Children who are dying often understand that they are indeed dying. A major task for healthcare professionals is to help children, parents and siblings to talk about it. But how do you do that?
Text: Annika Lund, first published in Medicinsk Vetenskap nr 1 2025
Ulrika Kreicbergs , professor of palliative care at the Department of Women's and Children's Health , Karolinska Institutet, has worked with paediatric palliative care for over 25 years. Much of her research focuses on communication with and between children, parents and siblings.
- 'Early on in my career, I noticed that some children understand that they are dying. I felt that they must be allowed to talk about it if they want to. Otherwise, we leave them completely alone with difficult insights,' says Ulrika Kreicbergs, a researcher at the Department of Women's and Children's Health at Karolinska Institutet and at the Great Ormond Street Institute of Child Health in London.
She has approached the subject in various ways. A study published in 2004 included about 450 parents who had lost a child. About one-third of them had talked to their child about the impending death. None of them regretted it. But among the parents who had not talked to their child, about one-third felt regret. All the families lived in Sweden.
- We conducted a similar survey in 2016, and unfortunately, the figures looked almost the same. I think these studies are the most important I have done. We need to be observant and see the children who know they are going to die so that we can help parents and children interact before it is too late,' says Ulrika Kreicbergs.
She has also investigated how conversations take place in the families where they occur. And usually, it is the sick children who bring up the subject themselves. In many cases, it is stories, films, drawings, or music that make it possible. The study describes how a six-year-old boy watches the film Änglagård, where one of the characters dies. In the film, the person is placed in a coffin and a pillow is placed under the head. The boy then says 'I want a pillow like that too'.
- Children who are not even four years old can understand that they are going to die. 'We hear about children who used to pack lots of things when they were going to the hospital, but when they understand that they are going there for the last time, they only pack Bröderna Lejonhjärta,' says Ulrika Kreicbergs.
Fairy tales open up dialogue
Offering fairy tales, films, opportunities to draw. or listen to music can open up conversations, she says.
- 'If a child has drawn their entire family, but with one sibling missing and an angel next to them, then you can ask about it. You can ask 'who is that?', 'what are you thinking now?' and 'is there anything you want to talk about?', says Ulrika Kreicbergs.
She has also studied the experiences of siblings of children who die. In a study from 2015, an absolute majority, 84 percent, said they had not been informed about what was likely to happen at the time of death. Half said that death came as a shock to them. Seven out of ten felt that their sibling suffered during their last hours of life, and only half felt they had had the chance to say goodbye while their sibling was alive.
The children who said that no one had talked to them about the impending death had higher levels of anxiety several years later than siblings who felt they had had someone to talk to.
