All the King’s Horses… difficult conversations with children in critical care. St.Emlyn’s.

All the king’s horses and all the king’s men
Couldn’t put Humpty together again¹.

This blog tackles a really challenging topic in our theme around communication and wellbeing^2–4. How do we approach difficult conversations with children in critical care and emergency situations.  This blog supports the podcast published in October 2016. Click on the link to listen to Liz⁵ and Iain.

Talk to any clinician in critical care and they are likely to tell you that the most painful or difficult cases are often the ones that involve children. Either a child dying suddenly or having to tell children of any age their parent, sibling, friend, grandparent is critically ill, has a new diagnosis or has died.

Can We Protect Children?

Our first inclination is to protect children from the horrors of the world. Shelter them in some protective bay until they reach some ‘magical’ age where they will be deemed to be ready for all the ‘badness’ of the world. This is a delusion for adults. Life with all of its ebbs and flows will expose children to a range of emotions and situations that we cannot, and will never be able to protect them from. Whether it is Steve Irwin dying from a Stingray barb, their favourite band breaking up because someone has a drug addiction, parents separating or not being invited to a birthday party. Children are exposed to developmental losses from a tiny age when we, as parents decide they are too old to sleep with a pacifier, too old to suck their thumb or walk around with Teddy. Many a child is screaming at the childcare/nursery gate because they would prefer to stay home. These are all loss events for children they just aren’t interpreted that way by adults.

The best way for us to protect and build resilience in children is to teach them from an early age that:

• a range of emotions is normal
• life will have challenges with great highs and great lows
• they have the capacity to survive these life events surrounded by a community of people who love and care for them.

This is what we should be aiming for. This blog and the accompanying podcast will give you a brief guideline on how to talk to children in crisis whatever the situation

How Do We Engage Children in Difficult Conversations in Critical Care?

Because children belong to families and households at some point they are likely to be exposed to a trauma either big (the family is in an MVA) or small (Dad almost amputates his finger chopping down the tree). Children often end up in waiting rooms or bedside because there was no alternative then to bring them at the time and because it is their rightful place in the family to remain engaged and informed.

Every sibling that comes through the door of our PICU I am told they are either ‘very sensitive’ or ‘very intelligent’ so it is probably best they are not informed their sibling is critically ill or dying. If children are very sensitive or intelligent, we have a greater need to bring them in to the hospital to be with their parents and family. Can you imagine knowing your entire family was in a hospital in crisis and suspecting that your sibling was dying, or never coming home and fearing that you have been left behind because maybe you are to blame? This is the risk. Often, in a crisis, because everyone wants to support parents, siblings are frequently left in the worst most vulnerable times of their lives with someone they don’t know well which only adds to their bewilderment. Often exclusion of children at these painful times has the complete opposite effect than what well intentioned adults were hoping for.

Siblings of any age who are brought to the hospital and have a clear explanation of what is happening though at times may become distressed initially depending on their developmental age, often settle quickly and either sit quietly with the adults or become bored and ask to go outside or get food from the vending machine. All very normal reactions developmentally.

How we speak to children will depend on their age chronologically though more important their developmental understandings. Some 4 year olds will be satisfied to hear Grandma’s heart stopped working so we had to put them on a big breathing machine. Other 4 year olds will waltz straight in, point to every cannula, tube, medication and screen and want to know what is it and what it is doing.

There is, and there never will be a simple flow chart for managing these difficult conversations but there are some generic principles that we should all consider. Children will benefit from knowingn what’s going on and you may want to remember the following when you have to have the difficult conversation. Think about not just about the information you want to get across but also about how it may make them feel and how it fits into their understanding of the world at their developmental stage.

Here is a brief summary of things to consider talking to children about in the critical care environment:

1. They were not responsible. Even if they were not on scene and not involved it is important to say this out loud. Children are narcissistic by nature and the world revolves around them. Research and evidence suggest that children write themselves into all major life events until they become adolescents. State it and encourage parents to keep reinforcing the message. Sometimes children have left gates open, started fires etc. In this instance let them know it is the responsibility of adults to supervise children and accidents happen. Most adults are eager to reinforce this message
2. Offer assurance around contagion . Children often worry about catching illness. Even after an MVA small children may only understand that someone is ‘sick’. Assure kids they cannot catch cancer, myocardial infarcts, the need to be on a ventilator etc. If it is meningitis or something that they may from a public health point of view need to have medication prophylactically explain what they will have and why. Needles terrify children so if they do not need an injection say this first.
3. Is it painful?. Children fear pain and will worry if their loved person is in pain. Always let them know if someone is NOT in pain. Sometimes when people die or are injured they make lots of noise either voluntary or involuntary. Explain these noises to children so they are not alarmed. If there is pain talk to the child about what you are going to do to stop or ease the pain, especially if it is the child in pain.   “I know this really hurts and I am going to give you this to help take it away”
4. Keep explanations short and sharp. Often when adults are anxious we go into too much detail for children and kids get bored before you get to the main point. Start with the most important part. “Remember how you and dad were fishing and the boat tipped over? Dad swallowed too much water and it went into his lung which is affecting his ability to breath. He didn’t get enough air into his brain. This is making us very worried” “I can see you are scared this is how we are going to stop the bleeding”
5. Ask children what they know. Adults are forever telling themselves that children ‘don’t know’ what is going on. Often as soon as they leave the room the child will turn to me and ask directly “am I going to die”. Children are not stupid. They are highly attuned to their parents and family life. Kids know when their parents are fighting, when their mum is moody and they regulate themselves according – either to manipulate the situation or to be silent. Children are often like little mirrors they reflect what they say. If it looks like all the adults are terrified and holding it in so will they. This is not helpful for them or the adults in their lives. Ask children if they have any what they understand and if they have any questions. If a child is blaming themselves this is when we may find out.
6. Children are concrete thinkers, use the correct terminology. In an effort to protect children and simplify things often people will say ‘dad is really sick’, ‘your brother is really sick’. This is the same language we use when children have a tummy bug, about which you can learn more from their website, ear ache or a common cold. We do not want this phrase attached to general illness or children will fear everything in the future. Name it for what it is. ‘When your brother got run over by the car it squashed his tummy so now his liver and kidney are not working very well. This means he can’t pee and he can’t clean his blood. This is why we are giving him these medicines and taking these pictures’. They will connect what is happening directly to the accident and not what they imagined was the best kick to the stomach known to mankind when they were playing Ninja Turtles earlier in the morning.
7. Before you take a child into a room prepare them. Go through the senses. What will they see, hear, touch and smell. “When you walk in you are going to see mum lying on a bed. There is a bit of blood and she has a big bruise on her head. There are two tubes in her nose one is to help her breath the other is to give her food. She looks like she is asleep but she is not. So she doesn’t get scared and doesn’t have any pain we have given her lots of medicine (not drugs that often means heroin) to keep her still and eyes shut. You can talk to her and touch her but she won’t be able to open her eyes”.
8. What if you have to talk about Death? Children under the age of 10 to 12 years often struggle to conceptualise the permanence of death and so may not fear it the way older children and adults do. Let’s face it most adults struggle to talk about and articulate their views on death and what happens next so we cannot expect children to understand. Many younger children will ask if someone is going to die without being able to attach what that may mean for their loved one, their family or themselves. Children who have been exposed to death before may link these events. Sometimes children will ask if their brother is going to be “put down like Harvey the dog”. Concrete thinkers. If you have to have a serious conversation with children it is not your job to do it directly unless the family ask you to. Even if they family ask you to gently assure them they have the skills to do this and resource them to have the conversation. Help them practice the conversation and if they are anxious sit in the room while they talk to their children gently helping if they are struggling. We teach children about stranger danger from birth then in the most frightening and intimate moments of their lives we want a stranger to do the talk. Resource families to leave the hospital empowered to keep these conversations going which is what will need to happen. If the family want to be told together pitch your language at the youngest child first.
9. Prepare yourself, the environment and what you are going to say. If you are going to give some very difficult news and children are present take a moment to prepare yourself. What do you want to say and how do you want to say it? Find a private room. When you walk in do not make a joke or try and jovial the situation up for the children this is just a confusing message. Go in with a grave face. Sit down. If you haven’t met everyone introduce yourself. Deep breath and then straight to the point “I am afraid I have some very sad news. We all know that dad fell off the ladder onto the hard concrete and hit his head. Our brain is quite soft in there and dad’s brain got very injured with a big crack and lots of bleeding. That made dad stop breathing and even though mum did a really, really good job of trying to help him breath and so did the ambulance/paramedics his brain was too hurt to be fixed. When your brain doesn’t work you cannot live because your brain controls all of your body so dad is going to die. He isn’t scared and he isn’t in pain. This is going to make everyone really sad and mum and everyone will cry and cry and that is okay. Because we can’t make dad better we are going to take him off all those machines. We think his heart will stop straight away because his brain is no longer working and he will die. He will still look like dad. He won’t go hard or cold straight away. You will have time to cuddle and kiss him. I am very sorry. ”. Even though you may be feeling really sad yourself please do not run away. Stay. Sit with the sorrow. See if there are any questions. If your eyes well, if you cry yourself this will be of comfort to the family and not something to fear or be ashamed of. If you don’t feel anything that is okay too.
10. Children Break Your Heart. Despite doing this job for a very long time statements siblings continue to be the most painful part of the job. They are just so brutally honest. “do you think my sister isn’t dead yet because the angels are sewing their wings?”. “if I promise to be really good and not be naughty anymore do you think they would live?”. “I am not going to have anyone to play with now am I?”. Try and remind yourself that the ONLY reason you are having these painful conversations and bearing witness to this is because we are assisting children and their families to survive the worst day of their lives. When they look back on the experience they will remember people caring, being kind, and keeping them involved. If you cry, if it stays with you for several days you are just human. Nurse the pain. Be gentle with yourself.   Allow yourself time to recover.
11. Memory Making. We involve children in deaths every day at our work. They usually have wonderful insights and ideas about the whole process. They love being involved in memory making, rubbing in creams and helping to wash bodies. If you work in an adult hospital you can still facilitate these important rituals. Particularly if the death was sudden. Ask the adults if they would like the kids to have a handprint with their loved one. Just get a piece of blank paper from the photocopier machine an inkpad and cover dad’s hand with ink and make a handprint then do the same for the children. A small and meaningful task that may become a treasured item in the future. Do let the coroner know though if the body has a green foot and a pink foot and why.

It would be wonderful if children could be impacted by life events, however it is not the reality. The adults in your critical care will be terrified of the potential long term impact of children being exposed to great sadness and tragedy. Please assure them that children are hurt and changed by these life events however there is no evidence to suggest they are ‘damaged’. Families are the long term survivors of these events. Taking a few extra minutes to involve and assure both adults and children can have enormous benefits that will last long after we have forgotten. Also, just like adults, not every child needs or benefits from counselling. Children have much to teach us about life, death and crisis. Stay present. Have conversations. Make a difference and then gently nurse yourself back to life afterwards. These can be the cases that stay with you. It may be good to talk as a team or amongst yourselves to share the sadness before going home or moving on to the next patient. Take care of yourselves always

vb

Liz

@LizCrowe2

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