Special 20th anniversary issue of Medical Law International : ‘Best interests in an age of human rights’

This special issue to celebrate the 20th anniversary of Medical Law International seeks to address the challenges posed by two core values of medical law, the relationship between which is at best uneasy and at times arguably one of the incompatibilities. When is it appropriate for medical practitioners to treat according to their professional view of a patient’s ‘best interests’, and when must this give way to the ‘rights’ of patients or their families to dictate a different course? In England and Wales, 2013 also marks 20 years since the landmark judgment of Re C (adult: refusal of treatment) [1994] 1 All ER 819, ¹ which established that a competent patient’s right to refuse treatment must prevail over clinical views of their best interests, and Airedale NHS Trust v Bland [1993] 1 All ER 831, establishing that a permanently vegetative patient may be allowed to die as continued life could be judged no longer to be in his ‘best interests’. Both of these judgments have impacted on English law in ways that have only intensified since the enactment of the Human Right Act 1998 and the incorporation of the European Convention on Human Rights into domestic law. For example, should mature minors enjoy the same to determine their own ‘interests’ as adults?; how is the enforceability of a right to refuse life-saving treatment to be reconciled with criminal laws that prohibit apparently unwise or potentially harmful behaviours notwithstanding the ‘victim’s’ consent?; what is the precise relationship between the lawfulness of withdrawing life-sustaining treatment and feeding and the duty on the state actively to protect an individual’s right to life under Article 2? These concerns all demand urgent attention in medical law debates and are addressed here across four new articles by Suzanne Ost and Sara Fovargue, Jonathan Herring, David Archard and Elizabeth Wicks.

Two articles concern the rights and interests of mature minors and take very different positions. In their article ‘Does the theoretical framework change the legal end result for mature minors refusing medical treatment or creating self-generated pornography?’, Suzanne Ost and Sara Fovargue compare two instances of the treatment of mature minors who, in the eyes of adults, seem to need protection from their own potentially harmful decision making. Minors who refuse medical treatment and minors who indulge in home-made pornography (using themselves as models) are equally prevented from exercising their autonomy by paternalistic laws that deem them unready to make the sorts of decisions that they would be entitled to make once they reached the age of 18 years. Would it make a difference to the outcome of legal judgment in these contexts to take a ‘best interests’ or a ‘rights’ approach? Ost and Fovargue have their doubts, since the exercise of rights is arguably always limited by wider value judgements about welfare, health and morals. In the contexts described by Ost and Fovargue, it is of course quite predictable that law seeks to curtail autonomous decision making, since where minors are concerned, both death and sex (irrespective of the age of consent) are widely considered to be taboo.

While Ost and Fovargue seek to mount a liberal critique of paternalistic laws by demanding clarification on why minors should have their decision-making disrespected on grounds that are not applied to adults, David Archard’s ‘Children, adults, best interests and rights’ suggests applying to adults the level of paternalism currently reserved for minors. In presenting his own argument that self-consciously positions itself in sharp contrast to what he sees as the liberal orthodoxy, Archard asks how are rights and interests reconciled in the treatment of children and how ought any reconciliation bear upon the difference currently enshrined in law between child and adult self-determination? Legal instruments in various ways make it clear that children have a ‘right’ to have their best interests respected (see, e.g. the ‘paramountcy’ principle in section 1 of the Children Act 1989). Furthermore, they allow for mature children’s voices to be heard and, where the child in question agrees with responsible adults, they have the right to consent on their own behalf (see, e.g. the House of Lords judgment of Gillick). However, this is not at all the same thing as determining what those interests are. First, through a critique of the limitations of John Eekelaar’s notion of ‘dynamic self-determinism’, and then by suggesting an approach of his own that many liberal readers will find highly contentious, David Archard lays down a challenge to anti-paternalists. First, he argues that in addressing the tricky relationship between rights and determining what a child’s interests actually are, greater attention is due to the participation in dialogue of the child. Second, he controversially suggests that just as this would not result in a child being able to determine their own interests contrary to the best interest assessments of responsible adults, such a position should also be taken as regards adult patients ‘whose choices demonstrate a lack of understanding and intelligence such that acting on their best interests is preferable to respecting their imprudent choices’.

In taking their opposing position on the relative desirability of paternalism and self-determinism in treating individuals whose desire seem to others to run counter to their ‘best interests’, the articles by Ost and Fovargue and Archard arguably imply that at a certain point a choice must be taken to favour rights or best interests. However, departing from this oppositional view, Jonathan Herring in ‘Forging a relational approach: Best interests or human rights?’ argues that both the concepts can and must be reconceptualised so as better to recognise the relatedness between individuals. After all, both are, for Herring, dominated by networks of dependency, responsibility and care that make up a full-lived life. In Herring’s view, the predominant legal understanding of welfare and rights as attaching simply to individuals, and of vulnerability attaching only to the incapacitous, is misguided. For example, maximising the welfare of a child or incapacitous adult patient requires considering the impact that any decision might have on his parents or carers. Likewise, certain rights, such as the protection of family life guaranteed under the Convention, are by their nature relational. For Herring, both best interests and rights are part of a much larger ethical structure centred on the importance of care, the embodied reality of a person’s life within families and friendships and the responsibilities that arise therefrom.

Herring’s article takes critical import from his concern to uncover the fictionality in the best interest test that purports to separate the interests of the individual patient from those family members and other people that care for them. A rather similar concern motivates the contribution to this issue from Elizabeth Wicks in the specific context of withdrawal of life support and feeding from permanently vegetative patients (‘When is life not in our own best interests? The best interests test as an unsatisfactory exception to the right to life in the context of PVS cases’). In her article on the relationship between best interests and the right to life in the context of the withdrawal of treatment and Artificial Nutrition and Hydration (ANH), Wicks offers a fresh reading of what she sees as the conflict between best interests and rights-based approaches to care at the end of life. She takes issue with what she sees as the ‘dice-loading’ in the reasoning of the House of Lords in Airedale NHS Trust v Bland by taking a best interests approach to end of life cases. Starting from the assumption that both life and death were matters of complete indifference to Anthony Bland, it was inevitable that the court would find that to continue his life would not be in his best interests. What of the Permanent Vegetative State (PVS) patient’s right to life, and the positive obligation on states to preserve life? Wicks notes that since the enactment of the Human Rights Act 1998, courts have read the best interests test conveniently but unconvincingly into Article 2, for example, Butler-Sloss LJ’s insistence that medical decisions taken in good faith in the patient’s best interests will not violate Article 2. Seeking to find a more convincing role for Article 2, Wicks argues that courts should learn from experience in other jurisdictions that have sought to combine best interests with substituted judgment, and ‘reconstruct’ the incapacitated patient’s own notions of human dignity, whereby evidence of the patient’s own previous feelings and beliefs would be necessary to dislodge the presumption in favour of prolonging life. For Wicks, such an approach would reinstall the patient at the centre of such cases, and by including family members and carers in this process, such a reinstallation need not necessarily be artificially atomistic.