Children Bioethics and the question of normality: The cases of behavioral and cognitive disorders through pharmaceutical treatment

Εισήγηση που παρουσιάστηκε στο Διεθνές Συνέδριο 12th World Conference on Bioethics, Medical Ethics and Health Law που διοργανώθηκε από την UNESCO Chair in Bioethics στη Λεμεσό της Κύπρου το 2017

A recent BBC article suggests that faking feeling, especially of understanding and compassion, might be good for one’s career . As a proposal, the claim is that being insincere, displaying feelings you don’t actually have, might be good for your professional or overall social life.

The article’s very first example involves a doctor, who claims that she often does not feel compassionate towards her patients, particularly those whose health conditions are the result of their particular lifestyle (e.g. as a result of a bad diet, alcohol or heavy smoking). But, says the doctor, by acting as if she cared, she actually gets better results from her patients, who consequently feel more comfortable and become more open to advice. This, says the doctor, is a big advantage for the overall therapeutic outcome.

The issue here is not only whether faking it, even in the name of science, is bad or immoral. It is rather that one would expect a doctor to be compassionate or caring in the first place, because compassionate attitude is part of what it is to be a doctor. From this perspective, telling a doctor to pretend to care more than he actually does, perhaps for the patient’s own good, is not to tell him to do something extra. In fact, not only is it part of what it is to be a doctor, it is also an attitude prescribed by the Hippocratic oath: the 4th clause of the modern version of the Hippocratic oath states ‘I will remember that there is art to medicine as well as science, and that warmth, sympathy, and understanding may outweigh the surgeon’s knife or the chemist’s drug’.

There are various take away lessons from the story. It highlights, for instance, the importance of mediation and an overall need for a more humane medicine. However, what I would like to focus upon is the above story as the need to pinpoint a more comprehensive and mostly human approach to the issue. By a more humane approach I mean an approach that does not involve just going through the various steps of medical methodology as if one were following a manual. In fact, what I would like to discuss is exactly that: the sympathy and warmth that outweigh the surgeon’s knife, but most importantly, the chemist’s drug.

At the basis of all this we need to appreciate the fact that a patient is a human being. An appreciation of the difference creates an obligation to keep in mind that any patient is primarily a human being and needs to be approached as such. As a patient, a human being is moreover at its most fragile state. A patient is not merely a vessel that contains a disease or injury which needs to be repaired or resolved like a problem. If, on the other hand, problem-solving remains the only priority, then understanding and compassion will always be extrinsic factors, and in some cases, might even be completely absent.

We can transfer this thought to children. One of the most basic issues in all our interactions with children, for instance as parents and as educators, is that we often forget that children will not only behave like children but also that they need to behave like children. Their behavior, even the aspects that adults have difficulties handling, represent ways in which children discover the world but also themselves within it. But according to a time-honored perspective, children also need to familiarize themselves with the art of being organized, of sitting still for extended periods of time, of concentrating on one task, of developing their own study and mnemonic techniques, of acquiring a personal sense of discipline.

All these debates, along with a host of bioethical issues, such as medicating children with behavior modifying drugs, the need to consider cultural differences in behavior and what exactly we mean by ‘normal’ when we talk about non-normal behavior come to a head with the issue of ADHD. ADHD is the most common neurobehavioral disorder in children characterized by difficulty in concentrating, focusing and remembering and affects academic achievement, well-being, social interaction of children.

In presenting my thoughts to you I do not wish to discredit medical or scientific research, or to be dismissive of the positive impact on people’s lives. My aim is to introduce additional perspectives to a phenomenon which for a number of different reasons has a tendency to be viewed in a narrow way. Just as in the previous example in which the doctor’s compassion is thought to be external, I would like to express that a broader perspective includes more integral factors to our discussion. My claim is that looking at the bigger picture (i.e., one that includes the non-medical dimension of a medical issue) is not simply looking at some external factors. On the contrary, I believe that the true nature of the phenomenon includes what bioethics has taught us that medicine and science do not happen in a vacuum.

There are very strong arguments in favor of putting children (or adults) with ADHD on medication because there are cases in which drugs like Retalin are the only thing that work. There is no doubt that there are extreme cases of ADHD that require systematic medical attention with an emphasis on medication. Furthermore, providing such people with proper medication prevents them from self-medicating and trying to calm their minds and bodies with substances that are not only addictive but also have serious health consequences (excessive caffeine, alcohol, cocaine). But that only leaves the debate open as to what we should do with the less extreme cases and whether it is right to treat the less extreme cases in the same way. The problem becomes even more acute if we take into account that concept changes and shifts have a direct impact on conditions like ADHD. As is the case with other conditions affecting behavior, these concept changes and shifts, which often come from the broader social context, may play a decisive role on whether something is seen as a condition or disease in the first place.

There is no way to physically determine the existence of ADHD, there are no scans that prove beyond reasonable doubt its existence. Furthermore, what are regarded as symptoms of ADHD are behaviors which if present to a lesser degree would not even qualify as a condition. The line between ADHD and the sort of behavior that we might find problematic but not significant enough to merit medical attention is thin.

This diagnostic difficulty is reflected in its history, which also reflects differences in attitudes as to how it should be treated. For instance, before 1902 it was believed that children who would now be diagnosed with ADHD ‘merely required training or discipline’ . Later, in the 30s, Benzedrine was used to treat hyperactive children but only those who were hospitalized . Today however, we appear much more confident in both the diagnosis and the cure for ADHD. Children with ADHD are given powerful drugs, often as a legal requirement set by schools to which parents must conform if they want to avoid prosecution.
Many of the drugs are still under investigation and there is no clear picture of the long-term effects of their uses or abuses. Recent studies, for example, showed that though small doses of Ritalin , the drug predominantly associated with ADHD, may boost cognitive performance for children with ADHD, larger doses impaired their performance by affecting memory. As millions of children and increasingly adults take the drug, finding the right spot on the dosage curve is crucial, as Luis Populin, a neuroscience expert at the University of Wisconsin- Madison has claimed . Furthermore, research has focused on how drugs like Retalin affect the prefrontal cortex in order to treat more effectively ADHD patients. But there are also indications that if the compounds for treating ADHD act outside the cortex, they can be potentially addictive .

This, on its own, makes the issue of administering the drug to children even more serious and raises a host of bioethical issues. In the mid-1990 in the US, for example, as more and more children took methylphenidate, the issue became the focal point of an intense debate which included doubts about whether ADHD was a genuine medical disorder. Today, books such as Alan Schwarz’s ADHD Nation, which addressed the fact that though 5% of children in the US suffer from ADHD, the diagnosis is given to 15% of children, are indications that the debate is far from over . They are also indications that the debate is two-fold in an almost paradoxical way: on the one hand, we see intra-medical discussions about issues such as dosage and on the other discussions about whether the condition itself exists!

The tendency to seek medical solutions or to put our trust in exclusively medical approaches is recent. It is tempting to see the history of medicine as a history of progress towards more effective therapeutic treatments, of more diseases being cured, of people living better and longer. There is of course something undeniably true about this and many of us would not be here if medicine and science had not progressed. But throughout the years, the possibility of administering a drug that would take care of the problem, along with technology, has also led to a reduction in the personal care and attention towards patients. If drugs do all the work, what need is there for the human factor? We see this in everyday life as well. The excessive use of antibiotics in many countries is not only linked to an excessive worry about one’s health, but to a need to recover as quickly as possible either because people cannot afford to be off work or because there is no one else to take care of them. The way we live does not allow us to be ill, because being ill is time and attention consuming.

The relationship between medication and social factors, such as free time or the school structure, were part of a heated debate in the United Kingdom in the 2000’s. As teacher responsibilities focused almost exclusively on teaching instead of a broader pedagogical approach, while youth psychiatric services were non-existent, troublesome pupils were simply expelled and sent to schools that eventually ended up with the worst students. In some cases, such students might end up not receiving any education at all. What is important here is not only that teachers were spending less time with students and that support services were being terminated, but also that many of these pupils came from troubled homes.

Then Ritalin made its appearance (it had already done so in the US) and many believed that it had beneficial effects. But the beneficial effects only started appearing together with a further initiative by the state, which became more involved in ‘parenting duties’ to make up for the lack of attention at home, especially in poor neighborhoods. After-school activities were introduced to allow children to spend more time away from troubled homes, teachers were trained on practical techniques of maintaining order in class and also support units with psychologists were introduced once again in schools . The move represents a step away from the above tendency on the part of teachers to choose substances such as Retalin as a quick solution instead of a more complex and slow approach.

But there is another issue that comes through in the story. This concerns the difference between children (or adults) that are clearly in need of medication because nothing else works and children (or adults) for whom medication is not the only solution. The latter category represents individuals who would clearly benefit from a combination of medication, behavioral therapy or a variety of approaches that require time, patience and imagination. The question here is whether most people would believe that there are strong reasons not to use the quick solution of medication. Because once medication establishes itself as the new normal, it becomes increasingly difficult to argue in favor of all the other approaches. The burden of proof suddenly shifts to those advocating a non-medical approach.

The idea of a quick fix to the problem, especially under pressure of time or a need to boost academic performance, is also a recipe for abuse . Who wouldn’t choose the easy solution if it were within hand’s reach? It is a well-known fact that some of the substances used to treat ADHD are also used by students to attain extra focus and endurance during exam revision. In some cases, the results are impressive and many students report a substantial increase in their ability to concentrate during revision and higher grades and overall academic performance. Gaining access to the medication in some case may involve merely pretending to suffer from ADHD symptoms in order to get the doctor to prescribe it. The ability to gain easy access to medication by faking the symptoms can be seen as a further indication of the ease with which such medication is prescribed .

Furthermore, the ability to enhance one’s performance in such a way raises a whole new range of further ethical issues about unfair advantage, many of which have been hotly debated in bioethics under the general heading of doping. In doping the issue is not only the health impact, or the debasement of the sports ideal. It is also the competition created within sports to come up with new and effective ways to enhance performance. Within such a context, how would an athlete who refuses to take performance enhancing drugs survive? Similarly, one can easily see a scenario in which parents give their children medication knowing that if they do not, their children will be at a disadvantage. Once behavior-modifying medication is no longer limited to extreme cases but has a broader use, one can easily imagine a situation in which the drugs are no longer used to treat symptoms that cause learning difficulties but are instead used to enhance learning itself.

The need for quick solutions and the ease with which medication can be obtained could lead to disaster. This was the case in Scotland were, according to a survey, Ritalin was handed out in extra doses to troublesome children by non-specialized staff like school secretaries. Parents were threatened with expulsion of their children if they did not put their children on the drug. Ritalin was so broadly used that some children even sold their pills to drug dealers or swapped them for CDs and phone cards. Others, such as teenage girls, were reported to be taking the drug as a diet pill . In other countries, such as the US, parents can even be prosecuted for not administering the drug to their children.

Administering powerful behavior modifying drugs to children remains a contentious issue. One aspect has to do with the fact that in many cases medication is issued by adults who are unable to accept the fact that children will behave like children. This is not always a matter of choice. Many adults today lead lives that do not seem to allow any room for childhood to blossom. Yet one would think that this achieves the opposite result of the intended one. The whole point of what we call ‘learning to behave’ or ‘becoming organized’ or ‘learning how to study effectively’ is for children to realize why these are valuable attitudes and to discover the reasons why we value them.

Moreover, another important dimension is the unnecessary medication provided to enforce behavior in the field of education like self-control, respect for others, the ability to concentrate that we have always believed were a fundamental part of the process of education. To see these characteristics as a horizon for constant improvement, personal effort and achievement is very different to seeing these characteristics from a medical perspective, as results that have to be obtained through chemistry as opposed to self-awareness. The whole point in achieving these attitudes is for someone to go through the process themselves. The idea that proper or normal behavior has to be achieved in a classroom through medication so that the business of teaching can continue uninterrupted is a hopelessly misguided picture of the educational process.

A different approach is required not only in the classroom but on general terms. Even when ADHD is in fact treated with drugs, there is a whole range of additional or complementary actions that are necessary for an effective therapeutic process. These include monitoring the medication, behavioral interventions, coaching, support groups and participation in addiction recovery programs. . Other actions are not so obvious but are equally the result of the attention and imagination required for a therapeutic process to be effective. For instance, Dr. Beth Tarini, a pediatrician and associate professor at the University of Michigan, has undertaken research to determine the extent to which sports, like Tae Kwon Do, alleviate the symptoms allowing people suffering from ADHD to have greater concentration and increased memory. This research, according to Dr. Tarini, is not aimed at substituting pharmaceutical treatment, but as a way of making it more effective, reducing the dosage or, if possible, even gradually eliminating it.

Clearly, there are many debates on ADHD that do not concern medical aspects of the condition. Many of the debates concern the so called socially proscribed behaviors, norms and expectations . These are basically the sort of behaviors that one expects from others in particular circumstances as well as what we call ‘normal’ in everyday life such capabilities include not interrupting, finishing a task, being able to sit and focus over an extended period of time (e.g. if a presentation is going on) and so on. The Diagnostic and Statistical Manual-IV describes a child with ADHD in terms of difficulty organizing tasks, distracted by external stimuli, blurting out answers even before the questions have been completed.

What is interesting is that if we change the scientific language into more everyday language, it becomes obvious that this is how children actually behave. To make this clear, think of the opposite, as an experiment. Imagine a child that is super organized, never distracted by external stimuli, endlessly patient, perfectly disciplined with their body and mind. To a tired parent that might seem like an ideal child. But the idea of such a child is alienating and almost unrecognizable. This is not to say that the scientific language in which the symptoms are described is false or misleading. But I believe it is illuminating, even as a thought experiment, to attempt to translate, whenever possible, such language into ordinary language. Doing so can open up new possibilities and perspectives.

Conclusion

The diagnosis of ADHD is constantly rising. Does this mean that there is an epidemic? The rates of ADHD diagnosis increased 3% per year from 1997 to 2006 and 5% per year from 2003 to 2011 . Could this rise in number merely be that new concepts and ways of understanding the condition have revealed on previously undiagnosed cases? Or is it the case that what we call normal is becoming narrower by the day?

A number of experts and authors see drugs such as Ritalin as representative of the way we live and not as something that belongs primarily to the field of medical pathology . In the present context, it would not be possible to argue in favor or against the views expressed in these books. But I would claim that their opinion points out the need to maintain a broader perspective beyond the purely medical dimension. Behavior is tied up with norms which can be categorized into acceptable or non-acceptable. When dealing with disruptive behavior we must be aware of what standard for the term normal can be used and how to apply. Equally, we need to be aware of the demands that we as adults make on children, demands that arise from our own desires.

If, for example, there is evidence of over-diagnosis or that giving medication has been to a great extent influenced by profit, then this not only raises immense moral issues. but also a clear violation of another clause of the Hippocratic oath. According to the modern version of the oath used in many medical schools, the doctor swears that he/she will ‘apply, for the benefit of the sick, all measures which are required, avoiding a double edge sword of overtreatment and therapeutic nihilism’. Medication that alters behavior may potentially violate both, because when it is excessive it results in overtreatment and it is nihilistic when it ignores all other possibilities beyond the medical dimension.

Both experts and non-experts see no problem in administering behavior modifying drugs to children. One of the arguments that support this view is that without the drug, troublesome children would be expelled, would stay away from school and might even drift to poverty or crime. There are two possible objections here which I will merely indicate. Firstly, the argument presupposes that, beyond the extreme cases, we are already in a position to determine when medication is necessary and when it is not. But this distinction is not always obvious and is the reason why some authors talk about a rise in ‘medicalization’ and ‘disease mongering’ as pharmaceutical companies attempt to create broad markets for their products. This medicalization and disease mongering involves among other things convincing people that light ailments are in fact serious, that a whole range of personal problems are in fact medical problems and that they are at risk from serious and widespread diseases . Within this context, pharmaceutical companies may even organize conferences supposedly to raise awareness of particular ‘conditions’ which in fact are designed to promote products targeted at those who ‘suffer’ from the condition.

Secondly, such an argument presents a false dilemma between drugs and a failed life and also presents a choice between these two extremities. In so doing, it completely leaves out the middle ground of the work, patience, imagination and commitment that is required to work with children whose behavior is regarded as troublesome. We first need to think of the obvious fact that children will behave like children and that educators and parents have a responsibility to respond to this with tolerance and knowledge. We must also reflect on adults’ priorities which set for their own lives, such as professional advancement, the creation of automatic obligations upon children to behave in certain ways. If there is a standard for the word ‘normal’ this should take into account what normal means from the perspective of children, not adults.

If we look at the rising figures of behavior-modifying drugs, we could conclude that there is indeed an epidemic of conditions that make them necessary. We could even admit that there is, in fact, no sudden outbreak of conditions such as ADHD, but that previously undiagnosed cases can now be diagnosed and treated effectively. Yet the overall picture surrounding drugs such as Ritalin does not seem to point in that direction. On the contrary, it points in the urgent need to look at all the surrounding non-medical aspects, some of which I have outlined above.