3 Communication

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When you have completed this chapter you should be able to:

  1. Understand the need and value of good communication in patient care.
  2. Understand what is required for good communication.
  3. Communicate effectively with different stakeholders in children’s palliative care.
  4. Promote two-way conversations.
  5. Recognise and avoid common barriers to good communication.
  6. Break bad news to parents, caregivers and patients.
  7. Communicate well with children of all ages suffering from a life-threatening or life-limiting illness.
  8. Talk to children about death and dying.
  9. Understand the role that electronic communication can play in children’s palliative care.

Good communication

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:

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:

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:

3-4 What skills can improve effective communication?

Important skills to improve communication are:

  1. 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.
  2. 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.
  3. 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?’.
  4. 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.
  5. 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.

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:

3-7 Why are words important?

Choosing your words carefully is important because:

3-8 How do you know if you are communicating well?

Ask yourself the following questions:

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:

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:

A good interpreter can be very helpful when there are language and cultural barriers to communication.

See Appendix B for communication role plays, Appendix B1 for a communication assessment tool and Appendix B2 for a self reflection tool.

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:

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:

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:

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:

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’:

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:

  1. There is no more news to give.
  2. The family or patient do not wish to hear anything more.
  3. 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:

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:

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:

  1. Identify the emotion.
  2. Identify the source or cause of the emotion.
  3. 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:

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:

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:

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:

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 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 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 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:

3-28 How can you make your environment child friendly?

Several simple things can be done to make an environment child friendly:

3-29 How can you build trust and connection with a child?

Useful principles include:

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:

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:

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:

  1. I am sick.
  2. I am sick, but I am going to get better.
  3. I am going to keep on getting sick, but I will still get better each time I am sick.
  4. I am going to keep on getting sick and I will not get better.
  5. I am going to die.

Key messages to remember are:

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:

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:

The River of Life exercise helps older children view the story of their own life.

Electronic communication

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:

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?

As follows:

2. What information must be given to Sindy?

Sindy will need to be given information about leukaemia, such as:

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:

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.

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