In depth: The rational patient

31 Oct

If we are autonomous as people, then it follows that we’re going to make what we consider to be ‘good decisions’. We’re going to make those about our daily lives, our actions, and our healthcare. But does a good decision always have to be a rational one?

If you can’t illustrate a concept visually, use a monkey.

A good decision is the making of a value judgement- the Oxford English Dictionary defines a value judgement to be “an assessment of something as good or bad in terms of one’s standards or priorities”. It stands to reason that the inherent goodness of something can only be judged subjectively, reliant upon what the evaluator considers goodness to be. I would posit that any collective or societal understanding of goodness must be based in generally accepted social mores and principles of behaviour (yeah, it’s one of those posts). For instance, in a medical and health science environment I think I’m safe in suggesting that it would be considered ‘good’, or at least desirable, to follow the principle of beneficence and to work in favour of restoring or improving a patient’s health (unless it has been determined that this is contra to the patient’s best interests, but that’s a  very different discussion). However, where you are making a decision for yourself, the subjective nature of goodness dictates that you can only make a truly good decision within your own self-perceived parameters- which is where the concept of rationality becomes vitally important to the equation.

Understanding the decision is a prerequisite if you are going to make the choice you consider most ‘good’, and it is this idea which frames physicians’ approaches to informing their patients. The notion has been summed up by one practitioner as follows: “[t]he decision must be informed… The patient should have some sense of the pros and cons of the decision in question, alternate options, and the ramifications of not choosing… it is helpful if the patient has some degree of self-knowledge, allowing her to know the level of risk with which she is comfortable.”

This viewpoint is validated by the statement that “the uninformed selection of an option that has a good outcome is luck, not a good decision”. The key point here is that there is a differentiation between a ‘good decision’ and the making of a choice in general, regardless of outcome; a distinction which perforce implies that- as far as societal value is concerned- a decision without basisis less valid.

Why does this even exist?

Nobody discounts fingerpuppet Kant!

If I discount the idea of the Kantian heteronomy and instead maintain the idea that a practicable autonomy is “the possession of self-government”, then this means that that if the above implication is true, then a decision made without an informed basis can neither be considered ‘good’ nor autonomous– as an invalid decision cannot be thought to be governed by any recognisable process. In choosing an option without a basis for doing so, you relinquish government over the self, and are consequently not  acting with autonomy.

The connection between an informed basis for a decision and making that decision within one’s own subjective interpretation of goodness is a question of rationality, the “capacity to reason” or to “…form judgements logically”. It’s the method by which we derive conclusions- this post, for instance, is an elucidation of a rationale. In the context of interest in genetic self-knowledge I might hold that rational thought is a method of optimisation, as suggested by Mosterín, by which a subject may make the choice which benefits them the most.

In broad terms, should patient X feel that being in possession of such knowledge has too many potential negative impacts on their life and/or health, they may rationalise that it would be more beneficial for them to refuse to be given the information. This decision would fulfil the criterion of being good, as it is calculated to be advantageous in the pursuit of X’s wellbeing- assuming that X subscribes to the aforementioned societal sentiment that improved wellbeing is ‘good’.

In this way, you could equate rationality with a coherence of logic within a person’s own beliefs and understandings. Although this isn’t the time to discuss competency, I would note that in a similar fashion here it is irrelevant whether these beliefs are considered false by an observer. It is perfectly possible to have rational beliefs founded on misperception, such as the well-known example of NHS Trust v T, wherein a patient refused treatment on the basis that she believed blood to be “evil”. Dworkin describes the idea that rationality is grounded in procedure over substance, giving rise to the concepts of first and second order desires: in the case at hand, Ms T’s refusal would potentially constitute the latter as the choice to avoid treatment was a conclusion  reached through reflection on the belief she held.

Probably not what she meant.

Rationality, then, can be linked directly to our concept of what makes a decision good, and indeed is an essential part of the manner in which we are able to formulate our own subjective understandings of goodness. By applying a consistent viewpoint without any conflicts, we make a value judgement on a given choice and thereby make our decision. As noted, whether this choice might be thought of as being ‘wrong’ or ‘right’ has no bearing on its inherent goodness, though it follows to suggest that in a person whose beliefs are generally in line with those of society at large, a good decision will be likely to be a ‘right’ one. In making this judgement, therefore, we exercise self-determinism; which we have already noted to be the practice of autonomy.

The ethicist Juha Räikkä has suggested that the choice to act upon an interest in knowing or not knowing genetic information about oneself is a case of self-determinant autonomy, claiming that “[i]f in normal circumstances there is no justified objections against having… genetic information… then there is a prima facie right to have genetic information… on the basis of a right to self-determination. Similarly, if in normal circumstances there is no justified objections against not having… genetic information… one can defend a right not to have genetic information.” If we take this to be true, by reflecting upon the manner in which such information is determined about a patient- i.e. by various forms of genetic testing- we might be able to equate this desire or refusal to know with a desire or refusal to undergo more directly therapeutic procedures, assuming mental capacity.

In the UK, the Mental Capacity Act 2005 protects our right to control the treatment we receive, and equally it might be interpreted to extend the same protection to our right to control what we learn of our genetic information. This view is justifiable if we consider that the possession of such knowledge, or the lack thereof, infers both potential risks and potential benefits, much as would the undertaking of any medical treatment procedure. If the subject is aware of the relevant information regarding these risks and benefits and is able to understand them, much as a patient is made aware by clinicians of the risks of a procedure, then they stand capable of making a good decision by virtue of the standards I have previously discussed- a qualitatively good decision only being possible with a basis grounded in the facts of the situation. The possession of this information then allows us to apply our rational thought in order to come to  an optimal conclusion in line with our second order desires.

To understand how we might need to apply this rationality to a decision and whether it therefore qualifies as a condition of autonomy in making that decision, it is beneficial to consider the interests which could inform one’s rationale. I’ll do this through the lens of genetic self-knowledge (my position on which I have previously ranted at length about here, so in this instance I’m playing devil’s advocate).

For instance, predictive or pre-symptomatic genetic testing allows the identification of allele mutations in sequences which are known to be related to genetically inherited disorders. If a known aberrance is found, it is possible to apply statistical knowledge to the case.  To take an oft-discussed example, a female patient found to possess a mutation in the DNA-binding BRCA1 gene, which codes for a protein involved in repair and transcriptional regulation, has around a 60% chance of developing a form of breast cancer, and a 55% chance of an ovarian cancer. Possession of this knowledge about oneself would be, superficially, beneficial- it would give the patient prior warning that there is a high risk of such a disorder developing in the future.

No.

This in turn would allow the patient to look into and potentially embark upon preventative strategies to lower this chance, such as prophylactic mastectomy/ oophorectomy or chemoprevention via selective oestrogen receptor modulators. While these treatments carry their own risks, the decisions regarding their use would not be open to the patient  without the genetic self-knowledge.

More presidents should wear do-rags.

On the other hand, there are a variety of factors which could be construed as making possession of this information into a disadvantage. One which has been widely discussed is particularly of relevance to patients in countries without a nationalised health system, where they are reliant upon their ability to pay for health insurance in order to cover any treatment. Given the vagaries of any branch of the insurance industry, it is reasonable to assume that premiums will rise with the perceived likelihood that the company will have to pay out on your behalf. Though this eventuality is  yet to be proven, in the USA the assumption has led to many avoiding testing altogether, or undertaking preventative therapies on an off-chance rather than risk being labelled as an insurance liability. People who have made this choice have demonstrably applied rational thought, which I can illustrate by way of the BRCA1 example: if the desire to find out their likelihood of developing cancer in the future is superseded by their second-order desire to maintain an affordable insurance premium, the subject may choose to forgo the testing. While an advocate of personalised medicine or a clinician may advise the subject to be tested or screened for the mutation in order that prophylaxis may be undertaken if warranted, the subject has made a self-determinant choice about their actions on the basis of their belief about insurance discrimination and their desire to be able to maintain coverage for the sake of their future health. Had this choice been made without consideration of this desire then whatever the outcome, it would have been baseless and therefore determinant not of the self but of the vagaries of random chance; much as we would hold “the uninformed selection of an option that has a good outcome [to be] luck, not a good decision”.

There are also more psychological considerations which potentially could be of sufficient detriment to your wellbeing that you might choose not to know genetic information about ourselves. One is a question of anxiety and fear, and the choice to avoid these is defensible on the grounds of non-maleficence. With the knowledge that one has a high percentage probability of developing a potentially fatal or life-altering disorder, prognosticating the worst is likely, and may lead a subject to restrict their life and horizons. For instance, you may fear to enter relationships; become depressed; or fail to see a reason to care for yourself or others, on the basis that death is preordained. Sure, this is hyperbolic, but it’s a useful construct for illustrating the morbidity which one may choose to avoid by refusing such self-knowledge.

The wish to avoid such a state of mind would be a second-order desire based upon reflection on the consequences of knowing your likelihood of illness, and making a choice in line with this wish would again constitute one which could be interpreted as ‘good’.

This latter concept could form the basis of a more complex problem of autonomy and rationality. Although a patient may wish to avoid the possibility of increased lifelong anxiety over the knowledge of a high likelihood of developing a disorder, which I have established to be a (potentially) rational desire, they may have further interests which would be benefited by possessing such knowledge. For instance, a latent confirmed carrier of the mutation responsible for Huntington’s chorea may have feared having the certain knowledge which the screening brought (carriers having a statistical increase in suicide rate after confirmation), but chose to be tested anyway. This would be irrational if avoidance of this anxiety were the subject’s only desire, but their decision may have been guided by the rationalisation that they did not wish to risk passing on the mutation to any offspring.

Being an autosomal dominant mutation renders the basic chance of inheritance as 50% in  a carrier-non carrier cross, and as the disorder does not become active until around 40 years of age, the subject is likely to have reproduced while latent. Consequently the only way to avoid this risk is to undergo testing and, if a carrier, avoid reproducing altogether. It makes sense that this eventuality might be more important to our subject than their personal psychological wellbeing, and as a result they may choose to undergo the test despite risking the realisation of their fear of knowing.

Whatever their decision, the subject has been able to rationalise two opposing choices from the information they have been provided about the possibilities. Ergo, whether the decision is to know or not to know, the choice is both good and self-determinant.

Autonomy, as “the possession of self-government”, requires us to make our own judgements and thereby to make decisions which benefit us as regards our own values. The examples I’ve outlined serve to demonstrate how rationality is inherent to the making of a decision which fulfils this: without it acting as a bridge between information and action, they are divorced entirely. Without rational thought, then, we cannot make a ‘good decision’ within our own subjective interpretation of what that may constitute. Therefore,the only possible way to be autonomous, and therefore to have the ability to make a good decision, is to make a rational one.

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