B.R.A.I.N. - A Tool to Help Parents with Making Decisions about Surgery or other Procedures
You’ve seen your GP or Paediatrician, and they’ve recommended you see a Paediatric Surgeon. Or, you’ve looked online about your child’s condition and you’ve gone to see someone for a referral to see a Paediatric Surgeon. Either way, here you are, and now the surgeon is discussing with you an operation for your child.
How, as a parent or responsible adult, do you decide what to do next?
One mnemonic that might help is to BRAIN it.
BRAIN gives guidance for parents on what types of questions you might want to ask, or what you might want to consider yourself as you make an important decision relating to your child’s health. Our job as surgeons is to give you the information you need to work through the mnemonic.
BRAIN stands for Benefits, Risks, Alternatives, Intuition, Next Steps
Benefits: What benefits do I see coming from this operation for my child?
- Some operations, like appendicectomy (removal of the appendix) have obvious benefits.
- For some operations there is essentially no choice at all, as those operations are necessary for the child’s survival. There are a number of operations in the newborn period which fit in this category.
- For other operations, the benefits are less immediately tangible. Examples of these operations are umbilical or epigastric hernia operations, or operations for small hydroceles.
Risks: What are the risks of the operation?
Most operations in children are done under general anaesthesia. That in itself has risks, even before we start thinking about the operation. Children can react to anaesthetics or other medications given during the operation. They have to fast before an operation, which can be distressing. We try to keep fasting to a minimum. The Anaesthetists we work with are all children’s specialist Anaesthetists, and they all also work at Queensland Children’s Hospital. We choose to work with them because we like them, we like the way they interact with children, but most of all because we trust their abilities.
All operations cause some pain, and the larger the operation the more pain children tend to have post-operatively. We can manage most of this pain, but we can’t always take all of it away. Abdominal operations can slow down the gut, and children may not be able to feed for a few days afterwards. Pain medication and a slowed gut can lead to constipation, which also has to be managed. Operations can cause bleeding, but it is unusual for bleeding to result in the need for a blood transfusion. Structures in the body are very close to each other, and the smaller the child the closer they are. Operations can sometimes lead to a risk to nearby structures. Not all operations are successful, and all surgeons have faced ‘redo’ surgery for a small proportion of their patients.
Fundamentally, the risks have to outweigh the benefits for an operation to be recommended or discussed.
Alternatives: Are there alternatives, and if so what are they?
There are sometimes alternative options, and it’s completely ok to ask about these.
One alternative might be to not operate at all. If the condition is causing no symptoms at the moment there is sometimes benefit in waiting. Some conditions can resolve on their own with time (umbilical hernias, and hydroceles will often do this). If an operation is required, then how urgent is it? If there is no urgency to operate then the timing can be at family convenience. Some older children (or, more particularly, their parents) prefer operations during school holidays. Children may prefer to wait until the end of their sports season before having an operation.
If an operation is required, is there a way of minimising harm to normal tissue on the way to the target of the operation? Laparoscopic (‘keyhole’) operations do this, as incisions in the abdomen or chest are smaller. Not all operations can be done laparoscopically, but it’s worth considering.
Is there a way of treating the condition without having to resort to an operation. For example, can your child’s appendicitis be treated with antibiotics, rather than surgery?
Your surgeon will discuss alternatives with you.
Intuition: What does your parental intuition say?
It’s understandable to have some trepidation about submitting your child for an operation, but does your intuition say it’s in their best interests?
There are three scenarios, from a Paediatric Surgeon’s perspective, regarding operations:
- The operation is clearly in the child’s best interests, and to not do it would expose the child to further harm. In this scenario, we will recommend an operation.
- An operation is clearly not in the child’s best interests, and there is not real benefit in doing it. In this scenario, we would not offer an operation.
- The third scenario sits in between the other two, and in many ways is the most interesting. These are scenarios where, as a parent, you have discretion about what to do. These are scenarios where you could choose one of several options – all of which are acceptable. This is called the zone of parental discretion (see below).
Next Steps: What do we do next?
As you consider what comes next, remember that you’re not alone in this process. Our role is to guide you through each option, clarify any uncertainties, and support you in making the decision that feels right for your family. Whether the path forward is clear or you’re choosing between several “good enough” options, we’ll work with you to ensure your child receives the best possible care. Take the time you need, ask all the questions you have, and trust that your thoughtful, caring approach as a parent is central to making the right decision.
What is the Zone of Parental Discretion?
The concept of the zone of parental discretion was originally used in ethics determinations, where parents and clinicians disagreed about treatment. Examples might be:
- Parents wanting to use natural remedies on a burn, rather than medical dressings.
- Parents wanting ongoing treatment for their child, despite it being futile.
- Parents not wanting medications for their child for what they see as a mild condition.
- Parents not wanting blood products for their child.
The zone of parental discretion provides a framework for considering how to sensitively navigate these disagreements. It recognises that while there might be a ‘best’ decision from a doctor’s perspective, there are sometimes also a number of ‘good enough’ alternatives. The zone of parental discretion is where decisions are ‘good enough’; in that the benefit still outweighs the harm, in that situation, for that child. It might not be the best decision, from a doctor’s point of view, but it’s one that’s good enough. Importantly, it’s one which everyone can live comfortably with, and it is better than being paralysed by disagreement between doctors and parents.
We don’t think the zone of parental discretion has to have disagreement between clinicians and parents to suddenly be useful. The zone of parental discretion can be extended, we think, to situations where there are ‘good enough’ alternatives or to situations where the right answer isn’t a single answer but rather is a choice of several options. As a parent, that means any of the options offered is good enough and you can select the one which fits best for your situation.
It can be challenging, as we might not have a single recommendation for you – the ‘best’ option. There are genuinely situations where more than one option is equally effective, or nearly equally effective. The choice is yours. Our job is to answer your questions and give you the information you need to help you to decide.