Abstract
Through a systematic review and meta-analyses, we aimed to determine predictors for place of death among children. We searched online databases for studies published between 2008 and 2019 comprising original quantitative data on predictors for place of death among children. Data regarding study design, population characteristics and results were extracted from each study. Meta-analyses were conducted using generic inverse variance method with random effects. Fourteen cohort studies met the inclusion criteria, comprising data on 106,788 decedents. Proportions of home death varied between countries and regions from 7% to 45%. Lower age was associated with higher odds of hospital death in eight studies (meta-analysis was not possible). Children categorised as non-white were less likely to die at home compared to white (pooled OR 0.6; 95% CI 0.5–0.7) as were children of low socio-economic position versus high (pooled OR 0.7; 95% CI 0.6–0.9). Compared to patients with cancer, children with non-cancer diagnoses had lower odds of home death (pooled OR 0.5; 95% CI 0.5–0.5).
Conclusion: Country and region of residence, older age of the child, high socio-economic position, ‘white’ ethnicity and cancer diagnoses appear to be independent predictors of home death among children.
What is Known: • Home is often considered an indicator of quality in end-of-life care. • Most terminally ill children die in hospitals. | |
What is New: • Through a systematic review and meta-analyses, this study examined predictors for place of death among children. • Country and region of residence, older age of the child, high socio-economic position, white ethnicity and having a cancer diagnosis appear to be independent predictors of home death among terminally ill children. |
Similar content being viewed by others
References
WHO | WHO Definition of Palliative Care. WHO.
Field MJ, Behrman RE. When children die: improving palliative and end-of-life care for children and their families. Committee on palliative and end-of-life care for children and their families. 2003; 712: 0–309.
End of life care for infants, children and young people young people, https://www.nice.org.uk/guidance/qs160/resources/end-of-life-care-for-infants-children-and-young-people-pdf-75545593722565 (2017, accessed 18 June 2018).
The EAPC Taskforce for Palliative Care in Children. Palliative care for infants children and young people the facts: a document for healthcare professionals and policy makers.
Håkanson C, Öhlén J, Kreicbergs U, Cardenas-Turanzas M, Wilson DM, Loucka M, Frache S, Giovannetti L, Naylor W, Rhee YJ, Ramos MR, Teno J, Beernaert K, Deliens L, Houttekier D, Cohen J (2017) Place of death of children with complex chronic conditions: cross-national study of 11 countries. Eur J Pediatr 176:327–335
Hammes BJ, Klevan J, Kempf M, Williams MS (2005) Pediatric advance care planning. J Palliat Med 8:766–773
Linton JM, Feudtner C (2008) What accounts for differences or disparities in pediatric palliative and end-of-life care? A systematic review focusing on possible multilevel mechanisms. Pediatrics 122:574–582
Liberati A, Altman DG, Tetzlaff J, Mulrow C, Gøtzsche PC, Ioannidis JPA, Clarke M, Devereaux PJ, Kleijnen J, Moher D (2009) The PRISMA statement for reporting systematic reviews and meta-analyses of studies that evaluate health care interventions: explanation and elaboration. PLoS Med 6:e1000100
Wells G, Shea B, O’Connell D, et al. The Newcastle–Ottawa Scale (NOS) for assessing the quality of nonrandomised studies in meta-analyses.
Newcastle-Ottawa-quality assessment scale, http://www.ohri.ca/programs/clinical_epidemiology/nosgen.pdf (accessed 2 February 2018).
Deeks JJ, Altman DG, Bradburn MJ Statistical methods for examining heterogeneity and combining results from several studies in meta-analysis. In: Systematic reviews in health care. BMJ Publishing Group, London, UK, pp 285–312
RevMan 5.3 User Guide, http://community.cochrane.org/sites/default/files/uploads/inline-files/RevMan_5.3_User_Guide.pdf (accessed 11 June 2018).
Higgins J (2011) Cochrane handbook for systematic reviews of interventions. The Cochrane Collaboration:2–3
Neergaard MA, Jensen AB, Sokolowski I, Olesen F, Vedsted P (2012) Socioeconomic position and place of death of cancer patients. BMJ Support Palliat Care 2:133–139
Miesfeldt S, Murray K, Lucas L, Chang CH, Goodman D, Morden NE (2012) Association of age, gender, and race with intensity of end-of-life care for Medicare beneficiaries with cancer. J Palliat Med 15:548–554
Mack JW, Chen K, Boscoe FP, Gesten FC, Roohan PJ, Schymura MJ, Schrag D (2015) High intensity of end-of-life care among adolescent and young adult cancer patients in the New York State Medicaid Program. Med Care 53:1018–1026
Neergaard MA, Jensen AB, Olesen F, Vedsted P (2013) Access to outreach specialist palliative care teams among cancer patients in Denmark. J Palliat Med 16:951–957
Rhodes RL, Xuan L, Paulk ME, Stieglitz H, Halm EA (2013) An examination of end-of-life care in a safety net hospital system: a decade in review. J Health Care Poor Underserved 24:1666–1675
Barnato AE, Cohen ED, Mistovich KA et al (2015) Hospital end-of-life treatment intensity among cancer and non-cancer cohorts. J Pain Symptom Manage 49:521-9.e1–5
Pivodic L, Pardon K, Morin L, Addington-Hall J, Miccinesi G, Cardenas-Turanzas M, Onwuteaka-Philipsen B, Naylor W, Ruiz Ramos M, van den Block L, Wilson DM, Loucka M, Csikos A, Rhee YJ, Teno J, Deliens L, Houttekier D, Cohen J, EURO IMPACT (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 70:17–24
Öhlén J, Cohen J, Håkanson C (2017) Determinants in the place of death for people with different cancer types: a national population-based study. Acta Oncol 56:455–461
Rajeshuni N, Johnston EE, Saynina O, Sanders LM, Chamberlain LJ (2017) Disparities in location of death of adolescents and young adults with cancer: a longitudinal, population study in California. Cancer 123:4178–4184
Decourcey DD, Silverman M, Oladunjoye A et al (2017) Patterns of care at the end of life for children and young adults with life-threatening complex chronic conditions. J Pediatr 193:196-203.e2
Thienprayoon R, Lee SC, Leonard D, Winick N (2013) Racial and ethnic differences in hospice enrollment among children with cancer. Pediatr Blood Cancer 60:1662–1666
Colvin JD, Zaniletti I, Fieldston ES, Gottlieb LM, Raphael JL, Hall M, Cowden JD, Shah SS (2013) Socioeconomic status and in-hospital pediatric mortality. Pediatrics 131:e182–e190
Ananth P, Melvin P, Feudtner C, Wolfe J, Berry JG (2015) Hospital use in the last year of life for children with life-threatening complex chronic conditions. Pediatrics 136:938–946
Bender HU, Riester MB, Borasio GD, Führer M (2017) Let’s bring her home first. Patient characteristics and place of death in specialized pediatric palliative home care. J Pain Symptom Manage 54:159–166
Dussel V, Kreicbergs U, Hilden JM, Watterson 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 Manage 37:33–43
Lykke C, Ekholm O, Schmiegelow K, Olsen M, Sjøgren P (2018) All-cause mortality rates and home deaths decreased in children with life-limiting diagnoses in Denmark between 1994 and 2014. Acta Paediatr 107:1781–1785
Niswander LM, Cromwell P, Chirico J, Gupton A, Korones DN (2014) End-of-life care for children enrolled in a community-based pediatric palliative care program. J Palliat Med 17:589–591
Price J, Willcox M, Kabudula CW et al (2019) Home deaths of children under 5 years in rural South Africa: a population-based longitudinal study. Trop Med Int Heal 24:862–878
Siden H, Miller M, Straatman L, Omesi L, Tucker T, Collins JJ (2008) A report on location of death in paediatric palliative care between home, hospice and hospital. Palliat Med 22:831–834
Gao W, Verne J, Peacock J, Stiller C, Wells C, Greenough A, Higginson IJ (2016) Place of death in children and young people with cancer and implications for end of life care: a population-based study in England, 1993-2014. BMC Cancer 16:727
Shah A, Diggens N, Stiller C, Murphy D, Passmore J, Murphy MFG (2011) Place of death and hospital care for children who died of cancer in England, 1999–2006. Eur J Cancer 47:2175–2181
Kassam A, Sutradhar R, Widger K, Rapoport A, Pole JD, Nelson K, Wolfe J, Earle CC, Gupta S (2017) Predictors of and trends in high-intensity end-of-life care among children with cancer: a population-based study using health services data. J Clin Oncol 35:236–242
Forjaz de Lacerda A, Gomes B (2017) Trends in cause and place of death for children in Portugal (a European country with no paediatric palliative care) during 1987–2011: A population-based study. BMC Pediatr 17:1–11
Pousset G, Bilsen J, Cohen J, Addington-Hall J, Miccinesi G, Onwuteaka-Philipsen B, Kaasa S, Mortier F, Deliens L (2010) Deaths of children occurring at home in six European countries. Child Care Health Dev. Epub ahead of print 36:375–384. https://doi.org/10.1111/j.1365-2214.2009.01028.x
Cawkwell PB, Gardner SL, Weitzman M (2015) Persistent racial and ethnic differences in location of death for children with cancer. Pediatr Blood Cancer 62:1403–1408
Hung YN, Liu TW, Tang ST (2015) Determinants of hospital death for Taiwanese pediatric cancer decedents, 2001–2010. J Pain Symptom Manage 50:685–692
Cárdenas-Turanzas M, Tovalín-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 11:973–979
Johnston EE, Alvarez E, Saynina O, Sanders L, Bhatia S, Chamberlain LJ (2017) Disparities in the intensity of end-of-life care for children with cancer. Pediatrics 140:e20170671
Kaye EC, DeMarsh S, Gushue CA, Jerkins J, Sykes A, Lu Z, Snaman JM, Blazin LJ, Johnson LM, Levine DR, Morrison RR, Baker JN (2018) Predictors of location of death for children with cancer enrolled on a palliative care service. Oncologist 23:1525–1532
Fraser LK, Fleming S, Parslow R (2018) Changing place of death in children who died after discharge from paediatric intensive care units: a national, data linkage study. Palliat Med 32:337–346
Rost M, Wangmo T, Rakic M, Acheson E, Rischewski J, Hengartner H, Kühne T, Elger BS (2018) Burden of treatment in the face of childhood cancer: a quantitative study using medical records of deceased children. Eur J Cancer Care (Engl) 27:e12879
Heterogeneity and subgroup analyses in Cochrane Consumers and Communication Group reviews: Planning the analysis at protocol stage.
Sullivan J, Gillam L, Monagle P (2015) Parents and end-of-life decision-making for their child: roles and responsibilities. BMJ Support Palliat Care 5:240–248
Ullrich C, Morrison RS (2013) Notes from the Editor Pediatric palliative care research comes of age: what we stand to learn from children with life-threatening illness. https://doi.org/10.1089/jpm.2013.9518
Bostwick D, Wolf S, Samsa G, Bull J, Taylor DH Jr, Johnson KS, Kamal AH (2017) Comparing the palliative care needs of those with cancer to those with common non-cancer serious illness. Epub ahead of print 53:1079–1084.e1. https://doi.org/10.1016/j.jpainsymman.2017.02.014
Luddington L, Cox S, Higginson I, Livesley B (2001) The need for palliative care for patients with non-cancer diseases: a review of the evidence. Int J Palliat Nurs 7:221–226
Association for Palliative Medicine of Great Britain and Ireland, Consultant Nurse in Palliative Care Reference Group, Marie Curie Cancer Care, et al. Commissioning guidance for specialist palliative care: helping to deliver commissioning objectives.
Cochrane H, Liyanage S, Nantambi R. Palliative care statistics for children and young adults: health and care partnerships analysis. 2007.
Fairley L, Cabieses B, Small N, Petherick ES, Lawlor DA, Pickett KE, Wright J (2014) Using latent class analysis to develop a model of the relationship between socioeconomic position and ethnicity: cross-sectional analyses from a multi-ethnic birth cohort study. BMC Public Health 14:835
Dreyer B, Chung PJ, Szilagyi P, Wong S (2016) Child poverty in the United States today: introduction and executive summary. Acad Pediatr 16:S1–S5
World Health Organisation. Closing the gap in a generation: health equity through action on the social determinants of health. Commission on Social Determinants of Health. 2008.
Gisquet E, Julliard S, Geoffroy-Perez B (2015) Do social factors affect the place of death? Analysis of home versus institutional death over 20 years. J Public Health (Bangkok) 38:fdv167
Higginson IJ, Jarman B, Astin P, Dolan S (1999) Do social factors affect where patients die: an analysis of 10 years of cancer deaths in England. J Public Health Med 21:22–28
Acknowledgements
We highly appreciate the support from Marianne Godt Hansen on language revision for this article.
Funding
This work was supported by M.L. Jørgensen og Gunnar Hansens Fond (the authors declare that they have no other financial relationship with this organisation).
Author information
Authors and Affiliations
Contributions
S.L.W. conceptualised and designed the study, conducted literature searches, study selections and data extractions, and drafted the initial manuscript.
M.A.N. conceptualised and designed the study, conducted literature searches, study selections and data extractions, and reviewed and revised the manuscript.
C.F.C., M.K.N., S.P.J. and H.S. conceptualised and designed the study, reviewed and revised the manuscript.
All authors have approved the final manuscript and agree to be accountable for all aspects of the work.
Corresponding author
Ethics declarations
Conflict of Interest
The authors declare that they have no competing interests.
Ethical approval
This article does not contain any studies with human participants or animals performed by any of the authors.
Additional information
Communicated by Gregorio Paolo Milani
Publisher’s note
Springer Nature remains neutral with regard to jurisdictional claims in published maps and institutional affiliations.
Rights and permissions
About this article
Cite this article
Wolff, S.L., Christiansen, C.F., Nielsen, M.K. et al. Predictors for place of death among children:A systematic review and meta-analyses of recent literature. Eur J Pediatr 179, 1227–1238 (2020). https://doi.org/10.1007/s00431-020-03689-2
Received:
Revised:
Accepted:
Published:
Issue Date:
DOI: https://doi.org/10.1007/s00431-020-03689-2