European Journal of Pediatrics

, Volume 176, Issue 3, pp 327–335 | Cite as

Place of death of children with complex chronic conditions: cross-national study of 11 countries

  • Cecilia Håkanson
  • Joakim Öhlén
  • Ulrika Kreicbergs
  • Marylou Cardenas-Turanzas
  • Donna M. Wilson
  • Martin Loucka
  • Sandra Frache
  • Lucia Giovannetti
  • Wayne Naylor
  • YongJoo Rhee
  • Miguel Ruiz Ramos
  • Joan Teno
  • Kim Beernaert
  • Luc Deliens
  • Dirk Houttekier
  • Joachim Cohen
Original Article


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.


Children Complex chronic conditions Cross-national Paediatric palliative care Place of death Population-level 



Complex chronic conditions



We thank the following agencies for the delivery of the death certificate data: Belgium: Flemish Agency for Care and Health, Brussels Health and Social Observatory, French Community of Belgium; France: Inserm-CépiDc (Centre d’épidémiologie sur les causes médicales de décès, Institut national de la santé et de la recherche médicale); Italy: Italian National Institute of Statistics (unit for cause of death statistics); Spain (Andalusia): Instituto de Estadística y Cartografía de Andalucía; the Czech Republic: Institute of Health Information and Statistics of the Czech Republic (IHIS); the USA: Center for Disease Control and Prevention (CDC) based on Data Use Agreement; Canada: Statistics Canada; New Zealand: New Zealand Ministry of Health; Mexico: Secretaria de Salud and Sistema Nacional de Informacion en Salud; South Korea: Statistics Korea; Sweden: The National Board of Health and Welfare and Statistics, Sweden. We would also like to thank Guido Miccinesi, Luisa Frova, Rod McLeod, Lucas Morin and Regis Aubry for their help with the data acquisition, and finally, we thank Nick Guthrie at Key point languages for linguistic editing. Finally, we thank the Flanders Research Foundation for funding this study.

Authors’ contributions

Drs. Håkanson, Öhlen, Cardenas-Turanzas, Wilson, Loucka, Giovannetti, Naylor, Rhee, Ramos, Teno, Houttekier and Cohen contributed to national data acquisition.

Drs. Håkanson and Cohen carried out the analyses.

Dr. Håkanson drafted and revised all versions and submitted the final version of the manuscript.

Drs. Deliens, Houttekier and Cohen conceptualized and designed the study.

All authors critically reviewed and revised the initial manuscript and approved the final manuscript as submitted.

Compliance with ethical standards


This work was supported by the Research Foundation Flanders (no grant number).

Conflict of interest

The authors declare that they have no conflicts of interest.

Ethical approval

All procedures were in accordance with the ethical standards of each country and with the 1964 Helsinki declaration and its later amendments, or comparable ethical standards. The study was based on death certificate data and does therefore not include any procedures for informed consent. Formal ethical approvals were obtained from all countries prior to commencing.

Supplementary material

431_2016_2837_MOESM1_ESM.docx (17 kb)
Table S1 (DOCX 17 kb)
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Table S2 (DOCX 16 kb)
431_2016_2837_MOESM3_ESM.docx (18 kb)
Table S3 (DOCX 17 kb)
431_2016_2837_MOESM4_ESM.docx (17 kb)
Table S4 (DOCX 17 kb)


  1. 1.
    American Academy of Pediatrics (2000) Committee on bioethics and committee on hospital care. Palliative care for children. Pediatrics 106(2 Pt1):351–357Google Scholar
  2. 2.
    Bergstraesser E, Zimmermann K, Eskola K, Luck P, Ramelet AS, Cignacco E (2015) Paediatric end-of-life care needs in Switzerland: current practices, and perspectives from parents and professionals. A study protocol. J Adv Nurs 71:1940–1947CrossRefPubMedGoogle Scholar
  3. 3.
    Berry JG, Agrawal R, Cohen E, Kuo DZ (2013) The landscape of medical care for children with medical complexity. Children’s Hospital Association, LenexaGoogle Scholar
  4. 4.
    Bluebond-Langner M, Beecham E, Candy B, Langner L, Jones L (2013) Preferred place of death for children and young people with life-limiting and life-threatening conditions: a systematic review of the literature and recommendations for future inquiry and policy. Palliat Med 27:705–713CrossRefPubMedPubMedCentralGoogle Scholar
  5. 5.
    Cardenas-Turanzas M, Carrillo MT, Tovalin-Ahumada H, Elting L (2007) Factors associated with place of death of cancer patients in the Mexico City metropolitan area. Support Care Cancer 15:243–249CrossRefPubMedGoogle Scholar
  6. 6.
    Cardenas-Turanzas M, Tovalin-Ahumada H, Carrillo MT, Paéz-Aguirre S, Elting L (2008) The place of death of children with cancer in the metropolitan areas of Mexico. J Palliat Med 11:973–979CrossRefPubMedGoogle Scholar
  7. 7.
    Care EAoP. IMPaCCT (2007) Standards for paediatric palliative care in Europe, by the steering committee of the EAPC task force on palliative care for children and adolescents. Eur J Palliat Care 14:2–8Google Scholar
  8. 8.
    Catlin A, Carter B (2002) Creation of a neonatal end-of-life palliative care protocol. J Perinatol 22:184–195CrossRefPubMedGoogle Scholar
  9. 9.
    Cohen J, Deliens L (2012) A public health perspective on end of life care. Oxford university press, OxfordCrossRefGoogle Scholar
  10. 10.
    Cohen J, Bilsen J, Miccinesi G, Löfmark R, Addington-Hall J, Kaasa S, Norup M, van der Wal G, Deliens Le (2007) Using death certificate data to study place of death in 9 European countries: opportunities and weaknesses. BMC Public Health 7:283CrossRefPubMedPubMedCentralGoogle Scholar
  11. 11.
    Cohen J, Houttekier D, Onwuteaka-Philipsen B, Miccensi G, Addington-Hall J, Kaasa S, Bilsen J, Deliens L (2010) Which patients with cancer die at home? A study of six European countries using death certificate data. J Clin Oncol 28:2267–2273CrossRefPubMedGoogle Scholar
  12. 12.
    Cohen E, Berry J, Camacho X et al (2012) Patterns and costs of health care use ofchildren with medical complexity. Pediatrics 130:1463–1470CrossRefGoogle Scholar
  13. 13.
    Dussel V, Kreicbergs U, Hilden JM, Wattersson J, Moore C, Turner BG, Weeks JC, Wolfe J (2009) Looking beyond where children die: determinants and effects of planning a child’s location of death. J Pain Symptom Manag 37:33–43CrossRefGoogle Scholar
  14. 14.
    Feudtner C, Christakis DA, Connell FA (2000) Pediatric deaths attributable to complex chronic conditions: a population-based study of Washington state, 1980-1997. Pediatrics 106(1 Pt 2):205–209PubMedGoogle Scholar
  15. 15.
    Feudtner C, Hays RM, Haynes G, Russell J, Geyer JM, Neff JM, Koepsell TD (2001) Deaths attributed to pediatric complex chronic conditions: national trends and implications for supportive care services. Pediatrics 107:E99CrossRefPubMedGoogle Scholar
  16. 16.
    Feudtner C, Silveira MJ, Christakis DA (2002) Where do children with complex chronic conditions die? Patterns in Washington state, 1980-1998. Pediatrics 109:656–660CrossRefPubMedGoogle Scholar
  17. 17.
    Gans D, Kominski GF, Roby D, Diamant AL, Chen X, Lin W, Hohe N (2012) Better outcomes, lower costs: palliative care program reduces stress, costs of care for children with life-threatening conditions. Policy Brief UCLA Cent Health Policy Res (PB2012–3):1–8Google Scholar
  18. 18.
    Gomes BCN, Gysels M, Hall S, Higginson IJ (2013) Heterogeneity and changes in preferences for dying at home: a systematic review. BMC Palliative Care 12:7CrossRefPubMedPubMedCentralGoogle Scholar
  19. 19.
    Groh G, Feddersen B, Fuhrer M (2014) Specialized home palliative care for adults and children: differences and similarities. J Palliat Med 17:803–810CrossRefPubMedPubMedCentralGoogle Scholar
  20. 20.
    Gysels M, Evans N, Menaca A et al (2012) Culture and end of life care: a scoping exercise in seven European countries. PLoS One 7:e34188CrossRefPubMedPubMedCentralGoogle Scholar
  21. 21.
    Hales S, Chiu A, Husain A, Braun B, Rydall A, Gagliese L, Zimmermann C, Rodin G (2014) The quality of dying and death in cancer and its relationship to palliative care and place of death. J Pain Symptom Manag 48:839–851CrossRefGoogle Scholar
  22. 22.
    Junger S, Pastrana T, Pestinger M, Kern M, Zernkikow B, Radbruch L (2010) Barriers and needs in paediatric palliative home care in Germany: a qualitative interview study with professional experts. BMC Palliat Care 9:10. doi: 10.1186/1472-684X-9-10 [published Online]CrossRefPubMedPubMedCentralGoogle Scholar
  23. 23.
    Kinoshita H, Maeda I, Morita T, Miyashita M, Yamagishi A, Shirahige Y, Takebyashu T, Yamagushi T, Igarashi A, Egushi K (2015) Place of death and the differences in patient quality of death and dying and caregiver burden. J Clin Oncol 33:357–363CrossRefPubMedGoogle Scholar
  24. 24.
    Knapp C, Woodworth L, Wright M, Downing J, Drake R, Fowler-Kelly S, Hain R, Marston J (2011) Pediatric palliative care provision around the world: a systematic review. Pediatr Blood Cancer 57:361–368CrossRefPubMedGoogle Scholar
  25. 25.
    Kuo DZ, Cohen E, Agrawal R, Berry JG, Casey PH (2011) A national profile of caregiver challenges among more medically complex children with special health care needs. Arch Pediatr Adolesc Med 165:1020–1026CrossRefPubMedPubMedCentralGoogle Scholar
  26. 26.
    Min Kyung H, Hae Kyung J, Ho Young Y et al (2013) Factors associated with place of death in korean patients with terminal cancer. Asian Pac J Cancer Prev 14:7309–7314CrossRefGoogle Scholar
  27. 27.
    Nelson H, Mott S, Kleinman ME, Goldstein RD (2015a) Parents’ experiences of pediatric palliative transports: a qualitative case series. J Pain Symptom Manag 50:375–380CrossRefGoogle Scholar
  28. 28.
    Nelson H, Mott S, Kleinman ME, Goldstein RD (2015b) Parents’ experiences of pediatric palliative transports: a qualitative case series. J Pain Sympt Manage 50:375–380CrossRefGoogle Scholar
  29. 29.
    New Zealand: Ministry of Health (2012) Guidance for integrated paediatric palliative care services in New Zealand. Available at:
  30. 30.
    Niswander LM, Cromwell P, Chirico J, Alyssa G, Korones D (2014) End-of-life care for children enrolled in a community-based pediatric palliative care program. J Palliat Med 17:589–591CrossRefPubMedGoogle Scholar
  31. 31.
    Pivodic L, Pardon K, Morin L et al (2016) Place of death in the population dying from diseases indicative of palliative care need: a cross-national population-level study in 14 countries. J Epidemiol Community Health 70:17–24CrossRefPubMedGoogle Scholar
  32. 32.
    Postier A, Chrastek J, Nugent S, Osenga K, Friedrichdorf SJ (2014) Exposure to home-based pediatric palliative and hospice care and its impact on hospital and emergency care charges at a single institution. J Palliat Med 17:183–188CrossRefPubMedGoogle Scholar
  33. 33.
    Pousset G, Bilsen J, Cohen J, Addington-Hall J, Miccinesi G, Onwuetaka-Philipsen B, Kaasa S, Mortier F, Deliens L (2010) Deaths of children occurring at home in six European countries. Child Care Health Dev 36:375–384CrossRefPubMedGoogle Scholar
  34. 34.
    Rhee YJ (2015) Hospice and palliative Care Services in South Korea Supported by the National Health Insurance (NHI) program. Health 7:689CrossRefGoogle Scholar
  35. 35.
    Schwantes S, Wells O’Brien H (2014) Pediatric palliative Care for Children with complex chronic medical conditions. Pediatr Clin of North Am 61:797–721CrossRefGoogle Scholar
  36. 36.
    Siden H, Chavoshi N, Harvey B, Parker A, Miller T (2014) Characteristics of a pediatric hospice palliative care program over 15 years. Pediatrics 134:e765–e772CrossRefPubMedGoogle Scholar
  37. 37.
    Steele R, Derman S, Cadell S, Davis B, Siden H, Straatman L (2008) Families’ transition to a Canadian paediatric hospice. Part two: results of a pilot study. Int J Palliat Nurs 14:287–295CrossRefPubMedGoogle Scholar
  38. 38.
    Suriano de la Rosa B (2003) Análisis de costos del programa de atención domiciliaria en el paciente crónico. Revista de Enfermería 11:71–76Google Scholar
  39. 39.
    Surkan PJ, Dickman PW, 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 20:161–169CrossRefPubMedGoogle Scholar
  40. 40.
    Vadeboncoeur CM, Splinter WM, Rattray M, Johnston DL, Coloumbe L (2010) A paediatric palliative care programme in development: trends in referral and location of death. Arch Dis Child 95:686–689CrossRefPubMedGoogle Scholar
  41. 41.
    World Health Organization (2014) Strengthening of palliative care as a component of integrated treatment throughout the life course. J Pain Palliat Care Pharmacother 28:130–134CrossRefGoogle Scholar

Copyright information

© Springer-Verlag Berlin Heidelberg 2017

Authors and Affiliations

  • Cecilia Håkanson
    • 1
    • 2
  • Joakim Öhlén
    • 3
  • Ulrika Kreicbergs
    • 1
    • 4
  • Marylou Cardenas-Turanzas
    • 5
  • Donna M. Wilson
    • 6
  • Martin Loucka
    • 7
  • Sandra Frache
    • 8
  • Lucia Giovannetti
    • 9
  • Wayne Naylor
    • 10
  • YongJoo Rhee
    • 11
  • Miguel Ruiz Ramos
    • 12
  • Joan Teno
    • 13
    • 14
  • Kim Beernaert
    • 15
  • Luc Deliens
    • 13
    • 14
    • 15
  • Dirk Houttekier
    • 15
  • Joachim Cohen
    • 15
  1. 1.Palliative Research Centre, Department of Health Care SciencesErsta Sköndal University CollegeStockholmSweden
  2. 2.Department of Neurobiology, Care Science and SocietyKarolinska InstitutetHuddingeSweden
  3. 3.Institute of Health and Care Sciences, The Sahlgrenska Academy, and Centre for Person-Centred Care (GPCC)University of GothenburgGothenburgSweden
  4. 4.Department of Women’s and Children’s HealthKarolinska InstitutetStockholmSweden
  5. 5.Department of General Internal MedicineThe University of Texas, MD Anderson Cancer CentreHoustonUSA
  6. 6.Faculty of NursingUniversity of AlbertaEdmontonCanada
  7. 7.Center for Palliative CarePragueCzech Republic
  8. 8.Centre of Palliative Care, Teaching HospitalBesanconFrance
  9. 9.Occupational and Environmental Epidemiology Unit, Cancer Prevention and Research Institute-ISPOFlorenceItaly
  10. 10.Gallagher Family HospiceHamiltonNew Zealand
  11. 11.Dongduk Women’s UniversitySeoulSouth Korea
  12. 12.Regional Ministry of Equality, Health and Social Policies in AndalusiaSevilleSpain
  13. 13.Cambia Palliative Care Center of ExcellenceUniversity of Washington Division of Geriatric MedicineSeattleUSA
  14. 14.Department of Medical OncologyGhent University HospitalGhentBelgium
  15. 15.End-of-Life Care Research GroupVrije Universiteit Brussel (VUB) and Ghent UniversityBrusselsBelgium

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