Surrogates have not been shown to make inaccurate substituted judgments

Journal of Clinical Ethics

Volumn 20, Issue 3, 2009, Pages 266-273

  Broström, Linus ^a   Johansson, Mats ^a  

^a LUND UNIVERSITY   (Sweden)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; DECISION MAKING; ETHICS; HUMAN; INFORMED CONSENT; RIGHT TO DIE; TERMINAL CARE; TREATMENT WITHDRAWAL;

DECISION MAKING; HUMANS; JUDGMENT; RIGHT TO DIE; TERMINAL CARE; THIRD-PARTY CONSENT; WITHHOLDING TREATMENT;

EID: 70449732636     PISSN: 10467890     EISSN: None     Source Type: Journal    
DOI: None     Document Type: Article

References (37)

1. For brevity we use the term "surrogate" for every decision maker other than the patient, even though we realize that applying it to a physician may deviate from the linguistic norm.
2. This is a simplification, since SJS has been formulated in different ways. This stripped-down version, however, is the most common one, and the differences between alternative formulations of the standard are inconsequential to the argument we make in this article.
3. This literature has been systematically reviewed in D.I. Shalowitz, E. Garrett-Mayer, and D. Wendler, "The Accuracy of Surrogate Decision Makers: A Systematic Review," Archives of Internal Medicine 166, no.5 (2006): 493-7.
4. Recent or fairly recent contributions include A. V. Mantravadi, B.P. Sheth, R.S. Gonnering, and D.J. Covert, "Accuracy of Surrogate Decision Making in Elective Surgery," Journal of Cataract & Refractive Surgery 33, no. 12 (2007): 2091-7;
5. R.A. Pruchno, E.P. Lemay Jr, L. Field, and N.G. Levinsky, "Predictors of Patient Treatment Preferences and Spouse Substituted Judgments: The Case of Dialysis Continuation," Medical Decision Making 26, no. 2 (2006): 112-21;
6. A. Fagerlin et al., "Projection in Surrogate Decisions about Life-Sustaining Medical Treatments," Health Psychology 20, no. 3 (2001): 166-75;
7. and P.H. Ditto et al., "Advance Directives as Acts of Communication: A Randomized Controlled Trial," Archives of Internal Medicine 161, no. 3 (2001): 421-430
8. This is to simplify matters, in particular because responses that express uncertainty are often treated as preferences (or predictions of preferences) that express a positive attitude towards treatment - a practice that is considered justified because it mirrors the clinical default to provide treatment unless specifically refused. This practice, which is criticized in M. Johansson and L. Broström, "Turning Failures into Successes: A Methodological Shortcoming in Empirai Research on Surrogate Accuracy," Theoretical Medicine and Bioethics 29, no.1 (January 2008): 17-26, makes no difference to the argument that follows.
9. That people's preferences may change over time is frequently recognized and sometimes adjusted for; see e.g. R.M. Houts et al., "Predicting Elderly Outpatients' Life-Sustaining Treatment Preferences over Time: The Majority Rules," Medical Decision Making 22, no.1 (2002): 39-52. However, the point we are about to make is that, contrary to common belief, it is not enough for substituted judgments to accommodate the fact that preferences are moving targets in this temporal sense.
10. Fagerlin et al., see note 3 above, p. 173.
11. Compare with. R.A. Pruchno, E.P. Lemay Jr., L. Field, and N.G. Levinsky, "Spouse as Health Care Proxy for Dialysis Patients: Whose Preferences Matter?" Gerontologist 45, no.6 (2005): 812-9, pp. 817-8.
12. Fagerlin et al., see note 3 above, p. 173.
13. A question we address also to Shalowitz et al., see note 3 above, in which the following unelaborated admission can be found: "it is impossible to measure surrogate accuracy in actual cases because it is not possible to know the preferences of patients when they are incapacitated," p. 497.
14. Even in those cases when it makes sense to suppose that an incompetent patient's preference is merely "inactivated" temporarily, or cannot be expressed (as when a patient has an epileptic fit or a brief psychotic episode, e.g.), this preference isn't necessarily the one that a surrogate ought to satisfy, according to SJS. One should also adjust for possible factual mistakes underlying a preference, as well as other formative factors that ought to be left out of the equation. More about this below.
15. See note 7 above.
16. Preferences and decisions are not the same thing, and they deserve to be distinguished more often in the discussion. For present purposes, however, the issue is not that important, and we shall here largely follow the empirical literature in speaking of a patient's "preferences."
17. See e.g. the formulations of the standard found in President's Commission for the Study of Ethical Problems in Medicine and Biomedical and Behavioral Research, Deciding to Forego Life-Sustaining Treatment (Washington D.C: U.S. Government Printing Office, 1983), 132,
18. and A.E. Buchanan and D.W. Brock, Deciding for Others: The Ethics of Surrogate Decision Making (Cambridge: Cambridge University Press, 1991), 94.
19. L. Broström, M. Johansson, and M.K. Nielsen, " 'What the Patient Would Have Decided': A Fundamental Problem with the Substituted Judgment Standard," Medicine, Health Care and Philosophy 10, no.3 (2007): 265-278
20. See e.g. S. Lichtenstein and P. Slovic, ed., The Construction of Preference (Cambridge: Cambridge University Press, 2006), for recent results and discussions regarding such matters.
21. This general idea has been expressed in different ways. For an uncommonly precise (and therefore more vulnerable) version of the suggestion, see e.g. J. Savulescu, "Rational Desires and the Limitation of Life-Sustaining Treatment," Bioethics 8, no.3 (1994): 191-222.
22. The alert reader will have realized that this talk about a patient's deepest priorities, or values, is highly problematic, for the same reason as talk about an incompetent patient's "true" preferences is problematic. What could it mean that an incompetent patient has deeply considered values? Or if we have in mind priorities had by this person before the onset of incompetence, couldn't such priorities change over time, and what would then warrant singling out personal values had at one point in time rather than at some other point in time? Such problems again amplify that the notion of what a patient would have wanted is a construction of sorts. Nonetheless, we believe that on any remotely plausible moral justification of SJS, this standard will ask the surrogate to idealize a patient's decision conditions, in roughly the ways sketched above.
23. See L. Brostr̈m and M. Johansson, "Extending Autonomy by Substituting Judgment: A Case of Mistaken Identity," in The Substituted Judgment Standard: Studies on the Ethics of Surrogate Decision Making (Lund, Sweden: Lund University Faculty of Medicine, 2007), 1-25.
24. Cf. R. Baergen, "Revising the Substituted Judgment Standard," The Journal of Clinical Ethics 6, no.1 (1995): 30-38, where a similar point is made in terms of SJS's "unintended sensitivity" to "nonvalues."
25. L.J. Schneiderman, R.M. Kaplan, E. Rosenberg, and H. Teetzel, "Do Physicians' Own Preferences for life-Sustaining Treatment Influence Their Perceptions of Patients' Preferences?" The Journal of Clinical Ethics 4, no.1 (1993): 28-33, p. 31.
26. See also Fagerlin et al., see note 3 above.
27. Another approach to SJS, with some intuitive plausibility, maintains that surrogate decision makers need to make treatment choices that reflect not so much a patient's deeper values, but rather a patient's character. There is much to say about this alternative interpretation of SJS. The important point here is that there is no evidence that patients and surrogates have paid appropriate attention to character when participating in relevant research.
28. Similar misgivings about this research paradigm, although from a somewhat different angle, are expressed in M. Kuczewski, "From Informed Consent to Substituted Judgment: Decision-Making at the End-of-Life," HEC Forum 16, no.1 (2004): 27-37. Kuczewski argues there are "significant reasons to doubt that the responses of the patient and the prospective surrogate (...) are relevant to their future clinical decision-making regarding endof-life care" (p. 30). According to him, the problem is that these responses do not reflect judgments that have come out of an informed-consent process characterized by deliberation and the refinement of values within a longer family dialogue. This is the kind of process that, on Kuczewski's view, patients and their prospective surrogates often go through, and the kind of process that a surrogate should simulate, as it were, once a patient has become incompetent. We think there is much to be said for this kind of approach, but wish to stress that when a patient becomes incompetent, there is an obvious and important sense in which it is up to a surrogate how to continue the "dialogue," and to assess its relevance. A significant normative constraint, we would argue, is that a surrogate takes less seriously imagined conversations that do not help uncover or refine a patient's deeper sentiments.
29. Compare P.M. Layde et al., "Surrogates' Predictions of Seriously 111 Patients' Resuscitation Preferences," Archives of Family Medicine 4, no.6 (1995): 518-23, p. 519;
30. A.B. Seckler et al., "Substituted Judgment: How Accurate Are Proxy Predictions?" Anuais of Internal Medicine 115, no. 2 (1991): 92-8, p. 97.
31. If one does understand that the preferences relevant to SJS are hypothetical, and believes that patient respondents have conjectured what these future hypothetical preferences would be, the results regarding the accuracy of predictions would have a bearing on surrogates' abilities to satisfy SJS only under the assumption that patient respondents are likely to be generally right about what they would want in the hypothetical scenario. But this assumption is patently unfounded.
32. President's Commission, p. 133, see note 11 above.
33. See note 17 above.
34. E.g. Pruchno et al., see note 3 above.
35. E.g. Fagerlin et al., see note 3 above;
36. Schneiderman et al., see note 19 above;
37. and L.J. Schneiderman, R.M. Kaplan, E. Rosenberg, and H. Teetzel, "Do Physicians' Own Preferences for Life-Sustaining Treatment Influence Their Perceptions of Patients' Preferences? A Second Look," Cambridge Quarterly of Health Care Ethics 6, no.2 (1997): 131-137