Growth attenuation therapy for disabled children
Parents of disabled children often face very difficult decisions about the ongoing care of their children. Children with severe physical, neurological and cognitive impairment require 24 hour care which is most often provided by the parents. As these children grow, the physical requirements of caring for them become greater. Growth attenuation treatment with high dose oestrogen reduces the growth of these children and may therefore make it easier for them to be cared for at home as they grow older.
Growth attenuation treatment is highly controversial. In America, such treatment of a girl aged nearly seven years old gained nationwide attention in 2006 after the clinicians involved published their findings in an international medical journal. The child was severely disabled with profound developmental, neurological and cognitive impairment, and a mental age of a three-month old infant. Her growth was arrested with high dose oestrogen therapy resulting in permanent attenuation of her physical stature. The parents had requested the treatment primarily out of concern that their daughter’s continued growth would make it untenable for her to be cared for by them at home. The treatment was the subject of ethical approval by the hospital and the parents sought legal advice prior to therapy commencing.
It is not known how often clinicians in Australia are asked to prescribe growth attenuation therapy for disabled children, but there is anecdotal evidence that such requests by parents may be increasing. These requests call for a consideration of whether a parent can give valid legal consent to a procedure or course of medical treatment that is not therapeutic for the child, such as permitting the child to be a bone marrow donor. Arguably, growth attenuation therapy is a non-therapeutic intervention of this kind because its objective is to assist the carer rather than the child directly, notwithstanding possible indirect benefits to the child in being able to be more easily cared for at home.
The legal position
At common law, parents generally have the legal authority to provide consent to medical treatment for their children, where the child is not sufficiently mature to make his or her own treatment decisions. However, there are some forms of treatment that have been held by the courts to be “special cases” such that court approval is required before the treatment can lawfully be given.
The leading case which defines the limits of the types of treatments and interventions to which parents may consent on behalf of their children is Marion’s case, decided by the High Court in 1992.[1] This case involved a request for the sterilisation of a 14 year old intellectually disabled girl. The High Court noted that the treatment involved invasive, irreversible and major surgery, and therefore held that court approval was required before the procedure could be carried out. While not providing an exhaustive list of which kinds of treatment require court approval, the High Court said that two relevant considerations in this regard are:
- the significant risk of making the wrong decision, either as to a child’s present or future capacity to consent or about what are the best interests of child who cannot consent; and
- the grave consequences of a wrong decision.[2]
Apart from sterilisation, other procedures that have also been held to require court approval include surgical gender reassignment, bone marrow donation, hormonal treatment and termination of pregnancy. While Australian courts have not yet had to consider whether growth attenuation therapy would also fall into this category, there is clearly an argument that it should, since it is irreversible treatment which prevents the child from ever achieving the physical stature of an adult, and therefore has significant and permanent consequences for the child.
In Marion’s case, the High Court also considered the factors that should be taken into account by a court when deciding whether to approve medical treatment for a child. The Court held that the over-arching concern is to determine what is in the best interests of the child. Factors relevant to determining the best interests of the child in each case were held to be:
the particular condition of the child which requires the procedure;
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the nature of the proposed procedure;
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the reasons for which it is proposed that the procedure be carried out;
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the alternative courses of treatment that are available;
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the desirability and effect of authorising the procedure proposed rather than the available alternatives;
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the physical effects on the child and the psychological and social implications for the child of:
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authorising the proposed procedure
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not authorising the proposed procedure
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the nature and degree of any risk to the child of:
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authorising the proposed procedure
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not authorising the proposed procedure
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any views expressed by:
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the guardian of the child
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a person who is responsible for the daily care and control of the child or
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the child
about the proposed procedure or any alternative procedure.[3]
Relevant legislation
Superimposed on the common law principles set out above are various statutory provisions at both Commonwealth and State levels governing consent to medical treatment for minors in “special cases” of the kind described in Marion’s Case.
Under section 67ZC of the Family Law Act 1975 (Cth), the Family Court of Australia has a general power to make orders relating to the welfare of children. This has been held to extend to making orders for the medical treatment of children in cases where the parents alone cannot give valid consent based on the principles in Marion’s Case. In exercising this power, the paramount consideration for the Family Court pursuant to section 60CC of the Act is the best interests of the child.
In New South Wales, section 175 of the Children and Young Persons (Care and Protection) Act 1998 makes it an offence for a person to carry out “special medical treatment” on a child under 16 (other than in case of emergency) without first obtaining approval from the NSW Guardianship Board. “Special medical treatment” is defined to mean:
Any medical treatment that is intended, or is reasonably likely, to have the effect of rendering the child permanently infertile (except where the treatment is for a life-threatening condition and permanent infertility is an unwanted consequence of the treatment);
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Long-acting injectable hormonal substances for the purpose of contraception or menstrual regulation;
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Vasectomy or tubal occusion;
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The administration of an addictive drug
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Certain medical treatment involving an experimental procedure; or
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In the case of a child in residential care, the administration of a psychotropic drug to control the child’s behaviour.
The Guardianship Board is only permitted to approve special medical treatment for a child under 16 if it is satisfied that the treatment is necessary in order to save the child’s life or to prevent serious damage to the child’s psychological or physical health. This is a highly restrictive test, and certainly more restrictive than the “best interests of the child” test applied under the Family Law Act and at common law.
The fact that two different procedures exist in New South Wales for the approval of medical treatment for children that meets the definition of “special medical treatment” - an application to the Family Court under the Family Law Act and an application to the Guardianship Board under the Children and Young Persons (Care and Protection) Act - gives rise to considerable uncertainty and confusion in this area of the law. Arguably, the parents of a disabled child seeking approval for such treatment for their child could choose whichever forum they consider is most likely to lead to the desired outcome.
From the doctor’s perspective, it is to be hoped that the approval of the Family Court would be sufficient to protect the doctor from liability if special medical treatment is carried out. It could be argued that this approval prevails over the State legislative requirement as a matter of constitutional law. However, this has not been specifically tested in the courts, and the theoretical possibility remains that the doctor could still be charged under the Children and Young Persons (Care and Protection) Act if approval has not been obtained from the NSW Guardianship Board.
Ethical considerations
Apart from the requirement to obtain valid legal authorisation for medical treatment of this kind for children, there are also ethical considerations to be weighed by both parents and clinicians. A doctor is not necessarily compelled to perform the medical procedure on the child just because it is requested by the parents. Minds may differ as to what is in the best interests of the child, especially in cases where the direct therapeutic benefit for the child is questionable. A careful analysis of the ethical issues is required independently of the legal procedures for obtaining consent.
Applying these principles to growth attenuation therapy
Growth attenuation therapy does not come within the definition of “special medical treatment” under the Children and Young Persons (Care and Protection) Act 1998, so it is not mandatory to obtain the approval of the Guardianship Board for this therapy. However, there is a strong argument that it nonetheless falls outside the range of treatments for which the child’s parents alone can give valid consent, based on the principles laid down by the High Court in Marion’s Case. This is because growth attenuation therapy is permanent and irreversible, with arguable therapeutic benefit for the child, and there is a likelihood of significant adverse consequences for the child if the wrong decision is made.
If faced with a request for growth attenuation therapy from the parents of a disabled child, doctors must first weigh the ethical considerations to determine whether they consider the treatment is ethically appropriate. If the treatment is thought to be appropriate, care must then be taken to ensure that the proper legal procedures are followed to obtain valid authorisation for the treatment. In view of the legal principles summarised above, doctors would be well-advised to insist upon court authorisation before agreeing to provide growth attenuation therapy.
Written by Julie Hamblin, Partner and Emma Slaytor, Solicitor.
