The school nurse cannot give me – an adolescent girl- an aspirin for my headache without parental permission, but I have access to contraceptives without the same explicit permission. As long as they (physicians within the NHS) believe that I have “fully understand the information and decisions involved”. It is time to explore where and why these double standards within the English society and healthcare system have been placed, whether they are based on empirical evidence, why the law governing informed consent of adolescents is as it is, whether the said laws are fair and if not – what would neuroscientists, physicians, patients and legislators need to do in order to ensure that it is.
Adolescence is the period of time that is initiated by the biological, physical and hormonal changes of puberty. The World Health Organisation, would label any persons between the age of ten to nineteen as one. Although the end of adolescence and the start of adulthood, has caused discrepancies amongst scientists and psychologists; most would go on to claim that maturity, stability and an independent role in society are good, rough indications (which are by no means exhaustive).
Adolescents are associated with the most prominent health period in a society. And yet those living in the more developed regions of the world, are facing more risks than one would expect, which are at least in part due to the their (adolescent’s) own decisions. The science points to a common clash between physical maturity and the lagging mental maturity as a general explanation. This can be observed more prominently during the later stages of adolescence. To explore why herein lies the differences amongst adults compared to adolescents at a later stage of their respective development, we must focus on the organ which varies the most and controls the most in the human anatomy.
Whilst the overall size and gross organisation of the brain is similar in adolescents and adults, the key changes in one’s ability to provide informed consent are more affected by the dynamic changes in brain structure, function, and features of neuromodulatory systems which are occurring throughout adolescence. Huttenlocher’s study of autopsied brains confirmed by structural magnetic resonance imaging (MRI), have revealed significant decline in grey matter volume of the prefrontal cortex after the peak volume in early adolescence. Grey matter includes cell bodies and connections ‘synapses’ and the prefrontal cortex which are involved in high level cognitive functions. These functions would include but are not limited to decision making (which is the basis of consent), planning, inhibiting ‘bad’ behaviour, social interaction and self-awareness (which is mirrored by the issues of identity many adolescents face in this ambiguous period since they are unclear of their role within society).
The reduction in volume of grey matter, reflects experience-dependent pruning. The purpose of which is to remove unnecessary neuronal structures. This adaptation has come about due to the need to understand more complex structures the closer one gets to adulthood. Which also means that the simpler associations, need to be replaced by more complex structures. Connections which are being stimulated the most, are being strengthened the most as well. It is plausible to correlate the ever growing complexities of modern life, as a stimulus for this adaptation throughout history.
The consensus of most of the literature in the field, points specifically to the lagged structural development of the dorsolateral prefrontal cortex (DLPFC). The DLPFC is involved in risky and moral decision making. It is activated when the costs and benefits of alternative choices are weighed up against each other. And by suppressing the temptation to maximise personal gains, it tips the scale towards the most impartial and fair option. The DLPFC and the prefrontal cortex generally speaking, have been linked to impulse control, working memory and complex reasoning. These are all functions which could constrain the components of medical consent to the rate of development of the DLPFC.
On the other hand, what the adolescent brain lacks in prefrontal cortex growth, it makes up for by adolescent-specific peaks in certain properties of dopaminergic signaling. Proliferation of D1 and D2 receptors in various targets within the mesolimbic dopamine system, is combined with peak tissue concentration of dopamine, which exaggerates adolescents’ responses to different types of rewards. D1 and D2 receptors assist learning prompted by reward and punishment. These receptors are associated with the willingness to take higher risks demonstrated in the adolescent population.
A meta-analysis undertaken by Defoe and colleagues, concluded higher rates of risks in adolescents compared to adults. The difference amongst the two subjects where even more exaggerated if the experiment involved an immediate gain or loss feedback system or a scenario in which risk should have been learned through trial and error. The same study however, revealed equal levels of overall risky choice. What separated the two different types of subjects, were specific situations. This research has the potential to be implemented medically. The boundary amongst what each specific situation is however, would prove difficult to define.
It would be beneficial to note that these distinctions could have stemmed from an impoverished repertoire of past experiences compared to adults. This might as well explain why humans and other mammalian models of adolescence, show vertiginous increase in novelty seeking and exploratory behaviour rates (in an attempt to enrich their repertoire). This keen attitude entails within it, a high tolerance to uncertain outcomes. But no matter how malleable the adolescents’ brains are or how high their level of open-mindedness is compared to adults, neither can be used as a prevention method against one of the strongest weaknesses used over and over again in legal cases: the adolescent brain ‘discounts’ long-term benefits over shorter or almost instantaneous ones.
Throughout adolescence, these ‘discounts’ steadily decrease. The decrease takes the shape of an asymptote in early adulthood. Which is most likely caused by the increased responsibility levels placed on adolescents becoming independent from their parents. As well as questioning whether adolescents should and could ever have full authoritative choice, these neuroeconomics findings, point to another underlying trend in human cognitive development too. Whilst most of our development can be said to take place linearly and gradually, some – just like the phenomena of ‘discounting’ – have a more of an unpredictable rate of maturity.
Certain connectivities in the brain not maturing linearly, is not the only aspect we have to take into account when looking at neuroscience findings on the topic. As children grow up, they do not only develop cognitively as discussed, but also in terms of emotions and their values. Studies have shown that the mere effect of a peer watching, increases the chances of an adolescent speeding through a yellow light compared to no effect in the adults tested. Even rodents are more likely to consume alcohol in company of their peers than alone. All of the empirical evidence so far, can not identify the underlying procedure for the decisions take place. Presumably since it would be limited by the test subjects’ ability to enunciate their thoughts. As well as them not being able to justify why a social context i.e. the presence of a peer, entails an ought to act a certain way for them. Regardless, further research is needed to explore the internal computations of the brain in different contexts.
One could conclude that the decision making process for adolescents is unique. The asymmetry in development, has led to an amplification in learning from direct experience, reward reactivity, tolerance of ambiguity and context driven situations. However prospective evaluation and integration of negative and positive feedback systems are yet to reach adult levels. And whilst there are many nonlinear functional developmental trajectories within some regions of the brain utilised for decision making, it seems adolescents’ decisions are only as good as their subcortical and cortical interactions are. The responsibility of these regions for setting abstract goals, distal outcomes and complex cost-benefit calculations are not to be undermined.
In order to assess how these changes in the brain affect one’s ability to provide informed consent, we shall focus on what the requirements for informed consent are.
Informed consent within a medical setting, involves three key components:
- The patient has capacity to consent
- Adequate relevant information has been received by the patient (NB this is not necessarily interchangeable with adequate relevant information being given by the physician)
- Consent has been given voluntarily and free of coercion
All three are necessary and jointly sufficient conditions. Meaning that a factor which weakens either component will weaken the autonomy of the patient in regards to their treatment.
Capacity is perhaps the component that first comes to mind when discussing consent. It relates to a specific decision about a specific course of treatment, situation and conditions. I.e. a patient could be competent to decide what type of painkiller they would like if presented with the side effects but not competent enough to amputate a limb if they suffer from body dysmorphia.
This capacity is derived from normative and evaluative values. Which would require the healthcare professional to make a judgement based on an assessment and relating to an extent to norms of medical practice and society. It is not absolutely normative in the sense that the patient could have authoritative choice even if the said choice is not ‘correct’ within the standards of their society/ setting. A competent decision maker instead, should be able to choose what is best for them according to their own value system.
A patient will not be able to see which course of action most meets their own personal values if they are not aware of what each route is comprised of. The adequate information thus should include risks and benefits of all alternative routes. Just as I cannot first make the decision for you and then feed you information which logically would correspond with the course of action I would have chosen for you anyways; a doctor is said to be respecting the personhood of the patient if they provide all of the information available. It is the role of the physician to facilitate understanding and appreciation. This should in turn maximise autonomy and wellbeing. The two might seem contradictory in specific examples. Perhaps letting a patient with low morale know that they are suffering from Pilocytic Astrocytoma rather than Glioblastoma, might motivate them more to keep fighting. But the crucial element of lying will arguably never be outweighed by the benefits of concealing relevant information. By concealing or giving subconsciously angled views, you are simply treating the patient as a means to meet your ends. It would feel as though the medical professional has disregarded the values of the patient since they do not fit in with theirs personally. Legally speaking, patients have the right to know about their health, all available diagnostics, treatment options and choosing between alternatives.
The skill of disclosing information without necessarily disclosing your own personal views, leads us to the most neglected aspect of informed consent: voluntariness. This is due to its nature being hard to conceptualise. Regardless, consent should be attained without coercion or manipulation. For no human comes from the same background as another. It might be helpful to explore the many cases of adolescent Jehovah’s witnesses whom refused crucial blood transfusions in America. One could argue that these highly religious members of society, are entrapped within their views of the world which was bestowed upon them by their parents. So is the blood transfusion refusal a result of them exercising their autonomy or simply complying with what they have been brought up to think is ‘correct’. Surely in this scenario, the adolescent has been socially conditioned to hold certain values in life just as the rest of us have come to gain values from education, personal experience and so on. The subjective nature of these values makes the judgement of competency and autonomy even harder.
The values of the individual, is not the only factor which is very subjective and so has led to vagueness of the definition. ‘Capacity’, ‘adequate’, ‘voluntarily’ and ‘freely’ are all relatively vague criteria which need to be standardised.
The vagueness of the criteria of informed consent however, are not the biggest issue with authoritative choice. It is a question of who has decisive power in the case of disagreement. This usually takes the form of the adolescent patient disagreeing with their caregiver. This is often due to the law recognising minors (those under the age of eighteen), as the responsibility of their parents rather than accountable for their own choices. A famous example of this which has now set the guidelines for working with adolescents in the NHS, is the Gillick case.
In the Gillick case the lower court decision was challenged by the mother of a child below the age of 16, whose doctor had given advice on the use of contraceptives against the mother’s wish. The decision was overruled by the court of appeal and became a threshold for consent and confidentiality for adolescents, who by definition had reached the age of 16. Whether or not a child is capable of giving the “necessary consent will depend on the child’s maturity and understanding and the nature of the consent required. The child must be capable of making a reasonable assessment of the advantages and disadvantages of the treatment proposed, so the consent, if given, can be properly and fairly described as true consent”.
Gillick competence relates to a child’s capacity to consent to some treatments but not others. This is due to different levels of understanding being required by different interventions as well as fluctuating capacity which can come about due to a mental illness. In the English health system, if the adolescent is not Gillick competent, they only have the ability to assent and dissent. Assent and dissent are mere expressions of opinions which do not ethically or medically bind the physician. That is not to say that there are still no cases of Gillick competent adolescents being treated against their will.
In addition, a specific set of guidelines which focus only on contraception and sexual health, were addressed by one of the Lords in charge of the Gillick case judgement. The Fraser guidelines conclude that advice should be given as long as the patient is mature and intelligent enough to understand the nature and implications of the treatment chosen, cannot be persuaded to share with their parents, is likely to begin or continue sexual intercourse without contraceptive treatment, their mental health is likely to suffer should they not receive the treatment and that ultimately the advice and or treatment is in the young person’s best interests.
Legally speaking, it is illegal for a doctor to treat a child without the ‘flak jacket’ of consent. This can be provided by any of the following ways.
Under the Family Law Reform Act 1969, a child aged 16 or 17 can consent to treatment. This consent is to be treated the same way as an adult’s. However the list of treatments which this ‘flak jacket’ might be permissible for, is not fully extensive.
As mentioned before, a Gillick competent child can consent to a procedure which is not considered treatment by the former clause. This competence is heavily reliant on the components required by the concept of informed consent as explored before. This would involve understanding the nature and implications of the treatment and not pursuing the treatment, having the ability to retain the information for long enough for an effective decision making to take place and finally having the ability both in intelligence and maturity, to weigh up the information and arrive at a conclusion. This is the function that is often constrained by the rate of development of the dorsolateral prefrontal cortex.
A person with parental responsibility can consent on behalf of their child.
Under the Children Act 1989, the court can decide on whether a treatment can be given or not. The court will seek to best promote the welfare of the child. Although this is yet another one of the ambiguous criterion expressed in the literature of the topic. An aspect of the child’s welfare surely is their autonomy. But it can be argued that this is not the only aspect.
In case of urgent need for medical care, the treatment may be preformed without the protection of a court order or parental consent. This is in case of life-saving treatment even if the parent objects against the physicians’ choice.
But the ‘flak jacket’ itself, is considered paternalistic. It reduces child rights and autonomy to protecting the medical profession. The law still seems to dismiss Gillick competency whereas promoting the welfare of the child takes outmost priority.
Considered a great victory for adolescents’ rights at the time, the Gillick and Fraser guidelines seem to have faced difficulties in practice. Complexity of the law related to an adolescent’s capacity to make health care decisions reflects the tension between society’s recognition of the growing autonomy of adolescents’ and its interest in protecting adolescents from making decisions they may later regret. This links back to the adolescent brain discounting often higher value outcomes that will take place over a long period over relatively more instantaneous ones.
What makes gaining authority for adolescents hard, is rooted at least in parts due to their relative physical, emotional and financial dependence on their caregivers. The prominent health associated with most adolescents, has lead to inexperience with pain, disease, medicine and making more complex choices. In a period of time where learning levels elicited from reward/ punishment and experience peaks, adolescents who are regular visitors to the hospital can identify more risks and benefits of a treatment than an average healthy adult. These findings show the potential for adolescent understanding which has been questioned in the past.
Most clinical neuroscientists remark that the average adolescent understands more than expected. So the potential to understand beyond what the age restrictive laws dictate, is there.
The NHS should seek to disclose the information in an age and developmentally appropriate manner. Focus should be placed on discussions with a physician rather than stand alone reading.
Whilst there is no ‘gold’ standard for testing competence, Dr Kievit of University of Cambridge who is undertaking research in neurodevelopmental changes in executive functions, suggests a standardised method of asking questions to check understanding for them to be ‘informed’. This is because there is not a single general cognitive test that could apply to adolescent consent. Furthermore age boundaries are hard to establish since development specially cognitively speaking develops at different rates and in different ways. The current empirical evidence seem to indicate the need for expanding even the relatively long period of nine years one would normally associate with adolescence. Current thinking is that adolescence lasts until approximately the age of 24. Which is not in tandem with the legal age for marriage, alcohol consumption or being treated as fully autonomous unless there is something anomalous about your case which triggers your physicians to question your ability to consent. It is time to emphasise that whilst the guidelines in place, have been inspired at least in parts by different empirical evidence, many rules are in place out of convenience. For most of us would agree that waking up on your eighteenth birthday probably does not cognitively or psychologically feel much more different than when your are seventeen or even sixteen. But consent has to be given in the latter two cases whereas it is only taken away when necessary once you are of age.
Rather than a binary approach to consent, it seems as though the specific nature of different medical choice, runs the NHS into different shades of grey territory. Where consent in its truest sense, might be unachievable to many adolescents due to the paternalistic aspect of the ‘flak jacket’ which reduces the autonomy of the patients as a result. Regardless the maximum decision making abilities of each patient should be encouraged. Even if this takes the shape of assent rather than informed consent. Whilst cognitively speaking adolescents lag behind adults; which in turn leads to developmentally specific psychosocial tendencies, the current limited research points to a higher than anticipated capacity and aptitude to consent. It seems that as our lifestyles gain more complexity, the adolescents become more fine tuned to pick up skills in life which will aid them in dealing with these aspects.
In a society intertwined with double standards of expectations from adolescents, we must re-evaluate our attitudes and seek to debunk myths. One can see the application of adolescence and our ability to make decisions, beyond the scope of medicine and ethics. When we question whether the voting age should be lowered, we are asking a parallel question about decision making which involves different factors of consideration but one which would very much run a similar course of argument as the one discussed medically. The NHS must focus on adolescents as much the other end of the spectrum. Training adolescents to become the primary guardians of personal health, places less strain on all the systems in the future. Guiding adolescents to make their own decisions in a serious situation, will undoubtedly reflect in politics, education and social interactions in the long term. But in order to achieve this, more research which compare longer age ranges within adolescence, as well as examining the effect of social context should be done.