Informed Consent and Patient Autonomy

1.1 Background and Motivation

The medical and philosophic notion of the patient's right to

informed consent (IC) may be in danger. It is widely held in

medical ethics and practice that the patients has the right, which

only she may waive, to be presented with the relevant information

regarding her treatment options, so that she may make an informed

decision about whether to consent or not to a treatment.

Furthermore, respecting this right entails that medical

professionals are not to operate upon or treat patients without

first obtaining their IC, and that a patient may refuse any

treatment option, for whatever reason she sees fit.

In the UK, the patient's right to IC is well established. As

Ashcroft et al (2007) puts it:

“informed consent is now explicitly specified in most codes of good practice for

medical professionals” (p5)

Thus, the General Medical Council (1998) stresses the importance

of respecting the patient's right to IC as part of “good medical

practice”1, and more recently (2008) emphasised that “before any

medical professional can examine or treat a patient, they must

obtain informed consent to do so”.2 Christian Selinger puts it

nicely when he writes that “Informed consent is required for all

medical investigations and procedures, and is considered a corner

stone of modern medicine”.3

In terms of what information counts as 'relevant', four aspects

are normally considered necessary for IC: information about the

nature of the proposed procedure; its risks; what the alternatives

are of the treatment; and its benefits.4

In fairness, there are what are often described as exceptions to

these IC requirements, although perhaps they are better described

as aspects delineating the limits of IC. First, these IC practices

do not (necessarily) apply to minors, nor to less than mentally

competent adult patients.5 Nor when dealing with a patient in need

of emergency treatment, but who is incapacitated such that IC is

1 www.gmc-uk.org/Seeking_patients_consent_The_ethical_considerations.pdf_25417085.pdf

2 http://www.patient.co.uk/doctor/consent-to-treatment-mental-capacity-and-mental-health-legislation

3 http://www.bjmp.org/files/june2009/bjmp0609selinger.pdf4 Berg et al(2001), Young(2009)5 Mental Health Act(1983,amended2007)

impossible,6 although even in this case the doctor should consider

what treatments they believe the patient would welcome. Finally,

IC does not necessarily apply when treating a patient is a matter

of protecting other agents, for instance, when dealing with

patients with a communicable disease.7

But on what grounds are these IC practices justified, and are they

philosophically sound? By far the most commonly cited answer is

that the right to IC is grounded in taking patient 'autonomy'

seriously.8 However, recently this answer, so often repeated, has

come in for significant philosophic criticism. First, as Onora

O'Neill (2003) notes, 'autonomy' is a “deeply obscure” term which

can mean many different things (p5). Thus, before we can even

begin to take this argument seriously, we need to cash out

precisely what we mean by 'autonomy' and why this grounds our IC

practices. Second, recently some of the most important and

influential attempts to do just this, have been subject to

powerful philosophic criticism. I will mention two important

examples.

6 http://www.nhs.uk/Conditions/Consent-to-treatment/Pages/How-does-it-work.aspx7 Control of Disease Act(1984)8 Delany(2005),

Selinger:http://www.bjmp.org/files/june2009/bjmp0609selinger.pdf, Nir Eyal(2011) http://plato.stanford.edu/entries/informed-consent/

First, as James Wilson has recently identified (2007), there is

often an assumption, influenced by the works of Faden and

Beauchamp (1986) and Beauchamp and Childress (2008), that

autonomous choices are intrinsically worthy of respect. Along

these lines it is argued that IC procedures are justified as a

means of promoting 'autonomous decisions' which are intrinsically

worthy of respect.

But Onora O'Neill has subjected this argument to a powerful

critique (2002). She notes an ambiguity in the meaning of

'autonomous choice' deployed by the above argument. Sometimes the

term seems to refer to choices we have reflected upon, or that

reflect our settled preferences and desires; the idea being that

this feature makes them intrinsically worthy of respecting. But,

O'Neill objects that this argument cannot ground our current IC

practices which protect all our voluntary choices, including those

we have not reflected on/do not reflect our settled preferences

(p37).

Perhaps because of this problem, the same argument sometimes

deploys a less demanding notion of 'autonomous choices', this time

referring to all our independent choices. But then this leaves

mysterious why these independent choices should be considered

intrinsically worthy of respect. After all, our independent

choices may well be

“self-centred, pig-headed, impulsive, random, ignorant, out of control and

regrettable or unacceptable for these and many other reasons”

(p28)

The second highly influential account I want to briefly look at

comes courtesy of O'Neill herself (Ibid). O'Neill reworks the

relationship between IC and autonomy, evoking what she calls the

notion of 'principled autonomy' (PA). PA has its roots in Kant and

concerns acting only from principles one could universalise. As

such, PA rules out, among other things, acts of coercion,

deception, enslaving and killing. On this line of argument, IC is

justified as a means of avoiding deceiving or coercing the

patient, which is a requirement for respecting PA.

But James Wilson has recently convincingly undermined this account

(2007). He locates two key problems. First he points out that just

because a principle cannot be universalised, does not mean the

principle is necessarily morally problematic:

“you cannot universally will the maxim of leaving work an hour early to beat

the traffic without contradiction: for if everyone acted on this maxim, the rush

hour would merely start an hour early, and you would still be stuck in the

traffic. However, leaving work an hour early to beat the traffic is not immoral”

(p9)

Second, even setting aside this point, Wilson doubts whether

O'Neill is right to think coercion cannot be universalised.

O'Neill assumes that I cannot will the universalisation of

coercion because in doing so I would have to will that others

coerce me, and thus I would remove my own ability to coerce. But

as Wilson points out, this argument is false. Universalised

coercion just requires that all agents engage in coercion; not

that all agents are themselves coerced.

In light of these arguments, are we to conclude that respect for

autonomy cannot in fact ground our IC practices? This is the

question I address in this essay. I want to look at three more

possible ways to cash-out the connection between IC and autonomy:

First I take a look at a right-based account based on Arthur

Ripstein's recent work on Kant's 'Rechtslehre'. I then briefly

consider a Millian account of the instrumental value of

autonomy/IC. But most space is dedicated to a Rawlsian respect-

based account, recently put forward by James Wilson, which I will

suggest takes the best parts of the former accounts, while

avoiding the problems associated with each.

Three Accounts

2.1 Ripstein

I start by examining how a right-based account may be used to

explain the connection between autonomy and our IC practices. I

draw on Arthur Ripstein's recent (2009), excellent account of

Kant's philosophy of right (his Rechtslehre) and in particular,

Kant's conception of the 'innate right of humanity'.

According to Kant, agents who possess the capacity for self-

governance, that is, the ability to conform their actions to laws

and principles they have chosen, have a special moral status that

distinguishes them from things in the world, like inanimate

objects, that possess no such capacity. Today 'autonomy' is often

associated with this capacity9, although Kant himself did not

9 Dryen:http://www.iep.utm.edu/autonomy/,Wilson (2007)

construe the term this way.10

Kant tells us that part of what it means for agents with this

capacity (what we might today call 'autonomous agents') to enjoy a

special moral status, is that they possess certain rights.

Principal among these rights is what Kant terms the 'innate right

of humanity'. This refers to the right of each (autonomous) agent

to to use his own means/powers (which at this point in Kant's

argument refers just to our bodies) however he wishes, as long as

this is consistent with a similar freedom in others (p42).

Ripstein recognises two ways agents can interfere with this right.

First, by 'destroying', meaning to damage the agent's body, as in

the case of causing injury (Ebels-Duggan, 2011, p5). Second, by

'usurping' the agent's powers, meaning to interact with/use the

agent's body, in ways they have not authorised, as in coercion or

unauthorised touching.

Along these lines, IC is justified as a means of ensuring doctors

do not violate their (autonomous) patient's innate right of

humanity. Such a right is possessed by all agents with the

capacity for autonomy, and means that doctors 'wrong' their

10 See O'Neill(2002)

patients (by usurping and possibly destroying their powers) by

treating, operating upon them, or even merely touching them,

without their authorisation, no matter what the benefits.

2.2 Critique

A right-based account like Ripstein's would seem to be ideally

placed to explain our IC practices. In particular, the expectation

that doctors should respect their patient's right to IC, no matter

what the benefits from disregarding this right. Still, I want to

highlight two problems.

First, I would suggest that right-based accounts like Ripstein's

seem to have a problem dealing with incapacitated patient cases.

We said earlier that it is permissible for doctors to treat

patients without their IC in these cases (so long as they have

reason to think the patient would welcome the treatment). But

doesn't the doctor, on the right-based model, usurp (and possibly

destroy) the patient's body by acting without her authorisation?

One possible response is to evoke the notion of hypothetical

consent; treatment in these cases is permissible because the

patient would have consented if given the chance. But such a

response is unsatisfying. Hypothetical consent is not actual

consent. If treatment is permissible in these cases, it cannot be

because the patient has actually given authorisation/consented.

Second, right-based accounts tend to suggest, implausibly, that

all rights-violations are equally wrongful. This problem is

associated with Robert Nozick (1974) who conceptualised rights as

side-constraints and rights-violation as each having the same

“infinite (negative) moral weight” (p29). A similar problem runs

though Ripstein's account. If all that matters is our right to use

our 'powers' how we wish, consistent with others doing the same

(respecting the right of humanity), and this right applies equally

to each of our powers (each part of our body), then it seems to

follow that all interferences wrong us equally. Thus, we are left

with the implausible conclusion that conducting a heart transplant

without the patient's authorisation, is equally as wrongful as

taking a saliva-sample without her authorisation.

3.1 Millian Instrumental Account

I now move to a very different, instrumental account of the

connection between autonomy and IC. This time I want to start by

considering a notion of autonomy- what Beauchamp and Childress

(2008) call 'personal autonomy'- which refers to the freedom to

make decisions without having those decisions manipulated by

others, or distorted by ignorance of the salient facts.

“Personal autonomy encompasses, at a minimum, self-rule that is free from

both controlling interference by others and from certain limitations such as

an inadequate understanding that prevents meaningful choice” (p100-

1)

There are a number of reasons to think that ensuring agents

possess 'personal autonomy', at least as long as they do not harm

others through this possession, is instrumentally valuable.

Specifically, I want to look at two arguments John Stuart Mill

puts forward in his classic text On Liberty(1990), that emphasise the

dangers of state interference.

First, Mill argues that allowing states to interfere with the

ability of citizens to rule their own lives11 is dangerous because

states that are given this power are liable to use it for their

own personal advantage and abuse their citizens (V 20–3). Thus,

even if we think that theoretically states may be able to

11 at least so far as we are not harming others

interfere with citizens and benefit them, Mill warns against, in

practice, giving so much power to the “king of the vultures”(the

government), lest they use it to “prey[ ] on the flock” (the

citizenship).12 David Brink puts it somewhat more plainly:

“politicians are corruptible and will use a paternalistic licence to limit the

freedom of citizens in ways that promote their own interests and not those of

the citizens whose liberty they restrict” (1992, p164)

Second, Mill argues that even well-intentioned states who wish to

interfere with citizens for their own good, are liable to harm

them, leaving them worse-off than if they had been left to their

own devices (IV 4,12). According to Mill:

“with respect to his own feelings and circumstances, the most ordinary man or

woman has means of knowledge immeasurably surpassing those that can be

possessed by anyone else” (IV,4)

Thus, even when the interfering state is well-intentioned and aims

to benefit us, due to its epistemic disadvantage, chances are it

harms us.

12 (I,2)

“the strongest of all the arguments against the interference of the public with

purely personal conduct is that when it does interfere, the odds are that it

interferes wrongly and in the wrong place” (IV,12)

On these two instrumental, Millian arguments, even though it may

be theoretically possible for states to undermine an agent's

personal autonomy and still benefit them, this is a dangerous

power to give to states as in practice it likely leads to harm to

agents. Accordingly IC is important as part of ensuring patients

possess 'personal autonomy' (the freedom to make decisions without

outside interference), which is important as a means to protecting

agents from harmful state interference.

3.2 Critique

The oft-cited problem with instrumental accounts like this, is

that they only provide defeasible reasons to respect autonomy/the

patient's right to IC. Mill's arguments do not tell us that it is

impossible for states to interfere with an agent's 'personal

autonomy' and still greatly benefit them. Just that this is a

dangerous policy/unlikely. As such, the door is left open,

contrary to our current IC practices, to interfering with patient

autonomy and her right to IC on those occasions, rare though they

may be, when we can be sure doing so is greatly beneficial.

In fairness, whether this objection is right depends on just how

strong the instrumental reasons are for avoiding state

interference. As Rolf Sartorius (1983) notes, strong enough

instrumental arguments might call for a complete ban on state

interference e.g. if it turned out upon analysis that state

interference is in practice too dangerous to safely permit.

However, it seems doubtful whether the two Millian arguments alone

could justify such a strong conclusion.

Furthermore, even setting aside this issue, these two Millian

arguments suggest that respecting autonomy is important as a means

to avoiding harm. But alone they do not explain why avoiding harm

matters morally speaking. Of course Mill would appeal to a

Utilitarian argument along the lines that avoidance of

harm/promotion of happiness are what ultimately matter morally

speaking. But the problems with Utilitarianism are well known.13

What is needed then to accompany these instrumental arguments, is

13 see Nozick(1974), Rawls(1971)

some framework which plausibly explains their moral significance.

4.1 Wilson

The account of the connection between autonomy and IC I want to

spend the most time on is James Wilson's recent Rawlsian, respect-

based account (2007). For Wilson, the notion of autonomy we should

focus on is autonomy as a special capacity. In particular he

evokes the Rawlsian idea of autonomy as the capacity for two moral

powers: on the one hand the capacity for a conception of the good,

and on the other hand, the capacity for a sense of justice.

According to Rawls and Wilson, agents who possess these two moral

powers (essentially all mentally competent adult agents) deserve

special moral consideration. In particular, there is a moral

requirement to treat them with respect, which Wilson takes to

involve respecting their choices (at least so long as those

choices are similarly respectful).

“Just in virtue of having the two moral powers, a person has a right to make claims

on others and to have their views taken seriously: so a requirement to respect the

choices of persons follows from the more basic respect”

(p11)

The crucial question then, is: how does one go about respecting

autonomous agents and their respectful choices? The answer, Wilson

tells us, evoking the work of Elizabeth Anderson, will depend on

context:

“respecting autonomous choices entails different duties in different normative

contexts” (Ibid)

Thus, what is required of a shop assistant to respect his

customer, may be different to what is required of an audience

member to respect an on-stage performer. In the context of a state

respecting its autonomous citizens and their choices, there are

very special challenges. Even regarding only the respectful

choices of reasonable citizens, citizens disagree with each other

about what the correct conception of the good is. How can the

state respect the conflicting choices of its many citizens, when

favouring one agent's choices would seem to come at the cost of

disrespecting another's?

Wilson rules out two options as inadequate. First, given the

plurality of reasonable conceptions of the good, it is unrealistic

to hope that the state can devise some single conception of the

good that all agents can accept. Second, the state must not simply

enforce a conception of the good on agents that agents do not share.

By 'enforcement' Wilson seems to have in mind states placing

restrictions on citizens' self-regarding or harmless actions, in

the name of some conception of the good the citizens themselves do

not accept. According to Wilson, enforcing a conception of the good

is disrespectful because:

“any attempt to enforce a state sanctioned conception of the good life will surely

have unacceptable results, as was evidenced in the Reformation and its

aftermath”

(Wilson, p12)

This claim requires more attention. Why is allowing state

enforcement incompatible with respecting autonomous agents? One

answer I don't think Wilson can appeal to is that enforcements are

necessarily disrespectful. Most liberals will admit of at least

some cases of valid or respectful enforcement e.g. seatbelt laws.

Of course what we really need is a full account of what respecting

citizens involves, but Wilson never goes this far. Still, even

without such an account, it might seem obvious that a minimum

requirement of a respectful enforcement, is that it imposes only

small burdens on the enforcee. Thus, Reformation-style

enforcements such as when agents are forced to accept some

religion they find intolerable, immediately count as

disrespectful. Along these lines, Wilson seems to be suggesting, I

think plausibly, that licensing state enforcement is incompatible

with respecting autonomous agents, because it risks imposing large

burdens/harms on enforcees. Beyond historical examples like the

Reformation, Wilson does not explicitly cash this out, but I think

a good place to start would be to refer back to the two

aforementioned Millian arguments regarding the dangers of state

enforcement, as well as the fact that enforcement, by its nature,

imposes harmful burdens on the enforcee.

So with two options already ruled out, how does Wilson think the

state is to go about respecting autonomous agents and their

choices? The liberal answer, Wilson tells us, is to grant a kind

of decisional privacy and authority to each agent, at least concerning

their private and respectful choices:

“The liberal solution to these difficulties has always been to treat a large swathe

of choices about how the individual wishes to live their life as private, thus

allowing each person freedom to pursue their own conception of the good

without forcing them to justify themselves to others, where such choices do not

impinge unfairly on the interests of others”

(Ibid)

Along these lines, Wilson argues that our IC procedures are

justified as an important part of ensuring that doctors/the state

respect the private sphere of patients, which we have said, is an

important part of the moral requirement to respect autonomous

agents and their choices.

4.2 Critique

Although Wilson does not suggest this himself, I read his account

as a kind of reconciliation of the two previous, taking the

strengths of both while avoiding the problems associated with

each. On the one hand, like a right-based account, Wilson explains

that patients have a right to IC (as part of their right to

authority over their private sphere) that doctors cannot simply

override when doing so will be beneficial. But instead of deriving

this right from a system of innate or natural rights, and taking

on the problems associated with these theories, Wilson derives it

from a plausible moral requirement to respect autonomous agents.

In part, this argument can be cashed out, I have suggested, by

looking at the dangers of the alternative-allowing states

enforcement- and how this is incompatible with respecting those

agents. Thus,Wilson's account can make use of Millian-style

instrumental arguments, while also crucially explaining their

moral significance: they help us see that allowing state

enforcement is dangerous, likely to harm agents, and thus

incompatible with respecting agents.

Still, I want to highlight four issues for Wilson's account.

However, unlike the other accounts we have looked at, I think none

of the points function as knock-down criticisms. Rather, I hope to

highlight how Wilson might respond to some possible objections,

and where (and perhaps how) he needs to develop his account

further.

Medical Enforcement

First, we highlighted two (Millian) arguments why allowing state

enforcement risks harming agents, and so fails to respect autonomous

agents. But perhaps we think these arguments do not apply to

medical enforcement. Regarding the first argument, we tend to

trust medical professionals not to be abusive. As for the second,

we might think that trained doctors are in an ideal situation to

know when enforcements will impose small burdens and secure large

benefits for their patients.

To focus just on the first argument, two points are worth

emphasising in response. First, patients are especially vulnerable

to abuse. Not only are they physically vulnerable, but often they

may know very little about their treatment and so are reliant on

the medical professionals around them. Given this vulnerability we

actually have reason to be extra-cautious of opening the door to

abusive enforcement in a medical setting. Second, while it is true

that we tend to trust medical professionals not to be abusive, it

is important to emphasise that no industry is perfect. Patient

abuse is a reality. Both the abuse scandals at Winterbourne View

Hospital and Staffordshire Hospital took place here in the UK in

the last decade, and of course IC has its roots as a response to

the abuses perpetrated by Nazi doctors.14

14 http://www.lancaster.ac.uk/fass/resources/ethics/docs/Resources/informed_consent.pdf

Presumption Model?

A second way to apply pressure to Wilson's account, is to ask

whether a blanket-ban on enforcement within the agent's private

sphere really is the most appropriate way to ensure states respect

autonomous citizens. Even if we accept the Millian arguments

offered earlier, why not instead make states adopt a powerful

presumption in favour of non-enforcement, but allow them to enforce

when they can be reasonably sure enforcement will be respectful?

But the problem here is that there is no settled philosophic, nor

I think general, consensus on when an enforcement counts as

respectful. Even enforcements that impose relatively small burdens

and secure huge benefits can fail to be respectful; I think most

would find it disrespectful for a doctor to take blood, or even

something as trivial as a saliva-sample, from a patient who has

refused this procedure, even though doing so may secure huge

benefits while imposing relatively small burdens.

Without any consensus regarding when enforcement counts as

respectful, it seems a dangerous policy to allow states to enforce

when they judge such enforcement to be clearly respectful. Of

course, perhaps this might change were a philosopher to one day

present a full and plausible account of 'disrespecting' autonomous

agents. But without such an account, a liberal ban on state

enforcement may be the most reasonable option.

Harmless Enforcement

Third, we suggested earlier that the most obvious reason state

enforcement seems disrespectful, is that it risks harming enforcees.

But some enforcements seem disrespectful yet relatively harmless,

as in the saliva-sample case. Can Wilson explain these cases?

I think he can. Just because we said that harmful enforcements are

likely to be disrespectful, does not mean that (relatively)

harmless enforcements are therefore respectful. Of course what

Wilson really needs is some account of what defines a

disrespectful action/enforcement (which can explain why even

relatively harmless enforcements can count as disrespectful). As

already said Wilson gives no such account, so one would like to

hear more on this issue before one fully embraced his account.

Still, I want to suggest where he might start.

Wilson might draw on the work of SV Shiffrin (2000). Writing on

paternalism Shiffrin claims that even relatively harmless

interferences with an adult agent's private sphere

(body/health/property) aimed at helping that agent, are deeply

insulting, or we might say, disrespectful. Why? Two aspects are

emphasised. First, as a society, as part of recognising their

status as an adult agent, we generally allow adult agents the

freedom and autonomy to take care of their own

health/body/property, at least so long as they are not harming

others. Second, part of what it means to be an adult agent, is to

be able to competently manage one's own body/ health/property.

Accordingly, when states interfere, even harmlessly, with our

private lives in this way, they on the one hand, fail to

acknowledge our status as an adult agents, and on the other hand,

insultingly (or disrespectfully) imply that we cannot deal with

these private matters adequately ourselves, and thus, are failing

qua adult agents. If this is right, we can explain why even

(relatively) harmless interferences, like the saliva-sample case,

are incompatible with respecting autonomous agents.

Moral Significance

Fourth and finally, Wilson plausibly suggests that respecting a

patient qua autonomous agent, may ground respecting their non-

violable right to IC. But this argument only really works so long

as there exist no other, more significant moral considerations,

that tell against always respecting the patient's right to IC. For

instance, what if we think that a moral requirement to promote

welfare, or to secure some theory of justice, trumps the moral

requirement to respect autonomous agents? And that these former

moral considerations tell against respecting IC? In this case

Wilson's account is severely weakened.

Thus, before we can really embrace Wilson's account, we may need

to understand the way the normative demand to respect autonomous

agents, interacts with other conflicting normative demands. But

working this out is no mean feat. It may require a full moral

theory, the kind of which philosophers have disagreed about for

millenia.

5.1 C onclusion

This essay comes out in support of Wilson's recent respect-based

account of why taking autonomy seriously may, after all, ground

our IC practices. But even an account as plausible as Wilson's

faces its challenges. Specifically, I have pointed to a need to

fully flesh-out an account of what it means to respect an

autonomous agent, and perhaps more importantly, an account of why

we should take the moral requirement to respect autonomous agents

so seriously, especially seeing as other moral requirements may

well pull in the opposite direction.

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