## 1. Terminology


### 1.1 "Competence" or "Capacity"?



As defined above the term "decisional capacity" refers to
the ability of subjects to make medical decisions; primarily,
decisions to consent to or refuse medical intervention. Yet somewhat
surprisingly, (at least for those new to the topic) there is a large
amount of disagreement over terminology in this area, particularly
over whether "decisional capacity" and its shortened
version, "capacity" are the right terms to use. The other
candidate is "mental competence" or just
"competence" for short. Disputes about how (if at all)
these terms differ can be very confusing and sadly there is no remedy
other than familiarity with the various things people have said.



One potential problem with the term "competence" is that
in other areas of law it is used more widely to refer to capacities
that go beyond those deemed significant in medical contexts. For
example, in criminal law, competence to stand trial usually requires
knowing the difference between right and wrong. But such knowledge is
not part of competence (or capacity) for medical decisions.



Also relevant is the fact that the law (again in other non-medical
areas) often seeks to make *global* assessments of a
person's decision-making abilities. For example, a global
determination of incompetence to manage one's affairs may lead
to one person losing a wide range of personal freedoms. It would
typically result in a family member or guardian being appointed to
look out for that individual's finances, living arrangements
etc. In short, a great many decisions are now off limits for that
individual. But in medical contexts, such global assessments are no
longer thought to be appropriate. Instead, the focus is supposed to be
on particular decisions (see decision relativity in
 SS5.2).
 Thus an individual can be deemed capable of making one decision, but
not another. 



Nonetheless, some version of legal/medical divide is often appealed to
as part of explaining the difference between competence and capacity.
One common explanation begins by focusing on *who* makes the
determination: a clinician or a judge. It is said that a
*clinical* assessment is a determination of "decisional
capacity", whereas "competence" refers to a legal
assessment (Ganzini et al. 2005: S101). Yet despite the popularity of
this way of carving things up, the distinction breaks down in
practice. On the one hand, clinicians who assess decisional capacity,
often make assessments that effectively carry the weight of a legal
judgment, even though the courts are not involved (Grisso &
Appelbaum 1998: 11; Kim 2010: 17). Indeed, such assessments typically
have legal authority until or unless challenged in a court. On the
other hand, these days many judges confronting particular cases of
medical decision-making restrict their focus to questions about the
ability of the patient to make the decision at hand.



Even so, in some legal jurisdictions, like Britain, the term
"capacity" (or "decisional capacity") is
usually taken to be a legal one (Tan & Elphick 2002). On the other
hand, in the United States, it is the terminology of
"competence" (or "mental competence") that is
often said to carry legal connotations and authority (Buchanan 2004;
Berg, Appelbaum, & Grisso 1996). None of this is very helpful,
since as soon as we switch jurisdictions or engage in comparative
work, terms change.



One well-known text in this area solves the problem by developing a
new hybrid term. In their book, *Deciding for Others*, Allen
Buchanan and Dan Brock write that, "competence is competence
*for some task*, competence *to do something*"
(Buchanan & Brock 1989: 84; emphasis in original). They then
specify their own focus, which is "competence *to make a
decision*" (Ibid). This leads to a lengthy discussion of
what the authors call "decision-making competence" and its
standards, as well as the specific "decision-making
capacities" that are said to underlie what they call
"decisional competence". According to this strategy, the
introduction of a new term--"decisional competence"
is the proposed solution. Unfortunately, this stipulative solution
arguably compounds rather than simplifies the problem, since it is
more common to speak of "decisional capacity" than
"decisional competence".



Thomas Grisso and Paul Appelbaum, in their landmark study,
*Competence to Consent to Treatment*, adopt yet a further
approach. They explain:



> 
> 
> ...we talk of "decision-making capacities" when we
> refer to the abilities related to decisions. We use the term
> "competence", however, to denote the state in which a
> patient's decision-making capacities are sufficiently intact for
> their decisions to be honored (and conversely for incompetence)
> regardless of who makes the determination. (Grisso & Appelbaum
> 1998: 11)
> 
> 
> 



In general, within the narrower realm of medical decision-making
(which we take to include decisions to participate in clinical
research) the two terms are roughly interchangeable or should be. For
this reason, many writers adopt the policy of using the terms
interchangeably while signaling recognition that this breaks with
certain conventions. This usually is done by adding a minor proviso or
caveat at the beginning of a discussion to that effect (Charland 2002:
37 note 1; Checkland 2001: 53, note 2; National Bioethics Advisory
Commission 1998: Ch 1, note 4). The strategy has the virtue of
avoiding the cumbersome repeated substitution of one term for the
other in or across discussions where both are used. But it can also
inadvertently perpetuate confusion of just the sort it is meant to
obviate. For the rest of this entry the terms will be used
interchangeably.



Ultimately, what is most important is for readers to be aware of all
this terminological confusion and tread carefully. The rule of thumb
remains: *caveat emptor*.


### 1.2 Descriptive vs. Prescriptive



Whatever term one settles on, it is also important to be aware that
these terms can be, and often are used in both descriptive as well as
prescriptive or normative senses. As one commentator explains: 



> 
> 
> a psychiatrist may give expert testimony, in his capacity as a trained
> observer, about a person's competence seen as a factual matter,
> and the judge may or may not give this testimony practical effect in
> deciding how we ought to treat that person. (Freedman 1981: 55) 
> 
> 
> 



In this example, the first claim addresses the issue whether the
individual *is* decisionally capable. The second claim
addresses the issue whether the individual *should be*
considered decisionally capable, i.e., whether she ought to be allowed
to make her own decisions and have these honored. In many contexts, if
a person is thought to have capacity (to factually possess certain
relevant mental abilities) the normative implications simply follow as
a matter of course. But as the example above reminds us, this is not
always the case. In some contexts, for example in courts, the person
who determines the facts about ability may not be the same person who
issues the normative conclusion.



The distinction is particularly important to keep in mind in light of
the fact that there are ongoing debates about what capacity
is--debates that occur at various theoretical levels. At the
first and most abstract level, we may be interested in clarifying our
*concept* or *theory* of decision-making capacity. To do
this we may ask what exactly it is that we are trying to do when we
sort people into competent and incompetent. Asking such foundational
questions may help us get clearer about the work we need a concept or
theory of capacity to do. Closely related to debates about
concept/theory are debates about *standards*. At this level we
ask: what sorts of things should someone who has capacity in our
defined sense be able to do? What specific abilities are the right
ones to consider in light of the work the concept does? The most
commonly accepted standards are outlined in
 SS4
 below. As we will see, some theorists believe that this list of
standards is incomplete, in the sense that someone could satisfy these
standards and yet fail to satisfy our basic concept of capacity.
Finally, there are specific tests or instruments developed to
determine whether or not (and to what extent) a particular individual
satisfies the standards (Buchanan & Brock 1989). Confusion enters
in because both empirical and normative claims can and do occur at all
of these levels. Suppose, for example, that you examine *A* using
a particular instrument, and then declare on that basis that *A*
has the capacity to make decision *X*. And suppose I reject your
claim, i.e., I refuse to give normative force to your descriptive
claim. There may be several different reasons for this. I may doubt
that you used the instrument properly. Or I may doubt that the
instrument, even when used properly, is a good measure of whether
someone meets the appropriate standards. Finally, I may simply think
that the operative theory or concept underlying the standards is
incomplete--that to truly determine capacity in a way that would
license the normative conclusions, we need to consider more than just
the articulated standards.


## 2. Moral Origins



The origins of our contemporary concept of decisional capacity lie in
a varied configuration of historical developments in health care law
and ethics that accompany the rise of the doctrine of informed
consent. According to the most well developed and widely accepted
account of this doctrine, the moral purpose of requiring informed
consent in certain contexts is to promote and protect the autonomy of
patients and research subjects (Faden & Beauchamp 1986). It is
commonly observed that respect for autonomy 



> 
> 
> flows from the recognition that all persons have unconditional worth,
> each having the capacity to determine his or her own moral destiny.
> (Beauchamp & Childress 2001: 63-4). 
> 
> 
> 



To respect autonomy means that, 



> 
> 
> we have a fundamental obligation to ensure that patients have the
> right to choose, as well as the right to accept or decline
> information. (Beauchamp & Childress 2001: 63) 
> 
> 
> 



Of course, the obligation to allow people to choose is only an
obligation where the individuals in question can meaningfully be said
to choose for themselves. Thus the need to define decisional capacity
enters as soon as we try to define the scope of this obligation.



Typically, in order to be deemed legally and ethically valid an
individual's consent must be properly informed and free of
external coercion (Faden & Beauchamp 1986). Given that in most
medical contexts there is a huge asymmetry in possession of knowledge,
disclosure is usually required to ensure that the subject is informed,
and is often listed as a requirement. Against this backdrop decisional
capacity is often thought of as a fourth requirement of validity. Thus
many health care professionals think of informed consent in terms of a
four-part checklist:


1. Subject must have decisional-capacity.
2. All relevant information must be disclosed to the subject.
3. The subject must understand what has been conveyed.
4. The subject makes a voluntary choice either accepting or refusing
what has been offered or proposed.



Philosophers might naturally suppose that moral theorizing about
informed consent would lead to and shape a theory of decisional
capacity. After all, if the point of informed consent is to enable and
promote autonomous decision-making, one might naturally suppose that
the task is to distinguish those who can actually make autonomous
decisions from those who cannot. This, in turn, would require a more
detailed account of what goes into an autonomous decision. However,
this is not what one finds in the literature, and for good reason. To
begin with, to take such ideas seriously one would have to have an
independent theory of autonomous decision-making *that was concrete
enough to guide practice, i.e., the development of tests and
instruments*. But philosophical theories of autonomy are, at least
currently, far too abstract for this purpose. Moreover they are
typically far too demanding (i.e., they appear to count far too many
decisions as
 non-autonomous).[1]
 So, interestingly, although many philosophers and bioethicists
continue to equate decisional capacity and the capacity for autonomous
decision-making, it is really not true that our current notion of
decisional capacity has been *derived from* the notion of
autonomous decision-making. Instead, the current notion of decisional
capacity has been built from the ground up, largely (though not
entirely) independently of philosophical theory. And this means that
it is an open question whether a competent decision is an autonomous
decision.


## 3. Moral Caution: What Follows from Incapacity?



Although the topic of this entry is primarily the nature of
decision-making capacity, it is worth pausing briefly to comment on
what morally follows from a declaration of incapacity. If a patient is
deemed incapable of making a particular decision, then someone else
(usually a family member) will be designated to make it for her. If
the patient was refusing what others take to be beneficial treatment,
then a finding of incompetence means that the treatment *could*
be forced on the patient if a surrogate deems this best. However,
while it is true that when a person is incompetent to make a decision,
this means that the final authority for decisions will lie elsewhere,
this doesn't automatically mean that the patient's current
wishes, values, preferences etc. are of no importance or that they
need not be considered in making decisions for the patient. Many
incompetent patients clearly have strong desires that should be
accommodated, at least when doing so will not otherwise cause
problems. Given the strong link between well-being and what a person
cares about, it is imperative for caretakers to at least consider what
the patient currently wants.



Second, although it is possible to force treatment on a patient if she
is deemed to lack capacity, this does not mean that it is always
advisable to do so. There are many downsides to coercive treatment
that need to be considered. Treatment might not be effective if the
patient is uncooperative. It may also be important in the case of
chronic mental illnesses to maintain trust with a patient who will
likely need care again in the future. It may be that once these facts
are taken into account, a treatment that seemed clearly beneficial
will not be so.



A slightly different point concerns globally incompetent patients.
Despite the emphasis in the field on treating DMC as
decision-relative, there are, of course, some patients who because of
more extreme impairments are unable to make all or almost all of their
own medical decisions. In the case of globally incompetent patients
who once were competent and who wrote advance directives, it is
usually assumed that the directive comes into force once the patient
reaches this state (Appelbaum 2007; Krohm & Summers 2002).
However, this simple assumption has been powerfully challenged. For
example, Jaworska (1999) has argued that many patients with mid-stage
Alzheimer's dementia retain the capacity to value (they remain,
in her words, "valuers"), even though increasing confusion
and forgetfulness about facts may mean that they no longer count as
competent to make their own treatment decisions (because they fail
understanding and reasoning). Jaworska argues that although such
patients lack decision-making capacity, they are not yet at the point
where their advance directives have the greatest authority. Their
currently held values are still much more relevant to decisions made
for them. In short, Jaworska draws attention to the fact that
*various significant capacities of persons* *can come
apart*. We usually value decision-making capacities like
understanding and reasoning *because* these enable us to pursue
our valued ends. But Jaworska underscores the fact that a person may
continue to have currently valued ends even when she has lost the
abilities needed for pursuing them effectively. In these cases, rather
than revert to an advanced directive, Jaworska thinks we should
(within reason) aim to help such patients pursue the ends they are no
longer able to pursue on their own.


## 4. Elements of Capacity



Despite the fact that aspects of the concept of decisional capacity
remain unspecified and undeveloped, it is possible to identify some
shared elements that all or almost all theorists agree must be part of
the picture. Four sub-capacities are most prominent. These are (1)
Choice, (2) Understanding, (3) Appreciation, and (4) Reasoning. Some
theorists have also suggested the need for something like (5) Value or
Ability to Value (discussed in
 SS6.1)
 and still others have posited the need for (6) Authenticity (also
discussed in
 SS6.1).
 Below is a presentation of the most basic and agreed upon elements
and an explanation of how these have come to be understood in
practice.


### 4.1 Choice



Choice is short for "the ability to express or communicate
one's choice", and it is the simplest and least mental
element of capacity. Indeed, its simplicity and obviousness may
explain why some authors do not include it. To see that such an
ability is necessary one needs only to imagine a case where
understanding, appreciation and reasoning are all intact, but where
the subject has no way to express or communicate her intended
decision. Unless a subject's preferred choice can be expressed
to others in some outward way, it is impossible to know their intended
decision. This is not trivial, since some patients--for example
stroke victims or some patients with Locked-In Syndrome--can have
an active mental life and satisfy the first three conditions but are
unable to express anything verbally or through gestures (e.g.,
blinking the eyes, lifting a finger, etc.). This is why Grisso &
Appelbaum (1998: 34-37) include it as one of the elements lack
of which compromises capacity.


### 4.2 Understanding



The most basic *mental* element is understanding (Buchanan
& Brock 1989: 23). Obviously, in order to be capable of consenting
to or refusing a given intervention, a subject must have some basic
understanding of the facts involved in that decision. Yet this
apparently simple requirement can turn out to be rather complex
depending on how "understanding" itself is defined (Drane
1985). Basic comprehension and knowledge or cognition of facts is one
minimal interpretation (Grisso & Appelbaum 1998: 37-42).
However, most commentators recognize that this level of mental ability
is not enough for generating the sort of medical decisions we are
concerned with. On the other hand, the standard cannot be set too high
lest we rule too many people incompetent (see inclusivity
 SS5.1).


### 4.3 Appreciation



In addition to understanding in the basic factual sense alluded to
above, most writers on capacity agree that subjects must also have
some appreciation of the nature and significance of the decision that
they are faced with (Grisso & Appelbaum 1998: 42-52). The
facts, and the implications of those facts for the subject's
life, must *mean something* to the subject. The most minimal
way of interpreting this requirement is to see it as requiring that
the subject not only grasp information but *genuinely*
*believe that it truly applies to him*. The appreciation
element of capacity is sometimes held to derive from the legal
requirement that each subject must have "insight" into the
circumstances of a given decision (Glass 1997).



Many theorists stop at this minimal interpretation, but even this
requirement is significant, for it rules out certain kinds of patients
who are delusional, who can grasp what their doctor is saying to them,
but refuse to believe that anything their doctor says is true (Grisso
& Appelbaum 1998: 42-43). In addition, in order to apply
this requirement, clinicians must be able to distinguish between cases
where patients refuse to believe doctors for doctrinal or cultural
reasons--for example a Christian Scientist who believes that
despite what her doctor says only prayer can heal--and cases
where failure of appreciation results from losing touch with reality
(Grisso & Appelbaum 1998: 45-49). For example, imagine a
case in which an elderly demented woman clearly grasps *the fact
that* her surgeons wish to amputate her feet because her feet are
gangrenous and they believe that she is in real danger of dying if
they do not amputate. But despite being able to state these facts back
to her doctors, the woman, who seems confused and disoriented, says
things that reveal she does not really believe there is anything
seriously wrong with her feet. For example, she talks about what she
will do once her feet are all healed. She may fail appreciation and so
may not be deemed competent to refuse the treatment (based on a case
described in Abernathy 1984).



More robustly, appreciation may be understood as going beyond just
acceptance of, or belief in, the facts. Some theorists argue further
that appreciation involves being able to 



> 
> 
> appreciate the nature and meaning of potential alternatives--what
> it would be like and "feel" like to be in possible future
> states and to undergo various experiences--and to integrate this
> appreciation into one's decision-making. (Buchanan & Brock
> 1989: 24) 
> 
> 
> 



However, there are no easy ways to determine when this deeper kind of
appreciation is present. Moreover, contemporary psychology has shown
us just how infrequent such appreciation of future scenarios is among
most people. Appreciating what a future option will feel like requires
what psychologists call "affective forecasting", and
numerous studies have shown that we are, most of us anyway, very poor
affective forecasters (Ubel, Loewenstein, Hershey, et al. 2001;
Wilson, Wheatley, Meyers, et al. 2000; Gilbert, Gill & Wilson 2002; Gilbert, Pinel, Wilson, et al. 1998; Wilson, Meyers & Gilbert 2001; Wilson & Gilbert 2005; Ubel,
Loewenstein, Schwarz, et. al 2005; Ubel, Loewenstein, &
Jepson 2005; on the relevance of this to capacity see Halpern &
Arnold 2008). But given this, if we were to require such deep
appreciation we would again risk ruling too many people incompetent
(see inclusivity
 SS5.1).


### 4.4 Reasoning



Without the mental ability to engage in reasoning and manipulate
information rationally, it is impossible for understanding and
appreciation to issue in a decision (Buchanan & Brock 1989:
24-25; Grisso & Appelbaum 1998: 52-58). Interestingly,
however, the concept of reasoning is often left vague in discussions
of decisional capacity. Probably this is because insisting on too high
and specific a normative standard of reasoning might risk ruling that
a majority of subjects lack capacity, which, again, risks ruling too
many people incompetent.



Yet normative standards of reasoning sometimes do get mentioned, for
example, consistency and the ability to derive conclusions from
premises (Freedman 1981). More often reasoning is said to include the
ability to weigh risks and benefits and evaluate putative
consequences. Again, no specific normative criteria for success are
spelled out. Difficult cases must therefore be assessed
individually.



Most theorists seem to agree that possessing these four abilities, at
least to some degree, is *necessary* for capacity. The primary
issue (explored further in
 SS6)
 is about whether the four abilities are always *sufficient* or
whether there are cases in which something else, some further
abilities or some further feature of the subject's choice, might
be relevant to the assessment of capacity. The three elements most
commonly cited by critics are (1) the subject's emotions, (2)
the subject's values, and (3) the authenticity of a
subject's choice.


## 5. Five Widely Accepted Assumptions (And a Sixth, More Controversial One)



There are five important assumptions that underlie virtually all
contemporary work on decisional capacity and with which anyone
interested in the topic must be familiar. For ease of reference we
have named them: (1) inclusivity, (2) decision-relativity, (3)
all-or-nothing assessment, (4) value neutrality, and (5) independence
from diagnosis. These are supported both by ethical theory and by
requirements that law imposes on the ethics of informed consent. A
sixth assumption, (6) asymmetry, is fairly widely accepted, but
continues to be debated.


### 5.1 Inclusivity



The inclusiveness constraint derives entirely from the needs of
practice. No matter what theory of decisional capacity we develop, it
must turn out that most ordinary adults count as having capacity most
of the time (Buchanan & Brock 1989: 21; Appelbaum 1998). In other
words, as a society we are morally committed to imposing minimal
restraints on individual choice. Most people are free to make most
choices in their lives for themselves, even including self-harming
choices. It would therefore be intolerable if our account of
decisional capacity in medicine were to differ significantly from that
norm, especially given that the doctrine of informed consent arose in
the context of a movement aiming to give greater decisional power to
patients and research subjects. Thus, it is generally recognized that
failure of a theory to be inclusive enough would be sufficient by
itself for rejecting an account of decisional capacity.


### 5.2 Decision Relativity



Decision relativity refers to the now almost universally accepted idea
that an individual's decisional capacity should be assessed
relative to a specific decision, at a particular time, in a particular
context (Buchanan & Brock 1989: 18-20; Culver & Gert
1990: 620; Zapf & Roesch 2005). The requirement issues from the
value placed on freedom to choose, along with the recognition of
several facts. First, not all decisions require the same level of
mental ability. Understanding all the facts relevant to making
decision *A* might be much easier than understanding all the
facts relevant to making decision *B*. The idea is to allow
people to make the most use they can of the mental abilities they
have.



It is also important to note that decisional capacity can vary within
a single individual over time and in relation to what else is going
on. For example, medications can make people drowsy or confused, but
between doses when the medication wears off individuals may be
perfectly capable of making decisions. Similarly, someone with
moderate dementia may become more disoriented in unfamiliar
surroundings or in the presence of someone she does not know, and so
be less able to focus on a decision. Commitment to maximizing a
person's chance of deciding for herself means that we ought to
be sensitive to such factors and should try to assess capacity under
the most favorable conditions (Appelbaum 2007).



This emphasis on decision-relativity differs markedly from ideas
accepted in an earlier era when decisional capacity was thought to
extend globally over time and place, irrespective of context. Indeed,
this more global notion continues to be employed in some areas of law.
One illustration of the now widespread acceptance of decision
relativity in medicine is that certain tests once thought to be
perfectly acceptable tests of decisional capacity are no longer deemed
to be so. A case in point is the mini-mental state examination
(Folstein, Folstein, & McHugh 1975). This is a simple psychometric
tool that was developed to help clinicians assess how disoriented (or
not) their patients are, by ranking patient responses to familiar
questions such as, "Where are you right now?" Some
questions also address basic perceptual and mental skills (Can you
count back from 100 subtracting 7 at a time?). Although extremely
popular and still used as a rough assessment of orientation, it is now
thought to be too global and general to serve as assessment of a
patient's mental capacity to make treatment decisions. By law,
assessment must now be more "case-specific" and responsive
to "situational variations in demands" (Grisso &
Appelbaum 1998: 22).


### 5.3 All-or-Nothing Assessment (Relative to a Particular Decision)



A third assumption that pervades contemporary work on decisional
capacity is that for practical purposes, a ruling on capacity must be
all-or-nothing: either the patient in question has decisional capacity
or she lacks it. Of course, in many contexts there is an obvious sense
in which we can speak meaningfully of "degrees" of
capacity, for we are indeed measuring abilities that fall along a
spectrum. However, in practice we need a judgment of a bivalent type.
This is because we need to know who has final decision-making
authority and there is no such thing as "sort of" having
authority over a decision. If a patient has the capacity to make
decision X, then others must honor her choice even if they disagree
with it. But if she lacks capacity to make decision X, someone else, a
guardian or surrogate will have to decide for her. To avoid
potentially endless controversy and ensure the smooth operation of the
healthcare system, law and practice need a "yes-or-no"
verdict about whether a person can make a particular decision for
herself or not (Buchanan & Brock 1989: 27).


### 5.4 Value Neutrality



What we here call "the value neutrality constraint" is a
bit more complex, but its significance makes it important to explain
clearly. Value neutrality refers to the idea that we need to leave
room for patients to make unusual or unpopular choices (Craigie 2013a:
1). People vary greatly in their values and so, even when confronted
with similar situations, make very different kinds of choices. If the
freedom to decide for oneself is to be meaningful, we need to ensure
that individuals are not deemed to lack decisional capacity to make a
choice simply because they are choosing something others disapprove
of. The worry is real. In the not-too-distant medical past, doctors
often did assume incapacity and would therefore refuse to honor
patient wishes whenever a patient rejected what the doctor saw as
beneficial treatment (Culver, Ferrell, & Green 1980: 587). Thus it
seems important to find a way to distinguish competent though unusual
choices from choices that are unusual *because* incompetent
(because arrived at by flawed or inadequate mental processes).



Consider the decision to accept death rather than a certain form of
treatment. The desire to die can, of course, be a sign of mental
illness in certain cases and so *possibly* a sign of incapacity
(though merely being mentally ill doesn't make someone
incompetent: see
 SS5.5).
 But it would be hugely problematic to view all refusals of
life-sustaining treatment as indicative of either mental illness or
decisional incapacity (or both!). Some people refuse life-sustaining
transfusion of blood for doctrinal religious reasons (Charland 2001:
137). Others may choose death as a preferable alternative to
suffering. For example, a long-term dialysis patient who is not a
candidate for transplant may accept death as the only way to escape
from an existence she finds unbearable. Such a choice is intelligible
even if it is not the choice most dialysis patients make. In both the
religious case and the dialysis case the choice appears to reflect
values that are not shared by all people. Yet disagreements about
values, troubling though they may be, are not generally thought to be
indicative of any lack of mental ability. Since death can be chosen by
competent individuals as well as incompetent ones, many theorists have
argued that we must look to something *other than simply what is
chosen* to distinguish competent choice from incompetent
choice.



It is usually assumed that the only way to satisfy the requirement of
value neutrality is to draw a sharp distinction between process and
outcome (Freedman 1981; Buchanan & Brock, 1989: 50-51;
Banner 2013: 1). On this view, capacity has more to do with the nature
of the process whereby one arrives at a decision, rather than the
content or outcome of the actual decision itself.



Closely associated with this approach is a particular picture of what
it is for a decision to be rational. This is sometimes referred to as
"internal" rationality, because it makes rationality a
matter of the internal relations between beliefs, values and
particular choices. It could also be called "instrumental
rationality plus". On this view, there must be internal
consistency among the beliefs and values relevant to the decision at
hand. In addition, an individual must be able to prioritize among her
(decision-relevant) ends, and continue to update this priority ranking
as circumstances change and evolve. And it requires (this is the
instrumental part) being able to recognize which of the options
available will best serve her ends. So consider again refusal of
life-saving transfusion based on adherence to religious doctrine. It
can be argued that, in such a case, the subject is decisionally
capable to refuse the transfusion as long as the decision is rational
according to internal reasons that he recognizes as his own, i.e., his
choice (refusing transfusion/accepting death) best serves *his*
ends (adherence to God's commands as his religion interprets
these), even if others find the choice puzzling.



However, there remain some theorists who insist that there are cases
in which irrationality is also a matter of outcome, of *what one
chooses*. They resist the idea that we should focus exclusively on
process when assessing capacity because of worries about particular
kinds of cases. Consider the example of a subject who refuses
electroconvulsive therapy for a severe depression that has not
responded to any other forms of treatment. The patient refuses because
of a deep fear of the procedure, even though she consented to it and
benefited from it at one point in the past (Culver, Ferrell, &
Green 1980; Culver & Gert 2004). In this case, given how harmful
the subject's choice may ultimately be to her, the decision not
to accept the treatment seems problematic and, according to Culver
& Gert, ought to be challenged. However, in order to say that this
patient is not capable of refusing this treatment, it seems that we
would be forced to abandon a restricted focus on process. For it is
most likely true that the *process* by which she reaches the
decision is beyond reproach from the standpoint of internal
rationality. Her current fear of the therapy is so great that she
would rather die than undergo the treatment. Even if one thinks this
is a re-prioritization of values brought on by her fear (which would
be hard to establish), it remains true that *currently* she is
reaching a decision consistent with what she *currently* cares
most about. And that is all that is required by internal rationality.
Yet Culver & Gert think such a choice should be grounds for
declaring the patient incompetent. They think such a choice is
irrational in a broader sense than allowed by internal
rationality.



Like other theorists of capacity, Culver & Gert acknowledge the
moral importance of avoiding any approach to capacity assessment that
results in doctors being able to declare a patient incompetent
whenever a patient refuses a recommended treatment. But they think
there are ways to avoid this problem without recourse to the strong
policy of focusing exclusively on the processes leading up to a
decision. They suggest instead that we can appeal to a general notion
of how "most reasonable people would judge".



Although the problems raised by the ECT case are real, many theorists
think that the solution offered by Culver & Gert is deeply
problematic. Relying on what many people view as rational (in some
broad, non-internal sense of rational) or on what many people view as
"a significant harm" will not offer sufficient protection
for competent adults with unusual values. If our goal is to ensure
that mentally intact individuals are free to pursue their own
idiosyncratic and at times unpopular values, then we must avoid
building into our account of capacity any specific requirements on
choice. Culver & Gert may be right that their proposal would allow
them to handle religious cases properly, since many people these days
recognize the existence of religious diversity and the need to
tolerate certain religiously motivated choices, particularly if those
choices primarily affect the subject making the choice. But it is not
at all clear that their view could handle the dialysis case mentioned
earlier. When precisely does the refusal of further life-saving
treatment make sense? How much suffering is too much? Deep continuing
disagreements about the proper answer to such questions suggests that
it would not be safe to build any particular answer into our notion of
competence. To do so is to risk allowing majority values to limit the
free choice of others in inappropriate ways by ruling too many people
incompetent for the wrong reasons.



These days clinicians and others working in clinical settings take it
as axiomatic that 



> 
> 
> clinicians should not conclude that patients lack decision-making
> capacity just because they make a decision contrary to medical advice.
> (Ganzini 2005: S101) 
> 
> 
> 



Moreover, discussions of capacity assessment tend to assume (contra
Culver & Gert) that the only safe way to avoid this problem (the
problem of equating disagreement with incapacity) is to focus
exclusively on *how* patients reach a decision. So although
philosophers may still see issues to be explored further, for now the
clinical realm views these issues as resolved. It is taken for granted
that the need to maintain value neutrality is real, *and* that
the way to do this is to adopt an exclusively process-oriented
approach to capacity assessment.


### 5.5 Independence from Diagnosis



Just as it is usually assumed that a patient cannot be declared
incompetent simply on the basis of her (perhaps unusual) values,
similarly a patient cannot be declared incompetent simply on the basis
of her diagnosis. For obvious reasons this is most relevant for
patients with mental illnesses or cognitive impairments, where there
is a history of assuming that all such patients are globally
incompetent (Kim 2010: 11). Historically this resulted in large losses
of freedom for many individuals.



Today it is generally assumed that the diagnosis itself does not mean
a person is
 incompetent.[2]
 Rather, we must look to see if in fact the mental illness (or the
cognitive impairment) is undermining decision-making capacity for a
particular individual and in relation to a particular decision.
Clinicians look for the same features that are supposedly relevant for
ordinary patients: understanding, appreciation, and reasoning, as
described above (Whiting 2015). This has the result that while some
patients with a psychiatric diagnosis or a cognitive impairment are
deemed incompetent to make some decisions, many are deemed competent
to make at least some decisions and still others may be deemed
competent to make all of their own decisions. This has had the result
that these patient groups have much greater input into their own
treatment than in previous eras. Arguably, it has also helped to
decrease somewhat the stigma of mental illness and cognitive
impairment.


### 5.6 Risk and Symmetry



Part of what is involved in reasoning about a particular course of
action and reaching a decision is weighing the risks and benefits
associated with the likely consequences of proposed options. In health
care contexts where consent is at issue, this normally amounts to a
decisional problem that is framed in symmetrical terms: either one
consents to a given treatment option, or one refuses that same option.
This way of framing things seems to assume that both poles of the
decision are symmetrical and that mental capacity necessarily remains
fixed as one evaluates the two options. Yet this is an assumption that
can be philosophically challenged.



It is sometimes argued that consent and refusal to the same proposed
intervention should not always be treated symmetrically, by which it
is meant that an individual could sometimes be competent to consent to
a treatment that she is not competent to refuse. The reasoning is that
the risks respectively associated with consenting to or refusing
treatment are not always the same. From this it is inferred that the
decisions are not the same and that therefore, decisions to consent or
refuse the very same treatment should *not* automatically be
treated symmetrically.



To see what is at stake consider a case where a patient is refusing a
low risk treatment that is highly beneficial for those with her
condition. And suppose as well that the patient will die without it.
Of course, it is always true of any patient in any situation that she
might make a mistake, i.e., a judgment that does not really serve her
interests even as she understands them. But in this case if refusal is
a mistake it is a mistake with much worse consequences for the
patient. Since in this case the harms associated with mistaken refusal
are much greater than the harms associated with mistaken consent, the
level of competence required to refuse can legitimately be set higher.




There have been substantial debates over the symmetricality question
(Brock 1991; Buller 2001; Cale 1999; Checkland 2001; Skene 1991;
Wicclair 1991, 1999; Wilks 1997, 1999). A key feature of the debate is
whether or not mental capacity should be considered a fixed mental
commodity (Buchanan & Brock 1989: 60). In other words, relative to
a particular yes-or-no decision such as the one described above,
should we articulate a single threshold (a certain level or degree of
understanding, appreciation, etc. that the patient must have) such
that any patient above the threshold should be free to either consent
or refuse? Or is it better to view such a choice as two different
decisions and so articulate two different thresholds, one for
acceptance and one for refusal, setting the threshold higher for those
patients inclined to refuse?



Those who are skeptical of this approach point out that it is highly
counterintuitive to say that mental *capacity* can vary
according to external circumstances. Moreover, as some critics claim,




> 
> 
> One point of determining whether a person is competent to make a
> decision about medical treatment is to allow a competent patient to
> make any decisions he wants regarding that kind of treatment. (Culver
> & Gert 1990: 620; Culver & Gert 2004) 
> 
> 
> 



In a way, it is true that abilities don't change simply because
the risks of exercising them do. To illustrate with a simple,
non-medical analogy, consider a cooking student who has learned to
make a perfect omelet and now succeeds in making one nine out of ten
attempts. This is her current ability level and it does not change
even if the consequences of failure change. In one case, perhaps,
failure simply means she has no omelet, but only scrambled eggs, for
breakfast, whereas in another case failure to make the omelet properly
might cost her admission to chef school. But the odds of failure are
the same in each case: 1 in 10. In effect those who favor an
asymmetrical requirement think that it is fair to require a higher
level of ability (and so a lower chance of failure) when the negative
consequences of failure are higher. And this does seem to be about
protection rather than ability *per se*.



However, the moral rationale for the approach appeals to a more
general, overarching rationale for assessing capacity in the first
place (Buchanan & Brock 1989: 51). The claim is that we assess
capacity because we recognize the need to strike a balance between two
distinct and potentially conflicting values. On the one hand, as a
society we place a very high value on personal autonomy and free
choice. But if that was our only societal value we would not bother to
assess capacity but would simply honor any choice that a patient made
(as long as she could express it). That we don't do this
demonstrates that we also clearly value patient welfare and recognize
that as mental capacities become more and more compromised the risk to
welfare posed by free choice increases. From the start then, setting
thresholds for decision-making capacity is an exercise in trying to
strike the right balance between giving people as much freedom as
possible while protecting the most vulnerable among us.



The asymmetrical approach to decisions simply extends this basic
idea--this desire to balance concern for autonomy and protection
of welfare--further. Once we recognize that choosing one way can
place welfare at much greater risk than choosing the other way, it
makes sense to strike the autonomy-welfare balance differently for
each prong of the choice. Since welfare is more at risk in one case
than the other, we set the threshold for selecting that option higher
(thereby slightly reducing the chance that the subject will be free to
make it). But since welfare is not at risk in the other case, the
threshold remains low, to maximize the chance that the patient will be
free to make that choice if she is inclined to.


## 6. Are We Measuring the Right Thing?



As indicated earlier, there are two slightly different questions
theorists might have in mind when they ask: "Are we measuring
the right thing?" On the one hand, one might be asking whether a
particular instrument developed to help clinicians assess capacity is
empirically valid. Or (closely related), one might be asking whether a
particular empirically valid instrument developed in one context, is
applicable in a different legal context. On the other hand, one might
be asking a deeper question about whether the underlying standards
which inspired the development of the instrument, and which the
instrument supposedly tracks, are really themselves adequate. In
short, the second question challenges the underlying framework itself,
asking whether we *ought* to be considering things that it
fails to capture. Here, the first sort of question will be considered
briefly before turning to the second. 



At this point in time, the most widely used instrument is the MacCAT-T
(Grisso, Appelbaum, & Hill-Fotouhi 1997). It reflects the most
widely influential theory of competence to date, that of Grisso and
Appelbaum (1998). At the core of this theory are the same four
abilities mentioned in
 SS4
 of this entry: the ability to communicate a choice, the ability to
understand, the ability to appreciate, and the ability to reason.
However, Grisso and Appelbaum (1998) develop detailed specifications
for how these four abilities should be interpreted. We shall call the
view of competence defined in terms of these four abilities as
interpreted by Grisso and Appelbaum the "four-abilities
model". The MacCAT-T is an instrument designed to help
clinicians quickly and efficiently assess competence according to the
four-abilities model. Thus to ask if the MacCAT-T is empirically valid
is to ask whether it is good at detecting the presence of the four
abilities as specified by the model and whether it is good at
measuring the degree to which a patient possesses them. A great deal
of research has been done on the MacCAT-T, and at this point the
general consensus appears to be that the MacCAT-T is empirically valid
in this narrow sense.



A slightly different question is about whether the MacCAT-T can be
applied in different legal contexts. The legal history in the United
States, Canada, and Great Britain has many common roots, and because
of this many people assume that the same criteria apply in these
different regions. However, it is not always obvious that this is so.
In 2005 The Mental Capacity Act (MCA) was passed in England and Wales
that, at least on the surface, seems to embrace different criteria
from the ones listed above. The MCA criteria are (1) understanding,
(2) retaining, (3) using, and (4) weighing and communicating (see
Mental Capacity Act in
 Other Internet Resources).
 Some researchers have concluded that, for all practical purposes,
this is the same model. They take "using" to cover
appreciation (since one does not use information one does not fully
accept) and "weighing" to cover reasoning (which is often
understood as the ability to weigh and compare options). But as of now
there is no real consensus. Viewing the two sets of criteria as
equivalent is, of course, convenient, since then one can make use of
the broader English-language literature on capacity assessment without
worries about whether it strictly applies to one's own legal
context. For example, based on the assumption that the two models are
basically equivalent, some researchers in England have conducted
empirical studies of capacity in specific populations of patients
using the MacCAT-T (Owen, Szmukler, et al. 2009; Owen, Szmukler, et
al. 2013).



Of course, the MacCAT-T is only one of many instruments that have been
developed to assess capacity (Etchells et al. 1999; S. Welie 2001;
Vellinga et al. 2004; Dunn et al. 2006; Kim 2010: 61-65) and all
such instruments must be assessed for empirical validity, namely the
extent to which they successfully track and measure the properties
they claim to track and measure. However, questions of empirical
validity, though obviously important, are generally of less interest
to philosophers. The more interesting questions arise when we consider
the adequacy of the underlying theory a particular instrument is based
upon. That means that in the case of the MacCAT-T, the deeper,
interesting question is whether the four abilities model as specified
by Grisso and Appelbaum captures everything important about
decision-making capacity. Since to date the four abilities model has
been the most influential model by far, the following discussion
focuses on it.



At the origin of any theory of capacity, there lies a set of paradigm
examples around which the theory is built and which it must account
for. Thus, in the initial instance, a theory is built around a
selection of paradigm examples of what capacity and incapacity should
be taken to be. The criticisms examined below all appeal to cases that
the critics take to be obvious examples of incapacity, but which the
four abilities model seems to classify as cases of capacity. Most
theorists seem to agree that possessing the four abilities, at least
to some degree, is *necessary* for capacity. The primary issue
is about whether the four abilities are always *sufficient* or
whether there are cases in which something else, some further
abilities or some further feature of the subject's choice, might
be relevant to the assessment of capacity. The three elements most
commonly cited by critics are (1) the subject's emotions, (2)
the subject's values, and (3) the authenticity of a
subject's choice.


### 6.1 Challenging the Four Abilities Model: Emotions



Emotions obviously play an important role in decision-making, yet the
four abilities model does not directly address the role of emotions. A
number of critics of the model remain convinced that failure to attend
to emotion in capacity assessment is problematic (White 1994; Charland
1998b; Halpern 2011, 2012; Bursztajn et al. 1991; Breden &
Vollmann 2004; Hermann et al. 2016).



When they think of emotion, most people think of discrete emotional
episodes, for example, particular experiences of anger, sadness or
joy. While these are no doubt important, the realm of emotional
phenomena is much broader, something that some theorists capture by
talking more generally of "affect" or "affective
phenomena". In addition to particular episodes of emotion,
people have emotional dispositions, moods and longer-term emotionally
shaped outlooks. For example, someone who is depressed experiences
much more than just a single discrete episode of sadness. To be
depressed is to view many things through a dark emotional lens that
can shape how a person views her life, what she cares about, and what
she sees as worth pursuing. 



There are now a number of published studies that report that depressed
patients are often decisionally capable and compare well with matched
controls (Appelbaum & Grisso 1995; Vollmann et al. 2003;
Appelbaum, Grisso, et al. 1999). However, what is being reported is
that these patients did well *when assessed using instruments like
the MacCAT-T which is based on the four abilities model*. Because
the authors of the studies have faith in that model they clearly
intend their results to license normative conclusions. However,
critics worry that negative emotional outlooks can lead depressed
patients to weigh risks and benefits differently (Elliot 1997; Rudnick 2002). Since such patients do not care as much about themselves or their own lives, they may not
*care* about risks in the same way they would if not depressed.
Such patients are cognitively intact: they understand the relevant
facts and grasp that the facts apply to them. But depressed affect may
still (so it is argued) undermine their ability to decide. More
recently it has been suggested that those who assess the capacity of
persons with severe depression may need to consider their ability to
project themselves into the future as this may relate to hope or loss
of hope that may impact on decision-making (Halpern 2012; Meynen 2011;
Owen, Freyenhagen, et al. 2015; Owen, Martin, & Gergel 2018). Some
theorists have argued that affect and emotion play a central role in
many other mental disorders, even those not necessarily thought of as
disorders of affect. On that basis they have argued that the problems
outlined here--problems related to the fact that the
four-abilities model ignores emotion--may also arise with these
patients. Examples include addiction (Charland 2011), patients with
OCD (Ruissen 2015; Ruissen et al. 2016), and patients with anorexia
nervosa (Charland, Hope, et al. 2013; Charland 2015).



Certainly it is true that emotional influences on decision-making can
be profound. Our cultural bias (no doubt elicited by the previous
example) is to think of emotions as making decisions worse (Charland,
1998a: 359). But this is to overlook the very real ways that
emotion--even strong emotion--can improve decision-making.
Moreover, although it is not often acknowledged, it is only because we
are creatures with affective capacities that we *care* about
things. A creature completely devoid of emotion or affect would
presumably not care about anything and so would have no basis for
making decisions (Charland 1998a,b).



Still, the difficulty of focusing on emotions in the current context
is that we do not have a principled way of distinguishing between the
good influences of emotion on decision-making and the bad influences.
Moreover we need a way to draw this distinction that is independent of
our opinion about the goodness or badness of the choices being made.
Most of us tend to see the influence of emotion as bad when we think
the decision reached is bad, and vice versa. But value neutrality and
the related commitment to a process-based approach rule this out.
Finally, some theorists have recently voiced worries about what might
happen if emotionality were included in capacity assessments *in
the wrong way*. Including emotionality might be good for some
patients, e.g., those with depression, but might result in too much
loss of freedom for autistic persons or other neurodiverse people
whose emotional responses are different from the norm but who arguably
are quite able to make decisions for themselves (Mackenzie & Watts
2011a,b).


### 6.2 Challenging the Four Abilities Model: Values & Authenticity



Many of the same theorists who invoke emotion also point to the fact
that the four abilities model ignores patient values (Charland 2002).
However, in some cases where, intuitively, patients appear to lack
capacity, it is precisely their pursuit of unusual and
self-destructive values that seems to be problematic. Addicts pursuing
their drug of choice (Levy 2016) or anorexia patients pursuing extreme
thinness are cases in point. Might there yet be a way to appeal to
values in an assessment of capacity?



The adequacy of the four abilities model was challenged along these
lines by Tan, Hope, Stewart and colleagues in a series of articles
exploring the results of a small empirical study of patients with
anorexia nervosa (Tan, Hope, & Stewart 2003a,b; Tan, Stewart,
Fitzpatrick, & Hope 2006a,b; Tan, Stewart, & Hope 2009). Ten
young women with the illness were interviewed at length about their
own understanding of their illness, why they pursued extreme weight
loss, how they felt about treatment and what might lead them to refuse
treatment. In addition, the women were all assessed for
decision-making capacity using the MacCAT-T. They all scored very well
on the MacCAT-T, demonstrating high levels of understanding and
reasoning ability, with scores basically equivalent to healthy
controls (Tan, Stewart, et al. 2006a: 270). By the typical, purely
cognitive criteria of capacity assessment, they were all (or mostly
all, depending on how much emphasis one places on appreciation)
 competent.[3]
 Yet most of them also clearly intended to keep trying to lose weight.
The extremely high value they placed on being thin led them to
downplay other values that had once been more central to them. As they
explained to interviewers, thinness was more important to them than
family, friends, education, work, and even life itself. In the words
of one participant, 



> 
> 
> Although I didn't mind dying, I really didn't want to,
> it's just I wanted to lose weight, that was the main thing.
> (Tan, Hope, & Stewart 2003a: 702)
> 
> 
> 



Intuitively, at least for many people, these young women, diagnosed
with a serious mental disorder and pursuing thinness at the expense of
health and life, lack the ability to make their own decisions. For
some theorists, indeed, such cases are paradigm cases of incapacity,
the kinds of cases a theory ought to be able to account for. However,
the cognitively focused four-abilities model cannot account for these
cases because the young women, though pursuing self-destructive
behavior, are cognitively intact. Indeed, it is not uncommon for
patients with severe anorexia to count as having capacity by the usual
criteria (Elzakkers et al. 2016). The only unusual thing about their
decisions seems to be *what* they decide to pursue and the
values that lie behind this. Is there, then, a way to appeal to the
values such patients express as part of explaining why they lack
capacity? The traditional understanding of value neutrality
 (SS5.4
 above) suggests we can't. But Tan and others (Tan, Hope, &
Stewart 2003a,b; Tan, Stewart, et al. 2006a) suggest that the key is
to recognize that these values (unlike, for example, the unusual
values of the Jehovah's Witness) are *caused* by the
mental disorder itself (For a similar point in relation to addiction
see Charland 2002, 2011). The values in question are
"pathological values".



Although this seems promising at first, a number of problems remain.
To start with, this view appeals to the idea that anorexia is the
source or cause of these values. Even if that were so, we would need
to know more before we could leverage that into an explanation of
incapacity. We need a way of explaining how these values
*undermine* or are *bad-for* decision-making.



Some critics of Tan et al. come very close to just asserting that
since the anorexic values in question do not undermine the usual four
abilities, the values in question clearly should not be taken as
evidence of incapacity (Whiting 2009). This is too simplistic,
however, for it begs the question of whether there might be further
abilities, in addition to the traditional four, that matter. However,
it is also true that Tan et al. have not yet given a fully
satisfactory account. Even if the values driving decision-making are a
product of mental illness, this doesn't by itself license the
conclusion that these values are problematic. An additional link
between the values in question and decision-making is needed and it is
not yet clear whether one can be provided.



A second worry is that such an approach (one that appeals to
pathological values) risks giving up one feature of the current
framework prized by many psychiatrists, namely the refusal to use
diagnosis as a basis for determinations of capacity
 (SS5.5
 above). If anorexia causes problematic values and if this is
sufficient to render patients incompetent, then since all patients
with anorexia have such values, we will in effect be saying that all
such patients lack the capacity to refuse treatment.



Finally, it is controversial whether or not we can really say that
anorexia *causes* these values, even though it is clear that
anorexia correlates with the existence of them. Like most mental
disorders, anorexia nervosa is defined in terms of its symptoms rather
than an underlying cause. Namely, the disorder is defined in terms of
the strong desires for extreme thinness we have been discussing, as
well as the behavioral consequences of these desires. And these
desires in turn reflect the value these patients place on extreme
thinness. It is thus not explanatorily helpful or illuminating in any
way to say that these desires are *caused by* anorexia, for
this amounts to saying (unhelpfully) that strong desires for extreme
thinness are caused by strong desires for extreme thinness or that
valuing extreme thinness causes the valuing of extreme thinness.



The issue here is not about whether anorexia is really an illness
(undoubtedly it is, and a very serious one at that). Rather, the point
is about our *current resources for explanation*. Individuals
can agree that (a) anorexia is a devastating condition and be puzzled
by (b) the fact that such individuals typically count as having
decision-making capacity, and yet also remain puzzled about (c) how
precisely to explain incapacity in these cases in a way consistent
with the general values described earlier
 (SS5.1-5.5).



A slightly different point about values and decision-making capacity
has been made more recently, also in the context of trying to
understand patients with anorexia. After extensive and careful
analysis of the ways individual patients talk about and describe their
illness, Hope et al. (2011, 2013) have raised doubts about whether or
not we can trust a patient's own description of her mental
states, because patients appear to use different words for the same
experience at different times. This is extremely important because,
given the existing framework, everything turns on whether or not
patients have false beliefs (thereby failing either the understanding
requirement or the appreciation requirement). But unusual values are
(on the standard approach) allowed to stand. However, the research of
Hope et al. suggests that the line between beliefs and values can
actually be deeply obscure for patients as well as clinicians.



Hope et al. (2013) have argued that individuals with anorexia are in
the grip of affective states that shape how they see the world. Yet,
although the world presents to them as one way, they may at another
more reflective level, reject the appearances. Thus an individual may
have a strong *feeling* or *emotional sense* that she is
fat. But even though these feelings incline her to accept the
proposition that she is fat she may not in fact believe at a higher
level that she is fat. She may know quite well that she is dangerously
thin. An analogy here with optical illusions is helpful. The
experience of seeing a stick in water as bent is incredibly powerful,
but we may nonetheless know it is not bent. However, the mental state
that is most authoritative when it comes to reporting our beliefs may
not be the same as the mental state that is most motivationally
powerful. When it comes time to make choices about treatment, the
salience of the affective phenomena and the relative lack of salience
of the dangers of self-starvation may lead a person to refuse
treatment.



Here is where the puzzle for capacity assessment arises. In a very
real sense, the refusal is based on a mental state with a certain
propositional content that is false. So, under the traditional
analysis, it seems we should count the patient as lacking capacity.
But in another sense, since her reflective self does not accept that
content (she does not strictly speaking believe it) she has no false
*beliefs* (Hope et al. 2013: 30). And she is credible in
reporting this. So, again following the traditional analysis, it seems
we should count the patient as having capacity.



She will, of course, be called upon to justify her decision and it may
not be clear to her how to describe her mental states. We do not
typically report affective experiences in the same way we report
beliefs. The only logical argument she could possibly offer would be:
I would prefer to risk death than to put on weight (Hope et al. 2013:
30). And this looks like a preference. On the classic analysis she is
competent because her refusing treatment logically follows, given her
preferences. But as Hope et al. say:



> 
> 
> But this preference is not one she clearly held before discussion with
> her physician. It was constructed to create a rational argument for
> refusing treatment that can satisfy her physician. (Hope et al. 2013:
> 30)
> 
> 
> 



If these descriptions of what happens with anorexia patients are
correct, it seems plausible to suppose such patients should not
(normatively speaking) be counted as having decision-making capacity.
They are, on this picture, subject to the emotional equivalent of a
powerful illusion, and they are unable to resist the illusion when it
comes to choice. However, many problems remain about how to properly
distinguish cases of capacity and incapacity. The description offered
by Hope et al. is extremely important for what it calls to our
attention, but it still leaves most of the core issues unresolved.




Finally, a slightly different (but related) challenge to the
four-abilities model is made using the notion of authenticity.
Building on the idea introduced by Tan, Stewart, Fitzpatrick, and Hope
(2006a) that certain values are caused by mental disorder and suspect
in virtue of this, these critics raise the worry that the values
driving decisions may not be authentic values of the patient. If
authenticity is, in turn, thought of as part of autonomy, then it
might be thought that inauthentic values undermine capacity (though
see discussion of autonomy and capacity
 SS2).
 So the question then becomes: can we require that the values driving
a treatment decision be authentic, and if not may we declare the
person incompetent?



Kim (2016) has recently defended a mild form of authenticity
requirement that he calls "the ability to value". The
terminology can be misleading because it is not about whether one is
able to value *something* as opposed to *nothing*, but
about whether one is able to bring one's own authentic values to
bear on decision-making (Hawkins 2016). There are two questions raised
by Kim that correspond neatly to the two requirements he sketches for
the ability to value: first, are the values driving a particular
treatment decision really the patient's own values, or is the
patient acting out of character? Second, if the values seem
inauthentic, can we demonstrate that the new problematic values arose
with the onset of mental disorder or after some illness related event
(for example, a depressed person who stopped taking meds three weeks
ago, and started wanting to die shortly thereafter)? The second
question is analogous to the second question that arises in assessing
appreciation, where we have to determine whether or not a
patient's failure to believe that the facts are true of her is
caused by a mental problem of some sort (e.g., dementia induced
confusion or ICU psychosis). If appreciation fails because of
religious or cultural beliefs, this is not a sign of incapacity. Kim
is clear that he intends this requirement to be applied very
carefully, and that impairment in this domain is not sufficient for a
determination of incapacity, though he is vague about what precisely
it can contribute to such a decision.



One problem with this view arises if one considers the fact that some
individuals with mental disorder identify with their illness (Erler
& Hope 2014). Tan, Hope, and Stewart (2003b) explore the ways that
many young women with anorexia see their illness as an essential part
of who they are. Yet it is these same values that are influencing
their treatment decisions. If we wish to find a way of explaining the
deep intuition that these women lack decision-making capacity, then if
we do so through appeals to authenticity, we will most likely have to
give up on the idea that individuals are themselves the final
authority about which values or features of themselves are the
authentic ones.



Appeals to authenticity also face problems related to our ability to
distinguish truly inauthentic values from new but still authentic
ones. Not all new values are inauthentic, for it is possible for a
person to autonomously change her mind. Moreover, sometimes illness
gives us experiences that seem highly relevant to our choices. Having
once experienced illness we may be inclined to make decisions we would
never have expected ourselves to make before we were ill. The
decisions are not caused by our illness, but rather reflect what we
have learned from illness. As such they should not count against
capacity. But to ensure this doesn't happen we need reliable
ways of distinguishing cases that can, in fact, be very hard to
distinguish from the outside. [Also, insofar as we are looking for
suspicious *changes* in values as signs of inauthenticity, this
will not help in many cases of anorexia nervosa, where the patients in
question typically acquire the illness at a very young age before they
have developed characteristic values distinguishable from the values
of the illness.]



Kim's awareness of the dangers of confusing real value changes
with pathologically induced changes leads him to emphasize the need
for extreme caution in this area. Indeed, one problem with Kim's
approach is that his understandable caution means that in many cases
where intuitively a patient may lack capacity, we will still not be
able to rule the patient incompetent (Hawkins 2016). In short, the
original range of ethical constraints on capacity assessment continues
to make it difficult to capture all and only the cases that seem
intuitively to be cases of genuine incapacity, and Kim's
solution, though perhaps capturing a few more cases than other views,
is still restrained in ways that leave us with some highly
counterintuitive cases.


## 7. A Different Kind of Challenge: Voluntarism



Informed consent requires that a patient be *able* to make a
meaningful decision for herself. But this is just the pre-requisite.
If the individual has capacity then he or she must be given all
relevant information, and then he or she must make a *free or
voluntary decision*. Voluntariness is complicated terrain, and
most of the discussion of voluntariness in informed consent has
focused on the sorts of illegitimate behaviors by other people that
can undermine voluntariness: force, coercion (threats) and undue
inducement (Hawkins & Emanuel 2005).



However, a more neglected question (at least in the literature on
informed consent) is the question of whether factors *internal*
to the person can undermine voluntariness. If so, what are these
factors and how do we identify them? If such factors exist, then they
may most usefully be discussed in connection with decisional capacity
as opposed to external topics like coercion. This is because questions
about internal psychological barriers bring us back once more to
questions about the particular abilities of the individual patient or
subject, and because if there are problems here, their presence and
extent are most likely to be assessed by clinicians. Arguably, just as
failure to grasp the facts of the situation can make a choice
meaningless, something like addiction--which in certain contexts
almost guarantees that the person will choose in a particular
way--may also thereby make choice meaningless (Charland 2002,
2011).



In the early days of psychiatry, it was widely recognized that there
could be lesions of the will, just as there could be lesions of the
understanding and affective capacities. Towards the end of the
nineteenth century the French philosopher-psychologist Theodule Ribot
published a highly influential book on the topic, entitled *Les
maladies de la volente*--later translated as
*Diseases of the Will* (Ribot 1883). Ribot argued that the
capacity for voluntary choice could sometimes be compromised,
perverted, or even virtually obliterated, by disease, and that the
various impairments that resulted deserved to be scientifically
studied and classified. While it is no longer popular to speak of
"diseases of the will" contemporary clinicians and
researchers do recognize that human will and agency can be impaired or
even depleted (Baumeister et al. 1998) in various ways by diseases of
many sorts. But there is still little understanding of what such
deficits mean for the doctrine of informed consent.



Those contemporary theorists who think we need to acknowledge the
possibility of genuine psychological barriers to voluntariness tend to
ask questions about the decision-making ability of patients with
addiction (Charland 2002, 2011) or obsessive-compulsive disorder
(Ruissen 2015; Ruissen et al. 2016).



Unfortunately, the literature has paid little attention to the
distinction made above between internal psychological barriers and
external barriers. For example, Appelbaum, Lidz, and Klitzman (2009)
set out to chart the domain of voluntariness, but ended up focusing
exclusively on external factors such as coercion and undue inducement.
They are explicit that since the law has traditionally treated
voluntariness in an external fashion--as the absence of force,
coercion or undue inducement--they have sought to explain only
these kinds of phenomena. However, this begs the ethical question of
whether there really might be internal barriers to meaningful choice
and if so, whether the law *ought* to recognize them even if it
currently doesn't. Other theorists such as Laura Weiss Roberts
(2002a,b) have explored a wider range of factors that might affect voluntariness, but with the
result that far *too much* is included (as opposed to too much
being excluded, as above). Approaches like hers fail to make crucial
distinctions between strong, though understandable, feelings a person
might have in response to a situation (but which need not undermine
the voluntariness of a choice) and more plausible threats to
voluntariness such as addiction. The difficulty is precisely to
distinguish genuine impediments to voluntary choice from the many and
varied internal factors that can influence choice, and/or lead to
imprudent or unwise choices. Much work remains to be done here. 


## 8. Increasing Relevance and Significant Public Misperceptions



The literature on decision-making capacity has grown exponentially
over the last decade, though interestingly most of the explosion is in
the clinical and research literature and has a decidedly empirical
bent. Although new topics continue to be introduced, it is clear that
outside philosophy much is assumed as settled that would not look
settled to a philosophical eye. Thus it will be interesting to see how
things develop over the next decade.



In addition, decision-making capacity is becoming more and more
relevant as certain types of ethical questions become hot topics of
public debate. For example, decisional-capacity is obviously of great
importance in relation to medical-assistance-in-dying laws
 (MAID),[4]
 and yet the public often fails to understand what is actually meant
by decisional-capacity as well as how variable the practices of
assessing capacity really are (Kim, Appelbaum, et al. 2011; Seyfried,
Ryan, & Kim 2013). This is particularly important since one of the
most divisive issues currently concerns whether those with mental
illness or cognitive impairment should be candidates for assisted
dying (Stewart, Peisah, & Draper 2011; Broome & de Cates 2015;
Price 2015; Schuklenk & van de Vathorst 2015; Appelbaum 2016;
Charland, Lemmens, & Wada 2016; Doernberg, Peteet, & Kim 2016;
Kim & Lemmens 2016; Blikshavn, Husum, & Magelssen 2017). As
this entry makes clear, some of the most difficult questions about
decisional capacity arise specifically in the case of mental illness,
making it even harder to determine whether MAID for the mentally ill
is a policy that could be implemented appropriately, where
"appropriate" here just means an implementation that
strikes just the right balance between protecting the truly
vulnerable, on the one hand, and promoting freedom for those who can
meaningfully exercise it, on the other.