medical information is discussed in Section 4.

  6. This is an approach adopted by both the (Universal Declaration on the Human Genome and Human Rights (UNESCO) (1997) art. 10: 2) and the World Medical Association (WMA) Declaration of Lisbon on the Rights of the Patient 2005, art. 7: d.

  7. See also, Harris and Keywood 2001 and Rhodes 1998.

  8. The waiving of informed consent might be problematic for other reasons (see Beauchamp and Childress 1989). However, the focus of this paper is on the relationship between disclosure and the patient’s preferences for medical information. Given this focus, I will not discuss the ramifications of waiving informed consent here.

  9. It is not my intention in this paper to develop a full analysis of the necessary and sufficient conditions for epistemic paternalism. For this reason I adopt this recent definition without further criticism.

  10. Ahlstrom-Vij (2013) refers to this as the ‘burden-of-proof’ constraint on epistemic paternalism (2013: 135). Note that this does not amount to the more demanding condition that anyone actually benefits epistemically from the interference; the constraint is only that we have good reason for supposing that they will. Such a condition maps on to definitions of paternalism in general which identify the motive (rather than the outcome) of the interferences, as the appropriate criteria for it to count as paternalistic (Shiffrin 2000; Dworkin 1983; New 1999 and Bullock 2015a).

  11. I would like to thank Philip Goff for discussion of this point

  12. See also Angell 2004; Goldacre 2013 and Montori and Guyatt 2007.

  13. As emphasized, the aim of this paper is to object to the argument for mandatory disclosure on its own terms. I am therefore taking it for granted that the proponents of epistemic paternalism have a correct understanding of autonomy. Another approach would be to deny their conception of autonomy altogether (see for instance, Bortolotti 2013; Andorno 2004 and Husted 1997).

  14. This can be a common mistake, since: “[b]y definition, the diagnostic criteria of the moment are always right” (Davis 2010).

  15. For related claims see Manson and O’Neill 2007 and Lamb 1995.

  16. Other empirical studies disagree with this finding. See for instance Galaal et al. (2011) in which there was evidence that psychosexual dysfunction scores were sing significantly lower in women who received informative leaflets compared to those who did not. All this shows, however, is that there is variation in patient response to information. The fact that some patients have elevated anxiety levels is enough to dismiss the paternalistic disclosure of information in all cases.

  17. One could argue, with enough empirical evidence, that the majority of patients will be better off with a policy of mandatory disclosure of information. Since this paper has focuses on the impact of information on individual patients I will not discuss this option here.

  18. This is in part because the exercise of autonomy is plausibly in an individual’s best-interests.

  19. It might be argued that this distinction is not possible, and that patient best-interests are reducible to patient preferences (see Veatch 2000). This would be a separate objection to the mandatory disclosure of medical information. cf. Bullock 2014.

  20. These examples are intended to be illustrative. It should thus be noted that I am not suggesting that whenever a patient is in this situation they ought/ought not be informed. This would be antithetical to the project of varying the decision as to whether to inform patients on the basis of context.

  21. This caveat is needed to rule out the possibility that Bernadette would unwittingly harm herself without this information. We can allow that informing her potential carer might be a pre-condition of her refusing medical information.

  22. I am not suggesting that we have a definitive reason.

  23. These substantive goods need not stand apart. For instance, in some cases disrespect for patient preferences may negatively impact her psychological well-being. Equally, promoting patient autonomy can be directly linked to likely health improvements.

  24. Weighing goods is difficult, but a requirement of justified paternalism (Ahlstrom-Vij 2013)

  25. Protecting this good will rely upon important institutional changes in the procurement, dissemination and interpretation of medical information.

  26. Indeed, these are some of the reasons why paternalism is often found to be objectionable.

  27. In some cases the patient’s preference, let alone her reasons, will not be apparent. If not solicited, the patient’s history of preference for information ought to be taken into consideration.

  28. Classically, the adoption of a policy of disclosing information only when there is good news is self-defeating. This speaks in favor of considering the benefits of disclosure with reference to the other three goods.

  29. I would like to thank an anonymous reviewer for pointing me in this direction

  30. This is often referred to as the ‘disability paradox’ (Ahlbrecht and Devlieger 1999)

  31. I am open to the possibility that there may be other substantive goods to consider, and encourage further discussion along these lines. The suggestion that there are other substantive goods that need to be weighed in the balance does not undermine this account, but complements it.

  32. Thereby moving her scenario [D] to [B].

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Acknowledgements

I would like to thank my colleagues at Central European University for their comments on an earlier draft of this paper. Substantial revisions of the paper were carried out at the Ethox Centre, Oxford as part of the Caroline Miles visiting scholarship; many thanks, especially to Michael Parker, Michael Dunn and Mark Sheehan. I am also grateful to members of the Institut für Experimentelle Medizin department, Christian-Albrechts-Universität zu Kiel for their insightful comments, and to two anonymous reviewers for their encouragement and direction.

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    Emma C. Bullock

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Bullock, E.C. Mandatory Disclosure and Medical Paternalism. Ethic Theory Moral Prac 19, 409–424 (2016). https://doi.org/10.1007/s10677-015-9632-2

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