Is informed consent really justified?

But why should we require informed consent, when it comes at a cost to the individual’s health? Why gives a single non-expert veto power to disallow even a mass of medical experts to make the final decision on matters that fall within their fields of expertise?

This is my summary for the article Informed Consent (Stanford Encyclopedia of Philosophy). Here are what I did after copying the text from the source:

  • Remove inline citations
  • Remove arguments I personally feel insignificant
  • Edited in my own words so the summary is shorter and reads more natural

I hope that this summary is acceptably fair and complete though.

What is informed consent?

Informed consent is shorthand for informed, voluntary, and decisionally-capacitated consent. It is a legitimacy requirement for certain actions. Inadequately informed consent makes certain intrusions impermissible.

For and against arguments for informed consent

In here physician is a short hand for physicians and researchers, and patient is a shorthand for patients and research participants.

ForAgainst

Protect the patient’s health and welfare

  • The physician can be neglectful, overconfident or want to promote science or his personal career rather than her medical interests
  • The patient has other non-medical interests as well, and is typically the best judge of her own good and mind it far more than he does, even when he is convinced that he acts in her best interests
  • In cases when many physicians and patients are fairly certain that she is not making a good decision on her medical interests, then it’s unlikely that all of them are neglectful, overconfident or have hidden agenda
  • She can be biased and ignorant as well
  • She is not the only one who deeply care about her other non-medical interests. Her family, friends, and even herself before, can mind far more than her as well

Autonomy

  • Concordance between our care and our values is often key to our continued satisfaction and cooperation
  • Autonomy is inherently good for us. First, self-rule is central to a good life, perhaps because it makes us less self-alienated and more worthy of praise for our virtuous decisions. Second, autonomous choices promote our ultimate goals, on the non-controversial assumption that medicine affects non-technical and controversial matters of value and faith on which physicians are not experts (say, a Jehovah’s Witness’s faith), and the controversial assumption that these goals define how well our lives go
  • Kant’s formular of humanity: we should never act in such a way that we treat humanity, whether in ourselves or in others, as a means only but always as an end in itself We have an authority to determine our own actions
(Clearly an autonomy-based justification for the informed consent isn’t to protect her health, but more about a matter of respect for an autonomous decision maker’s refusal)
  • The cost of ensuring that a single decision is absolutely autonomous may be a severe, permanent, or fatal health problem
  • No theory of well-being—neither desire satisfaction, hedonic state, nor objective list—does it seem to follow that either informed consent or autonomous choice invariably makes one’s life better. And if they did, then it would be absurd to claim that informed consent and the principle of autonomy are distinct from, or conflict with, or even supersede, the principle of beneficence.
  • Kant associated respect for persons with treating them only in ways that they could possibly or rationally consent to, not with treating them in ways that they have actually consented to—rationally, voluntarily, or otherwise
  • Many gross violations of informed consent do not directly block our actions
  • Violating informed consent can have positive impact on autonomy. Sometimes closing off an option enables more important freedoms

Prevention of abusive conduct

A bulwark against such deontological offenses as assault, deceit, coercion, and exploitation
  • Physicians should make some effort to explain information again if they discover that their patients misunderstand crucial risks. Intuitively, this is so even if the patient was given an excellent explanation, one that worked with similar patients and which would rule out reasonable suspicion of deceit, exploitation, or fraud
  • Hardly leave room for strong reasons against coercive medical intervention when third parties perform the coercion; for example, against extracting a live kidney from a consenting patient who consents only due to her family’s coercion, yet such reasons are widely recognized

Trust

  • Ongoing societal trust in caretakers and medical institutions is important
  • What is likeliest to inspire public trust is unconditional commitment to one’s immediate patient’s alleged consent rights
  • Honor the trust that the patient has placed in the physician, and as part of the fiduciary role that the physician has undertaken
  • Intuitively, informed consent can remain necessary even when the public could never find out that a core violation of the requirement took place
  • Invasive interventions without a person’s informed consent are usually thought to wrong that person, not to wrong only the potential future victims of a decline in public trust
  • The backward-looking version of the trust rationale has difficulty explaining the need for informed consent outside pre-existing caretaker-patient relationships. Forced bodily trespass, for example, seems (not much less) wrong when it comes from complete strangers

Self-ownership

We are presumed to hold proprietary rights over ourselves and our bodies
  • Self-ownership may just mean that the individual should be the final arbiter in the relevant sphere, and that seems like a part of what informed consent requires—hardly an edifying rationalization for requiring informed consent
  • A further challenge is that the self-ownership rationale fails to clarify why touching sensitive areas of the body without consent seems worse than touching less sensitive areas without consent. Property violation is not usually a matter of degree
  • Why must physicians disclose and ensure our comprehension of information prior to intervention, something which proprietary rights seldom require? Indeed, the notion of self-ownership could be used against coercing doctors to give patients that information—because such coercion may violate these physicians’ self-ownership rights to interact as they will

Non-domination

No one should be under the arbitrary control of another and that informed consent requirements help to prevent such arbitrary control. There is a knowledge gap between them.
If so, then why would physicians and investigators who are closely monitored and cannot afford to mistreat patients also be obligated to let patients decide?

Personal integrity

One reason offered for keeping surrogate pregnancy contracts non-enforceable is the need to maintain surrogate carriers’ sense of personhood by never coercively taking babies away
  • Would this account condemn the use of a magic wand to treat an unwilling patient’s ailments without cutting his skin and so?
  • Would it also condemn threat of fines that coerces patients to move their bodies in certain ways, even without touching them?

When is informed consent necessary?

Robust informed consent that requires a great deal of information, voluntariness, and decisional capacity and is formalized and relatively non-waiveable, is necessary sometimes, but not always.  Roughly speaking, robust informed consent tends to be necessary:

  • the more risky the intervention,
  • the more it is a high-impact,
  • the more it is value-laden and controversial,
  • the more private the area of the body that the intervention directly affects,
  • and the more conflicted and unsupervised the practitioner.

On other occasions, the need for very robust informed consent, and indeed, for consent of any form, is lesser. On those occasions, high financial or other costs of robust consent procedures easily override that need.

Other points

Informed consent seems to be just a legal right rather than a natural right.

The very point of requiring informed consent, and hence what is fundamentally required and when, vary between domains.

Towards a theory for decisional capacity

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.

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. It is a moral failure if we say of someone who lacks decisional capacity that she has it, for then we fail to protect someone who genuinely cannot decide for herself. But it is also a serious moral failure to say of someone who has decisional capacity that she lacks it, for we then deprive someone of a very important moral power: the power to direct her own life through making her own decisions.

Elements of capacity

Most theorists seem to agree that it is necessary for a patient to have these 4 sub-capacities to be announced as having decisional capacity:

  • (Choice) The ability to express or communicate one’s choice
  • (Understanding) The understanding of the facts involved in that decision
  • (Appreciation) A genuinely belief that the information truly applies to them
  • (Reasoning) Consistency, the ability to derive conclusions from premises, to weigh risks and benefits and evaluate putative consequences

MacCAT-T

Expectations for a theory of decisional capacity

  • (Inclusivity) 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. In other words, as a society we are morally committed to imposing minimal restraints on individual choice
  • (Decision relativity) An individual’s decisional capacity should be assessed relative to a specific decision, at a particular time, in a particular context. Not all decisions require the same level of mental ability, and decisional capacity can vary within a single individual over time and in relation to what else is going on
  • (All-or-nothing assessment) For practical purposes, a ruling on capacity must be all-or-nothing: either the patient in question has decisional capacity or she lacks it
  • (Value neutrality) A patient cannot be declared incompetent simply on the basis of her (perhaps unusual) values. Individuals are free to pursue their own idiosyncratic and at times unpopular values
  • (Independence from diagnosis) Similarly, a patient cannot be declared incompetent simply on the basis of her diagnosis
  • (Asymmetrical choice) An individual could sometimes be competent to consent to a treatment that she is not competent to refuse. The risks respectively associated with consenting to or refusing treatment are not always the same

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.

Values & Authenticity:

Anorexia nervosa patients: 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.

  • 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
  • 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.

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)

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

Further reading

Personal Autonomy (Stanford Encyclopedia of Philosophy)

Domination (Stanford Encyclopedia of Philosophy)

Paternalism (Stanford Encyclopedia of Philosophy)

The Ethics of Manipulation (Stanford Encyclopedia of Philosophy)