by Dr Kirsty Moreton, Lecturer in Law and Ethics, Keele University

On 12th March of this year in the State of Victoria, Australia theMedical Treatment Planning and Decisions Act 2016 came into force. A unique aspect of this legislation is that it permits children to make legally binding ‘Advance Care Directives’ (ACD). Sufficiently competent children may determine for themselves, in the form of a specific ‘instructional directive’ what kinds of care or treatment they wish to consent to at some future time should they lose capacity. Importantly, this also includes the right to refuse. They may also make a more general ‘value directive’ outlining their beliefs and preferences that can inform future decision-making. [1]

A couple of weeks later I presented a research paper in the Medical Stream of the SLSA Conference 2018, on the question of whether England and Wales should follow the Australian example.

My answer is yes.

My starting point was recognizing the important differences of approach between Australia and England/Wales. Whilst it is true that both jurisdictions use the Gillick test of  ‘sufficient understanding and intelligence’ to determine child competence to make medical decisions,[2]the English courts are notoriously guarded and paternalistic when it comes to child treatment refusals. In England, refusals arealmost always overridden on the basis of preservation of life or a child’s ‘right to an open future’.[3]

In relation to advance refusals the law only permits those aged over 18 to make legally binding ‘Advance Decisions’.[4]The Law Commission in a recent review of mental capacity law rejected the idea of extending them to children, as there would be ‘little point’ given that the court could overrule it whether the child was competent or not.[5]Yet it can be questioned whether reliance on case law whose rationale is based on the traditional presumptions can hold the same weight at the end of life – when child ACD’s are most likely to be used.

In contrast, the Australian approach is more permissive. Lower ages of medical consent are enshrined in Australian legislation,[6]and much less judicial caution is exhibited around treatment refusal. Whilst in a 2013 case the Australian court didoverride a child’s refusal,[7]this has not prevented the legislature from recognizing that ‘wherever possible, the person most affected by a medical treatment decision should be the person who makes that decision’.[8]As noted by the Minister for Health, Jill Hennessy, the general aim was to ‘treat all people equally on the basis of their decision-making capacity’.[9]

Of course, permitting anyone to make legally binding ACD’s is not without its problems. All of the usual concerns about whether the patient can ever be fully informed about future possibilities; worry around motives; and questions around continuity of personal identity, still hold true for children.

Arguably these are magnified for children, who may have additional obstacles in accessing or comprehending information, may be more susceptible to pressure or influence, and have less life experience upon which to base wishes and values. This is coupled with an ultimate concern that medical decision-making is a function of parental responsibility, and as a study by Beecham and others suggests,[10]parents themselves fear making premature binding decisions, or that doing so they signal a loss of hope.

Yet, I am not convinced that these difficulties are insurmountable. With a shift in thinking and proper safeguards competent children could make advance refusals just like adults. Indeed, empirical evidence suggests we often underestimate the capabilities of children – a study by Hinds and others showed that children as young as 10 are able to make end of life decisions on serious issues.[11]

To allow children to make ACD’s would properly acknowledge their rights to participation under Article 12 of the UNCRC. Problems with information can be overcome by having honest conversations with children, and recognising that children with long experience of chronic illness often have profound insights. Lack of life experience makes ACD’s lessproblematic, as having only just gained competence there would less concern over changes in personal identity and the period of time between making the ACD and utilising it is likely to be shorter. Finally, when applied to end-of-life cases, making ACD’s acknowledges palliative care aims – which are as applicable to children as they are to adults – around facilitating choice at the end of life as an element of a “good death”.

We have a way to go before child ACD’s would be possible in England/Wales, yet there are promising signs of moves forward. Guidelines issued by the Royal Collegemake specific provision for contemporaneous child refusal in clinical practice – although only where parents and clinicians agree.[12]Recent case law has shown more creativity in the end-of-life context where an 11 year-old boy was permitted to refuse some aspects of palliative care in preference for more important relational concerns.[13]Additionally the Law Commission didpropose that 16 and 17 year olds should be able to make advance consents to care or treatment in certain circumstances.

There still remains the question of how to determine child competence to make an ACD. The Australian provisions state that children must have capacity in relation to and understand the nature and effect of each statement they make. The Department of Health have suggested that ‘this may require young people to have a more developed understanding of themselves and an ability to think abstractly to identify how they may feel in the future.’[14]There is also a safeguard in the Act with the requirement a child ACD must be witnessed by a professional specially trained in assessing child development.[15]

It will be interesting to observe over the next year what the take-up of child ACD’s is like in Australia. As for the English/Welsh context, I intend to undertake empirical research into the legal and ethical challenges from the clinicians’ point of view, and whether the opportunity to make ACD’s is something that children and families would want.

[1]  S12 and s13.

[2]Gillickv West Norfolk Area Health Authority[1985] UKHL 7 as per Lord Scarman. The use of Gillick was confirmed by the Australian Courts in ‘Marion’s Case’:Secretary of the Department of Health and Community Servicesv JWB and SMB [1992] HCA 15.

[3]Joel Feinberg, ‘The Child’s right to an Open Future’ in William Aiken and Hugh LaFollette, Hugh (eds) Whose Child? Children’s Rights, Parental Authority, and State Power.(Totowa, NJ: Rowman and Littlefield, 1980) 124.

[4]s24 of the Mental Capacity Act 2005 (MCA).

[5]Law Commission, Mental Capacity and Deprivation of Liberty(Law Com No 372, 13 March 2017) (Para 15.20).

[6]In New South Wales –age 14; (Section 49 (2) Minors (Property and Contracts) Act 1970 (NSW); and in South Australia –age 16; Section 6 (1) Consent to Medical and Dental Procedures Act 1985 (SA)).

[7]Xv The Sydney Children’s Hospitals Network[2013] NSWCA 320.

[8]Simplifying medical treatment decision making and advance care planning: Ensuring Victorians can make decisions about their future medical treatment Victoria State Government, Department of Health and Human Service, (Jan 2016).

[9]Hansard –Jill Hennessy (Minister for Health) –Sept 2016)

[10]Beecham E et al, ‘Keeping all Options Open: Parent’s Approaches to Advance Care Planning’ (2017) 20 Health Expectations 675.

[11]Hinds P et al, ‘End-of-Life Care Preferences of Pediatric Patients with Cancer (2005) 23(36) Journal of Clinical Oncology 9146.

[12]Royal College of Paediatrics and Child Health, Making Decisions to Limit Treatment in Life-Limiting and Life-Threatening Conditions in Children: A Framework for Practice (2015) para 3.1.3.

[13]An NHS Trust vSK (BestInterests Decision- Palliative Care) [2016] EWHC 2860 (Fam).

[14]Simplifying medical treatment decision making and advance care planning: Ensuring Victorians can make decisions about their future medical treatment Victoria State Government, Department of Health and Human Service, (Jan 2016).