empirical fallacies in the debate on substituted judgment
TRANSCRIPT
ORI GIN AL ARTICLE
Empirical Fallacies in the Debate on SubstitutedJudgment
Mats Johansson • Linus Brostrom
Published online: 25 February 2012
� Springer Science+Business Media, LLC 2012
Abstract According to the Substituted Judgment Standard a surrogate decision
maker ought to make the decision that the incompetent patient would have made,
had he or she been competent. This standard has received a fair amount of criticism,
but the objections raised are often wide of the mark. In this article we discuss three
objections based on empirical research, and explain why these do not give us reason
to abandon the Substituted Judgment Standard.
Keywords Substituted Judgment Standard � Incompetence �Proxy decision making
Introduction
Incompetent patients need someone else to make decisions on their behalf, and a
central issue concerns how such decisions are to be made. According to one
influential idea the surrogate decision maker ought to make the decision that the
patient would have made now, if competent. This, we believe, is the most common
interpretation of the so-called Substituted Judgment Standard (SJS). SJS has been
extensively discussed. The received view is that doing what the patient would have
done, if competent, is one way of protecting, or promoting, the person’s autonomy,
or self-determination [1–4]. While some commentators, ourselves included, have
suggested that giving consideration to what the patient would have done might serve
some other purpose than to respect self-determination [5, 6], much of the discussion
concerns whether surrogates really can be expected to know what the patient would
have decided [7].
M. Johansson (&) � L. Brostrom
Department of Medical Ethics, Lund University, BMC I12, 221 84 Lund, Sweden
e-mail: [email protected]
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Health Care Anal (2014) 22:73–81
DOI 10.1007/s10728-012-0205-4
If indeed the point of respecting the patient’s hypothetical wishes is to respect the
patient’s autonomy, the prospects of surrogate accuracy would certainly seem to be
an important matter. As indicated, the assumption that SJS has to do with autonomy
deserves scrutiny, but the broader discussion about the values underlying SJS and
about the merits of this and other decision making standards can be found
elsewhere. The present article has a narrower focus, intended to highlight a number
of issues that deserve to be discussed regardless of what values or interests SJS and
other decision-making standards ultimately succeed in protecting. On our view,
progress has been hampered not only by insufficient attention to what the moral
foundation of SJS could be, but also by some more general philosophical and
methodological mistakes, which tend to get repeated. In one way or another those
mistakes emanate from attempts to draw moral conclusions from various empirical
findings. For example, in a fairly recent discussion of SJS, A.M. Torke, G.C.
Alexander and J. Lantos, for example, identify what they take to be fatal flaws to
this standard [8]. They argue that three lines of research ‘‘show the weakness of
substituted judgment’’, and that a different approach is called for. The three lines of
research are empirical, but whereas two of them concern surrogates’ prospects of
successfully satisfying SJS, the third puts into question whether there are moral
reasons for even trying. We shall discuss the implications of these lines of research.
The discussion will be structured around five general points, which in different ways
reveal the problems of drawing normative conclusions about SJS from empirical
results. The lessons to be learned, we believe, are to a large extent applicable in the
discussion about other decision-making standards too.
Surrogates’ Evidence is Not Limited to Advance Statements RegardingTreatment Preferences
Much of the empirical research that has been done on surrogate decision making is
believed to embarrass SJS, by allegedly showing that surrogates cannot be trusted to
successfully apply this standard. One such line of research indicates that
individuals’ treatment preferences to some extent change over time [9–11]. The
putative problem with these changes, according to the critics, is that they make
substituted judgments so unlikely to be accurate that it would be unwise to rely on
SJS [8]. What would make substituted judgments too unreliable is a question that
we shall return to shortly. But that issue aside, it is not explained in the first place
why people changing their minds would make these judgments unreliable at all.
Presumably the underlying idea is that changes of mind make the task of substituted
judgment a daunting one, since the surrogate evidently cannot rely on any one past
preference as the answer to what the patient now wants, or would want. For
example, while those with advance directives have been shown to have somewhat
more stable preferences, the possibility of changes of mind indicates that one has to
be cautious not to rely on previously expressed preferences when judging what the
patient now would have wanted. Substituted judgment may certainly require
extrapolation, imagination and real efforts to make proper use of all the evidence
there might be for assuming that this is what the person would want. Unless there is
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some particular reason for thinking that surrogates are incapable of such efforts,
however, there is no reason to believe that substituted judgments are likely to be
inaccurate. It is a little like dismissing the effort to find christmas gifts that would
make one’s children happy on Christmas eve just because one can no longer rely on
the wish list they wrote down in March. We know that they may well have changed
their mind, and we adjust for this by looking at what else we know about them and
their more recent joys and inclinations. Correspondingly, as has been recognized,
health care professionals and surrogates should think twice before going by advance
directives that have not been updated, if the goal is to do what the patient now
would have wanted [11]. But this is just wise caution regarding the use of advance
directives, and has no bearing by itself on the value of SJS. Why changes of mind
should threaten this standard remains to be explained.
The Accuracy of Substituted Judgments has to be Assessed in Relationto the Appropriate Hypothetical Preferences
The other line of research believed to cast doubt upon surrogates’ prospects of
complying with SJS consists of the many studies that claim to have shown that
surrogates actually tend to make inaccurate substituted judgments. The literature
reporting on these alleged results is extensive, and much of it has been summarized
in a systematic review [7]. Before addressing the implications of the relevant
findings, one could raise the question whether this line of argument is consistent
with the argument from changes of mind. In accuracy studies (potential) patients
have typically been asked what they would prefer in various future scenarios, and
the premise of this literature seems to be that the correct verdict on what the patient
would have preferred is given by their answer to this question. However, if changes
of mind are common, what is the justification for singling out respondents’ answer
at a certain point in time as defining the correct answer? Conversely, if this answer
is the one by which surrogates’ accuracy ought to be measured, why would
subsequent changes of mind be a problem? The argument from changes of mind
thus undermines the assumption made in accuracy studies, that there is a
straightforward way to assess surrogates’ capacity to comply with SJS.
This tension aside, appealing to the empirical evidence for surrogates’ poor
prediction accuracy fails. The studies in question simply do not show that surrogates
have made inaccurate substituted judgments. Basically this is because surrogates’
prediction accuracy regarding patients’ actual treatment preferences, or regarding
patients’ conjectures about future hypothetical preferences, need not say much
about surrogates’ accuracy in making judgments about what patients would have
preferred, had they been competent at decision point. The problem is not merely one
of empirically testing hypotheticals with counterfactual premises. What patients
would have preferred under relevant counterfactual circumstances is not even a
straightforward empirical matter, but involves making up our minds about what
scenario we ought to imagine the patient to be in. Just how competent should this
person be imagined to be? With what insights and what values (as these may
certainly change, depending on, among other things, one’s life situation)? And how
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favorable should the surrogate imagine the external circumstances surrounding the
decision to be? These questions not only need to be settled, but doing so will involve
some degree of idealization of the patient and his or her decision conditions. For
example, making the treatment decision that the patient would have made the last
time he or she was competent may well be morally wrong, if this person was just
barely competent (or informed) then, affected by various irrelevant considerations
and likely not to make a decision that reflected ‘‘who he or she really was’’.
Crucially, one cannot assess surrogates’ accuracy in identifying the relevant (partly
idealized) preferences simply by matching surrogate predictions with what
individuals say they would prefer in various future scenarios. We elsewhere make
this case in greater detail [12].
This methodological quandary should not be dismissed as being merely of
academic interest. Anyone inclined to discredit SJS based on these empirical
findings would have to argue that the tested ability still approximates the ability that
we ultimately would like to assess. That is, one would have to argue that if
surrogates are unlikely to accurately predict patients’ actual treatment preferences
for future scenarios when those individuals are (still) competent (or predict their
conjectures about future hypothetical preferences), surrogates are also unlikely to
accurately predict what patients would have decided, if competent at the time of the
real decision. But why would that be? In the absence of a substantial explanation of
why an inability to do x would imply an inability to do y, there is simply no ground
for making this inference. For one thing, whether real world decision making will be
as challenging as the decision making looked at in accuracy studies depends on
exactly what decisions surrogates will be allowed to make. If, for example,
surrogates actually will be limited to making decisions when there is an
uncontroversial decision—what any person ‘‘with sound mind’’ would choose—
surrogates should be expected to do better than in the possibly trickier situations
involved in the research paradigm under scrutiny. If, conversely, surrogates are
called upon only when it is utterly unclear what the average person would decide,
and nothing much seems to hang in the balance, it is not clear that there even is a
determinate answer, in the face which surrogates can be proven wrong.
Until the exact circumstances under which surrogates will actually be expected
to make the relevant decisions are fixated (and these circumstances will typically
vary, depending on legislation, tradition and more), there is simply no way of
telling in what ways accuracy studies are artificial, and thus no way of telling what
inferences about real and relevant abilities they allow. Moreover, that appropriate
substitute judgments to some extent idealize the individual concerned, and the
circumstances surrounding the decision, also imply that the real world task may in
fact be easier than the one researchers have assessed. Figuring out what the
person’s hypothetical wishes are involves not so much the complex task making a
prediction about what decision she will make given the myriad of factors that
typically affect her choices, but rather identifying a limited number of core values
and desires, deducing from those what would be the most sensible thing to do in
the current situation.
In view of these considerations, the burden of proof clearly lies with those who
assume that the abilities found wanting are the ones required by SJS.
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Substituted Judgment Might be the Most Reliable Decision Tool Available
Even if one was to accept that surrogates often are inaccurate, or that frequent
changes of mind make substituted judgments unreliable, these assumptions would
not by themselves amount to an argument against SJS. For one thing, the alleged
fact that we are rather bad at making accurate substituted judgments should not lead
us to conclude that we should stop trying to, if making substituted judgments is the
most reliable way available of achieving what we want. Consider an analogy.
Having reliable weather forecasts is often important, and we may not be as good as
we would like at making them. However, if correctly forecasting the weather is
important to us, no longer relying on the best meteorological models available is not
a rational response to the realization that we often get it wrong. The systematic
review by Shalowitz et al. [7] suggests that surrogates have demonstrated, roughly, a
68% accuracy rate, which, while not particularly impressive, is clearly better than
chance. If deciding as the patient would have, if competent, would be the way to
protect important values (of autonomy, say), how could refraining from trying be a
rational response to the observation that we do not get it right as often as we would
like? After all, switching to some other approach to surrogate decision making
would not merely be switching to some other method of addressing a challenging
epistemic situation, but changing the aim.
Certainly one might argue that if surrogates’ success rate probably never will
exceed a chosen threshold (be that at chance, or at 68%, or any other number), that
rate is simply too low in order for it to be acceptable to adhere to SJS. Under such
circumstances one might consider aiming for something different in surrogate
decision making. Such a switch, however, would be rational only if reaching that
other aim could be shown to have greater prospects of success. And what viable
alternative is there to SJS, if there are no advance statements that would allow for a
more straightforward respect for self-determination? What primarily comes to mind
is the so called Best Interest Standard, according to which surrogates ought to make
that decision which best protects the interests, appropriately understood, of the
patient [2]. And whatever exactly the relevant notion of the patient’s interest is (in
terms of quality of life, for instance), two related questions immediately arise. What
is surrogates’ success rate when applying this decision-making standard, and how
are we to know? Replacing SJS on the grounds that surrogates may get patients’
hypothetical preferences wrong 32% of the times they try, with a standard that not
only promotes other values than those we really wanted to promote, but is such that
its success rate for all that we know could be just as low or lower (to the extent that
it can be assessed at all), would certainly be an odd thing to do.
Substituted Judgment Need Not be a Decision Tool at All
Another reason why discouraging empirical findings do not, on their own,
undermine SJS relates to what is ultimately meant by a decision-making standard.
There is a potential ambiguity here that we have not yet bothered to pay attention to.
By decision-making standard one could mean a condition that good decisions ought
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to satisfy: in this sense, meeting SJS simply amounts to making the decision that the
patient would make, if competent. But one could also mean an explicit instruction to
oneself or other surrogates: in this sense, using SJS amounts to having the condition
or its expression somehow guide the surrogate in the process of reaching a decision.
(It may or may not additionally involve acts of imagination, where the surrogate
attempts to come up with the right answer by some act of empathic understanding.)
Basically, this is the well-established distinction within moral philosophy between
right-making characteristics and decision-making procedures, as first explicated by
Eugene Bales in his discussion about act-utilitarianism [13]. Typically there is a
tacit assumption that those two things go hand in hand, i.e. that surrogates should to
be told that they ought to try to make the decision that the patient would have made,
and in one way or another be guided by this thought, because that is the decision
they ought to make. Assume, however, that for some reason we ought to refrain
from thinking in terms of SJS when making surrogate decisions. Perhaps imagining
purely hypothetical scenarios just makes us confused, and that we therefore are well
advised to think instead in terms of what might be ‘‘best for’’ the patient, or to simply
ground our decision in what we spontaneously feel is the most respectful thing to do.
That is, assume, if only for the sake of the argument, that asking a surrogate to guess
what the patient would have decided is not a particularly effective way of having the
surrogate come up with the right answer. This does not imply that SJS should be
rejected as a measure of accuracy. In other words, the empirical results on preference
change and prediction accuracy may show that using SJS as a practical guideline is a
bad idea, but this would not disqualify it from being the criterion that surrogate
decisions morally ought to satisfy, by whatever route possible.
Again an analogy might be helpful. Rules of grammar tell us what counts as
grammatically correct sentences in a given language, and thus serve as a yardstick
for what it takes to get it right. Importantly, that does not mean that learning and
trying to apply the relevant rules is the best way to see to it that the sentences we
speak are grammatically correct. For instance, telling a small child that in English
modal verbs do not inflect for person, number or tense will in all likelihood be
useless information, and may even turn out to be counterproductive. Nonetheless
this is a rule that determines whether or not the child spoke correctly. Of course, in
other cases, learning and trying to apply the rule might be a reliable way of
satisfying it. The point, however, as in the context of decision-making standards, is
that whether a certain norm works in a satisfactory way as a practical guideline, or
whether the right-making characteristics of sentences (or decisions) can be can be
explained to language users (or surrogates) in a way that is intelligible to them, will
depend on the particulars of each individual case. It is thus perfectly consistent to
champion SJS as an articulation of the morally right decision, while agreeing that it
may not be advisable to instruct surrogates to apply this principle. Correspondingly,
the accuracy that needs to be measured is not surrogates’ accuracy when being
instructed to apply SJS, but their accuracy in deciding as the patient would when
given the best possible tools for making such decisions, whatever those tools turn
out to be. (As to this last issue, we have no views on what would be the best way to
make surrogates actually make the decisions patients would. It is simply an
empirical issue, which cannot be prejudged.)
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Substituted Judgment Allows for Taking Surrogates’ Own Judgmentinto Consideration
Surrogates may or may not be well equipped to follow SJS, but Torke et al. also
appeal to research that suggests that the majority of patients may not even want their
own ‘‘prior wishes’’ to singlehandedly settle end-of-life treatment decisions. For
example, in one study of patients’ and surrogates’ attitudes about the use of advance
directives and how patients want decisions to be made, it turned out that patients
often wish to allow surrogates some leeway in making the relevant decisions,
permitting other considerations than those directly related to patients’ (actual or
hypothetical) substantive treatment preferences [14]. These and similar findings
may seem to undermine the moral basis of SJS. As mentioned, this standard is
typically viewed as a standard that serves to protect patients’ right to autonomy, but
if patients do not want to be ‘‘victims’’ of SJS, that would seem to give us a reason
not to rely on this standard, out of respect for autonomy.
Once again it should be recalled that SJS does not suggest that prior wishes
should settle end-of-life decisions. The wishes that one should respect are those that
the patient would now have had, if he or she had been competent. But if we ignore
this misleading rendering of SJS, what critics like Torke and co-authors presumably
are concerned with is giving due weight to the possibly widespread view that family
members or physicians should ‘‘have input into the decisions’’ regarding treatment,
instead of merely trying to figure out what treatment decisions the patient would
make if competent.
Three points should be sufficient to show that this view need not discredit SJS.
First, determining what standards ought to govern surrogate decision making
should obviously not be settled by anything remotely similar to a voting
procedure. Hence, it is not clear what to make of the suggestion that ‘‘the
majority’’ of patients do not want SJS to be followed. Our widely accepted right
to autonomy is not a right to have our opinions about decision-making standards
influence what ethical principles will govern health care in general, but a right to
influence the course of our own individual future. Thus, however much autonomy
considerations may require us to respect those who do not want SJS to guide
decisions about their care, those who do want SJS to govern decisions about their
future certainly should not have this possibility withdrawn merely because theirs
might be a minority preference.
Second, the argument depends on the assumption that our prior actual wishes
ought to trump what we now would have wanted, if competent. This is a substantial
moral assumption, one over which reasonable people can disagree. Respecting the
wishes that people once had is certainly one way of respecting their right to
autonomy, but SJS has been suggested to protect this right too. If it does, there are
two conflicting principles of autonomy at work, and one would have to assess what
is morally most important—to satisfy prior actual wishes or to satisfy current
hypothetical ones. It is fair to say that in the literature on surrogate decision making,
and in much legislation, SJS is typically treated as a second-best solution,
acceptable only when no prior decisions have been made or no prior wishes are
known, but ultimately this position needs to be argued for.
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Third and finally, SJS is arguably more flexible than commonly believed. Even if
this standard is usually formulated in ways that suggest that it is applicable only
when patients would have some substantial treatment preference, this should not be
essential to the idea of substituted judgment. For example, a patient would perhaps
have wanted (if competent) that surrogates make whatever decision they feel
comfortable with themselves, or that doctors make whatever decision is most in line
with clinical practice, say. To respect such hypothetical wishes because this is what
the patient would have wanted is not only to act in accordance with the wording of
SJS, but to act in accordance with the fundamental idea behind this standard.
Concluding Remarks
None of the three empirical objections to SJS that have been addressed in this article
are convincing. This is not to say that SJS is the standard that surrogates ought to
use or satisfy. It is just to say that any case against SJS needs to be based on
different arguments. Whether other empirical findings can be made to bear on the
adequacy of this standard is unclear at this point, and depends in part on how the
standard should be understood. SJS first has to be evaluated on moral grounds. For
example, does this standard, if adhered to in decision making, really protect the right
to autonomy, as common wisdom has it, or could it be that it actually reflects some
distinctly different moral consideration? And is SJS best thought of as a tool for
decision makers—a way of thinking—or does it make more sense to interpret it as
the objective measure of when a decision is morally justified? None of these
questions can be properly addressed merely by means of empirical research.
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