Legal framework for disputes about life-sustaining treatment

The legal position in the UK on withholding or withdrawing life-sustaining treatment from critically ill infants like Charlie Gard is reasonably straightforward in principle, if not in application. The courts have described the process as a ‘joint decision’1 between doctors and those who have parental responsibility. This shared decision-making process is subject to two qualifications. First, parents have a duty to make decisions according to the child’s best interests, not according to their own.1 2 Second, while doctors must involve parents in decision-making,3 they have no obligation to provide treatment when responsible medical opinion is of the view that it is against the patient’s best interests or is ‘futile’.1 4 5 In other words, parents cannot compel doctors to provide treatment that doctors do not think is medically indicated.1 4

The vast majority of disputes about limiting life-sustaining treatment are resolved through a consensus-building process, without going to court.6 When a dispute becomes intractable, however, either the parents or the hospital can apply to the court for a determination of whether it is in the child’s best interests to provide the requested treatment.5 This is an objective inquiry into a broad range of factors and includes ‘medical, emotional, and all other welfare issues’.7 8 There is a strong presumption in favour of providing continued treatment.5 The court must balance conflicting considerations to ultimately determine the child’s best interests, which will vary case by case.7 From a practical perspective, while there is no legal requirement to bring the matter to court,4 when a dispute becomes entrenched the court’s input is usually sought as a matter of good practice.9

Most disputes about potentially life-sustaining treatment that reach the courts, like the Charlie Gard case, are best interests applications. However, such conflict can also raise concerns about the efficient use of scarce health resources. Another legal avenue exists when treatment is withheld because it is not cost-effective: an action for judicial review. In the well-known Child B case,10 the father of 10-year-old Jaymee Bowen brought such an action in response to the health authority’s refusal to fund expensive experimental cancer treatment. The case considered both whether the treatment was ‘clinically appropriate’ and whether it was an ‘effective use of the Authority’s limited resources’. The Court of Appeal refused to compel the health authority to provide the treatment as it was not for courts to get involved in these ‘difficult and agonising’ resource allocation decisions, which require judgment about how to prioritise a limited budget across all patients. The courts usually refuse to intervene in resource allocation decisions, because they recognise they are poorly situated to make these prioritisation decisions in the context of a single case. While they will invariably not adjudicate on the substance of resource allocation decisions, they will however evaluate the decision-making process.11 But a threshold issue is that for the courts to consider resources in a decision about potentially life-sustaining treatment, there must be an explicit rationing decision, or at least evidence to suggest that one was made, which was not present in the Gard case. Charlie’s family had raised the funds to pay for the experimental treatment in the USA, and the Great Ormond Street Hospital clinicians had based their treatment refusal solely on Charlie’s best interests.

Criticisms of the current legal approach

The criticisms of the Gard case centred on three areas: the lack of a mechanism to address concerns about resources; criticism of the best interests standard; and problems with court involvement.

The first criticism is that the law does not sufficiently engage with issues of limited healthcare resources. One rationale for denying life-sustaining treatment is that the expected benefit is too low (or too uncertain) to justify the cost to the public health system. In cases like Gard’s, when there is uncertainty about whether a treatment is in a child’s best interests, this distributive justice argument can provide a clearer ethical rationale for treatment refusal. Low cost-effectiveness is a reason to deny a treatment even if it is established that it is in the patient’s best interests to try it.12 Wilkinson and Savulescu contend that one barrier to giving effect to this rationale is that ‘there is no legal mechanism for courts to adjudicate on the issue of resources where there is a dispute.’12 This criticism raises two related points about the law. First, it is not strictly true to assert that there is no legal mechanism to adjudicate on the issue of resources (a point that Wilkinson and Savulescu appear to recognise). Courts can address resource-based treatment denials in an action for judicial review, although only when a rationing decision is made explicitly, as it was in the Child B case.10 This requires policies to support resource-based decisions about intensive care however, which Wilkinson and Savulescu12 observe are lacking. The second point is that in an action that involves only a best interests application, like the Charlie Gard case, it is true that the court cannot consider cost-effectiveness, even if it is a valid ethical concern.13 Charlie Gard was occupying an intensive care unit bed that could have provided more benefit to another patient, and Wilkinson and Savulescu argue that a lesser harm overall may have been to allow him to access the experimental treatment overseas months earlier, to free up these vital resources for others.12 Yet, this was not relevant to the court’s deliberations, which were focused solely on Charlie’s best interests.

A second criticism of the law in response to Gard was that the best interests standard itself is problematic. At the heart of this criticism is that the best interests test is unclear,14 15 is inconsistently applied and varies based on the values of the assessor.13 14 This inability to provide a precise and objective meaning to best interests has led to several proposed alternatives,16 including calls to permit parents to access any treatment that does not harm the child.17 The parents’ counsel in Gard (unsuccessfully) employed a version of this argument on appeal, contending that when a ‘viable alternative treatment option’ is desired by the parents, the court should accede to it unless it would cause the child ‘significant harm’.18

A third criticism raised in response to Gard is that the courts are ill-suited to resolve these disputes. Some view the law as an intrusion into what are rightly clinical matters.19 Others accept the validity of the courts as decision-maker but complain that they add unnecessary delay and cost to an already difficult process.12 20 21 For example, Wilkinson and Savulescu argued that the court process in Gard, with its ‘lengthy process of adjudication and appealing’, resulted in the ‘worst of possible outcomes’, as no party had a satisfactory result.12 Charlie Gard received months of intensive care support that doctors believed was against his interests, and the parents’ bid for further treatment was unsuccessful. Wilkinson and Savulescu suggest an ‘independent ethics committee’,12 with ethical and medical expertise, as a potential solution.

An alternative approach grounded in key values

Despite these criticisms of the law, we argue that the current system is defensible. Our position is grounded in a set of values that we have elsewhere proposed should guide regulation in this field.22 23 These values, set out in box 1, are drawn from existing commitments made through legislation, the common law, conventions and treaties.

To an extent, these values are promoted in the current legal framework in countries like the UK, Australia, Canada and New Zealand. We believe that a small but significant change to the legal framework could better promote these values and, at the same time, address some of the concerns levelled at the law in cases such as Charlie Gard.

A defence of court involvement

We have argued that the current legal position is defensible, but requires refinements to better align with key values. We now turn to the third area of criticism, the role of the courts in resolving intractable disputes. Whether courts should have a role is not a hypothetical question. In the USA, Texas through its Advance Directives Act has effectively precluded substantive (not procedural) court involvement.26 27 Our position, however, is that a judicial process best advances the values we endorse above (box 1), although imperfectly.

As a starting point, it is important to note that some of the discontent about court involvement might be based on disagreement about what values a decision-making process should reflect. For example, Wilkinson and Savulescu have called for a ‘fair, expedient’ process.12 15 But the factors that might make a decision fair—such as due process, opportunities for deep reflection, collection of all relevant information and an avenue to contest a decision—can result in a decision not being expedient. Similarly, an expedient process, such as unilateral and final decision-making by a clinician, would not be fair. Similar issues arise in relation to appeals (a subject of criticism by some).12 Appeal mechanisms are an important check on the power of the state and guard against poor or idiosyncratic decision-making. But appeals take time—especially in cases like this that were appealed to three higher-level courts—even when individual courts can hear and decide on cases relatively quickly.i Compromises might be needed, reflecting that values we want to see in decision-making conflict.

Critics of judicial decision-making also need to understand that these cases have both private and public functions. There is clear resolution of a private disagreement occurring but these decisions also create public statements, and sometimes binding precedent, so there is an important public aspect as well.21 28 29 Any critic of the courts’ role should take account of that too. Private parties may have to endure a less than optimal process if that promotes better future decision-making (benefitting parties presently unknown at the time but including future patients, families and clinicians).

This is not to completely dismiss concerns that have been raised about the Gard litigation. Existing practices are problematic, especially in relation to cost, delay and adversarialism.12 Some of this may be impossible to avoid. Compelling clinicians to treat against their conscience or stopping treatment against parents’ views will involve conflict and ill feelings, even with the most sensitive decision-making process. And indeed, this could point to the utility of the courts as an independent State-endorsed decision-maker.

While some adversarialism is unavoidable, there may be ways to address concerns about cost and delay. One approach used in Australia and elsewhere including Ontario, Canada, is to empower quasi-judicial multi-member tribunals.30 These tribunals are often multidisciplinary and provide scope to convene a panel with both clinical and ethical expertise. England has a tribunal system in operation but it does not have jurisdiction in this area. Tribunals may better achieve the fair and expedient forum called for by Wilkinson and Savulescu.12 15 They are generally not bound by rules of evidence and can operate more flexibly (and quickly) than courts. Tribunals are also generally more inquisitorial rather than adversarial which means they can call their own evidence and are not constrained by the parties in the issues they can consider.

There are similarities between tribunals and the ‘independent ethics committee’ proposed by Wilkinson and Savulescu.12 The suggestion about obtaining appropriate ethical and medical evidence is possible in both models and is something which tribunals in other countries have done in making decisions about life-sustaining treatment.31 32 However in our view, tribunals have some significant advantages over the ethics committee model. One is that tribunals represent the State and their decisions are generally enforceable at law. Another is they often have a duty to give publicly-available reasons. These features promote transparency and contribute to the certainty of future decision-making (although tribunal decisions are not binding precedent).21 28 We also note that the Texas approach, which uses an ethics committee as decision-maker, has been widely regarded as lacking fairness26 27 although we accept that it would be possible to address some of those concerns through better design.

This is not to suggest that tribunals do not have drawbacks too. Inquisitorial processes can lead to unnecessarily broad investigations, lack the precedent-setting function of courts and can have problems with delay depending on their appeals processes.33 A better approach for these disputes might be to simply streamline court processes, for example, by allowing judges greater latitude to narrow the issues involved and determine how evidence is received. While there are many possible reforms, addressing these concerns about litigation are perennial challenges.

No process designed to resolve intractable disputes—by definition, challenging problems—will be perfect. Compromises must be made and will depend on what priority one gives to each of the values we articulate (or indeed, other values). Our point though is that an external forum, such as a court or a tribunal, is needed and critics of its role should take account of these trade-offs when evaluating the chosen process. Good decision-making that meets the values outlined in this paper may take time, and perhaps that is justifiable.