How to talk to a dying child about death

In the hectic life of a big city, we rarely think that families live next to us in which a terminally ill child is dying right now. It is impossible for us to imagine what happens to parents who are experiencing the physical and mental suffering of a beloved child, fading day by day.

We want to maintain the illusion that death is somewhere far away and that this will never happen to us, in our family. But you can get sick with a serious incurable disease at any age – in infancy, childhood, adolescence, mature. Unfortunately, parental love cannot save children from facing a disease that leads to death.

The life of a modern family revolves around a child, a child is the center of attention, worries, and hopes of all family members. Parents are focused on his well-being and success. They are proud of him, brag about his achievements, upset by failures and are actively involved in his life.

An incurable illness of a child radically changes parents, their relationship with each other and with others. The family closes in its grief, parents hide their experiences from children and from each other. The disease requires enormous emotional and physical strength to treat and support the child.

There are not enough resources for oneself, for the support of loved ones. There is only one goal – to save at any cost. And there is confidence that the child does not need to know what is happening to him, that you should not think about the bad, because it is this bad that will happen. In a situation of shock, adults turn on irrational magical thinking, there is a tendency to ritualism, belief in lucky numbers, and the like.

Parents are afraid to talk about the child’s illness, about forecasts and prospects. Think about what they will do if everything goes wrong and the disease starts to progress. Then there are questions.

Do we have the opportunity to talk about this topic with each other? Can we discuss with loved ones what to do in the event of a serious illness or death? Does the child need to know the truth about his disease and prognosis? Is it important to start a conversation about the fact that the disease cannot be stopped, that there is not so much time ahead as everyone would like?

Can a teenager decide whether to stay in the hospital or go home? And if home, then how will life be built there, and not in the hospital: how to fill time, whether to fulfill dreams?

And finally, is it necessary to talk about death with a terminally ill child?

How do we talk about death?

In our culture, it is not customary to talk about many topics. Parents rarely talk to their children about their feelings, even less often ask about the feelings of their child. They do not talk about growing up and about the difficulties that overtake a child in adolescence. And we almost never talk about sickness and death.

We believe that we do not want to upset the child by confronting reality, but most often, not being able to support ourselves in strong feelings, we are afraid that we will not be able to support the child either. Fear of strong experiences of the child, fear of their helplessness and a huge sense of guilt do not give parents the opportunity to be honest and frank with their children.

Often we do not know how to discuss complex life topics without plunging into the abyss of uncontrolled anxiety and fear. The topic of death is taboo in society.

Why do we perceive death today as a loss, and not as a natural part of life? One of the answers is this: society is aimed at success and youth, while old age and illness are perceived as failure.

In addition, often adults who themselves have long become parents do not have personal experience of interacting with death. How can we tell a child what death is? The well-known psychologist, creator of existential psychotherapy, Irvin Yalom, said that “our attitude towards death affects our life and psychological development, in what and how we lose confidence and strength. Life and death are interdependent; they exist simultaneously, not sequentially; death, constantly penetrating the limits of life, has a huge impact on our experience and behavior.

It is impossible, when faced with a serious illness of a child, not to think that it can lead to death. But awareness of mortality sharpens the sense of life, the value of relationships, manifestations of love. Tinsel, pettiness goes away, much becomes unimportant, the authenticity of life is revealed.

Is it necessary to start a conversation with the child about his condition?

There can be no ready-made correct solutions, there are no algorithms, clear instructions. Each family is unique and decides for itself how frank and honest they can be with each other, with the child.

Will frankness do more good or harm? Each parent answers this question for himself. It is important for some children to know and control what happens to them. For some, information about his condition causes additional anxiety and unnecessary anxiety.

The main rule is to allow the child to ask you questions about his condition, illness and prognosis. Talk about death, if this topic worries him. Ask him if he wants to know more about the current condition and the disease in general. Does he want to discuss what is happening to him.

How can parents support themselves?

Very often, the emotions that overwhelm parents are not connected with what is happening now, but with the fact that they are already anticipating the departure of the child. They mourn him, although he is still with them, alive. Under such oppression, parents are ready to delegate this important conversation to a psychologist, doctor, and other significant relatives.

But no matter how difficult it is, it is important to maintain a sense of family and family support. It is the closest ones who share joys and sorrows with us, it is from them that we expect support and sincerity. But, having become a support for the child in the last days or hours of his life, the parent should not at all remain without support.

Parents themselves go through a huge emotional burden, and it is important to turn to helping professionals. A psychologist cannot replace a loving mother, but he can support this mother. Listen, speak fears, help find the right words.

For believers, a confessor can provide support. Many religions talk about the afterlife or the possibility of rebirth. Believing parents can find support in their faith and pass on this comforting picture of the world to their child. But agnostics or atheists also have their own picture of life and death.

Important information for the child is that the parents will be with him until the end of his life.

Parents should create space for conversation

For a dying child at any age, it is important that he is not alone, that there are parents close by, with whom he can share his fear, anger, anxiety, and loneliness. Those loved ones who do not turn away, do not say “everything will be fine”, do not promise what they are unable to fulfill.

If you are ready to talk about death, it is important to tell how you feel about it yourself. What happens to a person after his death? Do you believe in God and in a meeting after death, or is death a biological process, an endless cycle of substances in nature? Do you believe in reincarnation?

A six-year-old child or sixteen, the principles of building a conversation will be the same: open trusting relationships, respectful attitude towards the child. A small child can be hugged, hugged, kissed and, through a metaphor, tell what is happening to him. Metaphors of death and dying are widespread in culture: for example, when we talk about autumn, we often talk about withering.

It is often more difficult with teenagers – it is not always possible to hug, kiss and be around all the time. Teenagers sometimes say they want to be alone.

The older the child, the more he thinks, understands, realizes. This does not mean that he does not need a trusting relationship with his parents and their support, but this support is different: “I will always be with you, you can talk to me on any topic.” It is also more difficult for parents: on the one hand, they perform all the care, and on the other, they need to preserve the child’s personal space.

He can think about something, but not open up. And it is important to give him this space: “You can be alone, alone. I see that something is bothering you, but are you ready to talk to me about it? Do you need someone, someone you are ready to talk to?

Many teenagers themselves talk about their wants and needs. They may admit that they do not want to die, but want to be treated further. Often they themselves will say if they want to stay in the hospital or if they are tired and ready to be transferred to hospice or go home.

It is very important to hear everything that a child tells about himself and his condition. It is very important to learn to ask questions and hear the answers.

As you prepare for a conversation about death, or even when that conversation takes you by surprise, it’s important to remember three important questions to build on:

1. What do you think, know, feel?
2. What would you like to ask me?
3. What would you like to know?

Both young children and adolescents are very good at regulating the amount of information they are willing to accept about themselves and their condition. The task of parents is to be attentive and respond to the signs and words with which children try to express their feelings.

Let your child share their fears and anxieties with you.

If you feel that you cannot speak frankly with your child, that you are overwhelmed with feelings, do not start this conversation. Invite someone who the child can trust as well as you and who is willing to talk to him. If you decide to talk, it is important to tell the truth. It is not necessary to say everything: the amount of information depends on the desire of the child, but everything that is said must be true.

Another important aspect is to speak in a language accessible to the child, taking into account his age, sensitivity and cognitive characteristics, if any. Don’t promise what you can’t deliver: it’s better not to say “everything will be fine”. Don’t answer questions you don’t know the answers to. It will be more honest if you admit this to a child, invite him to talk to a doctor, nurse, psychologist.

It is better not to give a direct answer to difficult questions of the child: ask clarifying questions. In our culture it is customary to always give an answer, even when we do not have accurate information. Here it is important not to give an answer, but to find out what the child thinks and feels.

For example, he may ask “Will I die?”, but we never know what is the reason for this formulation. This may not always be due to his illness or well-being. Ask why today he asks you about this, if something happened.

And if he asks, for example, what happens after death, you can clarify what he himself thinks on this topic. In order for your clarifying questions not to look like you are walking away from the conversation, you need to not weaken your attention and not be distracted. When a child feels worse in a condition, he can ask a question about it. You need to not be afraid and be open and ready to confirm the fears: “Yes, you really are getting worse.”

Fear of the reaction of the child makes parents weak and closes. It is worth working on the ability to accept the feelings of another. Give your child the opportunity to share with you his fears, anxieties, anger, irritation. Share with him the loneliness of the dying: be there, try not to fuss. This is often the hardest part: just being there.

Be sincere with your child. Do not hide your tears, your feelings, your sadness. Talk about your love for him. Enjoy your time together: it’s priceless.

Be true to yourself. It is important for parents that the child stays with them as long as possible. But if you think about the child, then you need to consider the quality of his life. What matters is not how many years lived, but how. What will the life of the dying be filled with? Chasing new miracle cures or ordinary life at home with family?

If you are honest with him, it will give you confidence that you are doing everything right. And it will give the child the opportunity to be heard and not be left alone in dying, with almost unbearable anxiety and fears.

He has the right to ask questions about his condition and receive truthful answers. The right to remain a child with whims, misunderstanding, unwillingness to do what you want from him. And the right to live the remaining months, weeks, days the way he wants: at home, without observing the hospital regime, and eat what he wants, walk, ride a scooter, chat with friends, do stupid things.

The child has the right to receive your love, care, support, your peace of mind in the face of the unknown. The right to talk about what worries and scares him. Children have more fears than adults, since their world is still full of fantasies, it does not have as much information as parents. Therefore, it is so important to talk about everything that will happen to the child, what procedures are waiting for him, what equipment and why they are used in the hospital and at home.

It is important to believe the child: if he says that it hurts, then he hurts. Only he can appreciate his own pain. She cannot be tolerated. It takes energy and time. Believe him. If your child has difficulty swallowing, trust him. If he doesn’t want something, don’t force it.

In a conversation about death, it is important to hear what the child himself is afraid of. Stay alone? What will hurt? That he will be forgotten? What will it be long? That he will have to feel his powerlessness, apathy and the inability to do something about it? That they will send him to the hospital, put the tubes?

Trust breeds and nurtures love. Only by discussing with him what worries, worries, worries, we show that we are there, that he is not alone, that we love him. If there is space for conversation, then the child can say goodbye to loved ones. Make them gifts. Talk about love. Bequeath how to live without him. Take the word from the parents that they will be happy.

But when the situation escalates, there may be no time or energy left for talking. Perhaps, in the last minutes of life, instead of talking, you just need to be really close, without being distracted by the phone, book, TV. You need to be close to this person, with your child who is dying.

Parents are nearby, but they cannot help him. They can hug, stroke him, say important words: “I love you.” It is important to direct all actions and words to calm and support the child. The time of parental grief and tears will come after.

Don’t shut yourself up in your grief. It is important to remember that you will have time for tears and mourning, and now it is important to help the child. Remember that you can turn to a psychologist, to hospice specialists: they will help you meet your fears and find the right words for a conversation. They will support you.

There are no scripts

There are no ready-made scripts for conversations, just as there is no exact age, date and place when a conversation is needed that every person is mortal. That life is impossible without death. That death is the natural end of life. Such conversation is always spontaneous.

This is the space where parents can express their emotions, cry, support the child that he is grieving, tell the part of the truth that he is ready to hear, and provide support: “I will be next to you, I will help you always, always, never “I will never leave you.”

But it is impossible to plan what words and in what sequence to speak, when to conduct this conversation. Often families who come to the hospice with the words “No, we don’t want to tell him about the forecasts, about the illness”, after some time change their attitude: “Yes, we are ready to talk, but we don’t know how.”

If the conversation took place, then it is easier for parents to maintain a trusting relationship with the child. Usually, after such a conversation, parents say: “It’s good that this conversation happened, because it became easier for everyone. There was a closeness that didn’t exist before, because I was holding a mask, he was holding a mask – we always tried to portray something in front of each other … but now there are no these masks, and there is no need to depict anything … “

It is important to remember that you do not need to insist on a conversation: “We will talk, and I will tell you everything.” It is much better if you invite to this conversation: “I can talk to you if you want. I am ready to be near you, at any time to talk about what is bothering you.

No movie or book can replace a warm and trusting conversation. But reading or watching a movie together can help you start talking about it with your child.