Eur J Pediatr DOI 10.1007/s00431-016-2837-0
ORIGINAL ARTICLE
Place of death of children with complex chronic conditions: cross-national study of 11 countries 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
Received: 7 July 2016 / Revised: 14 December 2016 / Accepted: 21 December 2016 # Springer-Verlag Berlin Heidelberg 2017
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 1to 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
Dirk Houttekier and Joachim Cohen contributed equally to this work. Revisions received: 13 October 2016; 15 December 2016 Communicated by Mario Bianchetti Electronic supplementary material The online version of this article (doi:10.1007/s00431-016-2837-0) contains supplementary material, which is available to authorized users. * Cecilia Håkanson
[email protected]
YongJoo Rhee
[email protected] Miguel Ruiz Ramos
[email protected]
Joakim Öhlén
[email protected]
Joan Teno
[email protected]
Ulrika Kreicbergs
[email protected]
Kim Beernaert
[email protected]
Marylou Cardenas-Turanzas
[email protected] Donna M. Wilson
[email protected]
Luc Deliens
[email protected]
Martin Loucka
[email protected]
Dirk Houttekier
[email protected]
Sandra Frache
[email protected] Lucia Giovannetti
[email protected] Wayne Naylor
[email protected]
Joachim Cohen
[email protected] 1
Palliative Research Centre, Department of Health Care Sciences, Ersta Sköndal University College, P.O. Box 11189, SE-10061 Stockholm, Sweden
Eur J Pediatr
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 systemrelated 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.
2
Department of Neurobiology, Care Science and Society, Karolinska Institutet, Huddinge, Sweden
3
Institute of Health and Care Sciences, The Sahlgrenska Academy, and Centre for Person-Centred Care (GPCC), University of Gothenburg, Gothenburg, Sweden
4
Department of Women’s and Children’s Health, Karolinska Institutet, Stockholm, Sweden
5
Department of General Internal Medicine, The University of Texas, MD Anderson Cancer Centre, Houston, TX, USA
6
Faculty of Nursing, University of Alberta, Edmonton, AB, Canada
7
Center for Palliative Care, Michelska, Prague, Czech Republic
8
Centre of Palliative Care, Teaching Hospital, Besancon, France
9
Occupational and Environmental Epidemiology Unit, Cancer Prevention and Research Institute-ISPO, Florence, Italy
10
Gallagher Family Hospice, Hamilton, New Zealand
11
Dongduk Women’s University, Seoul, South Korea
12
Regional Ministry of Equality, Health and Social Policies in Andalusia, Seville, Spain
13
Cambia Palliative Care Center of Excellence, University of Washington Division of Geriatric Medicine, Seattle, Washington D. C., USA
14
Department of Medical Oncology, Ghent University Hospital, Ghent, Belgium
15
End-of-Life Care Research Group, Vrije Universiteit Brussel (VUB) and Ghent University, Brussels, Belgium
Keywords Children . Complex chronic conditions . Cross-national . Paediatric palliative care . Place of death . Population-level
Abbreviations CCC Complex chronic conditions
Introduction Place of death is an important factor influencing the quality of end-of-life care of dying people [13, 21–23, 27]. It is widely emphasized that paediatric palliative care should be provided according to the wishes of children and their families, regardless of the place of care [1, 7, 41]. A multitude of studies indicate that most adults prefer to die at home [18] but for children, evidence is much scarcer. A recent review indicated that most parents prefer a home death for their children [4]. These parental preferences, however, tended to fluctuate across the illness trajectory and were dependent on the experience of care and support being received. A recent study by Groh et al. [19] found important differences in home care needs between children and adults regarding disease spectrum (broader among children) and symptom patterns, survival time with home care (markedly longer among children) and home death rate (higher among children). End-of-life care for children with complex chronic conditions (CCC) often requires a broad multidisciplinary approach to care and close collaboration with family members [1, 7]. Children often have assistance needs that increase with developmental delay and bodily decline due to illness progression [35, 37], and the families may need a lot of caregiver and bereavement support during the child’s illness trajectory and beyond [1, 2, 7]. Regional or national level studies indicate that children with CCC now more often die in their own home and have fewer hospital admissions [30, 32, 36, 40], but a systematic review from 2011 [24] still showed wide-ranging cross-national variations in the distribution and provision of paediatric palliative care. Studying patterns in the place of death of children at a population level provides indications of how paediatric end-of-life care is organized and provided in a country [9]. Cross-national comparison has, to the best of our knowledge, only been performed once based on death certificate data from 2003 from six European countries [33]. This study provides results of place of child death, specifically targeting children with CCC in 11 countries in- and outside Europe. Cross-national understanding of place of death is crucial for health service systems to reflect on their policy evaluation and strategic decision-making about the allocation of resources and competence building, for the provision of efficient and equal access to palliative care for children with CCC, and their families.
Eur J Pediatr
The objectives were to examine, at a population level, where children of 1 year of age and over who have CCC die in 11 countries and to investigate associations between place of death and sex, cause of death and country.
Methods Study population This population-level study is part of the multinational collaborative International Place of Death project (IPoD). The project database covers death certificate data, as well as data from population-based registers from 15 countries in- and outside Europe [11, 31]. At the time of the data collection (2011– 2013), 2008 was the most recent year for which data were available in most targeted countries except for the USA where data from 2007 was used as this was the most recent available year. In Spain, death certificate registration for the full population started in 2010 and was therefore only available in 2008 for the province of Andalusia. All data were merged into one common database. For this study, we included data from 2008 of all deceased 1- to 17-year-old children, in countries which, at that time, registered the place of death (with at least the categories of home, hospital, or other place on the death certificate), and provided underlying cause of death as ICD-10 codes in the death certificate data. The countries that met these criteria were Belgium, Canada, the Czech Republic, France, Italy, Korea, Mexico, New Zealand, Spain (Andalusia), Sweden and the USA. The countries in the database that were excluded were as follows: Hungary (no registration of home as a place of death) and England, Wales and the Netherlands that did not provide 3- or 4-digit ICD-10 codes (due to data protection issues), which were needed to calculate the CCC categories. The main reason for excluding the infants (
