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- Good communication
- Difficult conversations and breaking bad news
- Communicating with children
- Talking to children about illness and death
- Electronic communication
- Case studies
When you have completed this chapter you should be able to:
- Understand the need and value of good communication in patient care.
- Understand what is required for good communication.
- Communicate effectively with different stakeholders in children’s palliative care.
- Promote two-way conversations.
- Recognise and avoid common barriers to good communication.
- Break bad news to parents, caregivers and patients.
- Communicate well with children of all ages suffering from a life-threatening or life-limiting illness.
- Talk to children about death and dying.
- Understand the role that electronic communication can play in children’s palliative care.
3-1 Who are the people you will need to communicate with?
Every day the one thing that you do most of the time is communicate. You may change your style and words depending on who is listening. In a typical healthcare setting you will be communicating regularly with:
- Your patients, with whom it is important to keep your communication age appropriate
- Family members such as parents and siblings and extended family such as aunts and uncles and grandparents
- Your healthcare team and perhaps even external consulting colleagues
- Other healthcare workers who form part of the care team for the patient and family.
3-2 What is good and effective communication?
We communicate regularly and most of us assume that our natural abilities to do so are sufficient. Health practitioners are often shocked when families and patients tell them that they have not communicated well and indicate that they were left feeling misunderstood and unheard. Being able to communicate well with a variety of people is essential when providing the best care possible for a child with a life-threatening or life-limiting illness. All communication should be honest, clear and straightforward. Difficult conversations must be planned for and held at an appropriate time and in the best possible available setting, such as a quiet space where you can speak in private and without distractions.
Key points in good and effective communication include:
- Learning to communicate well is essential.
- Good communication is often the difference between good and bad care.
- By communicating well, a family and child can feel cared for and nurtured, even if their situation feels hopeless.
- As a healthcare worker you must learn the use of the right words and make sure that your non-verbal communication, such as your body language and the tone of your voice, make the child and family feel cared for.
- Make sure your words and body language give the same message, as kind words spoken with defensive body language will create confusion.
- Communication is not just about your patients but is also key to good relationships with colleagues and a positive work environment.
- Think of good communication as an important healing tool.
Bad communication can be very damaging to the patient relationship and to your work relationships.
Good and effective communication is essential for good patient care.
3-3 What are the benefits of good communication?
There are many benefits to good communication, but the main ones are:
- It builds trust between the healthcare team and family or patient.
- It encourages honesty.
- It encourages treatment compliance.
- It improves the patient’s quality of life.
- It reduces anxiety levels for everyone.
- It helps make the illness journey easier for all involved.
- It ensures respect for cultural differences.
- It reduces the frustrations of miscommunication.
- It saves you time.
- It improves the overall patient and family experience.
3-4 What skills can improve effective communication?
Important skills to improve communication are:
- Giving your full attention: During your time with the patient and family they must feel that they are the only people you are interested in and they have your undivided attention.
- Listening: We often listen to answer but it is important that we listen to hear. Listening involves really hearing what the patient and family are saying through their words, actions, voice tone and what is not being said. If we are unsure about something, we need to seek clarity rather than assume we have understood. An important phrase to include is: ‘so what I hear you saying is….’. Listening is key to good communication.
- Use of questions: Open-ended questions enable you to get far more information from the patient and family e.g. ‘How are you feeling today?’. Closed-ended questions promote one-word answers and lead to a feeling of not being heard e.g. ‘Are you feeling better today?’.
- Paraphrasing: By repeating what has been said the family and patient know that you have been listening and enables you to highlight the issues that you are concerned about.
- Summarising: This shows the patient and family you have been listening but also provides an opportunity to identify what has not been said and if more information is needed.
Effective communication consists of giving your full attention, listening, using questions, paraphrasing and summarising.
3-5 Why is good communication a two-way process?
Communication is getting your message across and learning what the patient and family are thinking. Therefore communication is a two-way process that only works if everyone is given a chance to talk.
Figure 3-1: Communicating is a two-way process that involves both the sender and receiver of messages.
3-6 What important pointers must one consider when communicating?
The following pointers are important:
- Offer the opportunity for privacy and uninterrupted time and an unhurried discussion.
- Be prepared and think about what you are going to say so that you can deliver your message.
- Use the person’s name.
- Respect the dignity of the parent, family or child.
- Always check if they want to hear your message and are ready to talk, i.e. ask permission before proceeding.
- Make sure your message is clear and easily understood.
- Use words that are simple and avoid using complicated medical terms (jargon) e.g. use shortness of breath rather than dyspnoea.
- Always check their understanding to rule out any misunderstandings.
- Mutual respect is key in any good healthcare relationship and without it communication will often break down.
- Make sure you are being culturally sensitive and appropriate in your approach.
- Always remember that every person is a human being, so speak to them with this in mind.
- Show that you care as families are scared and they need to feel that you care.
- Fellow colleagues may be stressed and overworked and may also need to be heard and could benefit from good communication.
3-7 Why are words important?
Choosing your words carefully is important because:
- Certain words may mean different things to people who speak different languages.
- Medical terms are not easily understood if you have no medical training.
- Words can hurt or help so watch closely as you talk to a family or colleague. Do not just listen to what they say, but also take note of their body language and voice tone.
- The right words can encourage a patient and family to trust you.
3-8 How do you know if you are communicating well?
Ask yourself the following questions:
- Am I paying close attention to what is being said or am I just waiting for a gap to answer?
- Is my body language showing that I care? For example, are you looking distracted, fiddling with your phone or are your arms crossed?
- Is my voice tone caring and kind?
If you are truly listening and if you can honestly answer yes to the above questions, then you are communicating well and having a two-way conversation where everyone involved in the conversation is getting a turn to listen and to respond. Two-way conversations are critical in effective communication. If a person feels unheard they may leave the conversation feeling ignored, dismissed and hurt, which can lead to further problems when communicating with your colleagues, the patient and family.
Always make sure you are having a two-way conversation.
3-9 What are some barriers to good communication?
Common barriers to good communication include:
- Fear: If our anxiety is visible it makes the family and patient anxious and prevents them from hearing the message.
- Avoidance: Not talking about something does not mean we are not communicating. It alerts the listener to what is not being said and can cause more anxiety.
- Culture: Cultural differences can become a barrier if there is a lack of connection.
- Attitudes: A sense of superiority by the healthcare provider will prevent good communication.
- Medical hierarchy: A doctor is usually held in high esteem, which can prevent people from challenging the doctor or asking questions.
- Dress: Dress that is thought to be inappropriate can prevent good communication (e.g. a short skirt or dirty shoes).
- Body language: Defensive or aggressive body language will prevent good communication as people will feel the need to protect themselves.
- Tone of voice: An authoritarian or a passive tone of voice will prevent open and honest communication.
- Choice of words: Hiding behind medical knowledge and using medical terms can be intimidating and prevents a clear understanding of what is being said.
3-10 What must you keep in mind when communicating across cultural and language barriers?
Cultural and language differences between the child, the family and the healthcare worker may be a barrier to good communication. As a result, families could receive incomplete information about their child’s diagnosis, prognosis and end-of-life care. This could influence their ability to make important decisions and leave them feeling ignored, lost and isolated during a difficult time. Therefore, it is helpful to note the following:
- When needed, use interpreters for every meeting with the family, not only the so called ‘important’ ones. Telephone interpreters have been shown to be just as effective as those that are physically present at the meeting.
- It is important to inform the interpreter about the conversation before starting to speak with the family. This will allow the interpreter to structure the conversation in the best possible way for the family. Often a brief conversation with the interpreter before speaking with the family is helpful.
- During discussions, remember to talk directly to the family and not the interpreter.
- Language as well as cultural differences might make it difficult to reach a shared understanding of the important issues, which could leave families feeling misunderstood. One problem is the meaning of the words that are translated. Finding an interpreter that is also culturally sensitive can help to navigate the conversation about the child’s care in a way that respects the family’s culture.
- Despite issues with differences of meaning across cultures, one should always try to find shared language and meaning with which to think through the medical situation and make decisions about care.
A good interpreter can be very helpful when there are language and cultural barriers to communication.
Difficult conversations and breaking bad news
3-11 Why is it important to break bad news well?
When caring for very sick children there will be times when you are required to provide distressing information to a family and possibly to your patient. This is one of the most difficult parts of the work and it is vital that it is done in the very best way possible.
Breaking bad news well is important:
- To maintain trust
- To reduce uncertainty in relation to an illness which can be very hard for the patient and the family to bear
- To prevent inappropriate hope that can result in unnecessary treatments, expense, pain, guilt and anxiety
- To allow the patient and family time to absorb and adjust to a new reality
- To prevent a ‘conspiracy of silence’ that can destroy family communication and prevent mutual support as good communication is not possible if something important is not discussed or ignored on purpose
- To enable patients to participate in their treatment and care for the future.
It is important to learn how to break bad news in the best way possible.
3-12 What are some of the difficulties in breaking bad news?
Common difficulties are:
- Fear of not knowing how to tell the bad news or to manage the conversation
- Fear of being blamed for causing the situation or for upsetting the patient and family
- Feeling a failure for not meeting the patient’s expectations of a cure
- Feeling awkward and exposed
- Lack of sufficient time due to a heavy workload.
3-13 How do you break bad news?
When breaking bad news, following Robert Buckman’s six-step process has proved effective. Use the word SPIKES to help you remember each of the six steps:
- S – Setting
- P – Perception
- I – Invitation
- K – Knowledge
- E – Empathy
- S – Summary and Strategy
- Dr Robert Buckman (1948–2011) was an American cancer specialist and the author of the book ‘I Don’t Know What to Say: How to Help and Support Someone Who Is Dying’.
SPIKES can be used to remember the six steps when breaking bad news.
3-14 What is the setting?
Step 1 is the setting. This is the physical context where the bad news will be broken:
- Where are you seated in relation to the family and patient?
- Can you touch them appropriately if the need for physical touch arises?
- Are there physical barriers between you such as a desk?
- Can both of you get to the door if the situation becomes heated or uncomfortable?
- Not everyone likes to be touched or hugged. When in doubt, rather ask permission before making physical contact.
It is helpful to use the SOLER technique to remind you how to position yourself:
Sit squarely with an Open posture. Lean slightly towards the person, make Eye contact and Relax.
However, eye contact must be culturally appropriate and should be broken when the person is angry or is crying. It is important that you are relaxed. The more anxious you are the more anxious the family or patient becomes.
- Listen, listen and for good measure, listen some more. Listen to how the family interacts, listen to what they are saying and listen for what is not being said. Every patient and family has a story to tell. You need to let them tell you their story or they will not be able to hear you.
3-15 What is the patient’s perception?
Step 2 is the perception of the condition and its seriousness. Perception is one’s understanding of the situation. It is important to establish what the patient and family know as well as what they suspect. Many people read books or magazines. Others may have gone onto the internet to look for the symptoms and a possible diagnosis.
A good way to get this information is to ask them to ‘tell their story’. What has happened that has led them to this place? Listen to their choice of language and respond at the same level. If the bad news is about an unexpected or traumatic death you need to get to the point as soon as possible.
3-16 When should you provide more information?
Step 3 is an invitation to provide more information. The patient and family have a right to know everything, but they also have the right to not hear it all at that moment. Check that they want you to share the information with them at this time. During this step, clarify any misinformation that you might have heard during the conversation as well as anything that you think the family or patient is uncertain about. Respect is vital, especially if they are not ready to hear any more information.
This step requires asking permission to give more information. An example of this would be: ‘You have given me a lot of information and I can see that there are still some things that are not clear. Would it be okay if I told you more about what is going on?’ If they indicate they would prefer not to have the discussion, respond with: ‘I understand that there is a lot going on and that you would prefer to not talk now. There are some issues we need to discuss but I will give you some time and will come back later’.
We cannot force the family or patient to listen when they are not ready. However, if we need to inform them of something important and urgent decisions need to be made, let them know this is the case and gently give the information.
When talking to children a good way to get their invitation to receive more information is through the following statement: ‘Some children like to know all there is to know, and some children prefer not to know. Which one are you?’ If they state they want to know everything, ask permission to tell them now and ask if they would like a parent or caregiver with them. If they state they do not want to know, respect that and remind them that they can change their mind and ask you at another time.
Parents or caregivers may indicate that they do not want the child to know the truth regarding their illness. The best way to deal with this is to inform the family that you will not purposefully give the child information, but you will also not lie. That means, if the child asks a direct question, you will answer truthfully. The parents then have a choice to either wait to see if the child asks for information, decide to tell the child themselves or tell the child with your assistance. It is important to respect the child’s right to participate in their own healthcare and decision making.
It is best to provide information only when the patient and family are ready to hear it.
3-17 How should we provide the knowledge that needs to be given?
Step 4 is providing the knowledge (information) to the patients and family. This step goes simultaneously with the ‘E’ of SPIKES (Empathy). When breaking bad news, we use the Warn, Pause and Present, Check back Chunk (WPC) method. We cannot give all the information in one sentence, so it is important that we break it down and give it in ‘chunks’:
- Firstly, we warn that there is bad news. This is to give the family or patient a chance to prepare and brace themselves.
- Secondly, we pause until they are ready and then we present only one piece (chunk) of information at a time.
- Lastly, we check back to ensure that they have correctly understood the information, and that the news will be remembered. One way of doing this is asking, ‘Shall we discuss that a bit more before moving on?’
By following the WPC Chunk method, we can break the bad news down into chunks that enables better coping and better understanding by the patient and family.
With the WPC Chunk method only one piece of bad news is given at a time as this helps patients and parents understand and handle the distressing information.
Follow this process until one of three things happen:
- There is no more news to give.
- The family or patient do not wish to hear anything more.
- You are not in a position emotionally to continue.
For example, telling someone that they have terminal cancer is often more than giving only one piece of bad news. What we are saying is:
- You have an illness.
- The illness is serious.
- It is serious enough to kill you.
- You will probably become quite sick before you die.
- You might be in pain or discomfort.
- You may have a lot of things to do before you die.
- You might have to think about what you wish to happen after your death.
3-18 How should we explore emotions and show empathy?
In step 5 we explore what the family and patient are feeling. Acknowledging their emotion ensures that they know they have every right to feel sad, angry, or frustrated. When handling strong emotions, one needs to:
- Remember that it is not about you but the information that you have given.
- Stay safe – keep a safe distance, close to an exit and leave at the first hint of impending violence.
- Appear open and non-threatening.
- Take a deep breath and allow the anger to wash over you – it will stop.
- Listen, listen, listen.
- Stay quiet.
- Do not interrupt, argue back or be defensive.
- Once the person has become calmer, cautiously respond by reflecting back what you heard as the main cause and focus of their anger.
- Let them know that their feelings are justified and understandable.
- Apologise as much as possible even if you are apologising for something that is outside of your control.
Empathy is a crucial skill in palliative care but even more so in the breaking of bad news. Empathy is the ability to share and understand the feeling of others.
- Empathy can be defined as ‘when we are able to place ourselves in someone else’s shoes and form an understanding of their feelings, ideas and dreams’. (Stead & Watson, 1999:107).
To show empathy, we need to understand the empathic response. There are three steps in the empathic response:
- Identify the emotion.
- Identify the source or cause of the emotion.
- Respond in an appropriate manner.
For example, ‘I can see that this news has made you very angry. I am so sorry.’
Empathy is being able to share and understand the feelings of others. It is very important when breaking bad news.
3-19 How should you summarise the discussion?
Step 6 is the summary and strategy. Summarise what has been discussed and plan the next steps (the strategy). It is important that within the planning the family and the patient are given as much choice and control as possible. This is a very disempowering time and many things are done to the patient, often without discussion. By allowing the family and the patient the opportunity to make decisions, you are giving them some control at a very overwhelming time.
There are a number of things not to do or say:
- Do not force the issue; people often need time to absorb the bad news.
- Do not try to find positives; be truthful, especially if the prognosis is bad.
- Do not be pessimistic; it is important to provide support and hope when possible.
- Do not leave when the going gets tough.
- Do not minimise the family and patient’s experience.
- Keep your personal opinions to yourself.
Communicating with children
3-20 What do you need to know in order to communicate well with children?
Many adults worry about being able to communicate well with a child, especially one who is very sick and may be dying. They fear upsetting the child by saying the ‘wrong thing’ when asked a direct question. Like any skill, being able to communicate well with these children will improve with some basic knowledge and practice. This includes understanding:
- Stages of language development in children
- Ways to make yourself and your environment more child friendly
- Ways to build trust and connection with a child.
3-21 What role does a child’s age and stage of development play in good communication?
A child’s ability to speak and understand language changes and improves as they get older and experience their world. The way you communicate with a pre-school child will be very different to the way you talk to an adolescent.
It is important to consider a child’s age and stage of development when communicating with them.
- Sara Gable provides the following useful guidelines (3-22 to 3-26) for talking to children in her article “Communicating effectively with children”
3-22 How do infants in the age group birth to 12 months communicate and how can you best communicate with them?
Important principles include:
- These infants communicate with their coos, gurgles and grunts as well as with their facial expressions, cries, body movement (cuddling or back arching), eye movement and limb movements.
- Mothers instinctively learn to respond to their infant’s communication: they comfort them when they are crying and smile at them when they are smiling.
- Using a sing-song, high pitched tone of voice with exaggerated facial expressions and wide-open eyes helps capture the infant’s attention and helps them to keep focussed on interacting.
- Pay attention to the infant’s style of expressing emotions, preferred level of activity and tendency to be social; some infants are quiet and observant and prefer infrequent adult interactions while others are emotional, active and seek continuous adult attention and interaction.
- Recognising the unique personality of each infant will make effective communication easier.
Infants communicate with sounds, facial expressions and body language.
3–23 How do toddlers in the age group 12 to 36 months communicate and how can you best communicate with them?
Important principles include:
- Toddlers communicate with a combination of gestures and grunts, one and two-word sentences, positive and negative emotional expressions and body movements.
- Encourage toddler communication by responding quickly and predictably to their communication efforts.
- Expanding on their one or two-word communications and building sentences around these words helps the development of their language, for example, ‘Hot, that is right, the porridge is hot’.
- Give toddlers one instruction at a time before changing to another activity.
- Take note of the toddler’s emotions.
- Make the most of the daily routine by talking the toddler through the sequence of what they are used to doing.
- During play with toddlers follow their lead and let them create the play.
- Describe what they are doing during play and let them have control.
- When telling older toddlers what you want, tell them why you want something to happen.
3-24 How do the pre-schoolers in the age group 3 to 5 years communicate and how can you best communicate with them?
Important principles include:
- Pre-schoolers begin to talk in full sentences that are grammatically correct.
- Young pre-schoolers may struggle with telling stories in the correct order but by age six this ability improves.
- Pre-schoolers like to talk about their past experiences and what they have been doing.
- They experiment with pretend and fantasy play. Sometimes pre-schoolers like to talk about imaginary experiences e.g. flying with birds. The older pre-school child may reveal ‘magical thinking’ and believe that everything happens because of their actions e.g. ‘my brother is sick because I did not share my sweet with him’.
- Children of this age begin to recognise the connection between the spoken word and the written word.
- Pre-schoolers often talk to themselves when playing and working on tasks such as puzzles or art activities. When pre-schoolers are talking to themselves, do not stop them. Self-talk helps pre-schoolers focus on what they are doing.
- Ask pre-schoolers questions about past events, probe for details and provide new words to enhance their description of experiences.
- Encourage pre-schoolers to talk about their feelings, both positive and negative, and discuss the possible causes for the emotions.
- Create opportunities for pre-schoolers to engage in fantasy and pretend play, either alone or with friends.
Pre-schoolers experiment with pretend and fantasy play and may reveal ‘magical thinking’ which should be recognised and addressed.
3-25 How do school children aged 6 to 12 years communicate and how can you better communicate with them?
Important principles include:
- School-age children talk much like adults, in full sentences.
- They ask more questions, can relate past experiences in great detail and seek more information and justification for the way things are.
- They can understand and talk about their views of another person and are beginning to recognise the influence their behaviour can have on others.
- School-age children can handle more pieces of information at the same time and, with assistance from adults, can effectively engage in goal setting and problem solving.
- At this age, children spend more time talking and playing with peers and friends.
- When correcting the school-age child’s behaviour, provide a calm explanation of your preferences. By giving a reason, you help the school-age child understand the implications of his or her behaviour on others.
- Encourage school-age children to talk about their feelings and the possible reasons for their emotions.
- Use conversations to help school-age children learn conflict management skills. Because peer relationships are becoming more important at this age, conflicts between children will likely arise.
School children want to understand the way things are and need to learn the implications of their actions.
3-26 How does the adolescent age group 12 to 18 years communicate and how can you communicate with them?
Important principles include:
- Adolescents are interested in talking in-depth about themselves and about their relationships with others. They want to understand who they are becoming and what others will think and feel about them.
- Adolescents want to talk about how they are different from their parents and the rest of the world. They are beginning to realise that their parents are not always correct in what they do and say.
- Adolescence is a time when children typically act more negatively and have more conflicts with their parents.
- Adolescents spend more time alone or with their friends than with their families.
- Be actively sensitive and responsive to the adolescent experience. Remember, each adolescent is going through major social and physical changes.
- Stay interested in the adolescent and gently ask questions and seek explanations for behaviour.
Adolescents want to understand themselves and their relationship with others.
3-27 What can you do to make children feel comfortable in your presence?
Useful steps include:
- Take a critical look at yourself and remove any items of clothing (e.g. white coat) or instruments (e.g. stethoscope) from sight which could frighten the child.
- If possible, get down to their level and remember to smile with genuine warmth.
- Remain calm and avoid rushed or big movements.
- Be respectful of the child’s personal space. Do not get too close, pat a child on the head or pinch their cheeks. A gentle touch on an arm or back can be comforting.
- Warn them before carrying out a physical examination. They should always be with an adult they trust during physical examinations. Ask older children or adolescents if they would like to have someone with them while you talk to them.
- Praise and thank them for behaving well and remember that young children are often thrilled by small rewards such as stickers and stars.
- If the child is old enough to understand, explain what you are doing and why. Warn them if something may hurt or sting.
- Never use cold hands when examining a child.
3-28 How can you make your environment child friendly?
Several simple things can be done to make an environment child friendly:
- Remove any scary charts, models and instruments from sight.
- Decorate rooms with soothing colours, interesting pictures, mobiles, books, crayons and toys.
- Consider their comfort for example, if you don’t need to put a child on an examination bed, consider examining younger children on their mother’s lap or as they play.
3-29 How can you build trust and connection with a child?
Useful principles include:
- Be friendly. Have an open and friendly manner when you meet. Smile, introduce yourself and explain who you are and what you do.
- Be interested. Ask children about themselves, their everyday lives, their likes and dislikes. Show that you are interested in who they are and what they have to say.
- Use humour. Most children enjoy silliness and humour. Tell jokes and don’t be afraid to be ‘silly’ and pull funny faces or do ‘magic tricks’ with younger children such as pretending to make a small toy ‘appear’ from out of their ear.
- Take time. One of the greatest gifts we can give another person is our time and our presence. When talking to a child, try not to be distracted. Turn off your phone if you can and give them your full attention.
- Listen. Deep listening involves listening to understand and not listening to respond. Know when to be quiet and when to acknowledge their feelings and frustrations without trying to ‘fix’ something that cannot be fixed.
- Show respect. Do not be rude, sarcastic or judgemental. Show them the same respect you would show any adult.
- Tell the truth. Always tell the truth and admit when you may not have the answer.
- Don’t assume. Be sure of what the child wants to know by asking your own questions. For example, a child may ask, ‘Am I going to die?’ to which you could respond, ‘What makes you think that?’ and ‘What do you think is going to happen to you?’
3-30 What are some of the ways children use to communicate?
Spoken language depends on a child’s abilities, age, experience and development. They can, however, communicate in several other ways:
- Body language. A child’s body language is usually easy to read by looking at their faces, eyes and how they hold their body. As trust develops you will notice their body language becomes more relaxed. Children are very good at reading your body language so always try to be open, relaxed and friendly when around them.
- Spoken language. Spoken language develops very fast in the first five years of the child’s life and you may find a difference from one examination to the next. Children usually understand a lot more than they can express so always be careful about what you say in the presence of a young child. Use questions to ensure they have understood you. If you are not fluent in the child’s mother tongue, use a trusted translator who understands palliative care.
- Play. This is the first language of a child. You will learn about the child’s nature, their fears and their worries by watching them play. Make the time and have suitable toys on hand to encourage them to play.
- Creative expression. Given the opportunity, children can express themselves through music, dancing, movement and art. Older children may want to write their thoughts and feelings down in a journal, in the words of a song, a rap or poetry. It is important to provide opportunities and encourage these activities.
- Social media. Social media platforms such as Facebook and Instagram can provide adolescents and young adults with a powerful place to express their feelings, thoughts and concerns.
Talking to children about illness and death
It is very likely that you will need to talk to children in your care about death and the process of dying. Knowing how children of different ages and stages of cognitive development understand concepts, such as death, is crucial to effective communication in palliative care.
3-31 What do most dying children understand about death?
Most dying children:
- Can understand that they have a serious illness by the age of three years
- Can understand that their illness is getting worse even if no one tells them
- Soon realise that adults find it difficult to talk about death
- May discover death is a safe topic to discuss with other children who are often eager to share information
- Learn to safely discuss their illness away from parents
- Are very frightened of separation, particularly from their family, but also from friends and from school
- Are frightened of pain
- May view illness and death primarily in terms of separation and pain
- Will not really understand the differences between curative and palliative approaches.
Dying children are frightened most by pain and fear separation from loved ones.
3-32 What stages of understanding do children who have a long-term life-limiting illness generally go through?
These are the stages that a child goes through over time:
- I am sick.
- I am sick, but I am going to get better.
- I am going to keep on getting sick, but I will still get better each time I am sick.
- I am going to keep on getting sick and I will not get better.
- I am going to die.
Key messages to remember are:
- Children’s understanding of themselves, other people and the world around them evolves and changes as they get older.
- No one child is the same as another and children develop faster the more experience they have.
- Never underestimate a child!
3-33 What can we do to help children talk to us?
There are a number of things that can be done:
1. We can provide them with puppets or art that redirects their feelings to an object:
Some children may find it difficult to talk directly about themselves or their families. Using ‘objects of transference’ like a doll or puppet may make it less threatening for them to talk about things that they find difficult to talk about directly:
- Puppets can be used to tell the child a story about something that is worrying them. Link it to what is happening in the child’s life. A good idea is to act as if the puppet is telling you a secret that they would like you to share with the child. This often leads to the child talking to the puppet. Dolls or toys can also be used.
- Ask the child to draw a picture. This can show how they are feeling, what they are missing about home, anything that is going to get them talking.
- Children need opportunities to express themselves through as many alternative outlets as possible, including art, music and movement, depending on their personal interests.
2. Medical play:
Use toys such as dolls or plastic medical equipment to explain to children what to expect in the hospital. This helps to reduce anticipatory anxiety and fear of the unknown. Dolls may also help to explain to a child what is happening with his or her body. For example, a special doll with anatomical details can be used to show the child what is inside their body and how ports and central lines work. A special doll can also be used to tell the child about the mask that they will need to wear during radiotherapy.
3. Exercises for older children:
The River of Life exercise helps children see that they have overcome challenges in their lives before, that they have coping skills and that they can use these to cope with the new challenges in their lives:
- Step 1: Discuss how a river flows. It has a source, there are ups and downs, rapids, bends and twists. How does the river overcome rapids and twists? Does it stop flowing when it comes to an obstacle or does it go around it? Where does it end?
- Step 2: Ask the child to think about their life. Where and when were they born? How did they grow up? What challenges have they experienced and how did they overcome them? What are their hopes and dreams?
- Step 3: Ask the child to draw their river of life describing the twists, the rapids, the slow sections, the obstacles and challenges. Ask them how they overcame the obstacles and continued to flow. What is their ocean i.e., their hopes and dreams for the future?
The River of Life exercise helps older children view the story of their own life.
3-34 What role can electronic communication and social media play in providing good children’s palliative care?
Mobile phone apps and social media platforms like Twitter and Facebook can play a role in improving communication with patients and families as well as in promoting the goals of organisations providing palliative care to children. They can also improve the quality of life of patients and families as they connect with others who may be going through or have gone through the same experiences.
It is important to guide patients and parents to high quality sites that provide accurate, up-to-date information and avoid sensational sites where information is often false and not based on scientific evidence.
3-35 How can internet-based communication benefit childhood palliative care organisations and institutions?
Websites and social media platforms can provide important information on organisations and help to develop trust with patients, families and supporters. Many parents use social media and the internet for information and advice on their family’s health. Providing true stories and helpful information can create awareness and help increase referrals for palliative care. It can also help to break down barriers caused by common myths about palliative care, for example, that palliative care is only provided at the end-of-life.
3-36 How can electronic media improve care to children and families?
There are several ways that electronic media can be helpful:
- Adolescents, young adults and parents may use the internet to learn about the illness. While this can cause distress, encouraging them to always tell you what they have learned online can open communication doors and allow you to provide them with accurate information.
- Social media groups can connect patients with similar conditions and provide support groups for those who provide care to these patients.
- E-learning courses such as this Bettercare series can improve skills and knowledge of healthcare providers.
- Using cellphone apps like WhatsApp to send regular messages allows the care team to keep in touch with families and children. This can reduce anxiety and increase their feelings of being supported.
- Healthcare professionals in the field have found creating closed WhatsApp groups to be extremely helpful in their practice. These groups are based on specialised interest or location. This platform allows them to conveniently share information, ask for information or advice from one another and share their own experiences. It should be noted that such groups need to be mindful of any legal implications that may ensue from sharing personal information of patients or providing medical advice on such groups.
- Electronic media can be very helpful for children who spend long periods of time away from school. They may be able to use a video conferencing programme such as Skype to stay in touch with their teachers and friends in real time. They could even listen in on important lessons. Teachers can be encouraged to keep the child informed and up-to-date with what is happening in the classroom through phone calls, WhatsApp, text and voice messages.
- E-learning courses on children’s palliative care are available from the International Children’s Palliative Care Network (ICPCN) and can be found at www.elearnicpcn.org.
Case study 1
Steven is a developmentally normal 8-year-old newly diagnosed with a rare inherited disease (mitochondrial disorder) that affects the brain, nerves and muscles. A previously active child, he is beginning to have some difficulty with energy levels, his hearing and his memory. He does not fully understand the implications of the diagnosis and keeps asking when he will get better.
1. Would Steven be old enough to understand general information about his illness and its progression?
Yes, at eight years of age, Steven should be able to understand information about his illness and its likely progression.
2. Who would be the best person or persons to break the difficult news to Steven about his illness?
Ideally, the person should be someone he trusts and feels safe with, such as a parent.
3. What would be a suitable setting for breaking the news to Steven?
The best place to break the bad news would be somewhere comfortable and familiar to Steven where there will be little or no distractions or disruptions.
4. How would you open the conversation with Steven?
Ask Steven what it is he thinks could be happening to him and what he wants to know about his illness. Listen carefully to what he is asking and ask your own questions to make sure you have understood what he wants to know.
5. Should you tell Steven everything about his illness and prognosis at one time?
No, use the WPC Chunk method. Give him one ‘chunk’ of information and allow him the time to absorb this information and what it means.
6. How will you know when Steven has heard enough, and you need to stop talking?
Observe his body language and his facial expressions. You can ask him if he would like to continue the conversation at another time and remind him that he is free to ask questions whenever he is ready.
7. How could you help Steven express any anxiety he may have regarding his illness?
He needs opportunities to express himself through as many alternative outlets as possible, including art, music and movement, depending on his personal interests. For example, he may be able to communicate how he feels through a drawing rather than through words. He needs regular opportunities to play and socialise with his friends.
Case study 2
Kwandile, 4-years-old, was brought to a district hospital after several days of lethargy. After a few routine blood tests, he and the family were transferred to a tertiary facility. Here more tests were done, including a bone marrow aspirate, and a diagnosis of leukaemia was reached. Kwandile’s mother, Sindy, needs to be told the news.
1. Using the 6-step SPIKES process, describe how you would begin a conversation with Sindy?
- Setting – Before starting anything, ensure that the setting is correct and you have the time to engage in this discussion.
- Perception – Given that the family have been through several tests and through two health facilities, one of the ways to start would be to ask Sindy to tell you what has led up to them being transferred to the tertiary facility. The idea behind this is that Sindy will recall what she had been told before and after the blood tests at the district hospital as well as what was said to her before all the tests at the tertiary facility. It will also give you an indication of how much Sindy understands. It may also highlight any gaps in the information she has been given.
- Invitation – Ask Sindy if there is anything that she would like clarified before you continue. Ask for permission to give her more information.
- Knowledge – Provide Sindy with information about the blood tests. You could say, ‘As you are aware, one of the things we were worried about was leukaemia. I’m afraid I have bad news. The tests have come back confirming that is the case.’ Answer any questions she has and provide her with the important information she needs to have, checking back each time that she has understood.
- Empathy – Empathy will be a critical part of this interaction irrespective of Sindy’s previous knowledge or her concerns.
- Summary and Strategy – The session must be summarised, and a strategy put in place. The strategy could be for her to come back and discuss this all again, or to return to discuss the diagnosis with another family member or to discuss treatment options.
2. What information must be given to Sindy?
Sindy will need to be given information about leukaemia, such as:
- Treatment options and plans
- What the treatment entails and how long Kwandile will need to stay in hospital
- What support is available for Kwandile, Sindy and the rest of the family.
Case study 3
Silvia is a 13-year-old school girl with cancer. After a few years of aggressive treatment, a cure is no longer an option and her care has become palliative only. Her parents insist that she is not told the truth of her prognosis. Conversations with Silvia reveal that she suspects she is dying but does not want to talk about it as it upsets her parents and grandparents. This ‘conspiracy of silence’ is negatively affecting members of the care team, Silvia and her family.
1. What negative effect will this ‘conspiracy of silence’ have on Silvia?
Silvia will feel isolated and may become resentful and angry and may not know why. She will be denied the opportunity to participate in decisions about her personal legacy, for example, leaving her favourite things to people she loves, what kind of funeral she would like to have and how she wants to be remembered. She could also miss out on experiences she would like to have before she dies.
2. What negative effect will this ‘conspiracy of silence’ have on Silvia’s parents and family?
Her family members will need to constantly be on their guard that they do not say or do anything that will alert Silvia to the truth. They may feel guilt at not being honest with her and find it very stressful to keep assuring her that she will get better. After she dies they will likely regret not having had an honest conversation with her about her wishes.
3. What negative effect will this ‘conspiracy of silence’ have on her care team?
Her care team may avoid spending time with Silvia as they are afraid she will ask questions they have been asked by her parents not to answer truthfully. This may lead to them feeling guilty and possibly feeling resentful towards Silvia’s parents.
4. How would you encourage an open an honest conversation between Silvia and her parents?
Discuss the situation with Silvia’s parents and provide information on why it is better to speak honestly to her about the probability of her dying. Explain to them that she already suspects the truth but is avoiding talking about it to protect them and other family members. If they agree to be honest, ask if they would like to talk to her or if they would prefer that someone suitable on the care team did it. Give Silvia and her family as many options as possible for how, when and where this conversation happens.
Case study 4
Devon is a 9-year-old who has suffered a severe head injury and may not survive. He is currently admitted to the intensive care unit on a ventilator. His parents and 16-year-old sister, Tamara, are at his bedside. The family have been very active on social media asking that people pray for Devon. This has resulted in thousands of people following his progress online and encouraging his family to expect a miraculous recovery.
1. How would you choose the best person to break the news to Devon’s family?
The multidisciplinary care team should meet to discuss the case in detail and decide which team member should set time aside to meet with the family to discuss the expected prognosis and details of the child’s care. If there has already been a team member who has established a relationship with the family, it would be beneficial for them to be involved.
2. What would be the best way to break the news to his family?
Given the severity of the news it is best to not waste too much time. The best way would be:
- Highlight how severe Devon’s injuries are.
- Discuss what the care team has done so far and what his response or lack of response has been.
- Discuss the treating team’s concerns and state that at this time we are concerned that Devon’s injuries are too severe, and we don’t think he will survive.
- After doing this, keep quiet. Answer any questions they may have with honesty and compassion.
3. What would be the best way for Tamara to hear the news?
Tamara is old enough to be a part of the discussion with the family. If the parents do not want her involved it would be important to express reasons why she should hear the news with her parents.
4. How should the care team deal with the interest generated by Devon’s case on social media?
It is important to acknowledge the support that the family are receiving. It is not the care team’s role to take away hope. It is their role to be realistic and honest and to acknowledge that unexpected recovery can and does still happen. It would be important to stress to the family the need for accurate information to be given on social media to avoid unnecessary conflict or misunderstanding.