Let's talk to kids about death
Notes from a conversation with a hospital priest and palliative care specialist
A few years ago, I worked on a project exploring how we can normalize having conversations with children about death. I had the privilege of speaking with Tom Andersen Kjær, a priest and palliative care specialist at Herlev Hospital, about his work in helping children learn about death and cope with loss.
Tom had a warm demeanor and spoke with childlike enthusiasm as he recounted stories of his interactions with families at the hospital and in his work as a priest. Sadly, he passed away the year after I spoke to him.
The following are excerpts of what he shared during the session. I’ve tried to keep this as close to verbatim as possible with some minor changes in structure and grammar. Sentences in bold are my emphasis.
The forgotten mourners
Children are often forgotten mourners. They often have an experience that fellow young ones don’t have. If you are in kindergarten and you lost your mother, you are the only one. Or if there are others, if we don’t talk about it, you don’t know that you’re not the only one.
The part of life we don’t have the culture to cope with today
In the old days when people lived in the countryside, if a person was dead, they were put in their bed and everyone in the village came to say goodbye. Often children went along with their parents. They learnt from the grownups how to be, how to react.
But today when death has been moved to the big institutions like hospitals, we don’t have that education. A lot of grown-ups don’t know how to react, so they can’t teach kids how to react. We have a part of life without the necessary culture to cope with. A lot of what I’m doing is to offer some sort of cultural aid so that it becomes easier to live with this experience.
In Denmark we have a lot of “far death” in the media: when we watch it on screens and our phones. If it’s too much we can always switch to something more pleasant. But when a person dies, it’s a “near death”. A lot of children experience death on screens, like in computer games. But you can get another life if you die in a computer game.
Supporting children in making sense of death on their own terms
When children are very small they just understand “She’s not working anymore.” That’s the first knowledge of death.
I will take the children by the hand and tell them what’s going on e.g. “See now dad is not suffering anymore. Isn’t it a bit odd, is it like he’s sleeping or something?” or “Grandma’s dead, now she’s cold. Sometimes it looks like she’s going to open her eyes and say ‘Oh I cheated you’, but it’s not.”
We try to find the words, what corresponds with the children’s experience in the situation, so that there is some kind of common language.
I’m always very curious about what children think. Not because I don’t want to share my views with children but I’m more interested in what they think and how I can support that. They are the ones who are going to live with that, they will not be helped if I try to force my view on them.
A lot of children have thoughts about where the dead one goes. They talk about how “My grandmother is a star.” I ask “When she’s on this star, can she see what you are doing? And what do you think she thinks of what you are doing now?”
I move into their world, their universe and unfold that. Because one of my main thoughts is that as human beings it’s very difficult for us to think that the one we loved don’t have any place anymore.
Tradition is not firm, it is something developing depending on who you are. My way of helping people is to help them reinterpret tradition. In a religious sense, it helps to re-contextualize the Biblical and religious thoughts into their lives. But they are the ones who are the interpreters. I am the midwife, they are the ones doing the labor.
Allowing children to be participants in rituals
Yesterday I had a funeral, one of the patients had cancer. She had 4 grandchildren and they were at the service. During the funeral, I had to say something personal. I mentioned their names and experiences they had with their grandmother so that they were a part of this and not just spectators.
I think it is important that in rituals we are all participants. A ritual helps us, it is a setting that helps us move from one part of life to another.
A lot of children who want to be a part of it but are not allowed to feel very strange. It can be like a wall of emotions made by grown-ups. If the children are not allowed to be a part of the situation, they become either very naughty or very pleasing in order to get attention and that’s not natural.
When we lose a person, every one of us is making our own biography of that person. We have to share biographies with other people and the funeral is the place where this process starts. That’s what bereavement is about — sharing emotions, thoughts, mine and yours and we make a common story that makes us be able to live without that person.
When I have a family where children have lost someone, I ask if they have some best friends. “Would it be appropriate that they were at the funeral with their parents, so that it’s something they had in common?” Very often, it is. You have to invite them, they often don’t come by themselves. They don’t want to interfere. If this is a common experience, it’s much easier to talk about it later.
Loss evolves throughout life
It’s important to help children grow up with death during the different facets of life. If you lose your mother when you are 3, what it means is different when you are a teenager or when you get your first boyfriend or when you have your own children. Maybe you would like to ask your mother how was it like for you at that time and it’s not possible, so you know in a way mourning is something living.
When you have lost your mother and you are playing in the football team, it’s not always that the coach cares or thinks about it. The other parents are standing and watching, you might miss your mother when you make a great goal or a swim. Your teammates, their parents — it’s not always that they think about it.
People often think “they will get over it”, “we must get on”. It’s very common because we have psychological theories where grief is something you have to work through. They often get tired and don’t see the need for constant support. I think that’s a very big gap because if you have lost someone, you have a love that doesn’t stop…but it’s important that that person lives in our minds and hearts. They are part of us as long as we live.
Dilemma of the modern hospital creed
One of the challenges is that in modern hospitals there is an ideology that we can make everyone healthy again. [We have] to give room for the experience that sometimes we cannot do everything we want to do, and sometimes it’s not right to treat, it would be better to stop the treatment and have a good time. Sometimes the one who is treated is treated so much that death has become more difficult than it ought to be.
We talk about hospices in Denmark but very few people can go to hospices and special wards.
Most people die in the hospital ward which has another main function other than taking care of the dead and they are measured on that. Which means that there is very little space to take care of dying and of children.
Most of us in the hospital, we are educated to take care of grown-ups and not of children. That’s a great problem that I feel sometimes I have to be an advocate for. It’s not going to be easier because we have more and more advanced treatments but we don’t have funds. It’s always the care that comes in 3rd, 4th or 5th place.
The worst has already happened, let’s talk about it
If you have lost someone, in a lot of those situations the people around don’t talk about it because they are afraid they are doing something wrong. And I always say the worst thing has happened, she has lost her mother, you can’t do anything that’s so wrong.
Sometimes when I’m going to the church in my gown, they [the children] ask “Oh are you going to bury someone? How old was she?” I think that would a good place to start because you experience the loss in everyday life so you will have to talk about death in everyday life and make it a part of it. I think if we talk about death we may be more grateful for what we have. Today I’m healthy, I’m living, I have my children, I appreciate that.
(My heartfelt thanks to Tom’s family for allowing me to share his beautiful perspective and the work he has done in the area of childhood bereavement)