'Slow code': Trisomy 18 in the UK

The US folk call it 'slow code'; we don't have a phrase for it in the UK, but we probably should. I might suggest that 'negligence', 'substandard care', 'lying' and 'collusion' are not too strong for this practice, which is widespread in the UK for children with trisomy 18.

What is it?

Let me give you some examples:

• A child with trisomy 18 is admitted to A&E with respiratory distress. Parents are asked about the possibility of a limited care plan but decline, and are clear they want full treatment. Oxygen is turned up to 2 lpm, a large amount for a child of this age and size; they take the child's observations; staff say the child does not have an infection and suggest that the cause is probably underlying lung issues due to trisomy 18 and suggests the family goes home.

• A child with trisomy 18 is on a ward receiving high-flow therapy. They have high work of breathing; the oxygen requirement is going up to 60%; the parents are clear they want full treatment. Normal practice for a child in this condition would be transferral to a PICU, but the parents are told that no child would be transferred to a PICU in this circumstance and that the criteria for transfer to PICU are X, Y and Z. If X, Y and Z were the true criteria for PICU admission, it would mean that the PICU might as well be the morgue, as no-one would survive.

• A baby with trisomy 18 is on the NICU and is having repeated desaturations. The parents are concerned but are told this is normal; the baby is given oxygen. They are told this is maybe reflux; reflux medication is prescribed. The baby is very fussy and they are told that maybe the baby's behaviour is making the sats drop. Jokes are made about the fussy baby and how she is a 'difficult one'.

• A child with trisomy 18 is on the PICU. They have an increasing oxygen requirement to maintain saturations and are very unsettled, in fact inconsolable. The oxygen requirement is exceptionally high. The parents express concern to a number of medics and nurses. One doctor simply records the situation and the parent-reported 'fussiness'; they agree to paracetamol and then a dose of another sedative. They prescribe a laxative to relieve constipation.

We even have the antenatal slow code situation:

• A pregnant women meets the neonatal team at 26 weeks, a few weeks after a diagnosis of trisomy 18 for her unborn baby. She expresses a desire for active treatment after birth. The neonatal team says they will have to discuss; doesn't arrange a follow-up appointment for weeks; finally, with pushing, arranges a follow up appointment for 32 weeks. In the interim, full pregnancy management hasn't happened since no neonatal plan in place. At 32 weeks, they still haven't agreed but communicate that no, the baby will not receive full treatment. The situation has then to be escalated via mediation, ethics. If they play their hand right, there will be either a stillbirth or premature labour; perhaps if they really do well there won't be a plan until 40 weeks anyway.

So what happens in these situations?

Babies die; parents have regrets; medics move on.

Is it always deliberate? Perhaps not. Sometimes it is: sometimes medics feel they're working in the best interests of the baby and/or the parents, that the parents are blinded by love: a form of medical paternalism. Sometimes it is genuine negligence, perhaps reinforced by an underlying attitude of 'this child is less important than other children'; they are busy, so they prioritise more 'important' children.

Either way, here are some signs that your child might be being slow coded:

1. They are very keen for you to go home as soon as possible, despite having not done any investigations.
2. They blame the child's behaviour or personality for out-of-range observations: "Sats are low because he's fussy"; "He's a naughty one".
3. They accept parameters that they don't accept in other children and describe it as "just [your child]". For example, they accept high work of breathing or low oxygen saturations and don't give a strong medical reason as to why it is different for your child than others.
4. They take a very long time to do anything. There is always an excuse: weekends, bank holidays, annual leave, other units not getting back to them.
5. They are keen to give you low-level treatments such as paracetamol or oxygen, but very reluctant to give high-level treatments, telling you that your child doesn't need them.
6. You feel you are being fobbed off but you're not sure how, or how to challenge it.
7. Other parents are telling you what treatments or investigations to ask for, but your medics always have a reason as to why you your child doesn't need them.
8. The level of care your child is given doesn't seem the same as other children in the ward.
9. Nothing much is being done for your child at all. There doesn't seem to be a plan for investigations and treatment; things have stayed static for a long time.
10. Everyone is very kind and sympathetic to you (this is usually a sign that you're not being difficult enough).
11. They blame your child's clinical symptoms on 'the underlying condition' or 'trisomy 18'. If you object, they still do it; they just get cagey and hint.

What can you do in a slow code situation?

• Ask for a second opinion.
• If you think you're being fobbed off, ask them to put their statements in writing. They may balk at writing down that your child does not have an infection when they haven't actually tested for it.
• Be very clear that you want full treatment and that you will be pursuing the matter if it is not provided.
• Do not accept 'underlying condition' as an explanation. Repeat: "Nobody dies of trisomy 18."
• Listen to people on the internet and evaluate their suggestions. Be suspicious if your medics say things like, "Things are different in America," or if they say that everything you suggest is not appropriate for your child. You should of course be suspicious of people on the internet too, but with a child with T18, you cannot fully trust medics either.
• Do not accept delays. If you don't get responses, or they insist on waiting for X, Y and Z, then push harder or escalate.
• Do not go home if you're not happy.
• Do not accept that out-of-range parameters are 'just [your child]'. Demand to know why your child's clinical situation justifies those parameters, and demand that they are appropriately investigated.
• Get an advocate involved to help you challenge effectively.
• Don't be afraid of being difficult. If you think they think you are difficult, you are probably challenging effectively.