Background One of the questions faced by the parents of a childwho is terminally ill with a malignant disease is whether ornot they should talk about death with their child.
Methods In 2001, we attempted to contact all parents in Swedenwho had lost a child to cancer between 1992 and 1997. Among561 eligible parents, 449 answered a questionnaire, and 429stated whether or not they had talked about death with theirchild.
Results None of the 147 parents who talked with their childabout death regretted it. In contrast, 69 of 258 parents (27percent) who did not talk with their child about death regrettednot having done so. Parents who sensed that their child wasaware of his or her imminent death were more likely to regretnot having talked about it (47 percent, as compared with 13percent of parents who did not sense this awareness in theirchild; relative risk, 3.7; 95 percent confidence interval, 2.3to 6.0). The same variable was related to having talked aboutdeath (50 percent vs. 13 percent; relative risk, 3.8; 95 percentconfidence interval, 2.6 to 5.6), as was being religious (42percent vs. 25 percent; relative risk, 1.7; 95 percent confidenceinterval, 1.2 to 2.3). The child's age was related to both havingtalked about death and the parents' regretting not having talkedabout it.
Conclusions Parents who sense that their child is aware of hisor her imminent death more often later regret not having talkedwith their child than do parents who do not sense this awarenessin their child; overall, no parent in this cohort later regrettedhaving talked with his or her child about death.
Source Information
From the Division of Clinical Cancer Epidemiology, Department of Oncology and Pathology (U.K., U.V., E.O., G.S.), and the Childhood Cancer Research Unit (U.K., J.-I.H.), Karolinska Institutet, Stockholm.
Address reprint requests to Dr. Steineck at the Division of Clinical Cancer Epidemiology, Karolinska Institutet, Z6:01 Karolinska Hospital, SE-171 76, Stockholm, Sweden, or at gunnar.steineck{at}onkpat.ki.se.
Dahlstrand, H., Hauksdottir, A., Valdimarsdottir, U., Furst, C.-J., Bergmark, K., Steineck, G.
(2008). Disclosure of Incurable Illness to Spouses: Do They Want to Know? A Swedish Population-Based Follow-Up Study. JCO
26: 3372-3379
[Abstract][Full Text]
Levetown, M., and the Committee on Bioethics,
(2008). Communicating With Children and Families: From Everyday Interactions to Skill in Conveying Distressing Information. Pediatrics
121: e1441-e1460
[Abstract][Full Text]
Griffin, J. P., Koch, K. A., Nelson, J. E., Cooley, M. E.
(2007). Palliative Care Consultation, Quality-of-Life Measurements, and Bereavement for End-of-Life Care in Patients With Lung Cancer: ACCP Evidence-Based Clinical Practice Guidelines (2nd Edition). Chest
132: 404S-422S
[Abstract][Full Text]
Hunt, H., Valdimarsdottir, U., Mucci, L., Kreicbergs, U., Steineck, G.
(2006). When death appears best for the child with severe malignancy: a nationwide parental follow-up.. Palliat Med
20: 567-577
[Abstract]
Kolarik, R. C., Walker, G., Arnold, R. M.
(2006). Pediatric resident education in palliative care: a needs assessment.. Pediatrics
117: 1949-1954
[Abstract][Full Text]
Surkan, P. J, Dickman, P. W, Steineck, G., Onelov, E., Kreicbergs, U.
(2006). Home care of a child dying of a malignancy and parental awareness of a child's impending death. Palliat Med
20: 161-169
[Abstract]
Jalmsell, L., Kreicbergs, U., Onelov, E., Steineck, G., Henter, J.-I.
(2006). Symptoms Affecting Children With Malignancies During the Last Month of Life: A Nationwide Follow-up. Pediatrics
117: 1314-1320
[Abstract][Full Text]
Meyer, E. C., Ritholz, M. D., Burns, J. P., Truog, R. D.
(2006). Improving the Quality of End-of-Life Care in the Pediatric Intensive Care Unit: Parents' Priorities and Recommendations. Pediatrics
117: 649-657
[Abstract][Full Text]
Hauksdottir, A., Steineck, G., Furst, C. J., Valdimarsdottir, U.
(2006). Towards better measurements in bereavement research: order of questions and assessed psychological morbidity. Palliat Med
20: 11-16
[Abstract]
Mack, J. W., Hilden, J. M., Watterson, J., Moore, C., Turner, B., Grier, H. E., Weeks, J. C., Wolfe, J.
(2005). Parent and Physician Perspectives on Quality of Care at the End of Life in Children With Cancer. JCO
23: 9155-9161
[Abstract][Full Text]
Kreicbergs, U., Valdimarsdottir, U., Onelov, E., Bjork, O., Steineck, G., Henter, J.-I.
(2005). Care-Related Distress: A Nationwide Study of Parents Who Lost Their Child to Cancer. JCO
23: 9162-9171
[Abstract][Full Text]
Goldie, J, Schwartz, L, Morrison, J
(2005). Whose information is it anyway? Informing a 12-year-old patient of her terminal prognosis. J. Med. Ethics
31: 427-434
[Abstract][Full Text]
Davies, D. E., Tanvetyanon, T., Kreicbergs, U., Valdimarsdottir, U., Steineck, G.
(2005). Talking about death with dying children.. NEJM
352: 91-92
[Full Text]
Bratton, S. L.
(2004). Talking About Death with Children Who Have Cancer. AAP Grand Rounds
12: 67-68
[Full Text]
(2004). Talking About Death with Dying Children. JWatch Pediatrics
2004: 6-6
[Full Text]
Hurwitz, C. A., Duncan, J., Wolfe, J.
(2004). Caring for the Child With Cancer at the Close of Life: "There Are People Who Make It, and I'm Hoping I'm One of Them". JAMA
292: 2141-2149
[Abstract][Full Text]