Should Parents be Able to Decline Consent for Brain Death Testing in a Child?

by Dominic Wilkinson

In the recently reported case of Archie Battersbee, a 12 year old boy with severe brain damage from lack of oxygen, a judge declared that he had died on 31st May. This was almost eight weeks after his tragic accident, and five weeks after doctors at his hospital first applied to the court for permission to test him. His parents have appealed the ruling, and the appeal hearing is likely to be heard in the Court of Appeal next week.

If the judgement is correct that Archie is, sadly, legally dead, it is extremely likely that this has been the case for more than a month and potentially now more than two months. One of his doctors testified that in the view of the specialists looking after him it was likely that Archie’s brain stem had died between 8th and 26th April. While it would not be unusual for doctors and families to take a few days to discuss and then proceed with formal testing, this length of delay is extremely unusual in the UK. The delay in making a definite determination in Archie’s case is because his parents declined consent for brain death testing.

But that might lead us to ask: should parents be asked for consent to testing in these cases?

Brain death testing.

Brain stem death occurs in some patients who have such extremely severe brain injury that it extends to cause permanent severe damage to an area at the junction of the brain and spinal cord. When this happens, basic nerve centres that control breathing and consciousness are destroyed. The testing to see if this has occurred involves testing some of the basic reflexes that come from nerves arising from the brain stem. (For example, this includes pupillary reflexes, corneal and gag reflexes). It also includes an “apnoea test” to see whether the person makes any attempt to breathe when the ventilator is not breathing for them. There are very strict procedures that doctors have to follow when they are performing these tests.

In favour of asking:

Some ethicists and clinicians argue that consent should be sought for brain death testing (eg see here, here)

  1. Usual approach

One basic reason in favour of asking parents for their permission is as a simple extension of normal principles in the care of children. Parents are central to medical decisions for children. Doctors and other health professionals have a duty to fully inform them about the medical treatment that a child is receiving. It would be standard practice to involve them in important decisions about treatment for a child. Parents’ wishes and views would be taken very seriously and respected as far as possible to do so.

  1. Important

Second, testing for brain death is extremely important. It is, quite literally, a life and death decision, since the results of the test are that either the patient has legally died, or that they remain legally alive.

  1. Varying views

Third, parents can have different views about brain death. For example, they may believe that death only occurs when the heart stops beating. Parents may believe that the child is still alive. In that case, they may not see any point in proceeding with testing, or regard it as too risky.

Against asking:

But there are several powerful reasons to think that it would be a mistake to require consent for brain death testing.

  1. Usual approach

It is important to be aware of the special context of children who are critically ill in intensive care. The children in whom this testing might occur are all gravely ill on ‘life support’ machines in an intensive care unit. They have tests, procedures and medicines every hour of the day and night. They are examined by doctors and nurses numerous times a day. Parents are kept updated, and explained about the child’s progress, but they are not asked for their permission for every procedure or examination. That is because it is not possible to do so, and because parents are presumed to consent to those as part of a package of treatment (in intensive care) that the parent has agreed to when the child was admitted. As a routine, parents’ permission is often not sought for diagnostic tests for children in intensive care – those that would find out if a child has a particular condition. So, brain death testing might be seen as an extension to this usual approach, and included within permission that parents are assumed to have already given.

Parents are asked for explicit consent for some procedures in intensive care – for example, if the child is going to have an operation, if they were to start on an experimental treatment, or if they were to be involved in research. But brain death testing is not invasive, it is not experimental, and it is not research.

  1. Not optional

One reason for not asking parents for their consent to brain death testing is because this decision is not an option for them to choose.

It is worth remembering that parents’ rights to make decisions about children have limits. They can make some decisions. But there are other decisions that parents can’t make. As an example, in the UK parents could not consent to a tattoo for a young child, to cosmetic surgery, or to female circumcision. They could not decline consent for an emergency blood transfusion, or refuse an operation for blocked bowel in a baby. Even if those things were important for the parents, (for example, they had strong religious beliefs relating to those practices) we would not think that these are decisions the parents could choose.

Another important decision that parents can’t make in the UK, is to decide for the life-support machines to continue in a child who is legally dead. In fact that applies for both adults and children. Although it can be incredibly difficult for family members to accept, and though they might wish the machines to keep going, in UK law, once a patient has been diagnosed as brain dead, there is no question of treatment continuing.

But if that is the case, then it would be contradictory for parents to be able to refuse brain death testing. That would mean that parents could avoid life support machines being switched off by refusing testing. It would be like parents being able to avoid a blood transfusion in their child by refusing permission for doctors to check the child’s blood count. Or it would be like saying that it is illegal to drink drive, but allowing a driver to refuse consent to breath testing if a police officer suspected he or she was drunk.

  1. Strong ethical reasons

There are important ethical reasons to proceed with brain death testing in patients in whom it is suspected. The most important of these is that brain death testing identifies patients who can no longer benefit from ‘life support’ machines.

Decisions about continuing or stopping life support for patients with severe brain injury can be extremely difficult for families and for health professionals. When is the brain damage so severe that it is not in the patient’s best interests to survive? When is the chance of improvement so small that it is not reasonable to continue?

Diagnosing brain death can simplify these questions, because patients who are in this category plausibly no longer have ‘interests’, and fall into a defined group where there is no chance of recovery. Legally this means that further treatment cannot be in the child’s best interests. For the sake of the patient, treatment should notcontinue. On the other hand, if the test is negative (the child does not meet the criteria for brain-stem death), that does not follow and it may be reasonable to continue treatment at least for a period, depending on the wishes of parents.

Secondly, and even more importantly, continuing intensive care treatment for a patient who is brain stem dead can cause harm to other patients. That is because intensive care is a scarce resource. There are limited beds for patients who are critically ill and limited specialist staff. Paediatric and adult intensive care units regularly have to cancel surgery for unwell patients because they have no available beds. They may have to transfer patients to other hospitals (far from the family home, and potentially at some risk) because of lack of capacity. There are very difficult challenges in how to manage the limited resource of intensive care, and how to balance the needs of different patients who might benefit from that specialised service. But if a patient meets the criteria for brain stem death, the ethical balance is not difficult or uncertain. It is unreasonable and harmful to continue intensive care treatment in a publicly funded healthcare system like the UK.

Inform, don’t ask

Given that there are strong ethical reasons to proceed with testing, and parents do not have a right to decline brain-stem testing, it would be wrong to seek parents’ consent. After all, “consent” is only meaningful if someone can make a decision either way. In one sense, it is an unfair question to ask of parents, if they can only provide one answer.

Instead, where doctors suspect a patient may meet brain stem death criteria, they should explain that to the family, sensitively and compassionately. The situation for their child is extremely grave, and in fact there is a real possibility that the child has already legally died. It is standard practice in that situation to formally test for that possibility, to help guide decisions about next steps, and that is what the professionals plan to do. Parents should be free to ask questions and to stay for the testing if they would like to do so.

The one exception to the above is that in some situations parents may wish to discontinue intensive care without proceeding to formal testing. Doctors should explore parents’ wishes around this, but that may be an alternative to performing brain-stem death tests.

Objections

I have suggested that parents should not be asked for their permission or consent to brain stem testing. But in some cases, parents may express their clear opposition to the plan to perform tests. What should happen in that situation?

As with other disagreements that arise in the care of children, health professionals should take time to listen to parents’ concerns, to answer their questions, and to explore ways to support them. It is intensely distressing for families to have their child severely ill (perhaps particularly after a sudden, unexpected accident as befell Archie), and the news that their child may have already died could feel impossible to accept. Patience, care and empathic support can often resolve disagreements, and most families do come to accept the necessity of testing in cases like this.

However, if parents are resolved that they cannot accept testing, health professionals should seek an emergency court order. This should be explained sensitively to parents. Just as a situation where parents are refusing a blood transfusion for their child (because of their religious beliefs), health professionals should explain that they respect parents’ beliefs, but cannot go along with their request. Testing needs to proceed, and court permission will be sought for this to go ahead. Indeed, the Jehovah’s witness transfusion refusal cases provide a relevant precedent  – a hearing should be arranged urgently (eg within 24 hours) because of the importance for the child of clarifying the situation (and the potential for harm to others). In the Battersbee case, there was a delay of 20 days between the hospital applying to the court and his first formal examination for brain death.

Some authors claim that the real reason doctors don’t want to ask parents for consent for brain death testing is because they want to maximise the number of organ donors. But that is a mistake. None of the arguments given above are about organ donation. The question of whether the child meets criteria for brain death, and whether they will donate their organs are separate questions. If parents do not wish the child to be an organ donor, that will not go ahead even if the child is brain-dead. Therefore, not allowing parents to refuse brain death testing will have no impact on the separate (important) question of organ donation.

 

Finally, it is worth noting that the above analysis applies to the UK and to other countries that see brain death as defining a clear category where treatment must not continue, regardless of patient or family views.

Some part of the US, for example, accommodate religious patients and families who do not agree with brain death determination. Other parts of the world (eg Japan), only apply brain stem criteria where the family wish this. In these jurisdictions, it is clearly important to ask families for their consent to brain death testing – because there is an open question about whether treatment will continue if testing is positive.

That is not the situation in the UK. Here, there is a clear legal and ethical approach to diagnosis of death in patients with profound brain injury. Of course some families may struggle with that, and may not agree with that approach. But the laws (and ethical frameworks) of a society apply to us whether or not we agree with them. We have to pay taxes even if we don’t wish to, we have to obey the speed limits even if we would prefer to drive faster. Parents decisions about their children are constrained (to protect the child from harm) whether or not they or others in their cultural group would agree. In the sphere of medicine, the range of options that are available within a publicly funded health care system are limited by what is available and affordable.

If a critically ill patient is suspected to have passed beyond the point of no return and to already have legally died, testing should go ahead without delay. Parents and family members should be informed and supported. But they should not (in the manner of Don Corleone) be made an offer they cannot refuse.

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