Within bioethics, two prevailing approaches structure how we think about the role of medical surrogates and the decisions that they must make on behalf of incompetent patients. One approach views the surrogate primarily as the patient's agent, obediently enacting the patient's predetermined will. The second approach views the surrogate as the patient's custodian, judging for herself how to best safeguard the patient's interests. This paper argues that both of these approaches idealize away some of the ethically relevant features of advance care planning that make patient preferences so inscrutable and surrogate decision-making so burdensome. It proposes a new approach to surrogate decision-making, the Fiduciary Agency Approach. On this novel approach, the surrogate has authority to not only act on the patient's behalf as the patient's agent but also to decide on the patient's behalf as the patient's fiduciary. One upshot of this new approach is that surrogates must sometimes go against the expressed dictates of the patients' advance directives not necessarily because doing so would be in the patient's best interest but rather because doing so would best represent the patients' will.
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References
1.
E. K.Viget al., “Surviving Surrogate Decision-Making: What Helps and Hampers the Experience of Making Medical Decisions for Others,”Journal of General Internal Medicine22, no. 9 (2007): 1274-1279.
2.
D.Brock and A.Buchanan, Deciding for Others (Cambridge: Cambridge University Press, 1998): at 90.
3.
The paper's aims parallel Hannah Pitkin's conception of her account of representation in H.Pitkin, The Concept of Representation (Berkeley, CA: University of California Press, 1967): at 5.
4.
For examples of this approach, see, A.Buchanan, “Principal/Agent Theory and Decisionmaking in Health Care,”Bioethics2, no. 1 (1988): 317-333, at 327-330; see also, New York State Task Force on Life and the Law, Life Sustaining Treatment: Making Decisions and Appointing a Health Care Agent (Albany: New York State Task Force on Life and the Law, 1987): at 91-92.
5.
For examples of this approach, see, D. P.Sulmasy and L.Snyder, “Substituted Interests and Best Judgments: An Integrated Model of Surrogate Decision-Making,”JAMA304 (2010): 1946-1947; R.Dresser, “Precommitment: A Misguided Strategy for Securing Death with Dignity,”Texas Law Review81 (2003): 1823-1847.
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R.Dresser, “Dworkin on Dementia: Elegant Theory, Questionable Practice,” in J. L.Nelson and H. L.Nelson, eds., Meaning and Medicine (New York, NY: Routledge, 1999).
7.
Note that the patient's interests may include having her past will respected, so we needn't think of the pure custodial approach in such absolutist terms. On this point, see Sulmasy and Snyder, supra note 5.
8.
For an extended philosophical analysis about how other people's vulnerabilities give rise to special responsibilities we have towards them (as opposed to our own voluntary commitments to them) see, R.Goodin, Protecting the Vulnerable (Chicago, IL: University of Chicago Press, 1985).
9.
D.Brudney, “Choosing for Another: Beyond Autonomy and Best Interest,”Hastings Center Report39, no. 2 (2009): 31-37, at 33.
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T.Beauchamp and J.Childress, Principles of Biomedical Ethics, 6th ed. (Oxford: Oxford University Press, 2008): at 136-138.
11.
Buchanan and Brock, supra note 2, at 93-96; M.Jonsen, et al., Clinical Ethics, 5th ed. (New York, NY: McGraw Hill, 2002): 84-86; Cruzan v. Director, Missouri Department of Health, 497 U.S. 261 (1990).
12.
Considerations of welfare include relieving the patient's suffering, restoring or preserving her bodily function, securing some threshold for quality of life, etc.
13.
An even more restrictive interpretation of the lexical ordering is sometimes implied in the literature: A present and applicable advance directive makes these other considerations not only unnecessary but also inappropriate for the surrogate's decision-making. I will focus on the more permissive interpretation here but my criticism applies to this stronger claim as well.
14.
Some points of clarification about the patient being wronged by the surrogate's choice to forgo the dictates of the advance directive. First, we should distinguish moral wrongs from legally punishable wrongs. The wrong to the patient results from the surrogate doing something that she does not have the moral authority to do though she may have the legal standing to do it. Second, it should be noted that for the patient to be wronged in this sense does not require that the patient is all-things-considered harmed by a decision to not follow her advance directive. On this model it seems possible for a patient to be wronged by the surrogate choosing a course of treatment that is in her best interest. Third, to say that the patient is being wronged by the decision is not yet to say who specifically is doing the wronging. We may want to hold some combination of the surrogate, the care providers, and the state accountable for the wrongdoing.
15.
D.Brock, “Good Decision-Making for Incompetent Patients,”Hastings Center Report24, no. 6, Special Supplement (1994): S8-S11.
16.
E. J.Emanuel and L. L.Emanuel, “Proxy Decision Making for Incompetent Patients: An Ethical and Empirical Analysis,”JAMA267, no. 15 (1992): at 2068; D.Lerouge and L.Warlop, “Why It is So Hard to Predict Our Partner's Product Preferences: The Effect of Target Familiarity on Prediction Accuracy,”Journal of Consumer Research33, no. 3 (2006): 393-402.
17.
A.Rid and D.Wendler, “Can We Improve Treatment Decision-Making for Incapacitated Patients?”Hastings Center Report40, no. 5 (2010): 36-45; H.Davis, S.Hock, and E.Ragsdale, “An Anchoring and Adjustment Model of Spousal Predictions,”Journal of Consumer Research13, no. 1 (1986): 25-37.
18.
J.Hardwig, “The Problem of Proxies with Interests of Their Own,’Journal of Clinical Ethics, 4, no. 1(1993): 20-27, at 20. For a challenge to such worries, see B.Callopy, “The Moral Underpinning of the Proxy-Provider Relationship: Issues of Trust and Distrust,”Journal of Law, Medicine & Ethics27, no. 1 (1999): 37-45.
19.
See Jonsen et. al., supra note 11, at 85.
20.
See Brudney, supra note 9; Beauchamp and Childress, supra note 10, at 136; Emanuel and Emanuel, supra note 16, at 2069.
21.
F.Miller and A.Wertheimer, “The Fair Transaction Model of Informed Consent: An Alternative to Autonomous Authorization,”Kennedy Institute of Ethics Journal21, no. 3 (2011): 201-218.
22.
H.Hurd, “The Moral Magic of Consent,”Legal Theory2, no. 2 (1996): 121-146, at 123.
23.
For the informational power of hypothetical consent, see R.Dworkin, “The Original Position,” in N.Daniels, ed., Reading Rawls (New York, NY: Basic Books, 1995): at 18.
24.
One could say that Margaret Keane's consent does generate for Walter Keane a permission to do the wrong thing. That is, Margaret's consent “defeats any rights on the part of others (including the person consenting) that the actor not do the right thing.” This may be the correct interpretation of how consent works, however this distinction doesn't seem relevant for surrogate decision-making. The surrogate should not be looking toward an advance directive as an excuse to do the wrong thing. On the possibility of actual consent granting such “stained permissions,” see Hurd, supra note 22.
25.
See S.Ashwiniet al., “How Strictly Do Dialysis Patients Want Their Advance Directives Followed?”JAMA267, no. 1 (1992): 59-63; C. M.Puchalskiet al., “Patients Who Want Their Family and Physician to Make Resuscitation Decisions for Them: Observations from SUPPORT and HELP,”Journal of American Geriatric Society48, no. 5, Supp. (2000): S84-S90; J. J.Finset al., “Contracts, Covenants and Advance Care Planning: An Empirical Study of the Moral Obigations of Patient and Proxy,”Journal of Pain and Symptom Management29, no. 1 (2005): 55-68.
26.
M.Silveira, S.Kim, and K.Langa, “Advance Directives and Outcomes of Surrogate Decision Making before Death,”New England Journal of Medicine (2010): 1211-1218.
27.
In one investigation that aggregated and analyzed 19,526 paired patient-surrogate responses to these hypothetical scenarios, the average correct correlation was 68%, where 50% correlation would have been the result of the surrogates randomly guessing. See Uhlmannet al., “Physicians' and Spouses' Predictions of Elderly Patients' Resuscitation Preferences,”Journal of Gerantology43, no. 5 (1988): M115-M121; K. M.Coppolaet al., “Accuracy of Primary Care and Hospital Based Physicians' Predictions of Elderly Outpatients' Treatment Preferences with and without Advance Directives,”Archives of Internal Medicine161, no. 3 (2001): 431-440.
28.
Intriguingly, the only group studied in which consultation of an advance directive does significantly improve predictive accuracy is the group of ER physicians who have no prior relationship to patients. See, Uhlmann et al., supra note 27; P.Ditto, “Advance Directives as Acts of Communication: A Randomized Control Trial,”Archives of Internal Medicine161, no. 3 (2001): 421-429.
29.
A.Fagerlin and C.Schneider, “Enough: The Failure of the Living Will,”Hastings Center Report34, no. 2 (2004):30-42; H.Perkins, “Controlling Death: The False Promise of Advance Directives,”Annals of Internal Medicine174 (2007): 51-57.
30.
See Dresser, supra note 5, at 1825.
31.
See Pitkin, supra note 3, at 8.
32.
In economic theory, this becomes a problem of efficiency for all agency relations since “the principal cannot perfectly and cost-lessly monitor the agent's action and information.” See J.Pratt and R.Zeckhauser, “Principals and Agents: An Overview,” in J.Pratt and R.Zeckhauser, eds., Principals and Agents: The Structure of Business (Cambridge, MA: Harvard Business School Press, 1985): 2-3.
33.
Notice that their motivation for doing as we have chosen can be myriad: perhaps they are worried about liability, or they feel legally bound by our contractual agreement, or they hope to gain our trust in the interest of further economic interactions. All these motivations can cause someone to act, perhaps only coincidentally, in a way that is representative of our will.
34.
B.Kelly, A.Rid, and D.Wendler, “Systematic Review: Individuals' Goals for Surrogate Decsionmaking,”Journal of American Geriatrics Society60 (2012): 884-895. See also, P.Singer, M.Douglas, and M.Kelner, “Quality End of Life Care: Patient's Perspectives,”JAMA281 (1999): 163-168.
35.
M. P.S.van Wijmenet al., ‘Motivations, Aims and Communication around Advance Directives,”Patient Education and Counseling95 (2014): 393-399.
36.
A.Ridet al., ‘Patients’ Priorities for Treatment Decision Making during Periods of Incapacity: A Quantitative Study,”Palliative and Supportive Care13, no. 5 (2014): 1-19.
37.
I do not wish to imply that in the absence of an advance directive, it would be inherently impermissible to decline dialysis on behalf of a decisionally incompetent patient. There could be reasons based on the patient's present condition that would make refusing dialysis a permissible option regardless of their previous authorization — perhaps the patient is deathly afraid of needles or is in the process of dying from another medical condition. If this turns out to be the case, then an advance directive that had previously been filled out by the patient when they were of sound mind refusing life sustaining treatment would not have the transformative power that it does in Joseph's case.
38.
See J.Raz, The Authority of Law: Second Edition (Oxford: Oxford University Press, 2009): at 18.
39.
Exclusionary reasons are not in themselves reasons for action, rather they are reasons to not consider other considerations as reasons for action. Another way to put it, exclusionary reasons are not reasons to j rather they are reasons to not not j-for-a-certain-set-of-reasons. See, D.Enoch, “Authority and Reason-Giving,”Philosophy and Phenomenological Research89, no. 2 (2014): 296-332, at 322.
40.
They still have the moral power to rebuke the doctor for not adequately communicating to the surrogate the significance of certain considerations prior to the surrogate's ultimate decision.
41.
On a similar point, see Fins et al., supra note 25.
42.
D. G.Smith, “The Critical Resource Theory of Fiduciary Duty,”Vanderbilt Law Review55 (2002): 1399-1497; D. A.Demott, “Beyond Metaphor: An Analysis of Fiduciary Obligation,”Duke Law Journal37 (1988): 879-924.
43.
Meinhard v. Salmon, 164 N.E. 545, 546 (N.Y. 1928)
44.
L. E.Mitchell, “The Death of Fiduciary Duty in Close Corporations,”U. Pennsylvania Law Review138 (1990): 1675-1731, at 1696; See also Harper v. Adametz, 113 A. 2d 136, 139 (Conn. 1955): “[Equity] has carefully refrained from deciding a fiduciary relationship in precise detail and in such a manner as to exclude new situations.”
45.
T.Frankel, “Fiduciary Law in the 21st Century,”Boston University Law Review91, no. 3 (2011): 1292-1293. See also, U.S. v. Chestman 947 F. 2d 551, 569.
46.
E.Fox-Decent, “The Fiduciary Nature of State Authority,”Queens Law Journal31 (2005): 259-310, at 304.
47.
D.Demott, “Disloyal Agents,”Alabama Law Review58 (2007): 1049-1067.
48.
A.Wertheimer, Exploitation (Princeton, NJ: Princeton University Press, 1999): at 182.
49.
Note how this differs from agency relations more generally where one may accidently or for self-interested reasons live up to one's role in representing the principal's will through one's actions on the principal's behalf, supra note 33. See S.Galoob and E.Leib, “Intentions, Compliance and Fiduciary Obligations,”Legal Theory20 (2014): 106-132; M.Harding, “Trust and Fiduciary Law,”Oxford Journal of Legal Studies33, no. 1 (2013): 81-102.
50.
S.FitzGibbon, “Fiduciary Relations Are Not Contracts,”Marquette Law Review82, no. 2 (1999): 303-353, at 310.
51.
E.Leib, “Friends as Fiduciaries,”Washington University Law Review86, no. 3 (2009): 665-732, at 677.
52.
“Typically, the duties imposed on, and the powers exercised by [the fiduciary], each have a source other than in any agreement between him and the person(s) for whose benefit he is required to act.”F. D.Finn, Fiduciary Obligations (Sidney: The Law Book Co., 1977): at 9.
53.
M. A.Rodwin, “Strains in the Fiduciary Metaphor: Divided Physician Loyalties and Obligations in a Changing Health Care System,”American Journal of Law & Medicine21, nos. 2-3 (1995): 241-257, at 244.
54.
Harper v. Adametz, 113 A. 2d 136, 139 (Conn. 1955).
55.
See Fox-Decent, supra note 46, at 296.
56.
Contrast this understanding with a number of scholars who deem asymmetries in power and expertise to be the distinctive feature of fiduciary relationships. For example Alan Worth-heimer claims, “We are apt to adopt the fiduciary model when there are significant structural inequalities between the principal and the agent with respect to competence, expertise, or power.” See Worthheimer, supra note 48, at 182; See also, D.Ponet and F.Leib, “Fiduciary Law's Lessons for Deliberative Democracy,”Boston University Law Review91 (2011): 249-261, at 1255-1256. I should note that the concept of the fiduciary has come up in other areas of clinical ethics. For example, for critical analyses for whether to approach the physician-patient relationship as a fiduciary relation, see Rodwin, supra note 52 as well as S.Joffe and R.Truog, “Consent to Medical Care: The Importance of Fiduciary Context,” in F.Miller and A.Wertheimereds., The Ethics of Consent: Theory and Practice (Oxford: Oxford University Press, 2010): 347-337. However, little has been written so far about the possibility of approaching the medical surrogate as a fiduciary. I believe this is because fiduciary relationships are often understood in terms of underlying asymmetries in power and expertise as well as purely economic relationships and so the concept of fiduciary seems out of place when thinking about relations between loved ones.
57.
United States V. Chestman, 947 F. 2d 551, 569 (2nd Circuit 1991): “A fiduciary Relationship Involves discretionary authority and dependency.” See also Fox-Decent, supra note 46; see also, D.DeMott, “Beyond Metaphor: An Analysis of Fiduciary Obligation,”Duke Law Journal37 (1988): 879-924, at 901.
58.
Frame v. Smith (1987) 2S.C.R.99 at 136 Wilson, J. Dissenting. As Fox-Decent notes, “Wilson J.'s ‘rough and ready’ guide has since been reaffirmed, with some qualifications, in a number of important fiduciary cases.” Among the examples that Fox-Decent cites are, Lac Minerals Ltd. v. International Corona Resources Ltd., [1989] 2 S.C.R. 574 [Lac Minerals]; Canson Enterprises Ltd. v. Boughton & Co., [1991] 3 S.C.R. 534; Hodgkinson v. Simms, [1994] 3 S.C.R. 377 [Hodgkinson]. See Fox-Decent, supra note 46, at 274, fn. 22.
59.
This is especially the case in the United States since the passing of the Patient Self-Determination Act that requires federally funded medical facilities to inform patients of their right to make decisions concerning their long-term medical care. We should assume, then, that a large portion of the patient population is aware at least of the right to draft such a document.
60.
A.Rid and D.Wendler, “Can We Improve Treatment Decision-Making for Incapacitated Patients?”Hastings Center Report40, no. 5 (2010): 36-45; see also A.Rid and D.Wendler, “Use of a Patient Preference Predictor to Help Make Medical Treatment Decisions for Incapacitated Patients,”Journal of Medicine and Philosophy39 (2014): 104-129; see also D.Shalowitz, E.Garrett-Mayer, and D.Wendler, “How Should Treatment Decisions Be Made for Incapacitated Patients, and Why?”PLOS Medicine4, no. 3 (2007): 423-528.
61.
For instance, studies have found that people are more hesitant to terminate care for a loved one than they are for themselves. See Emanuel and Emanuel, supra note 16, at 2068; see also L. L.Emanuelet al., “Advance Directives for Medical Care — A Case for Greater Use,”New England Journal of Medicine324 (1991): 889-895.
