It’s Not OK: Communication in Paediatric Critical Care at #dasSMACC

 

I don’t know about you but I had relatively little communication skills training at medical school. It was two or three days over five years and I thought that was ok, but now it seems strikingly inadequate considering communication is something we do all day, every day.

Maybe the fact that we communicate all the time means we arrogantly assume we’ll be great at it – but since 35-70% of healthcare litigation claims concern communication1, we need to be more honest with ourselves. We’re not that good at it, and it’s not ok.

It’s not ok to think that communication in healthcare is the same as elsewhere – it isn’t. It involves intimate, private and painful disclosure between relative strangers. And it’s not ok that the teaching we give and receive on communication focuses on breaking bad news to adults. That’s because that stuff is hard. But it’s also a small proportion of the communication we undertake – so we’re not going to talk about that here.

I’m going to talk about how culture shapes communication, communication around procedures, and conversations with children.

Culture

Culture is something we rarely talk about in medicine except perhaps to criticise those who disrupt it (eg people from other specialties). Culture is defined as “ideas, customs and social behaviours” of a particular people or society and in that respect it totally underpins the way we communicate. For example, you may not know that this symbol is offensive in some parts of Germany. It’s literally not ok. It means asshole, which is what you can make of yourself if you don’t think about culture.

In healthcare culture might mean differences in language, cultural norms such as greetings, beliefs around health or death including things like “folk illnesses” – and these embedded concepts shape both how we give and receive information.

You will have seen in practice how people can receive the same sort of news but react totally differently. We have a role in appreciating this and shaping the responses that people have by understanding the role of culture on communication. It’s not ok to impose your own cultural framework; things will go wrong if you do.

Children are usually at the centre of a family and families have their own cultural norms. They carry with them expectations around gender, healthcare, development, function; some of these may be totally unique. When children fall ill or are injured, there is a loss of that family’s normality and a disruption of their expectations and that feeds a sort of grief about what might have been. Something as simple as an ankle sprain, representing an absence from sport for a few weeks, might be trivial to us but represent a huge disruption to a family – making a diagnosis of ankle sprain bad news for them.

Grief stemming from a loss of normality is normal2 and we should strive to understand families in their own context, rather than measuring situations by our own.

So what can we do? Firstly, chill. It’s not ok to try to argue someone into changing their mind – it won’t work. People approach life in different ways – they always have and always will. No matter how strongly you feel about the issue where the difference is arising – like immunisation, for example – venting your frustration at your patients will only isolate them and damage the relationship.

Secondly, think about culture – be humble, flexible, calm, understanding, responsive. It’s not ok to make assumptions – use reflective language and empathy. “I can see you are upset by this diagnosis; how is it going to affect you as a family?” “You know him/her best…” “I can see you weren’t expecting this…”

And where there is a big gap between your cultures, use translators. It’s not ok to use family members – independent translators are more reliable and appropriate3 – but ideally your independent translator should be from the same culture as they can also bring cultural understanding rather than simply language.

It’s not ok to not think about culture; if we are sensitive to its influence, all of our communication will be better.

Communication Around Procedures

It’s not ok to carry out procedures on children without addressing communication needs. Procedures are what children remember about time in hospital; they can feed into future anxiety and concern about healthcare interaction for both the child and their family.

So we can think about three distinct stages: preparation, expectation, explanation4.

Preparation is obvious – it’s not ok to attempt procedures without everything ready, and that means room and equipment, staff and yourself.

We should think about what we expect from both the patient and the procedure. Decide and know what you want from those present. Consider how you expect the patient is going to react – we can all predict the screaming and kicking of a pre-schooler who needs venepuncture, in response to being held rather than physical pain as such. It’s not ok to start without an exit strategy. Who will perform the procedure? How important is it? This will shape your answer to: how many failed attempts will you permit – and what will you do then?

We should think about the explanation phase in two different contexts: to the adults and with the child. It’s helpful to understand what parents/carers are concerned about – most adults will benefit from an explanation of what is actually involved in the procedure. Giving caregivers a specific task reduces apprehension and anxiety: this might be distraction or holding the child in a particular position. You might want to prebrief a play therapist or nurse on how you forsee the procedure being undertaken. Outline your failure strategy to them too, so that they can hold you accountable – will you change operator after two attempts? Do something different? Take a break?

When prebriefing parents and carers I always include some positive messaging about how the child will be taking emotional cues from the parent and how important their positivity is.

Then we need to give the child an explanation – explain the purpose and importance of the procedure, the steps involved and the likely sensations. It’s not ok to use negative imagery; even phrasing such as “a bit sore” will have a nocebo effect of increasing the negative experience. Try instead to be positive in your explanations and normalise the child’s emotions when they are expressed – it is normal to be worried about things you haven’t experienced before, largely because you have no framework within which to manage your expectations. Have you ever bungee jumped? Were you totally calm before the first time?!

It’s not ok to speak figuratively to children – children are extremely literal and do not understand metaphors well. They will often fill in gaps in explanations with ideas far worse than whatever the reality is. Play therapists are very good at bringing calm and order to these situations and may have apps designed to help with explanation.

It’s not ok to take away a child’s sense of control. This is often at the heart of children’s fear so we can create an illusion of control by giving them a choice – “we need to do some blood tests, do you want to lie on the bed or sit on mum’s lap?”

It’s not ok to let good behaviour go unnnoticed. Thank and praise parents afterwards when they have done their best to help things go well – adults are just big kids after all (I like to get the child to give their parent a sticker for bravery!)

Remember that the best predictor of a terrible experience is a previous terrible experience; when children come for procedures we are investing in future attendances too, for them and their whole family, so we really want things to go smoothly.

It’s not ok to carry out procedures on children without addressing communication needs, but if we do address them, we can create a better experience for child and family.

Conversations with Children

It’s not ok to exclude the voice of children in healthcare consultation settings; to fail to hear their voice.

Let’s think about talking to kids. Interestingly, much early literature on communication in paediatric care either ignores the child completely or considers the parent interchangeable with the patient. It’s true that children don’t think in the same way as adults and we don’t communicate in the same way with them.

Of course communication should be age-appropriate with recognition that children inhabit a different world from adults – this is why most paediatric wards and units are decorated to provide familiarity. But children have both cognitive and affective communication needs; that is, both factual and emotional communicative components. We have a moral and ethical obligation to involve children in our communication, both verbal and non-verbal, but we probably aren’t getting this right – and it’s not ok.

It sounds to me as though we have our communication with children upside down. We should be starting with them. We should use the child’s name – introduce yourself, shake hands. I start by asking who other people are in the room (this avoids awkward social faux pas), ask if they can stay while you talk, LISTEN, clarify.

If they appear shy, try whispering. The exception is the tearful toddler – initially ignoring them but demonstrating your benevolence by giving them toys without eye contact can be very helpful. Non-verbal cues are key to this and you will get a huge amount of information in the first few seconds you spend in a child’s presence.

It really takes effort to involve children in our communication – even when we address the child directly, the parent is involved in the response more than half of the time and in almost a third of cases it’s only the adult who responds5,6. The flow of conversation is often broken to deal with parental concerns7. It’s not ok to speak at children, we should try to speak with them. We perceive them incapable of being involved in decision-making, which is unfair and often untrue. There are reports of children as young as four using PCAs for analgesia. They are capable of more than we realise and we may regularly underestimate them.

When we do talk to children we often simply use them to obtain information but we should undertake more holistic communication. We can ask them about fears and concerns, and when considering treatment ask what the child would like to do – how can you help them? Before giving your “here’s your diagnosis and what’s going to happen” speech, get them to articulate their problems or paraphrase so you have their agreement, then discuss your solutions with them. That might sound like: “you told me earlier that you fell over and hurt your arm – I can see this bend in the bone here so I think the bone is broken. There are some things we can do to help you feel better while it heals; we could put it in a plaster cast up your whole arm or use a splint that you can take off when you get in the bath. If you’re not sure we could try the splint and use the plaster if it’s still hurting too much – and of course we can give you some medicine to help with the pain.” Clinicians talk too much anyway89,.

It’s not ok to lie to children and it’s not usually ok to keep secrets from children. Research shows they often know things without being explicitly told, particularly around terminal and chronic illness. Mutual pretence is harmful – we should encourage and foster openness and honesty in our communication with families.

It’s not ok to see all young people as children. Studies suggest those age 12 or over like to be offered time to speak with a healthcare professional alone10. Outline this from the outset – my usual practice is to see you together, then speak to each of you alone, then bring you back together again. Total paternalism is harmful for adolescents but as parents know, they benefit from a shared framework and articulated expectations. Seeing them alone is a great opportunity to undertake a HEADSSS assessment and to talk about some of the things they might not want to mention in front of their parents.

It’s not ok to exclude the voice of children in healthcare consultation settings; to fail to hear their voice, but if we turn the consultation upside down and put the child at the centre, we can create a better experience for children and their families.

So What?

So we’ve talked about a lot of things that just are not ok.

– It’s not ok to not think about culture – be aware of its role in communication and be sensitive to it.

– It’s not ok to carry out procedures on children without addressing communication needs.

– It’s not ok to exclude the voice of children in healthcare consultation settings; to fail to hear their voice.

But it is ok to make mistakes in communication, as long as we learn from them.

We can’t make everything ok, but if we think more deeply about communication with children and the specific communication needs of our paediatric patients…

We can make it better.

Nat

Before you go please don’t forget to…

1.
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2.
Levetown M. Communicating With Children and Families: From Everyday Interactions to Skill in Conveying Distressing Information. PEDIATRICS. 2008;121(5):e1441-e1460. doi: 10.1542/peds.2008-0565
3.
Flores G, Abreu M, Schwartz I, Hill M. The importance of language and culture in pediatric care: case studies from the Latino community. J Pediatr. 2000;137(6):842-848. [PubMed]
4.
Stock A, Hill A, Babl FE. Practical communication guide for paediatric procedures. Emerg Med Australas. 2012;24(6):641-646. doi: 10.1111/j.1742-6723.2012.01611.x
5.
Tates K, Meeuwesen L. “Let Mum have her say”: turntaking in doctor–parent–child communication. Patient Education and Counseling. 2000;40(2):151-162. doi: 10.1016/s0738-3991(99)00075-0 [Source]
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Tates K, Meeuwesen L. Doctor–parent–child communication. A (re)view of the literature. Social Science & Medicine. 2001;52(6):839-851. doi: 10.1016/s0277-9536(00)00193-3 [Source]
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Nobile C, Drotar D. Research on the quality of parent-provider communication in pediatric care: implications and recommendations. J Dev Behav Pediatr. 2003;24(4):279-290. [PubMed]
8.
McDonagh JR, Elliott TB, Engelberg RA, et al. Family satisfaction with family conferences about end-of-life care in the intensive care unit: Increased proportion of family speech is associated with increased satisfaction*. Critical Care Medicine. 2004;32(7):1484-1488. doi: 10.1097/01.ccm.0000127262.16690.65
9.
Wissow L, Roter D, Bauman L, et al. Patient-provider communication during the emergency department care of children with asthma. The National Cooperative Inner-City Asthma Study, National Institute of Allergy and Infectious Diseases, NIH, Bethesda, MD. Med Care. 1998;36(10):1439-1450. [PubMed]
10.
Hsiao JL, Evan EE, Zeltzer LK. Parent and child perspectives on physician communication in pediatric palliative care. PAX. 2007;5(04). doi: 10.1017/s1478951507000557

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