Cecilia Håkanson1,2, Joakim Öhlén3, Ulrika Kreicbergs4,5, Marylou Cardenas-Turanzas6, Donna M Wilson7, Martin Loucka8, Sandra Frache9, Lucia Giovannetti10, Wayne Naylor11, YongJoo Rhee12, Miguel Ruiz Ramos13, Joan Teno14,15, Kim Beernaert16, Luc Deliens14,15,16, Dirk Houttekier16, Joachim Cohen16. 1. Palliative Research Centre, Department of Health Care Sciences, Ersta Sköndal University College, P.O. Box 11189, SE-10061, Stockholm, Sweden. cecilia.hakanson@esh.se. 2. Department of Neurobiology, Care Science and Society, Karolinska Institutet, Huddinge, Sweden. cecilia.hakanson@esh.se. 3. Institute of Health and Care Sciences, The Sahlgrenska Academy, and Centre for Person-Centred Care (GPCC), University of Gothenburg, Gothenburg, Sweden. 4. Palliative Research Centre, Department of Health Care Sciences, Ersta Sköndal University College, P.O. Box 11189, SE-10061, Stockholm, Sweden. 5. Department of Women's and Children's Health, Karolinska Institutet, Stockholm, Sweden. 6. Department of General Internal Medicine, The University of Texas, MD Anderson Cancer Centre, Houston, TX, USA. 7. Faculty of Nursing, University of Alberta, Edmonton, AB, Canada. 8. Center for Palliative Care, Michelska, Prague, Czech Republic. 9. Centre of Palliative Care, Teaching Hospital, Besancon, France. 10. Occupational and Environmental Epidemiology Unit, Cancer Prevention and Research Institute-ISPO, Florence, Italy. 11. Gallagher Family Hospice, Hamilton, New Zealand. 12. Dongduk Women's University, Seoul, South Korea. 13. Regional Ministry of Equality, Health and Social Policies in Andalusia, Seville, Spain. 14. Cambia Palliative Care Center of Excellence, University of Washington Division of Geriatric Medicine, Seattle, Washington D. C., USA. 15. Department of Medical Oncology, Ghent University Hospital, Ghent, Belgium. 16. End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Brussels, Belgium.
Abstract
Cross-national understanding of place of death is crucial for health service systems for their provision of efficient and equal access to paediatric palliative care. The objectives of this population-level study were to examine where children with complex chronic conditions (CCC) die and to investigate associations between places of death and sex, cause of death and country. The study used death certificate data of all deceased 1- to 17-year-old children (n = 40,624) who died in 2008, in 11 European and non-European countries. Multivariable logistic regression was performed to determine associations between place of death and other factors. Between 24.4 and 75.3% of all children 1-17 years in the countries died of CCC. Of these, between 6.7 and 42.4% died at home. In Belgium and the USA, all deaths caused by CCC other than malignancies were less likely to occur at home, whereas in Mexico and South Korea, deaths caused by neuromuscular diseases were more likely to occur at home than malignancies. In Mexico (OR = 0.91, 95% CI: 0.83-1.00) and Sweden (OR = 0.35, 95% CI: 0.15-0.83), girls had a significantly lower chance of dying at home than boys. CONCLUSION: This study shows large cross-national variations in place of death. These variations may relate to health system-related infrastructures and policies, and differences in cultural values related to place of death, although this needs further investigation. The patterns found in this study can inform the development of paediatric palliative care programs internationally. What is known: • There is a scarcity of population-level studies investigating where children with CCC die in different countries. • Cross-national understanding of place of death provides information to health care systems for providing efficient and equal access to paediatric palliative care. What is new : • There are large cross-national variations in the place of death of children with CCC, with few deathsoccuring at home in some countries whereas hospital deaths are generally most common. • In general, deaths caused by neuromuscular diseases and malignancies occur at home more often thanother CCC.
Cross-national understanding of place of death is crucial for health service systems for their provision of efficient and equal access to paediatric palliative care. The objectives of this population-level study were to examine where children with complex chronic conditions (CCC) die and to investigate associations between places of death and sex, cause of death and country. The study used death certificate data of all deceased 1- to 17-year-old children (n = 40,624) who died in 2008, in 11 European and non-European countries. Multivariable logistic regression was performed to determine associations between place of death and other factors. Between 24.4 and 75.3% of all children 1-17 years in the countries died of CCC. Of these, between 6.7 and 42.4% died at home. In Belgium and the USA, all deaths caused by CCC other than malignancies were less likely to occur at home, whereas in Mexico and South Korea, deaths caused by neuromuscular diseases were more likely to occur at home than malignancies. In Mexico (OR = 0.91, 95% CI: 0.83-1.00) and Sweden (OR = 0.35, 95% CI: 0.15-0.83), girls had a significantly lower chance of dying at home than boys. CONCLUSION: This study shows large cross-national variations in place of death. These variations may relate to health system-related infrastructures and policies, and differences in cultural values related to place of death, although this needs further investigation. The patterns found in this study can inform the development of paediatric palliative care programs internationally. What is known: • There is a scarcity of population-level studies investigating where children with CCC die in different countries. • Cross-national understanding of place of death provides information to health care systems for providing efficient and equal access to paediatric palliative care. What is new : • There are large cross-national variations in the place of death of children with CCC, with few deathsoccuring at home in some countries whereas hospital deaths are generally most common. • In general, deaths caused by neuromuscular diseases and malignancies occur at home more often thanother CCC.
Entities:
Keywords:
Children; Complex chronic conditions; Cross-national; Paediatric palliative care; Place of death; Population-level
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