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Living with dying

Talking to children about terminal illness

It can be difficult to decide whether to discuss serious illness with others. Some people said that the worst part about the illness was telling their children, even if they were grown up with their own families.

 

She found it hard to tell her children about her illness.

She found it hard to tell her children about her illness.

Age at interview: 75
Sex: Female
Age at diagnosis: 74
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Eventually, I accepted it, but I think the worst part of my illness was having to tell my children. I have four grown up children and nine grandchildren varying from twenty-seven to four. This was the worst thing, I couldn't sleep all night. I can't really particularly remember what he said when he told me I had cancer but I can remember thinking how can I tell the children and I think... 

I can't quite remember but I think my son phoned me one day when I was crying. I was having a bad day and so he said, 'Oh, what's the matter?' And I said, 'I have to tell you, I've got cancer'. And he just said, 'Oh'. I can't remember what he said but he didn't cry or anything. He's now aged forty. So I said, 'Well can you break it gently to the rest of the family?' and having four children was a great help because they all came to my house. One from Sweden, one from Cornwall and they were able to discuss the problem and come to terms with it in their own way and so when they came to see me they were sort of cool, calm and collected. 

I was also worried about the children thinking that as mother had it, it would be hereditary so I made it quite clear that this is not a hereditary illness, so that was one of the important things about the illness.

Grandparents could often explain to younger children that they were 'poorly' and could not play or look after them as they had. One grandfather talked about the importance of the child's personality as well as age and maturity in deciding what to say.

Deciding what to say and preparing oneself for any questions can be difficult, although friends and health professionals can help. Some parents knew that they could have handled this better. Parents tend to want to protect their children and this can sometimes lead the child to think that the situation is more positive than it is.

 

Her teenage children knew she was ill but not about all the implications.

Her teenage children knew she was ill but not about all the implications.

Age at interview: 43
Sex: Female
Age at diagnosis: 38
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They do know I'm poorly yeah, but I think now they can't remember from, there was only from September to March that we thought I was going to be well again anyway, so by the March time it had come back, so they knew, then because I did tell them I was back at the hospital. I didn't say that the cancer's like gone all the way through my body and you know, and mummy's going to be, you know, terminally ill. I didn't say anything like that. It's just that we did explain that you know we're back at the hospital again. 

This year we're going to the hospital, and they've been, they've been to see me have the chemo, you know they can relate too, because I wanted them to see what went on. I wanted them to see the hospital. They're very good. They took their Gameboys and sat there and played with their Gameboys while I had my chemo.

Something that people talk to me about is the pros and cons of telling children of different ages. Children who are young like yours, teenagers, adult children... How you talk to them about what's talked to you - do you have any thoughts on that?

I haven't told them, this is the thing that we, I haven't told them how bad it is which I don't think they do need to know, I mean why, why throw it at them, they don't need to know it. They know I'm poorly, they know I'm going to the hospital, and we'll just leave it at that. I mean it's as much as they do need to know and when I'm poorly they're there for me you know.

Do they ask you any questions?

No.

So if they asked you questions how would you respond to them?

I'd tell them what they wanted to know.

One woman suspected she might have been too willing to allow her children to assume she would get better. However, a man who, one year earlier, had been encouraged to tell his children that he was dying, reflected that had he done so he would have broken the news to his daughter just before her A levels.

 

She worries that she has painted a picture of the situation for her children that is too positive.

She worries that she has painted a picture of the situation for her children that is too positive.

Age at interview: 50
Sex: Female
Age at diagnosis: 42
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I've always tried to be as positive with them as I can be because my mother died when my brothers were 9 and 13 and that destroyed their lives. Actually, my mother dying... When they did, and I think I've been so conscious of that for my own children that probably I have been too positive sometimes, actually. I don't think I'm probably as realistic as I ought to be with them which is perhaps why they don't appear to be that worried... actually... thinking about it...

Are you saying you think you should have been different to what the way you've been?

Well, I'm wondering now. It hadn't even really struck me till then, that maybe by being more positive about things and not making a fuss about being in pain or because I've been ill or something, maybe I'm doing them a disservice, because I'm actually giving the impression that it isn't that serious! I think that might be the case. Because I know how it affected my brothers when my mother died, and I worry a lot that you know if I died it would affect my children in the same way as it affected my brothers. And it did effectively ruin their lives, I mean, it really did. 

Not just my mother dying but lots of other things as well. There was lots of other things going on but that was sort of a pivotal point, I suppose. So I do worry about that. So I think maybe I do, I mean, they know I go to the hospice. They don't know why I go to the hospice, 'cause isn't that for dying people, and I said "well no, no, it's..." and I've told you the sorts of things I've said.

People who had tried to keep secrets from children who were still at home often felt this couldn't work - as one mother of teenagers had come to realise 'it doesn't do any favours to hide things'.

A man with testicular cancer described how his child had found out about his cancer in 'the worst possible way', from a teacher at school in front of all the other children. Another parent kept her teenage daughter informed because she feared that she might hear about her condition from someone else.

 

Says it was important to keep her teenage daughter informed all the way through her illness.

Says it was important to keep her teenage daughter informed all the way through her illness.

Age at interview: 50
Sex: Female
Age at diagnosis: 48
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Well as I say, our daughter was 15, so very into moody teenager, delightful moody teenager, understandable moody teenager and we were absolutely straightforward. 

In fact we both sat down together and told her after the initial diagnosis and we told her how much we knew. Obviously at that point we weren't completely au fait with the whole situation but I think the most important thing was to keep her up-dated and informed all the way through because I felt that if we hadn't done that, she'd have heard it from somebody else or heard talking on the telephone to somebody and it would have been the most dreadful thing to hear. Information and news about your mum from some other source.

And I think that helped her but we've all been very open in communicating and talk through everything but also taking it at her pace because we tell her, but she wouldn't necessarily want to talk about it then. 

I'm not expecting her to, you know... and being prepared... you know, to have your daughters saying when you tell her, you've got to have another operation or got to have chemotherapy or see you sick again every week out of four for six months. And be prepared to have your child say, 'Alright' and walk off, you know and go and watch the telly. That's ok, because that's their way of dealing with it. 
 

A woman with breast cancer regretted that she hadn't been more truthful and honest when talking to her grown up daughters. One daughter had been upset because she hadn't fully understood that her mother might die.

 

With hindsight she thinks she could have explained the situation better.

With hindsight she thinks she could have explained the situation better.

Age at interview: 68
Sex: Female
Age at diagnosis: 57
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I tried to tell my daughters by inferring rather than by telling them straight out because, remember, they'd been through the breast cancer once. They'd had to deal with that and I did tell them both straight out about the breast cancer. We went out one evening. We went to see both of them and told them. 

This time because the prognosis was so poor, I felt I wanted to approach it in a different way and tell them a little bit more carefully. So I sort of approached it by saying 'Well this is quite a nasty one.'  I told them what was going to happen, that I was going to have a double mastectomy because of this. I didn't tell them there wasn't any treatment. 

I told them about the chances of the chemotherapy not having much effect and I felt I wasn't going down that road anyway and left that for a while. This all went over several weeks as you can imagine.  

And then they began to question it themselves, I mean they're not stupid. They began to realise that I was very low and very depressed and in the end I did tell them what the prognosis was.

My younger daughter latched on straight away to what I was saying and yes was very supportive. My older one, I think because she'd just got a young baby, didn't really quite realise what I was saying and I didn't find that out until later when she'd talked to my other daughter and found out from her. I hadn't realised that I'd not told her properly and she was very upset that I hadn't told her. She thought; I thought I had.

So with hindsight I didn't do that very well. Maybe if she hadn't been tied up with a young baby she might have cottoned on to what I was saying but she'd got a new baby it was all very different. So that's one regret that I've got that I didn't do that as well as I thought I had. I've got no regrets that I didn't tell them straight away because I felt I couldn't tell them anyway, I was still in shock and dealing with it myself.

They've both dealt with it very, very well since, very supportive, very loving, very caring, I get lovely cards from them, they're, they're just lovely, I just couldn't have done without them, or my husband either for that matter.
 

Although most parents say that honesty is important, they take many different approaches and modify them according to their ideas about what the child can take in. Some explain everything, or take their children to hospital appointments while others decide to wait until their children ask questions. A mother realised that she had made a mistake in assuming that her nine year old was too young to be told. One man with two young children, aged 10 and 11, said there was no need to discuss death and dying, and that information should be given “gently”.

 

He suggests factors that should be considered when talking to children about serious illness.

He suggests factors that should be considered when talking to children about serious illness.

Age at interview: 72
Sex: Male
Age at diagnosis: 71
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As far as my daughters are concerned they are as fully aware as I am of every aspect of my illness. At least one of them has always been with me when I've had the appointment with the oncologist. And they've also helped take me down for my chemotherapy as have some of my friends and I've always been very open with everybody about it. I don't see any point in being otherwise. I know patient confidentiality is very important in the medical world, but for me, if I'm talking to someone in the surgery those taboos are pushed to one side. I'm honest, because I think perhaps it may help them to see me being so open and honest about it in some way, in the future or possibly they're in a similar situation as myself, so therefore to me openness is very important. 

With my grandsons, my eldest grandson is aware of what the situation is. My 13-year-old grandson is a very emotional boy so we've been ultra-careful with him and not put too much emphasis on the fact that granddad may not be here much longer.

The younger one's too young to really understand yet...

So are you saying you look at each individual?

Yeah, yeah.

And think about how to talk to them?

Yeah.

And so you're taking into account their age and maturity. Are there any other factors you think we should take into account when talking to children?

I think we've got to be honest with them we mustn't build their hopes up with false beliefs. I think that's a wrong thing to do. Having said that I think we've got to be very careful particularly in the case of an emotional child because it could have a very detrimental effect on them. But having said that I think we have to prepare them for what is inevitable so they can handle it better when that time comes.

 

Suggests that young children don't need too much information at a time.

Suggests that young children don't need too much information at a time.

Age at interview: 32
Sex: Male
Age at diagnosis: 31
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It's harder, I think it's... when you're trying to tell your own children it's harder, you know. You don't want to tell anybody's children, you know you don't, 'Oh by the way your Daddy's doing this and that' because you don't want to tell anybody's child that that's what their Dad... happened with their Dad. And when it's your own it's hard. 

It's... I want to be there for them when they're older but I know I'm not and unfortunately that's the cross I have to bear. And unfortunately for them, they do know what is going on, to a degree, and I'd rather leave it unless they bring it up because then that way, when they bring it up they understand it. You bring it up and there's too much information, too quick, too soon and they won't understand what's happening.

So this point about letting them bring it up and then to be sure that they're at a point there and they can understand so far?

Yeah, they can understand a bit more because they've asked and then that way you can go in, if you need to go into depth with it, you can go into depth with it and they understand that little bit more. But at ten and eleven [years old] they're still young, they're still kids. They don't want to know about dying; they just want to know about living and you just try and teach them how to live that little bit longer. Teach them how to live, not hold their fear, hold their fears in because if they hold their fears in then that's wrong as well. But let them live and let them be children, you know.

Apart from what you've just said, which is really helpful for other people to think about, have you got any other tips on how best to talk to children?

Simply. Just do it easy. Don't go into a dialogue or anything like that. Just say... I don't mean just like, 'Oh by the way I'm dying', because that don't work either. Tell them that you're ill but don't over emphasize anything else. Explain why you don't go to work, explain why you don't do this or that but don't... you don't have to go into the full details because they just get confused and upset and worried. And then you've got another person that you've got to think and worry about, because they don't need to know that. 

Maybe as it gets on and they get on, then maybe you tell them but you don't... there's no need to tell them everything. They'll see it, you know.

School teachers, perhaps using books and videos, may be able to help children to understand the meaning of serious illness. Doctors, nurses and other health professionals can also help to communicate bad news to family members, including children or to answer questions from the family. Hospices also have counsellors who can offer help and advice about breaking bad news.

 

Suggests that school teachers can use books and videos to help children to understand and deal...

Suggests that school teachers can use books and videos to help children to understand and deal...

Age at interview: 52
Sex: Male
Age at diagnosis: 37
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Have you got any advice you can give people about how to talk to children?

Yeah, you need to do it in conjunction with the teachers at school. 

These teachers... part of teacher training is the psychology of dealing with bad news, how to deal with bad news. I've actually sat in on something called an inset day at school, where they actually talk about how to deal with bad news, how to deal with children that have bad news. These people are trained. There are some incredibly good books and good literature. There are some good videos and a lot of the cancer charities especially and the cancer organisations have literature and information that you can look at. It is pointless to sit them down and say, "Mummy or Daddy is going to die, they have cancer etc."  

You have to introduce it in a way, and you have to introduce in such a way that they don't feel alienated. They don't feel betrayed, they don't feel let down.  

 

The breast care nurse helped to explain things to the children.

The breast care nurse helped to explain things to the children.

Age at interview: 50
Sex: Female
Age at diagnosis: 42
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With my own children, because as I said to you before, they are very bright, they pick up on things very quickly. We've always been a family that actually did talk about things. At one time I worked as a family planning nurse and we used to talk about sort of some of the taboo subjects as dinner table talk, like sex and you know, contraception and things, and so when I did speak to them about it I found it quite easy to talk to them, though I did make the mistake of not telling everybody everything right at the start, because I thought the youngest one was too young. 

I think really, you've got... It's difficult, it depends on the patient, it depends on the children really. I'm quite articulate, my children are quite bright and quite articulate, so you can talk to them about most things, but not everybody is articulate themselves. 

And despite all of that when I was first having treatment for breast cancer I did actually get the breast care nurse where we used to live to come and actually talk to my children about the disease and answer any questions or worries that they had.

And I found that quite helpful for me but also I think they found that quite helpful, and I think that they put their minds at rest and we didn't talk about things a lot after that. 

 

Before explaining the situation to her sons she decided to get advice from a counsellor at the...

Before explaining the situation to her sons she decided to get advice from a counsellor at the...

Age at interview: 61
Sex: Female
Age at diagnosis: 59
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There is one more hurdle I have got to overcome and that is really and truly explaining the position to my sons, but my nurse said to me this morning that in fact there is a service available through the hospice, a counselling service and if I wanted to that counsellor would actually sit down with my sons. 

I wouldn't go that far, I mean it is something I will do myself, but perhaps I will try and have a chat with this lady first to give me an idea of how to actually go about it. So I will do that, yes. Next time I see my nurse I will ask her if she can put me in touch with this person.

How children react to the news that a parent is seriously ill depends on the child, the situation, and support they have. Teenagers in particular can seem to be so wrapped up in their own lives that their parents may wonder if they have understood that the illness is life threatening. A woman with colorectal cancer explained that her teenage daughter needed space and time to adjust to changed circumstances. Another woman, seriously ill with lung disease, had told her teenage children that it was OK to get angry about her ill health and to cry.

 

Explains that children need time to adjust to serious illness in the family.

Explains that children need time to adjust to serious illness in the family.

Age at interview: 50
Sex: Female
Age at diagnosis: 48
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I'm not expecting them to sit down and say, 'How do you feel about it? What can I do?' because they're teenagers and at the moment they're number one and you're down there. 

But being there when they need to come back and expecting them sometimes to be really angry because their life has changed and trying to understand that, which is hard because you're dealing with things yourself and your life has changed but their life's gone out of kilter too. 

And simple things like... our daughter was never used to having me at home and she loved coming in the house after school on her own, chilling out for an hour, eating the wrong foods and watching unsuitable television, and suddenly I was here, and she thought, 'Oh god'. She thought it was awful. You know, I know it's not supposed to be like this, families, but we've sorted that out now. 

And now I'm better, I try and walk the dog at the time that she comes in, you know, trying to keep things in some ways the same and although of course they will never be the same but, you know, giving teenagers the room to spend some time to mull things over and want you to just be the same as you ever were and that's not possible but that be done gradually, you know.

 

She told her children that it is OK to be angry and to cry and that she will try to be their...

She told her children that it is OK to be angry and to cry and that she will try to be their...

Age at interview: 41
Sex: Female
Age at diagnosis: 24
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What kind of things have you said to them to try and prepare them?

I've told them it's OK if they get angry. I don't mind, you know that's OK, you're allowed to be angry. You're allowed to cry. I've tried to let them see that I will be there for them. They won't be able to see me but I will be there. I will be around making sure they're OK. I'll try and be their Guardian Angel if I can and I've told them that.

So you're trying to convey to them that even when you're dead you're still going to be with them?

Yes, especially with the younger one with the AS [Asperger's syndrome]. I've sort of told him it doesn't matter, a person living is only just a particle, if that particle goes the memory doesn't. The love doesn't go; it's left its imprint so that will always be around.

What other sorts of things have you tried to get across to them about how things are?

They get upset when I have bad days. The eldest one thinks I should go in hospital and can't understand why I don't want go in hospital, I want to be at home. With the younger one, he knows I don't like hospitals so he tends to you know... although he gets frightened and gets very protective if I have bad days. He also gets frightened if it's a bad day. It's not the easiest thing.

Are you able to talk to them about what the future might be?

I try to yes, I try to

Or do you feel that's not appropriate?

I try not to look ahead. We take one day at a time and if bad days are there then we try and forget they're there, so they don't have to look back on them. I tend... bad days I tend to detach myself from them so they don't have the memory of it.


 

See our dying and bereavement resources for more information.

Last reviewed July 2017

Last update May 2010.

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