Palliative phase

For parents, deciding whether to tell their child that they will die in the near future is often very difficult. There is no single right answer, as this depends on the child’s age, their understanding of the illness, and the parents’ preferences. Most parents choose to tell their child that they will not get better, or they use metaphors and give the child space to ask questions. Many children seem to improve after treatment is stopped and want to go back to school or do enjoyable activities. This can be confusing for parents, because they know their child will die, while the child wants to continue life as if nothing is wrong.

Some parents look for complementary or alternative treatments. These treatments can give parents a sense that they are still able to contribute to their child’s quality of life. Anticipatory grief reactions, such as sadness, depression, and anger, are common. It is important to acknowledge and normalize these feelings in parents.

For a good quality of life for children with a life-threatening illness, it is important that care in the hospital and at home is well coordinated. That is why the Princess Máxima Center works together with the Children’s Comfort Team Utrecht. This is a multidisciplinary team that supports families in the palliative and terminal phase of the illness. Children can also be referred while they are still receiving curative treatment, so the team can help think along early. They offer a listening ear to parents and children, support the connection between hospital and home care, and help coordinate care at home.

After the death of a child, many people eventually find a new balance, but this process takes a great deal of time. The psychologist, social worker, and child life specialist can support parents and children in making choices about the final phase of life, help them cope with almost unbearable emotions, and assist in shaping their wishes around letting go and saying goodbye. After the child’s death, parents can contact the social work department at the Princess Máxima Center for aftercare. They can also turn to the general practitioner’s practice nurse or a grief therapist in their own region, often through referral via the Integrated Child Care Network. The Dutch Childhood Cancer Association can also offer guidance, peer support, or referrals to other parents with similar experiences.

More information

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Grootenhuis, M.A., Aarsen, F., & Van den Bergh, E. (2022). Pscyhologische behandeling bij kinderen met kanker. In S. Duijts, R. Sanderman, M. Schroevers, & T. Vos (Eds.), Psychologische patiëntenzorg in de oncologie (pp. 323-334). Uitgeverij Van Gorcum.

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Martel, D., Bussières, J. F., Théorêt, Y., Lebel, D., Kish, S., Moghrabi, A., & Laurier, C. (2005). Use of alternative and complementary therapies in children with cancer. Pediatric blood & cancer, 44(7), 660–668. https://doi.org/10.1002/pbc.20205

Valdimarsdóttir, U., Kreicbergs, U., Hauksdóttir, A., Hunt, H., Onelöv, E., Henter, J. I., & Steineck, G. (2007). Parents' intellectual and emotional awareness of their child's impending death to cancer: a population-based long-term follow-up study. The Lancet. Oncology, 8(8), 706–714. https://doi.org/10.1016/S1470-2045(07)70209-7