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Home care of a child dying of a malignancy and parental awareness of a child’s impending death

Department of Oncology and Pathology, Karolinska Hospital, Stockholm and Department of Environmental Health, Harvard School of Public Health, Boston, psurkan{at}hsph.harvard.edu

Paul W Dickman

Department of Medical Epidemiology and Biostatistics, Karolinska Institutet, Stockholm

Gunnar Steineck

Department of Oncology and Pathology, Karolinska Hospital, Stockholm and Division of Clinical Cancer Epidemiology, Sahlgrenska Academy, Göteborg

Erik Onelöv

Department of Oncology and Pathology, Karolinska Hospital, Stockholm

Ulrika Kreicbergs

The Phyllis F. Cantor Center, Dana Farber Cancer Institute, Boston and Department of Woman and Child Health, Karolinska Hospital, Stockholm

In this population-based study, we found that parents who are aware that their child will die from a malignancy are more likely to care for their child at home during the child’s last month of life compared to parents who are not aware. End-of-life home care was comparable to hospital care for satisfactory pain relief, access to pain relief and access to medications for other physical symptoms. Using an anonymous postal questionnaire, we obtained information from 449 parents in Sweden who had lost a child due to a malignancy between 1992 and 1997, 4 to 9 years before participating in our study. The prevalence of dying at home and being cared for at home during the last month of life was 23.7% when parents realized intellectually more than 1 month in advance that the child would die (versus 12% who did not), 28.7% for parents who sensed that the child was aware of his or her imminent death (versus 7.8% who did not sense this) and 21.9% for those who received information that the child’s illness was incurable (versus 9.4% who did not receive the information). Prevalence of children’s unrelieved pain was 11.6% for those receiving home care and 15.3% for those receiving care outside the home.

Key Words: awareness • cancer • child • health care facilities • palliative care

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