Ethical view

Some ethicists and clinicians argue that consent should be sought for brain death testing.3 4 Parents are central to medical decisions for children. It would be standard to involve them in decisions about treatment for a child. Furthermore, testing for brain death is extremely important. It is, quite literally, a life and death decision, since the results are that the patient has either died, or remains alive.

But there are several powerful countervailing arguments. The first is that for critically ill children, parents’ permission is not sought for every procedure or examination, particularly diagnostic tests. It would not be practical to do so; moreover, parents are presumed to agree to these when the child was admitted to intensive care. In neonatal and paediatric intensive care, parents are regularly updated and informed, wherever possible, of what is planned for the child and why. Explicit consent is sought if the child is going to have surgery or an invasive procedure, start on an experimental treatment or be involved in research. But brain death testing is none of these.

A second reason to think that doctors might not need to seek consent is that this decision is not an option for parents to ethically choose. Parents have an important role in medical treatment decisions for children, but their rights have limits.5 In particular, they are not ethically or legally permitted to insist that treatment continue in a child who is already dead. But if the attending clinical team required permission from Hana’s parents for brain death testing, this would give the parents a de facto right to continue interventions (at least temporarily) in a child who has, in fact, died. If, as suspected, Hana has in fact died, continued medical interventions cannot be in her interests, and indeed are ethically suspect since ordinarily, they may only be performed on live patients.

Proposal: informed non-dissent

One potential solution would be to adopt an ‘informed non-dissent’ approach for brain death testing in children.6 This is a model that has been developed in a related context for potentially futile or medically inappropriate interventions at the end of life in critically ill children and adults.7 In such a setting, some families are emotionally unable to agree to limitations on treatment (even if they recognise that this may be in their child’s best interest).8 An informed non-dissent approach involves informing caregivers about the patient’s clinical condition and a proposed plan for further care (for example, that cardiopulmonary resuscitation would not be provided in the event of a cardiac arrest). The family’s explicit agreement is not sought, either verbally or in writing. However, the family are given the opportunity to ask questions and to express concerns or opposing views. If the family do not disagree, the medical team is able to proceed with the plan they have described.

One arguable benefit of ‘informed non-dissent’ is that this potentially avoids or reduces the burden on families. It can be a valuable compromise option that allows medical teams to make plans in the best interests of the patient, but avoids some of the ethical challenges of unilateral decision-making.9

Legal view

Would this approach be lawful? In some jurisdictions, doctors may carry out brain death testing autonomously (ie, without the need to seek consent) as part of the routine function of their work.10 11 There is currently no domestic law in England and Wales which explicitly authorises such an approach. This means that the legal framework must be understood from wider principles set out in relevant case decisions from the senior Courts of Precedent. Brain death testing is not an emergency, is not life-saving, but has profound (indeed fundamental) ramifications for the patient, involves doctors touching the patient and involves some invasive procedures. In Hana’s case, until clinical suspicions of death have been confirmed, then she may be alive. It follows that currently, it may be unlawful for doctors in England and Wales to carry out brain death testing autonomously.12

If this is correct, then it also follows that if a parent/carer (once notified of the intent to carry out brain death testing) objects explicitly to the testing, then the only way that brain death testing lawfully can be carried out is following the court having granted permission to do so.13

What, then, if Hana’s parents (having properly been informed of both the proposed procedures and the consequences that follow the outcome of testing) do not object to testing being carried out?

This situation is, perhaps, best explored under the law relating to implied consent. There is no requirement in England and Wales for consent to medical procedures to be in any particular format.14 Where consent is required, that may be express oral or express written consent or implied consent. For legal purposes, acquiescence, that is, acceptance without protest, is different from consent.15 Implied consent (ie, a set of facts, going beyond mere acquiescence by the patient/carer, but falling short of explicit consent) from which a decision to consent is reasonably inferred by those treating is, in this jurisdiction, a valid form of consent.

Consent to testing is implied routinely in a variety of different ways in different clinical settings. Necessarily the ‘critical mass’ of facts required to reach the threshold at which consent will be implied will vary depending on the type of testing being considered and also the clinical setting. The criteria set by the Academy of Royal Medical Colleges are the definition of death in the UK in both law and medicine.16 It is obvious that establishing whether or not the patient is alive is a core responsibility of any medical team. Given the need to determine whether Hana is alive, the threshold of implied consent is, we would argue, relatively low, despite the clinical situation being grave. Providing that a parent is properly informed and does not object to the testing, then we would argue that consent can properly be implied by their informed non-dissent.

For reasons explored above, there are also sound ethical reasons why explicit consent should not be essential before brain death testing is undertaken. The House of Lords has emphasised the importance of the law and ethics of medical practice moving together.17 This provides another powerful reason why the law should be interpreted in a way which permits the use of informed non-dissent to be the routine approach adopted to consent to brain death testing in this jurisdiction. In practice, as with all important issues relating to consent, the clinical record should be completed to confirm the explanation given, the parental response and the medical decision to treat informed non-dissent as implied consent to brain death testing.