8 Talking to Children

Elaine Sugden

  • Book Chapter


TALKING TO CHILDREN

Elaine Sugden

Children and death1

Much as we would like to, we cannot protect children from death. Children themselves die and parents of dependent children die. Both events are indescribably sad. Different families will do things differently, but we hope that this chapter, together with some of the suggested resources, will be useful to anyone trying to cope with or to help in this difficult situation.
It is important at the outset to use the words ‘death’ or ‘died’. Words or phrases like ‘lost’ or ‘passed away’ can be confusing for children. If someone is ‘lost’, why isn’t anybody looking for him/her?
This chapter will look firstly at children’s early experiences of death and the maturing understanding of teenagers, followed by experiences of the death of a parent, brother or sister and then of a child’s own death.

The Death of a Pet

Children, like adults, need to understand that death is a natural part of life. The death of a pet is often a child’s first introduction to the loss and grief of death. Pets can die after an illness, suddenly after an accident or with general failure as they become very old. Although the pet might look to be asleep there are no signs of life; the pet is dead.
Young children often ask a lot of questions. It is important to listen carefully and think how to respond in a simple, straightforward way. What is said and how, together with support for the child, as the pet is spoken about lovingly and with good memories, will help. It will also give the child a way to relate to others who have had a similar experience. Children copy the behaviour of adults.

General understanding of death in childhood

Children’s understanding of the death of a person changes at different ages. A pre-school child might not understand the word ‘death’ and might continue to expect the person to return. It is not unusual for a child to think they can get the person back, particularly if they do something special or perhaps just ‘be good’. We should always try to answer their questions truthfully; short, honest explanations are the best. It is not wrong to say ‘I don’t know’ when that is true.
There isn’t a perfect way or the perfect words to say. What matters is that what is said comes from the heart, with honesty and love.

‘I told my little boy that people die when their bodies really don’t work very well any more, that they are very, very ill, and that then it is the right time to die.’ (Quote from a mother of a 3-year-old who asked, ‘Why do people die?’ and, ‘When will I die?’ This 3-year-old boy had a 5-year-old brother who was very ill and died a few months after this.)2

By the ages of 6 or 7, magic and myths are important ideas, children are curious and imaginative. They might start to talk about heaven, paradise and an after-life. They will link a death to what they know and begin to realise the finality of death.

When told of the death of their great grandmother, my cousin’s children were then aged 6 and 5. One asked: ‘Who shot her?’ and the other: ‘Did she go to heaven in a rocket?’

This is the age when children start to feel responsible. They must be reassured that the death of a person special to them is not their fault and that it is okay to enjoy themselves.
Understanding develops during childhood and usually, by the age of 10 or 12, children understand the finality of death. Not all children will have talked about death with their families before someone special and loved dies. They need to know that whatever happens there will always be someone
to take care of them.
Some children don’t want to talk and don’t ask questions, but those caring for them – parent, teachers and others, might see changes in behaviour.

Teenagers

Teenagers have an adult understanding that death means the end of life and body, but not how to cope with it. They are becoming independent from parents and may consider themselves indestructible. Self and body image are important and they will have ideas about the spiritual aspects of life and death. The reality of death challenges their ideas of themselves. Some teenagers are very emotional; some want to talk and ask questions whilst others prefer to find help from friends rather than from family. Some need to be alone. Feelings go up and down; guilt, anger, loss, can lead to reckless behaviour, such as fighting, drug or alcohol abuse or sexual promiscuity. School avoidance or poor performance at this stage is common.
Teenagers, like adults and children, need to be listened to and given the opportunity to ask questions, tell their stories and share their grief. They may look like adults, but they are not yet adults. They are not in a position to ‘be strong’ or ‘grown up’, or to ‘care for the family’ as they are often encouraged to do. They need time to mourn and grieve. Caring adults can help teenagers cope with their grief, which is a natural expression of love for the person who died. It is all right to be sad and to have lots of different feelings, but expectations for good behaviour should be maintained. Exercise, music, art or other activities might be unexpectedly useful, and doing things, like playing games together, can give opportunities for questions and conversations. A peer support group can be very helpful. Professional help is sometimes needed when grief and its outworking are producing serious and unsettling consequences.

Spiritual understanding of death

For many children this will be affected not only by age but by the religion and beliefs of their parents. The children’s bereavement charity Winston’s Wish suggests the following: It may be best to say something like: ‘People have all sorts of beliefs about what happens after someone dies. We know that they can’t come back and visit us or ring on the phone. Being dead isn’t like being in another country. These are some of the things that people believe – and I believe this…. I wonder what you believe? You may change what you believe as you grow older.’3

The Death of a Parent (or main carer)

Each day in the UK more than 100 children lose a parent.4

One of the saddest events is the death of a parent of a dependent child. I remember a mother with imminentlyterminal cancer who came to my clinic. Her husband described how just that morning they had told their two young children that mummy was soon going to die. We shed tears together. At that time, I too had young children.

When the parent is dying

Those who work with children whose parent is dying emphasise that it is important for children’s lives and routines to be kept as normal as possible. Time with the parent is also important, and for them to be allowed to help care for mum or dad. However, it is also important that the child is not the main carer. Help must be appropriate to the age of the child; children must be allowed to be children. Older children can helpfully be kept informed about how the illness is progressing, and what is happening to the parent. Those dealing with children who have experienced the death of a parent say that such involvement helps the child later on in bereavement. Keeping children (of whatever age) away, although done with the best intentions, has been found to be less helpful.

School

Children benefit from continuing to go to school. School keeps at least part of ‘normal’ life, and older children can find friends a source of strength. But the school should be informed about the situation so that teachers and other staff can be aware of the reason for any changes in behaviour.

‘He was very distracted in class. I had no idea his mother had died. He never told us and I never thought to ask.’ A teacher, in Beyond the Rough Rock 5

After the death of a parent or parent figure

The decision as to whether or not the child sees the body after death will depend on the other parent or main carer and, most importantly, on the wishes of the child. It can be helpful for a child to see the parent’s body (which will usually be at the funeral directors), but someone they trust should prepare them for what will happen: who will be there and what they will see. They need to know that the body will be cold, because it is not working and that it cannot feel pain anymore; imagination is less easy to manage than reality. It is often better to see that the parent they love has left the body because it is no longer needed. Soon the body will be buried or burned.6
It might be necessary to change this advice somewhat if the body is mutilated, but even then it might be possible to see part of the body.

'My body is just my reflection – when you die you leave your reflection. Your real self leaves your body and goes into another world' – said by an 11-year-old boy a year before he died.7

Children, like adults, will vary in their wish to visit a grave. Some want to be there soon and often, whilst others might take many months or never want to visit. Try to leave the opportunity open, but do not force.

Ongoing concerns

Children are often worried that they, or another special person in their life, might die soon. Although unlikely, it can happen. As always, it is important to listen and take their concerns seriously. Reassurance that they will always be loved and cared for is important.
You or the child might fear that details of the one who has died will be forgotten. Talk about the person, build and save memories of special times they enjoyed with that special person. Cry together.

Don’t forget: children and adults usually like to talk about the special person who has died, long after the death. They want to keep remembering the person and what he/ she meant to them and others. The death anniversary is a special opportunity for remembering.

Death of a parent or main carer from suicide

Winston’s Wish, the bereavement charity for children notes, that 1 in every 10 children they work with has had a parent die from suicide. Each year around 6000 families are bereaved by suicide.8
It is difficult to talk to adults about suicide and, usually, even more difficult to talk to children, though often children understand more than adults think they do. Not telling the truth and having family secrets can bring extra problems later on.

Joe was a young teenager when his mother disappeared and later was found dead. As an adult, Joe said: ‘It was not spoken of, never discussed in the family at all, I cannot remember ever having a conversation with my father about it. That was the way the family coped. I felt that I was to blame. I think I’ve spent a lot of my life trying to make up for it. My last memory of her was of her being very angry with me. I can’t remember what I had done.’9

The most usual question after a suicide for both children and adults is ‘Why?’ Even if a note has been left, the question remains. Everyone connected to the person only has part of the picture.
The most usual reaction of a child or adult to the suicide of someone close to them is guilt and the feeling that they are in some way responsible or that they might have been able to prevent it. Also, the family can feel there is a stigma, which adds to their bereavement burden.
Children in this position often have questions to ask and a story to tell. It is important that they are given the opportunity to talk. Once again, honesty is the best policy and it is best for children to be given simple but truthful information. They need someone to listen to how they are feeling and give them strong reassurance that it is not their fault, and that they will be loved and cared for.

The Death of a Brother or Sister

Might this happen to me?

When a brother or sister is very ill, dying or has died, it is very common for brothers and sisters to worry that they too might fall ill and die. They need any questions to be answered honestly and simply, and they need a great deal of love and reassurance. It might be very difficult for this to come from grieving parents. This is when a trusted and loved relative or friend can have an important role.

Feeling left out

There can also be understandable concern about all the attention being given to the one who is ill. After death, there can be the idea that the child who has died was ‘the favourite’. It is not unusual for parents to give all care and attention to the sick child, feeling that they can ‘make up’ to their other child/children later on. Sadly, this does not seem to work well. Children need day-to-day assurance that they are loved and cared about just as much as the ill child. Even young children are aware when things are difficult for the family, and that a brother or sister is very ill and needs special care. If it is impossible for the parents to do so, it is helpful for someone to be there to answer questions and give undivided attention to children who themselves are very worried about their ill brother or sister.

Let them be involved

Those who have dealt many times with this situation in the capacity of a nurse, social worker or teacher, advise that it is best for children to be involved in some way with the care of a dying sibling. Even though this is the professional view, which should be shared gently and with support, parents know their children best and their decisions must be respected. Wherever possible, it is also good for brothers and sisters to play and do other normal things together.

The death of a child

The death of a child in the UK is uncommon, but even so, around 5,000 children between birth and 19 years die each year. Around two-thirds of those deaths happen in the first year of life. Different causes are more common at different ages, but after the first year, injuries, poisoning and cancer contribute significantly.10
For the families of these children, statistics are irrelevant; their child dies. No two deaths are the same. Some deaths are sudden, and without time for any sort of preparation. Others have a longer illness or disability during which some grieving often starts to happen.
Although I have used information from several sources as well as from my own experience, I would thoroughly recommend a booklet called ‘Facing the Death of Your Child’. It is available now to read online or download.11

Talking to a child who is expected to die

It is an individual decision for a parent of a dying child if, when and how to talk to their child about dying. The parent lives on after the child’s death, and it is important that they feel they have had control and done what felt right for them. Some parents want to make preparation for death and a funeral whilst the child is alive but many don’t want to.
Teenagers in particular sometimes want to ‘have a say’ about what will happen at their funeral.

All but two parents in an interview study of 13 children (ages 8-17) with life threatening illness, wanted to be in charge of what their children understood and were told about their illness. Some children, younger and older, felt they wanted to hear directly from the medical staff about their illness and response to treatment; others were happy to learn everything from their parents.12

Children can be involved in decisions about their own treatment. Parents must sign the consent form, but whenever possible, children should agree.

‘It’s better if they tell you most things because most people like to know what’s wrong. I know I did.’ Quote from boy with cancer, aged 10.13

Deciding not to talk

It is understandable that some parents in this situation make the decision not to talk to their child about death. Sometimes, parents make every effort to make sure that neither they, nor anyone else speaks to their child about dying. They fear that they, as well as the sick child, will ‘lose hope’. This can be particularly difficult with older children and teenagers who realise they are not responding to treatment. They spend time talking with friends and probably know they are going to die but, also know that the parent does not want to discuss this. Some parents always intend to tell ‘when I need to’ or ‘when the time is right’ or ‘sometime’. However, when questions have not been answered honestly from the time of diagnosis, it can be difficult to change the approach.

‘Our daughter was only 10 and we decided not to tell her. The doctor said from her experience it was best to tell – I wanted to but we just couldn’t tell her.’ Quote from mother whose daughter had a new cancer diagnosis 14

Sometimes, parents do want to discuss and give their child every opportunity but their child does not want to talk with them,though might talk to a brother, sister or friend.

‘Be Honest. Ultimately honesty is probably the best policy but the presentation of truth will differ from child to child and family to family.’ A senior children’s cancer specialist 15

Children’s Questions

Most children, whatever their age, ask questions, though sometimes not many. Questions are a good way of knowing when a child is ready to listen, as well as what they want to know (this also works with adults).

‘My lovely daughter actually wrote on a piece of paper, “Am I dying?” She couldn’t talk but I could explain to her. I said, “Yes, we think you are not going to get better this time and that you will die.” I couldn’t believe it when she actually wrote back, “Thanks for telling me, that’s what I thought too.”’ Mother of a 16-year-old girl16

This task of answering questions honestly is not easy, but very worthwhile. It is probably easier if done from the start of a difficult diagnosis. ‘Kids can cope’ in a way we do not imagine they can.
Children and teenagers often know that they are seriously ill whether or not they have been told. They might have guessed, overheard someone talking or had a dream.

Consider asking for help

It is not easy to talk to your child when there is a serious diagnosis, and if you are in this situation, you might need help. Be prepared to ask for help from medical and nursing staff, social workers or play specialists, especially if you know that someone seems to have a special relationship with your child.
Families find they grow closer when they are honest with one another, rather than avoiding painful issues. The opportunity might be lost for parents and children to voice their love for one another, to cry together or for a child or teenager to say what they would like to do before they die, or even what should happen at their funeral. Parents continue to be surprised by the maturity of their children and what they are thinking.

Information Step by step

The information might need to be given over a period of time, answering questions honestly and straightforwardly.

‘My brave, brave son asked me, “Am I getting better, cos the chemo has been stopped?” I told him, “We have stopped the chemo, because it is not working any more….” A few days later he asked me, “Does that mean I could die?” and, together, his mother and I sat down and told him, “Yes, you could.” I never want to go through that talk again. I thought I was going to be sick. Again, a few days later he came and asked a bit more. It taught me how he really needed only a tiny bit of information a bit at a time. It made it much easier for all of us, in a sad kind of way.’ Father of a 10-year-old boy17

How will my family cope?

Children’s major concern in this situation is often for their parents and how they will cope without them. Dying children are less distressed when the family share their grief and show love to one another, as well as to their suffering child. Sometimes, the dying child ‘hangs on’ to life because of worries about how mum and/or dad will cope. They need to be reassured that it is alright to ‘let go’ and that all the special people: mum, dad, brothers, sisters and others will be OK because they will continue to love and support one another.

Medical decisions

It is not possible to save every child’s life. Sadly, the time comes when a child’s illness is no longer responding to treatment and the child is almost certainly going to die

Doctors, parents and, where appropriate, older children, agree together that treatment against the disease is not working and that the main task now is to make sure that remaining life (and death) are as comfortable as possible.
Sometimes parents or the wider family are unable to accept this plan, and decide to take their child overseas for the promise of ‘more successful’ treatment. The media makes much of these cases, especially where fund raising has been involved. We tend not to hear of the later, inevitable, deaths of these children.
The time comes when there is a move from active treatment and investigations to what is called ‘palliative care’, which involves the management of pain and other symptoms. Children’s hospices can play an important part in helping families to cope in this situation. Some families want their child to die in the hospice or in hospital, but more usually, the child will die at home. Either way, they will die surrounded by their loving family.

The sudden death of a child

In the situation of the sudden death of a child, there is no time for these decisions. Parents are thrown into bereavement and need deep understanding and care from family, friends, the secular and faith communities, as well as the medical profession. Many have also found help from local or national support organisations, some of which are listed in the Appendices.

In the UK in 2014 18

2,129 children and young people died between the ages of 1 and 19 – that is around 6 children and young people per day.
2,013 babies died within 4 weeks of birth.
A further 911 babies died before reaching their first birthday. This chapter has explored aspects of death involving children and has drawn widely on the experience of many. Even so, there will be more that others would want to add.


The key points of this chapter

• The understanding of death develops with the child
• Teenagers have an adult understanding that death means the end of life, but would not be expected to know how to cope with it
• Answering children’s questions from the start honestly and with love is the best policy and draws the family together
• Children should not be the main carer for a dying parent, but usually find it helpful to be involved in caring in some way
• Children cope with their own early death better than we might fear
• Brothers and sisters should be involved, not excluded, and their daily need for attention and love supplied.


Notes
1 I acknowledge invaluable help in the content and structure of this chapter, which I received from Sister Frances Dominica, Kathy Moore and Margot Shawyer. They generously shared their professional knowledge, advice and time. In addition, I drew heavily on a publication from the Children’s Cancer and Leukaemia Group (CCLG) entitled ‘Facing the Death of Your Child’. This gives some very general information about children and death, as well as detailed information for the parents of a dying child. With permission, I have used some of their stories.
2 ‘Facing the death of your child’, CCLG publications, April 2015 www.cclg.org.uk/our-publications/bereavement/facing-the-death-of- your-child
3 Winston’s Wish website, ‘Supporting You Talking About Death’ www.winstonswish.org.uk/talking-about-death
4 Winston’s Wish website: About Us Facts and Figures
5 Beyond the Rough Rock, Winston’s Wish publications https://winstons-wish.myshopify.com/collections/books
6 See What Happens When Someone Dies: A book for adults and children to share together (SeeSaw publication 2014) for helpful pictures of a funeral. www.seesaw.org.uk
7 Sister Frances Dominica, ‘Just My Reflection – helping parents do things their way when their child dies’, www.helen&douglas house org.uk 8 Child Bereavement UK Why Are We Needed – statistics www.childbereavementuk.org
9 Alison Wertheimer, A Special Scar – The Experiences of People Bereaved by Suicide (Routledge, 1992).
10 ‘Why Children Die: death in infants, children and young people in the UK’, RCPCH report 1014 Woolf et al: www.ncb.org.uk/media/1130496/rcpch_ncb_may_2014_-_why_ children_die_part_a.pdf
11 www.cclg.org.uk/our-publications/bereavement/facing-the-death-of- your-child
12 Young et el., BMJ 8.2.2003
13 British Medical Journal, 8.2.2003, p305-308.
14 Ibid.
15 In Children’s Cancer and Leukaemia Group Contact Magazine, Autumn 2003: www.cclg.org.uk/Contact-magazine
16 Facing the death of your child, Children’s Cancer and Leukaemia Group CCLG publications, April 2015: www.cclg.org.uk/our-publications/ bereavement/facing-the-death-of-your-child
17 Ibid.
18 Child Bereavement UK, Why Are We Needed – statistics: www.childbereavementuk.org

Other resources

www.rcpch.ac.uk/improving-child-health/child-mortality/child-mortality Winston’s Wish – Support, guidance and information from experienced professionals for anyone who is concerned about a child facing the death of a family member or who has already been bereaved.
Helpline and publications: www.winstonswish.org.uk
‘As Big as it Gets: supporting a child when a parent is seriously ill’,
Winston’s Wish 2012
‘Beyond the Rough Rock: supporting a child who has been bereaved through suicide’, Winston’s Wish 2008

Other useful publications not specifically mentioned in the text:

Levine, Stephen, Who Dies: An Investigation of Conscious Living and Conscious Dying, (Gateway Books), chapter 9, ‘Dying Children’. ISBN 0-946551-45-6
‘Talking to Children and Teenagers when an Adult has Cancer’, Macmillan Cancer Support 2016, edition 3
https://be.macmillan.org.uk/be/p-20644-talking-to-children-and- teenagers-when-an-adult-has-cancer.aspx