• Distinguish between ‘clinical decisions’ and decisions that fall in the zone of parental discretion
• ‘Clinical decisions’ should be explained, not offered as a decision for parents to make
• Offer your medical opinion
• Provide reassurance that you have carefully thought your recommendations through
• Emphasise the things that will be done for the child
• Avoid leaving parents feeling alone with the burden of decision making.

Some decisions are ‘clinical decisions’. These relate to interventions that have no chance of success or where the burdens greatly outweigh the possible benefits.

Take medical responsibility for these decisions and do not present them to the family to make. Instead, offer a gentle and compassionate explanation.

Things you can say:

‘There are some things that we can change with medicine, and some that we can’t. We can help (child) with medicines to make them comfortable and stop their seizures.
But if they stop breathing, their body is telling us that it cannot go on. And if we tried heart massage or a breathing tube, it would not change that. It would be uncomfortable for them and would not bring them back. That’s not what we want for (child).’

‘(Child) is dying now. It is important that you be with them. We will be here to support you to do that.’

Other decisions fall in what might be termed the zone of parental discretion (Gillam 2015). This is where the balance of benefits and burdens will be weighed differently by different families.

Given the same clinical situation, children and their families will make decisions based on their individual values and experience. Even in these circumstances, it is always appropriate to offer a medical opinion and advice about what medical treatment is likely to be effective for the child.

Explain why you are making these recommendations in terms of your experience, the available evidence, consultation with experts and the child’s clinical situation.

Parents will feel supported if you emphasise the treatments that will be provided
– although it is also important to let them know about treatments you feel will be ineffective or too burdensome.

Create a sense of shared goals by reflecting the family’s values in your recommendations.

Things you can say:

‘You have told me in the past how important quality of life is to you, and how, especially as (child) gets weaker, they are most happy and calm when they are in their own bed. With that in mind, I think our treatments should focus on keeping your family together at home.’

‘I do not think that putting in a breathing tube will offer (child) any chance of longer survival. (Child’s) lungs are so weak that, if they got severe pneumonia again, we would not be able to save them even if we did put the tube in. Putting in the tube would be uncomfortable, would not make them live longer and would mean they would die in ICU. Instead, I would like (child) to be supported on the ward or at home with oxygen and medication to make their breathing comfortable. Then they can be with their family who love them, rather than in ICU surrounded by machines that can’t help.’

It is helpful for parents to hear that you have been thinking carefully, consulting widely and examining the available evidence.

Things you can say:

‘Sometimes people ask about (you may have read about) tracheostomies for children with this condition. We have thought carefully about that too and we feel certain that it would not be helpful for your child because … ’

Share the burden of decision-making. Avoid asking parents, ‘What would you like us to do next time (child) deteriorates?’

‘It is very important to me that you don’t feel alone with these decisions. It is something we share together.’