Ethical considerations in prescribing for children with special needs

Treating children and young people with special needs poses some challenging ethical issues: we reflect on examples of those that might arise, review how we take decisions and consider the potential pitfalls

The term 'special needs' may be a medical or an educational one and it covers everything from physical disability to chronic disease, and from learning and behavioural issues to psychiatric problems.

For the purposes of this article we concentrate mainly on children with difficulties in understanding or communication, as it is in these children that ethical and practical issues around prescribing are most likely to arise. However, many of the issues can be extrapolated back to all children with special needs as they have many threads in common.

MENTAL AGE

The concept of 'mental age' was once commonplace and is still beloved of the Press — but one cannot take a child and define a 'mental age' which such simplicity. A child may be strong in one area and weak in another, experienced in some matters and not in others. There is no typical child aged 12, or 14, or six, and to suggest that a young person of 18 with learning difficulties can be somehow equivalent to a child of ten without them is clearly nonsense.

KEY ISSUES

The issues around prescribing for and treating children with special needs usually involve one or more of the following areas:

• Autonomy
• Understanding
• Consent to treatment
• Refusal of treatment
• Decisions regarding best interests
• Confidentiality

Clearly these are similar issues to those arising in any young person for whom a prescription is being issued. So why discuss the matter separately at all?

The answer is that while it's true that these issues affect all children, children with special needs have a few added vulnerabilities:

• They are more likely to need medication, on average, than children without special needs
• They are more likely than other children to be prescribed drugs which alter the mood or psyche e.g. antipsychotics and stimulants.

Harm and good may be difficult to weigh as treatment may lack a specific evidence base.

• They are more likely than other children to be treated as 'passive' participants in their own consultation, or not to be addressed at all.
• It is more likely that communication issues will prevent you from ascertaining their ability to understand or consent, and also more likely that their special needs will affect your ability to negotiate with them in a way which would otherwise be appropriate to their age.

The usual cues of age and behavior may not give you easy clues to their level of understanding. Many communication issues results from the health professional being uncertain as to how, and on what level to, engage with the child e.g. some autistic children may have very little language, others may have sophisticated language but a lack of understanding of potential or 'alternative' consequences or have a communication style that seems hostile or disengaged.

• It is more likely that those looking after them will make assumptions about their right to consent to or refuse treatment.
• It is more likely that they feel helpless to influence decisions taken about their health care. Long habit may mean that they have never been invited to participate in decision-making regarding their health and have adopted a passive stance, which may need to be challenged.
• It is more likely that others will be present in confidential consultations resulting in health care that habitually lacks confidentiality even when confidentiality might have been observed.
• They may, because of their increased exposure to treatments, be more likely to refuse treatment.
• In some cases their life expectancy or quality of life will be considerably reduced. This will affect the decisions taken about them and by them.

COMPLICATING FACTORS

Off-license prescribing

Many medicines commonly used in children are not licensed for such use. Doctors and nurses have an obligation to explain to patients and their carers that a medication is being prescribed or recommended outside its licensed indication. If complications arise in off-license prescribing, the drug company cannot be held liable. This places an additional need for understanding on the situation.

Third party and best interests

When prescribing for a child there is usually a responsible adult present, and they will have opinions and needs, and a sense of ownership and of 'rights' regarding what options you suggest for the child.

CONSENT AND REFUSAL

Gillick competence

Gillick competence applies equally to young people with special needs as it does to those without. Gillick competency refers to the capacity of a person under 16 to consent to their own treatment. They can do so — and parents lose the right to make decisions for them — when they are capable of informed consent.

Beyond the age of 16 there is a presumption of the right to make decisions about treatment unless there is reason to think otherwise.

Refusal of treatment is slightly different. In this case the cut-off age is 18 years. If a person under the age of 18 refuses treatment, it is possible for their parents or the courts to overrule their decision. However, this can only be exercised on the basis that the welfare of the young person is paramount. This does not simply mean their physical health. The psychological effect of having the decision overruled would have to be taken into account and normally, would only be an option when the young person was thought likely to suffer 'grave and irreversible mental or physical harm'. Usually, when a parent wants to overrule a young person's decision to refuse treatment the courts make the final decision.

AUTONOMY, UNDERSTANDING AND CONSENT

In an ideal world, everything you do is with a patient's fully informed consent, even if the patient is a child — but this is not always possible. Consider the following questions:

1. A baby with cystic fibrosis does not want to have an injection against pneumococcus. He fights but you do it anyway. On what basis do you override his consent?

2. A four-year-old deaf child does not want to take her medicine. It's amoxicillin for an ear infection. She has bilateral bulging eardrums and is toxic. Her mother asks you to change the flavor so she will take it but the child doesn't want it at all. Why do you ignore her view?

In these cases you are clearly acting in the best interests of a child who is too young to understand. The pillars of ethics involve looking at autonomy (an individual's right to decide from themselves) set against justice (the common good), and doing harm set against doing good.

Here you can see that autonomy has little bearing. The cases hinge on the fact that the treatment will do more good than harm and the child is unable to make an informed decision. Therefore their BEST INTERESTS are served by being treated.

3. A 10-year-old boy with Asperger syndrome does not want to take malaria prophylaxis before travel to Africa. He says he doesn't want to go at all as he will be eaten by a lion.

4. A 14-year-old with learning difficulties is refusing antibiotics for widespread infected eczema. You decide to crush tablets and hide them in food. On what basis have you overridden her consent?

5. A 12-year-old Down's syndrome girl with leukaemia does not want chemotherapy because she is needle-phobic. Despite her distress the treatment goes ahead. Why?

Cases 3, 4 and 5 feel similar to 1 and 2. They start to feel less comfortable as the autonomy of the child starts to mean something — but nevertheless we can say that they do not fully understand the consequences of treatment refusal. The child in case 5 will need full assessment to judge her competence but at 12, even without Down's syndrome it is unlikely that a court would be comfortable allowing her to choose death over the possibility of cure on the basis of needle phobia.

6. A 16-year-old boy with autism does not want antibiotics for tonsillitis because the last time he had them he was sick.

You well might agree with the boy. The consequences of antibiotic use can be unpleasant and if his tonsillitis is not a group B strep (which is arguably better treated due to the risk of complications) it is not clear whether you are genuinely acting in his best interests by forcing him to take medication. So his autonomy might win in this case, where the balance between harm and good are less clear and there is no risk of grave and irreversible harm.

7. A 13-year-old with attention deficit hyperactivity disorder (ADHD) does not wish to take methylphenidate (Ritalin) any more as it affects his ability to sleep.

8. A 14-year-old non-verbal boy with autism has seen a psychiatrist who recommends risperidone syrup for his obsessive compulsive disorder. He refuses to take it and his mother asks for a tablet form that she can grind and hide in a jam sandwich.

9. A 17-year-old girl with learning difficulties and schizophrenia refuses her depot injection. Without it you know she will become psychotic in a few days. Can you and her mother force her to have the injection?

Cases 7, 8 and 9 are about children who are perhaps more likely to have their wishes overridden than most as their conditions affect behaviour and mental health. If we are not careful we make assumptions. We should ask ourselves, is the child competent to make decisions regarding their own healthcare?

Overriding the considered and informed wishes of a teenager is uncomfortable and can cause loss of trust and longer-reaching consequences. The decision is not straightforward at all. In cases 7 and 8 the children are still quite young, but their conditions are not life threatening and non-treatment may be a reasonable choice"¦ the girl in 9 is a little older but may have a lack of insight and a risk of grave harm because of her condition.

In most cases by talking and reasoning, agreement can be reached but if it cannot then the courts may be involved, particularly as lack of insight and appreciation of the consequences of treatment refusal may be part of the condition.

10. A 16-year-old girl with Down's syndrome is sexually active. She refuses her depot contraception on the basis that she would like a baby with her boyfriend, who also has Down's syndrome. He is in agreement.

The competence of this child to understand the consequences of having a child may be in question but until we have assessed it we cannot know. The wisdom of any 16-year-old having a child, and the consequences for the child, are also issues — but of course we don't have the right to prevent 16-year-old children without Down's syndrome from getting pregnant if they choose to do so.

In a case such as this an assessment of the child herself is essential. Some young people with Down's syndrome have near-average IQ. Just because you have special needs that does not mean you are not allowed to be foolish. On the other hand, does she really understand what would be involved in raising a child? If she doesn't, then can we persuade her to understand? Is forcing contraception upon her a form of eugenics? The repercussions of this case are potentially huge if she cannot be persuaded to wait until she is older.

CONFIDENTIALITY

Children under 16 have as great a duty of confidentiality owed to them as to any other person, whether they have special needs or not. If proceeding with a non-confidential consultation (i.e. with someone else present) be sure this is the best way for the child to proceed, that it is in their best interests and that if they are able to understand this, they do. If you don't offer the chance to see you alone, or with an interpreter/chaperone from your workplace where needed, rather than a carer or friend, they may never realise they can exercise this freedom.

DISCRIMINATION WITH GOOD INTENT

Children and adults with special needs suffer from all sorts of discrimination, much of which is based on assumptions of what is 'right.'

Should two deaf-blind people have a child? Is that fair to the child? Whether it is or is not fair to the child, whose decision is it? Should a learning-disabled child with a relapse of leukaemia be forced to take cytotoxic drugs for if the chance of cure is poor? Even if her parents are desperate that she should?

These are tricky areas indeed. We hope to manage them through negotiation and reason — but in the end, if we are to persuade the patient to accept our view, we must be clear on why we hold that view, and if we are to override their decision, we must understand on what basis it is that we have done so.

AUTONOMY AND BEST INTERESTS

The following cases demonstrate some very difficult ethical dilemmas. How do you feel about these?

11. A 17-year-old non-verbal girl with autism is in a relationship with a boy also with autism. Her mother asks you to put her on the contraceptive pill without telling her, and says she always takes any tablets she is given unquestioningly. Would you?

12. A mother brings her 17-year-old deaf-blind daughter who has been found in bed with a young deaf-blind teacher. The mother asks for emergency contraception for her daughter. What do you do?

Both of these cases hinge on the need to communicate with the child. This is not yet about autonomy or consent as first of all it's about the simple need to gather information. Being unable to speak does not mean you are unable to communicate. The obligation is upon the health professional to find a way.

13. A consultant asks you to prescribe an antipsychotic drug off-license for an autistic boy with repetitive head movements. He has restricted social skills and learning difficulties, and lives in a residential home with little contact with his parents. He will take whatever you give him. What are the issues?

Here we have issues of harm versus good. How do you know the medication will work? What protection is there for him from harm, if you prescribe outside the drug's license? Can this boy possibly understand why he is being given the medication? If not, can you be sure it will make his life better, overall? What is your evidence?

We will often defer to the consultant on such matters — but if we are prescribing we must ask ourselves these questions. We may be the patient's only informed medical advocate. This is a huge responsibility and we must handle it well.

14. The mother of a 10-year-old year with severe multiple abnormalities asks for a hysterectomy and oophorectomy for her daughter. The child has severe learning difficulties, is unable to communicate other than by grimacing, and requires 24-hour-a-day physical care. The mother says that not only can she never cope with periods, but also if she reaches puberty and has a growth spurt she, the mother, will not longer be able to lift and care for her, or to take her down to the seaside, her only apparent pleasure. How do you think a court might decide?

This example is based on a similar case in which the courts did approve treatment. They did so on the basis that the quality of life of the child would be maintained by the treatment and lost without it, even bearing in mind the risks of surgery.

This was an extreme case, but it illustrates the sheer variety and complexity of decisions we may come up against in managing young people with special needs. One's gut reaction to the request might at first have been shock — indeed the Press were very divided on the ethics of this case. However, careful analysis of best interests led to a clear conclusion and the surgery went ahead.

SUMMARY

This article is intended only to open up a flavor of the ethics and complex decisions to be made around prescribing in special needs.

The issues are not unique — they apply equally to all children (and to adults with special needs too). However, for reasons we have discussed, the risk of making assumptions about what's right may cloud our ability to examine situations objectively.

We must not discriminate and must treat every patient as an individual.

'A nation's greatness is measured by how it treats its weakest members' — Mahatma Ghandi