Be honest. Don’t say it’s not going to hurt if it will as this undermines the child’s trust in you.
Explain in simple terms, but not too simple. Choose a level of detail that is suitable for the child’s age. Pictures can help to explain things to people of all ages and role play with puppets can be helpful for younger children. It can be difficult to get the level of detail in your explanations right. You don’t want to oversimplify what you are saying as this can be enormously frustrating for children as they hate being patronised but you do want them to understand clearly what you are telling them. Establishing their level of understanding first can be very helpful in judging what sort of explanation will be appropriate.
Take the child seriously. It is really important for children of all ages to feel that they are important and worth listening to. Listen to what they have to tell you and take them seriously. Try to talk with them, not at them and avoid being patronising.
Move to the child’s level. If you’re both sitting on chairs in clinic then this is easier; if not, then crouch down so that you are talking to them at their own level, or even sit down on the floor.
Sit them nearest to you. Having the child rather than their parent in the seat nearest to you makes it clear who is the focus of the consultation. You wouldn’t ever see an adult patient and sit the relative next to you and the patient further away so don’t do it with children either. Very young children may not be able to cope with this due to a fear of strangers but children from 3 years and older should be comfortable with this set-up.
Eye contact. Look at the child and address questions directly to them, rather than talking across them to their parent.
Focus on the child first. Go to collect them from the waiting room and address the child first, introducing yourself. You can then start your consultation by asking the child who they have brought with them to see you. This puts the focus immediately on them rather than their parents or carers.
Be flexible. Knowing a child’s age will give you a rough idea of what to expect but children do vary enormously in terms of their level of maturity and how confident they are at expressing themselves. Be alert to the child’s body language and tone of voice and if your initial approach is not working, try something different.
Be pleased to see them. It doesn’t matter how busy or stressed you are, it is vital that the child feels that you have time and are happy to see them. If not, then they will not feel welcome and may not have the confidence to speak to you at all. A genuinely warm welcome, a smile and using their first name when greeting them can help the child to feel comfortable.
Begin with something easy to talk about. Launching straight into what the problem is doesn’t help children to feel like talking. Try beginning with a non-threatening topic first. This will vary depending on the age of the child and what is happening for them in their life at the time – school can be an obvious topic that seems safe to talk about but if they have missed a lot of school because of their health, the child may not want to talk to you about it. Look at the age-specific examples below but also watch what their response is and change the topic if you are getting nowhere.
Don’t forget to briefly acknowledge any other children. Children may often come to consultations with their siblings. It is important to briefly greet any other children too and provide appropriate toys for them to play with to avoid distraction. Seeing their older sibling interacting with you can help younger children to have the confidence to speak to you.
Top TipHow to communicate with a baby or toddler
Don’t forget that even before children are able to talk, they can still be very expressive and can understand some of what you are saying (the tone of conversation if not all of the content). Babies and toddlers will often be wary of new people and may be very shy or upset.
Talk to the child first. Although they will not be able to contribute to giving you a history of their illness, it is important to talk to the child initially to help to establish their trust and also because parents find it very disconcerting if you completely ignore their child.
Make a positive comment about the child. With babies and toddlers, it can be helpful to greet them at the very beginning of the consultation and briefly comment on a toy they have with them or an item of clothing. For example, you can point at a cuddly toy they may have and ask ‘Who’s this? He looks like a very friendly teddy bear’ or ‘Wow, I love your bright blue shoes’. You are unlikely to get any response from the child but this is not the aim; you are just trying to make them more comfortable and to demonstrate to their parents that you really are child centred. Keep it brief before moving on to discussion with the parents and providing appropriate toys for the child to play with whilst you do this.
Top Tip
‘Examine’ a toy or parent first. Very young children have a short attention span and learn through playing. To make examination less threatening, it can be helpful to examine them on their parent’s lap and to start by examining their parent or cuddly toy first and engage the child in helping you to do so. When you start examining the child, start by placing the stethoscope on their hand first as this is much less threatening than immediately placing it on their chest.
Try whispering. Sometimes, even with the greatest efforts on your part a young child will begin to cry as soon as you try to examine them. You can try going back to examining the parent or cuddly toy a little more first or sometimes whispering or talking very quietly to them can help as they become so fixed on trying to hear what you are saying that they settle a little and become less fearful.
How to communicate with an infant school child (4–6 years)
By the time a child reaches school age, they will often be able to contribute to the consultation and give some of the history for themselves. There can be a wide variation in maturity, though, and whilst some children of this age may be very chatty and confident, others may say virtually nothing.
Start with easy topics such as what they like to do when they’re not at school, what they were playing with in the waiting room or what their favourite television programme is; this can be helpful in building their trust and encouraging them to talk. It will also help you to establish how much the child is likely to be able to relay details of the history themselves.
Try asking the child what’s happening first. You can start by asking the child an open question about why they have come to see you and try to gain some of the basic history from them. In all cases you probably need to clarify some of the details with the parents and how soon you do this will depend on how confident the child is about telling you what is going on themselves.
Acknowledge the child’s contribution before talking with parents. When switching to talking to their parents instead, the child needs to feel that their input has been important and that you are not ignoring what they have told you. Helpful expressions might include ‘Thank you for telling me that, I’d like to hear what your mum/dad thinks about all this too’.
Don’t forget about the child. Once you have started talking to the parent, don’t forget to occasionally direct questions to the child too rather than simply taking the rest of the history from the parent.
Clarify words and phrases used. It can be helpful to clarify with the parents some of the language that their child uses for certain pieces of anatomy or bodily functions and use these words yourself when talking to the child.
How to communicate with a school-age child (7–12 years)
By this age many children will be able to tell you most of their medical history themselves. Sitting the child on the chair nearest to you and their parent on the one furthest away helps to show who you expect to be doing most of the talking. Many children of this age will respond well to being treated more like an adult; consider shaking their hand as they come in first and then their parent’s hand too as you introduce yourself.
Find out what the child wants. As part of taking a history from the child, it is important to find out more about how they feel about their illness and what they would like to be done about it. One way of finding out more about the child’s hopes and fears can be by asking a question such as ‘If I could magically grant you three wishes, what would you wish for?’ or ‘If we could change one thing about your illness, what would it be?’. This can help to establish what is important for that child, which may be being able to play football with their friends or not having to take medications whilst they are at school.
Top Tip
Work on a solution together. Once you have established what is important to them, you can then work on coming up with a solution together. You can try asking things like ‘What do you think we should do about this?’ or ‘What can we do together to make this happen?’. Involving the child in decision making about treatment options is important for helping them to feel in control of what is happening.
Top TipHow to communicate with a teenager
For more information about specific issues affecting teenagers, such as sexual and mental health, see Chapter 8 – Teenagers.
Consultations with teenagers can be some of the most challenging to get right and doctors sometimes feel quite intimidated at the prospect of trying to talk to a teenager. Adolescence is a time of many changes both physically and behaviourally and these stages of development happen at different ages for different people. Recent research into the developing brain has found that certain areas of the brain (such as the prefrontal cortex) undergo significant changes during adolescence (Mills et al. 2012). The prefrontal cortex is involved in self-awareness, inhibition (particularly of risk-taking behaviour) and our ability to understand other people and how their perspectives might differ from our own. Understanding this can help you to realise that some of the stereotypical behaviours associated with adolescence, such as risk taking or failing to see things from someone else’s perspective, are actually a normal part of neurodevelopment.
Adolescence is also a time of forming an adult personality and establishing more independence from parents and caregivers. Part of this process often involves rebellion of some kind or challenging of authority figures in order to assert independence. This can be particularly problematic for teenagers who are unwell and as a consequence have become more dependent on others for care.
Some general rules that may help during discussions with teenagers include the following.
Be yourself. Honesty and openness from doctors can be enormously reassuring for teenagers so being genuine can really help to establish trust. This means, whatever you do, don’t try to be cool; it will not go down well and you will probably come across as false or difficult to take seriously.
Be interested in them as a person. Start off the consultation by asking about their life (school, personal interests, part-time jobs, etc.) and be genuinely interested in what they have to say. Listen actively and follow up with further questions about things that they have mentioned, picking up on cues within what they say to talk more about topics they enjoy. This initial conversation can be useful in redressing the balance of power by allowing them to tell you about something you know nothing about. For example, if they mention something that you have never heard of, ask them more about it and have a short conversation about whatever it is.
Don’t tell, ask. In our desire to help and anxiety about filling awkward silences, it can be all too easy for a consultation to turn into you giving a mini-lecture. This unsolicited advice can be resented as it makes the teenager feel that you are being patronising and don’t care about what they have to say. Telling people what to do rarely changes their behaviour; instead, ask questions to find out more about how their illness is affecting them, what they are hoping to be able to achieve and what frustrations they have with the way things currently are. This can help you to come up with a management plan based on a shared agreement rather than simply a list of things coming from you that is likely to be ignored. Ask questions like ‘If you could change one thing about your illness, what would it be?’, ‘How can we work together to achieve that?’ and ‘What annoys you about your illness/treatment?’ to find out what they want.
Empower them to make changes. Teenagers can be far more resourceful and creative than adults and are often able to find novel solutions to problems that you would never have thought of yourself. Encouraging them to come up with their own ideas for how to deal with their illness and its treatment can allow them to make meaningful changes.
Ask, don’t assume you know. Poor compliance with medications and treatments is a common problem when dealing with adolescent patients and there are many possible underlying reasons. It may be that the patient is finding it difficult to remember to take their medication or that it is a deliberate choice not to. This is not just a teenage problem; many adults also have trouble complying with medications and acknowledging this can be helpful. They may simply have trouble remembering to take their medications and working through ideas with them for how they might remember would be helpful. Maybe they are refusing to take their medication as a way of rebelling against authority figures (you and their parents) or they don’t see any possible negative consequences of not taking it. It may also be that they are concerned about the side-effects of medications and what to do if these happen and they want an explanation of these and where to go for help if they do occur.
Offer information and choices. Provide teenagers with plenty of information about the options that are available to them and explain the reasons why you think a particular medication or treatment may be helpful for them. You can suggest a list of possible options of what to do and ask them which one they would like. This may be offering a choice of medications with different side-effect profiles, discussing what would happen if no treatment is started or agreeing to a trial period of a particular treatment before you meet again to see how it is working. This allows them to make informed decisions about their own health. For more about consent see Consent section later in this chapter and Chapter 8 – Teenagers.
Focus on them, not on their illness. Try to keep the consultation focused on them as an individual and ways in which their illness affects their life. Telling a teenager that they need to take a particular medication because it says so in a guideline or protocol is not helpful. Talk instead about how certain treatments or medications could alter the symptoms they have told you about and help them to get around some of the problems that they have mentioned. Avoid making assumptions about how their illness limits them if possible and how they view themselves. It may be that they see themselves as being very well (despite your own perception of their health) and their illness or DISABILITY has a minimal impact on them.
Be totally non-judgemental. It can be very difficult for teenagers to open up about things that they find embarrassing and to talk about behaviours that they think are going to get them into trouble. Be aware of your own facial expressions and make sure that you don’t appear shocked or disgusted by what they are telling you as this will rapidly discourage them from talking. Normalising certain behaviours can sometimes be a useful way of encouraging them to talk; for example, ‘A lot of people your age drink alcohol; do any of your friends drink?’. Starting by asking about friends first can be useful before asking them about themselves.
See them without their parents present. It is important to give teenagers an opportunity to talk to you independently, without their parents present. They value privacy and may feel able to share things with you that they would not be comfortable saying if their parents were present. It can be helpful to explain this process at the beginning of the consultation with teenagers and point out that this is part of your normal practice so that parents understand why they are being asked to leave the room. Talking to parents and teenagers about confidentiality is also important so that they know what to expect. Explain that anything that the teenager tells you will remain in confidence unless you are worried that they are being harmed in some way, in which case you are obliged to share it with some other people who need to know (for example, with other doctors or their parents) but that you will explain to the teenager exactly what you are telling to whom before you do so. After you have talked to the teenager on their own, it can be useful to agree with them what you are going to share with their parents and what you are not. You can encourage teenagers to share information about what you have discussed with their parents but must never disclose information unless you have their permission. If you have concerns about the teenager’s welfare, it can be helpful to discuss with senior colleagues or a named child protection nurse or doctor to get their advice before deciding what to disclose to parents.
Be aware of your own feelings. It is natural within conversations to subconsciously mirror certain behaviour and body language. This can be very helpful for establishing rapport and is entirely appropriate at times but there are certain instances when it can be unhelpful. For example, if a teenager is very angry or hostile it can be difficult to remain warm and engaged in your own behaviour because their anger can invoke a lot of angry feelings in you. Awareness of your own feelings and body language can be helpful when a consultation is not going well. Similarly, if a teenager is trying to avoid talking about a certain issue you might pick up on these cues and avoid asking these important questions. Be brave and have the courage to ask about difficult subjects.
If the conversation is going badly, acknowledge it and apologise. Sometimes, a consultation can start badly and then it feels difficult to get things back on track. Sometimes acknowledging this by talking about it can help rescue a conversation that is not going well. For example, saying something like ‘I’m sorry, we seem to have got off to a bad start, I’m talking too much and really I’m interested to hear what you have to say’. This can make you seem more human and approachable by admitting your mistake and can allow a renewed attempt to have a useful conversation.
How to communicate with a child using alternative communication
For many children with learning difficulties, physical or sensory IMPAIRMENT, communication with others can be difficult, but it is crucial that they are given the support to do so. Children who have difficulty speaking may use alternative and augmentative communication (AAC). AAC is the overarching term used to describe a number of different ways of communicating.
Communication charts and symbol boards. The child will point at different symbols to communicate or use letter boards to spell out individual words in some cases.
Electronic equipment such as voice synthesisers (sometimes known as voice output communication aids).
Signing, gesture or symbol-based languages.
If you have no previous experience of working with people who use AAC to communicate then it can feel quite daunting at first knowing what to do. There are learning modules available on the Scope website (www.scope.org.uk) about AAC. Another useful resource is Other Ways of Speaking, a booklet about communicating with children who are using AAC. It is published by the Communication Trust and available to download free from their website (www.thecommunicationtrust.org.uk). The following pieces of advice are adapted from these two resources.
Admit if you are uncertain. It can be very helpful to tell the child and their parents if this is the first time you have met someone who uses AAC to communicate. This will allow them to show you their method of communicating at the beginning and make the whole process much easier.
Establish ‘yes’ and ‘no’. Ask at the beginning of the consultation how the child communicates ‘yes’ and ‘no’. This may be different from the nod and shake of the head that you were expecting. For example, a child may smile for ‘yes’ and look down for ‘no’.
Be patient. It is important to give children time to respond to your question as it may take them much longer than other people to be able to answer. It is frustrating if you ask them a question and then turn to their parent for an answer rather than giving them time to answer for themselves.
Pick up non-verbal cues. Facial expressions and body language can be even more important in communicating a child’s feelings if they are using AAC so pay attention to these.
Talk at eye level. Just as you would with any other child, get down to their level and look at them when you are talking to them, not at their communication aid or their carers.
Don’t talk about the child. In exactly the same way as you would in a consultation with any other child, don’t simply talk about them with their parents without acknowledging the fact that you are doing this, e.g. ‘I’d like to hear what your dad has to say about things too’.
Clarify if you don’t understand. It is important not to pretend that you have understood what the child is trying to tell you if you haven’t. Give them the opportunity to clarify what they meant so that you can understand them properly.
Allow plenty of time. It can take a lot longer to have conversations with children using AAC so try to set aside plenty of time. If you are short on time, then explain this at the beginning of the consultation and agree to come back later.
Summarise. At the end of the conversation, summarise what you have talked about and check that you have interpreted everything correctly. Give the child time to clarify any misunderstandings.
How to communicate with anxious parents
Many doctors will say that before they became parents themselves, they never really appreciated quite how scary it is when your child is unwell, even when you are armed with far more knowledge than the general population. Parents tend to be much more anxious about their child’s health than they would be about their own because of the responsibility of having to interpret how the child is feeling, fear of being a bad parent if they don’t seek help early and sometimes because of social factors (such as grandparents expressing concern or being unsupported at home).
Whilst it is certainly true that some people are more prone to worrying than others, it is important to avoid simply labelling someone as an ‘anxious parent’ at your first meeting. This can be really unhelpful for them, their child and for you for the following reasons.
Parents still worried. Even if you offer reassurance that their child is well, unless you have addressed their specific concerns the parents may still leave feeling just as anxious as they did before.
Parents reluctant to return. If you have told them that their child is fine and not seemed to appreciate why they were concerned then the parents may assume that they were overreacting and will not seek help again if the child becomes more unwell, meaning that the child does not get medical attention when they really need it.
You may miss important clinical information. If you have already convinced yourself that there is nothing really wrong with the child and the parent is simply an ‘anxious parent’, you may overlook vital clues in the history that point towards a particular pathology.
They may lose trust in you. Sometimes, particularly if you see a child very early on in the natural progression of an illness, they will appear well but may subsequently deteriorate. This can undermine your own confidence in your diagnostic abilities and leave you wondering if you missed something. In reality, it is impossible to predict what will happen sometimes and it may be that your decision was entirely reasonable based on the child’s condition at that time. The problem is that parents will probably not see it that way, particularly if they felt you hadn’t properly listened to them at the initial consultation or explained that you were happy to see them again if things changed.
Avoiding the trap of dismissing parents as just being ‘anxious’ is half the battle. Once you have managed that, here are some suggestions for making sure that you fully address their concerns.
Find out the social context. Are they isolated and lacking support? Do they have grandparents or friends interfering and telling them that their child is very unwell? Has someone in their family recently died or been given a serious diagnosis? All these things can contribute to raised anxiety levels.
Ask about specific concerns. It can be useful to address the issue outright rather than skirting around it. Obviously, this requires you to phrase things well, as ‘Why are you worried?’ doesn’t sound very supportive and can make people defensive. Instead, ask something like ‘Is there anything in particular that you’re worried is going on here?’. It’s amazing what you can find out by asking this question. Parents will often feel reluctant to volunteer their thoughts as they think that you as the doctor are supposed to be the one making a diagnosis, but asking directly gives them permission to tell you. Without addressing these specifics, you are unable to really provide any reassurance that is helpful.
Explain your reasoning. Talking parents through the specifics of why you have decided to do what you are doing can help a lot. If nothing else, then it shows them that you are actually taking time to think about what to do, which is reassuring in itself. It can also be empowering for them to understand some of the factors behind the decision that you are making and shows that you have listened to what they have told you.
Don’t forget your safety net. It is important that parents know when to come back for help so be as specific as you can. For example, ‘If your child is getting more unwell, come back’ isn’t helpful as they thought that the child was unwell now but you think they are safe to go home. This advice is only helpful if it is backed up with some specific examples and a time frame too; for example, ‘If he becomes drowsy, isn’t wetting as many nappies as normal or his symptoms aren’t improving in the next two or three days then come back’.
How to communicate with an expert parent or patient
Children with long-term conditions and their parents often become experts on their particular condition. In fact, they may have more knowledge on the subject than you do, particularly if their condition is a rare one. Given the amount of information now available on the internet, it is possible for patients to be very well informed before they come to see the doctor. This can be a difficult relationship to manage as a junior doctor as you may feel the need to prove yourself and your level of knowledge to the patient and their parents in an attempt to reassure yourself about your own level of competence.
Acknowledge their expertise. It is important to acknowledge how much they know about the topic, not just by saying that but also with your actions and the way that you run the consultation.
Don’t assume expertise. You may come across parents who are healthcare professionals or scientists and feel that you should talk to them differently from other parents. However, it may be the case that they don’t know much about this particular area and what they do know is likely to be forgotten in the stressful context of being the parent of a child who is unwell. They may be too embarrassed to ask for clarification of things that they don’t understand as they feel that they ought to know. It can be helpful to acknowledge their job but explain that you are going to start out by treating them just the same as any other parent. This can be an enormous relief for some parents as it allows them to be free of their healthcare role and concentrate solely on being a parent.
Find out what they want from you. Given that they are much more informed about their condition, it is unlikely that these patients are coming to you for a diagnosis or for basic information about their disease and you will need to take a different approach. Starting the consultation with something like ‘What can I help you with today?’ can be a good way of finding out what they want to discuss with you.
Admit the limits of your own knowledge. You undermine the patient’s trust in you and can end up looking very foolish if you pretend to know more than you actually do. Fully admit when you do not know the answer, but look into ways of helping the patient despite this.
Offer to find out more. You need to admit when you don’t know the answer yourself but can offer to look up more information in the medical literature and discuss with colleagues with specialist expertise. Establish when and how you will communicate this information to them; it may be that arranging a follow-up consultation is the most useful way of doing this.
Find out their concerns and hopes. This is important in allowing you to find out relevant information. It’s all very well you looking up the latest research on medications that reduce the number of hospital admissions but if all your patient is worried about is the side-effect profiles then you will not be able to help them. It also allows the conversation to still be a useful one for the patient and their parents in giving them space to discuss how their illness is affecting their life and what they were hoping to be able to change. Even if you don’t have the relevant knowledge at that time, you can use your listening skills to make the consultation a success.
Breaking bad news
When people think of breaking bad news, their initial thought is often of parents being told that their child has died. In reality, this shouldn’t be something you have to do as a junior member of the team. However, there are so many other types of bad news that we have to break to parents and sometimes the challenge can be recognising it as bad news in the first place.
We become very accustomed to being around people who are ill, we know a lot about the symptoms of diseases and their treatment and come across great examples of people with long-term conditions who are able to manage their illness so that it has a minimal impact on their life. This can sometimes make us a little blind to how it feels for parents to be told that their child has a condition that they know nothing about. Or even worse, being told that their child has a condition that they have seen someone close to them die of (for example, parents are sometimes terrified when you tell them that their child has pneumonia as they may have had an elderly relative who died of pneumonia and they think that their child is going to die too).
‘Bad news’ isn’t just telling someone about a cancer diagnosis or death; it is a very subjective reaction to a wide variety of topics so always be alert to how a child and parent are reacting to what you are telling them. Try to mirror how they are reacting – you don’t want to be talking very gravely about something that they hadn’t really thought was an issue or being cheerful and matter of fact about something which they think is terrible news.
There are some pieces of bad news that should only really be broken to parents by a senior member of the team with experience in doing so. Do not tell the parents yourself before consulting with your senior colleagues in the following instances.
Inherited conditions. This can be associated with a lot of guilt for some parents that they have passed on an illness to their child. It can also have implications for any further children they were planning to have as well as their child’s ability to have a family of their own.
Developmental delay or disability. It can be very distressing for parents to hear that their child has some form of IMPAIRMENT or DEVELOPMENTAL DELAY. The way in which the news is broken is very important and this must be done sensitively and the person telling them must know enough about the condition to be able to answer their questions. Scope, a charity that works with disabled children and their families, has developed guidance on how news should be broken to parents about their child having additional needs (whether that be a physical or sensory impairment, learning or behavioural difficulties). Its ‘Right from the Start’ best practice guidelines can be found on its website (www.scope.org.uk).
Long-term conditions. Telling a child and their parents that they have an illness that will be with them for the rest of their life is a big deal. For example, to you asthma and diabetes may be easily treatable conditions and not something to be overly worried about. However, for the child and the parent this is something that will affect the entirety of the rest of their lives: attending clinic appointments, remembering to take medications and worrying about what school friends will think.
Needing an operation. This is a scary thing for a parent and child to be told. There are lots of uncertainties, they may be worried about pain or complications of surgery, whether or not it will work, who the surgeon will be. It takes an enormous amount of trust in the medical team from the parent and child to undergo a surgical procedure, no matter how minor. They are totally reliant on the skills of people, some of whom they will never have met who are going to knock them unconscious and take a scalpel to their skin. This is a daunting prospect for any child or parent.
Any problem that is irreversible. This can be anything from finding that the child has congenital deafness to brain damage after a head injury.
The following are also examples of ‘bad news’ but it may be appropriate for you to discuss these with parents yourself.
Delayed investigations/treatment. For you, this might seem like a minor inconvenience, but telling a family that a planned investigation or treatment is going to be delayed can actually be received as terrible news. The child may have been feeling anxious about what is going to happen and this prolongs their feeling of apprehension. The parents might be concerned about how this will impact on the child’s health. Will it damage their child’s health to delay the treatment? Could more be done if the results of an investigation are available sooner? It also makes it very difficult for parents who have other children. They may need to leave the hospital to collect their other children from school and will feel torn between their responsibility to their other children and the child who is in hospital.
Being told that your new baby is anything less than perfect. The birth of a new baby is an incredibly emotional time for parents. Their expectation is that this new baby is going to be completely normal and healthy so if this is not the case then this is very bad news (even if the problem seems minor to you). If the baby is unwell and has to be separated from the mother to receive treatment, this separation can cause a lot of distress to the mother. A helpful source of advice and support for parents of premature and sick babies is the Best Beginnings charity (www.bestbeginnings.org.uk).
Being told that your child needs to be admitted to hospital. This is stressful news, regardless of the cause. Hospitals are not nice places to be and the very fact that the child is unwell enough to need admission can cause worry. Also, the child being admitted to the ward can cause major disruption to the parents’ lives and that of their other children.
Anything that is badly timed or will restrict future activities. The news itself may be bad because of its timing, for example, that the treatment for an illness is going to clash with important exams for the child or that as a result of their discovered colour blindness, a teenager will have to give up their dream of becoming a pilot.
Having to break bad news to parents is something that most doctors dread but is so important to get right. Whole books have been written on this topic and it is a skill that takes a lot of practice. Charities such as Child Bereavement UK run courses on breaking bad news, providing support for families who have been bereaved or who have children with life-limiting conditions or complex needs. This charity also has lots of useful learning resources on its website and a support helpline for professionals and for family members (www.childbereavementuk.org).
Here are some suggestions for making sure that you break the bad news well.
Talk to the parents without the child present first. This is different from normal consultations when you talk with the parents and the child simultaneously. However, it is important to give the parents the opportunity to talk to you alone first. This means that they don’t have to put on a ‘brave face’ in order to avoid upsetting or scaring their child and can ask questions that they may not feel comfortable asking with their child present. It also allows them to decide how much information they will share with younger children about their illness and where and how they will go about doing this.
Have all the relevant people present. If both parents are involved in caring for the child, it is really important for both of them to be present whenever you are breaking bad news in order for them to be a support to each other but also so that the information that they receive is the same. For single parents, they may wish to have other people present instead, such as a friend or a relative. You can arrange this by saying that you need to have an important conversation with them and arranging a time to do this, before asking if there is anyone who they would like to have with them at the time. This may not always be possible, for example if a child is needing immediate admission to hospital, but if you have any opportunity to plan how and when to break bad news, make every effort to ensure that all the relevant people are present.
Somewhere private and sitting down. Don’t break bad news in a corridor or other public place. Breaking of bad news should be done in a separate room with the door closed. Make sure that you and both of the parents are able to sit down. Standing up makes it seem like you are going to leave at any moment, whereas sitting down gives a clear message that you will take time to listen to them and puts you on the same eye level which is important.
Take a colleague with you. It can be really helpful to have another colleague with you whilst you are breaking bad news, to help support the family. For example, having a nurse there who has been caring for the child can be very helpful for parents and can help make the situation feel slightly less daunting for you.
Read up beforehand. You need to be as confident as possible about the information you are relaying so that you can answer any questions that the parents may have as fully as possible. Anxiety about the subject matter can get in the way of your ability to communicate effectively so feeling confident about this part is important. Admit when you don’t know the answer to a question, but offer to find out and get back to them.
Avoid interruptions. Ask someone else to hold your bleep and make sure that your mobile phone is switched off if you have it with you. Tell colleagues which room you are using and why and ask them not to disturb you.
Find out how much they already know. It is important to establish what they already think is going on and if they have had any suspicions or worries about potential diagnoses. This helps you to know where to start with your explanation.
Avoid using jargon. A defence mechanism that doctors sometimes use to protect themselves from upsetting situations is to resort to using medical jargon. This is really unhelpful for families who may be irritated by you using unfamiliar words or completely misinterpret what you are trying to tell them. Explain using simple language only, except to name the diagnosis. It is important that families know the technical name for the diagnosis, so do give them this but follow with an explanation of what it means.
Empathy. Showing concern and understanding can make a big difference to how bad news is received. Everyone has their own way of showing empathy but the underlying sentiment is the important part. Try to understand and accept the family’s feelings and viewpoints and be sensitive to their body language and your own. Maintaining eye contact can promote trust. Use phrases that acknowledge what they appear to be feeling; for example, ‘I can see this has come as quite a shock’ or ‘I understand that this is very upsetting for you’.
Be prepared for a wide range of reactions. There is an enormous variety in the range of responses different people will have to the same news and it is important to be prepared for any of these to happen. Bad news can be met with different responses such as anger, denial, tears or shock.
Don’t treat tears as an emergency that need to be stopped. It’s great to be thoughtful and offer a tissue if a patient is crying but thrusting the whole box in their face in an urgent manner can seem like an attempt to stop the crying. The best thing to do can just be to sit in silence with them whilst they cry. Touching their hand or arm can show support without the need to say anything if you feel comfortable doing this, but be aware that in some cultures (such as religious Muslims or Jews), you should not touch parents of the opposite gender.
Don’t leave the room or run off. It is really uncomfortable telling people bad news and this can leave you with the urge to get out of the situation as quickly as possible. It is really important to fight this and make yourself stay with the family rather than running off at the earliest opportunity. Families really notice this and showing that you have time for them and are comfortable being with them whilst they are upset can make a big difference.
Allow time for parents to ask you questions. Parents may have questions they want to ask and it is important that you offer them this opportunity. It may be that they are unable to think of anything after the initial shock of hearing the news, in which case you can offer to meet with them again later once they have had a chance for it to sink in.
Expect to have to give the information more than once. Sometimes doctors will express frustration that after a lengthy conversation with parents about the child’s illness, they later ask the same questions that have already been discussed. This is not necessarily a reflection on the quality of the explanation you have given them and should not be taken personally. It is to be expected that parents will not be able to remember everything from the first consultation, particularly if you have told them bad news. Often patients and parents will report remembering next to nothing of what was said after the bad news was shared with them. Breaking down the information into small chunks at the time can help with this but it is to be expected that you will have to repeat most information at least a second time.
Give time for decisions to be made. It takes time for parents to come to terms with what you have told them; they may need several explanations before they can retain the information and may only think of important questions after they have had time to think. It is therefore important to allow plenty of time for parents to make decisions about their child’s care if this is possible.
Offer support in telling their children the news. One of the big concerns that parents can have when they have been told bad news about their child is to know how much to tell them and how to go about it. It is important for children to be informed (even if only on a simple level) about what is happening otherwise their parents’ upset can be very confusing to them and they can feel very angry and hurt about being left out. Offering support to parents in sharing news with their children (including any siblings) can be a source of great comfort. Breaking bad news to children is very tricky to do well and may be best left to a senior colleague or done with the involvement of a play specialist for young children. If you do have to break bad news to a child, always do so with their parents present, find out what they already know (children are very perceptive and may already have picked up a great deal more about what is happening than you had realised), explain in simple terms and find out what they are worried or scared about after you have told them. It is important to explain to them that the illness is nobody’s fault as children may often see the disease as a punishment for bad behaviour.
Cultural sensitivity
This can be a very difficult thing to get right. It is important to be aware of certain cultural differences and alter your practice accordingly to be sensitive to the family’s needs. However, it is also crucial to avoid stereotyping and assuming that individuals hold the same views as others from a similar cultural or ethnic background. Here are some suggestions to consider during your practice.
Find out their individual views. Treating each patient and their families as individuals is very important so avoid making assumptions. It is perfectly possible for a doctor and patient who are from the same ethnic and cultural background to have entirely different opinions and the doctor making assumptions about that individual’s values and beliefs can cause offence or misunderstanding. Keeping a focus on the patient and family in front of you and establishing their own ideas and values can help to overcome some of this. Treat your patients and their families as individuals, rather than as members of a cultural group.
Use a professional translator. Even patients whose English is quite good may miss some of the subtleties of what you are trying to tell them (and vice versa) unless you have the help of a translator. Children are much more likely to speak both English and their mother tongue fluently and it is tempting to use them as a translator. However, this places an unfair burden on the child and can end up with information being withheld or misinterpreted. It is much better to use a professional translator, either in person or using one of the telephone translation services that are available from many hospitals.
Ask how they prefer to be addressed. It is really important to address people correctly and establish the correct pronunciation of their name. No matter how daunting it may seem, always attempt to pronounce the name yourself to show that you are willing to make the effort and appear interested and if possible continue to use their name throughout the consultation. Don’t make assumptions about the names of different family members as this will vary between cultures and between individual preferences. The mother and father may have different surnames but they may still be married as many women choose to keep their original name and some cultures have an entirely different system of names. Clarify which is their formal name and which is their familiar name as the order in which these are written also differs between cultures.
Ask where the child was born. Finding out where the child was born is important in establishing their social background. This gives information about whether this is a child who was born elsewhere and has had to adapt to a new life or if they have been born and brought up in the same place. It can also be helpful to find out where parents were born too for the same reasons.
Learn about different cultures. Learning a little bit about other cultures can be helpful in allowing you to anticipate some of the possible views and practices of individuals from that community. This can be done through discussion with patients, but it is also advisable to do a little background reading, focusing on cultures that predominate in the population that your hospital serves. For example, if you know that there is a substantial Muslim population living in your area, it may be useful to find out more about key religious beliefs and customs in relation to healthcare held by this religion. It is possible to use this knowledge in a helpful way, without making assumptions about the patient, by asking questions. For example, ‘I know that some people of the Muslim faith will be fasting at this time of year; is this the case for you?’.
If you don’t know, ask. You may come across customs and practices that you are not familiar with and if this is the case then ask. It is far better to clarify than to make assumptions and as long as you ask in a respectful way, people will usually be pleased that you are showing an interest in wanting to understand more about their culture.
Children may feel torn between two cultures. It can be useful to recognise that some children may struggle with conflicting ideas between different cultures in which they have grown up: that of their parents and that of their school friends from different cultural backgrounds. It may sometimes be tempting to offer an opinion but this can often result in you making assumptions based on your own cultural background and can be unhelpful for the child. Instead, encourage them to talk about some of the things that they are struggling with and listen to what they have to say, helping them to come up with their own solutions rather than offering advice.
Consider involving other colleagues. You may be able to seek advice from colleagues who are from a similar cultural background to that of your patient. They may be able to explain more to deepen your understanding or offer to meet the patient directly for a discussion. This can sometimes be reassuring for patients although it has the potential to be difficult for colleagues who have trained within a culture that is very different from the one that they ostensibly share with the patient. It also runs the risk of causing offence to the patient unless you offer this as a possibility rather than forcing it upon them (it may be that they would prefer not to see someone from this same cultural background as they hold very different personal beliefs).
Don’t forget child protection. There may be instances when you feel uncomfortable about a certain part of the history or something doesn’t seem quite right in the interaction between the child and the parents. It is important to consider the possibility of abuse if this happens, regardless of the cultural background of the family. It is dangerous to simply dismiss it as being ‘a cultural difference’; share concerns with colleagues. All children are entitled to the same level of protection and safety regardless of their backgrounds and child abuse or neglect can never be justified on cultural or religious grounds. For more information, see Chapter 4 – Child Protection and Safeguarding.
Illiteracy
A recent UK government survey estimated that 5.1 million adults aged 16–65 years had literacy skills below the level required for completing normal functions such as paying household bills (Harding et al. 2011). Of this group, an estimated 2.4 million adults were functioning at or below a level which the report concluded would mean that they ‘may not be able to describe a child’s symptoms to a doctor’. This obviously impacts on providing care for children and the way in which we provide information to their parents. Providing written information seems like an obvious way to help parents to understand more about their child’s condition but is not necessarily useful. Many adults will be too embarrassed to admit that they have difficulty with reading and writing. Try to get into the habit of routinely asking everyone in a matter-of-fact way if they have any difficulties with reading and writing. This can reduce your embarrassment about the topic and avoid you making assumptions about what parents can and can’t do.
If a child is repeatedly missing their hospital appointments, might this be because their parents are unable to read the letter informing them of the time of the appointment?
Often patient information leaflets are translated into different languages to help families who do not speak English as their first language. However, they may not be literate in their own language either and therefore we should not assume that these leaflets are going to impart any useful information.
Here are some suggestions for finding out about literacy.
Be straightforward about it. Just as with any other potentially embarrassing topic, if the doctor is clearly embarrassed about asking the question then the parent or patient is going to be much more embarrassed about answering it.
Make it routine. If you ask everyone, it will become less daunting for you and you will become better at asking. It also avoids you making assumptions about certain families.
Put it in context. Explaining why you’re asking the question can make it easier, for example saying something like ‘We know that many adults in the UK have difficulties with reading and writing and a lot of the information we send from the hospital is in written form. Do you have any problems with reading or writing?’.
Offer solutions. If a parent does tell you that they have difficulty reading or writing, ask them what you or the hospital can do to improve the way that you communicate with them.
Consent
As mentioned many times above, it is important to include children as much as possible in decisions about their care. However, in most cases when working with young children, the child is not deemed competent to provide legal consent themselves and this must be given by their parents or carers on their behalf. An adult who is allowed to give consent on behalf of the child is referred to as having PARENTAL RESPONSIBILITY.
