Background: Efforts to improve end of life care (EoLC) have made tangible impacts on care in adults, including enabling more people to die at their preferred place of death (PoD), usually home or hospices. Little is known how the PoD in children and young people (CYP, ≤24 years) has changed over time, especially in the context of a series of national initiatives for EoLC improvement since the late 1990s. To inform evidence-based policy-making and service development, we evaluated the national trends of PoD and the associated factors in CYP who died with cancer. Methods: Population-based observational study in the National Health Service (NHS) England, 1993-2014. All non-accidental CYP deaths with cancer (N=12,774) were extracted from the death registration database of the Office for National Statistics (ONS). Results: Hospital deaths reduced from >50 to 45 %, hospice deaths were rare but more than doubled from 6 % in 1993-2000 to 13 % in 2005-2014, and home deaths fluctuated at around 40 %. Those aged 0-19 years were more likely to die at home than young adults (adjusted proportion ratio (PRs): 1.23-1.62); haematological cancer patients or those with 2+ comorbid conditions had higher chances of hospital death (PRs for home: 0.18-0.75, hospice: 0.04-0.37); deprivation was associated with a reduced chance of home death (PRs: 0.76-0.84). The residential region affected hospice but not home deaths. The variations of PoD by cause of death, comorbid conditions and deprivation slightly decreased with time. Conclusions: Hospitals and home were the main EoLC settings for CYP with cancer. Home death rates barely changed in the past two decades; deaths in hospitals remained the most common but slightly shifted towards hospices. CYP with haematological malignancy or with comorbid conditions had persistently high hospital deaths; these cases had an even lower chance of deaths in hospices (50 %) than at home. There were deprivation- and area-related inequalities in PoD which may need service- and/or policy-level intervention. The findings highlight a need for CYP specific initiatives to enhance EoLC support and capacities both at home and in hospices.
Bibliographical noteFunding Information:
This work is part of the GUIDE_Care Children and Young People project – funded by Marie Curie Cancer Care - A15822.
The investigators of the GUIDE_Care Children and Young People project: Wei Gao(PI), Irene J Higginson(co-PI), Janet Peacock, Anne Greenough, Julia Verne and Myer Glickman, thank the following members of the Project Advisory Group(PAG): Tony Bonser, Dr Emma Gordon, Fiona Grove, Dr Shaheen Khan, Dr Joanna Laddie, Katie Lindsey, Dr Helen McElroy, Mrs Carolyn Morris, Mr Andy Pring. We thank Joanna Davies for her assistance with the project and data management, Clare Pearson for assisting with the shapefiles, and Dr Tara Whitburn for helping with the ICD-9/10 codes for cancer. We thank the ONS for supplying data and providing technical support in data related issues. Professor Mike Stevens at University of Bristol, Dr Martin Mccabe at University of Manchester, Dr Sujith Samarasinghe at Great Ormond Street Hospital for sharing their clinical expertise and perspectives on cancer grouping; Dr Lorna Fraser at University of York for the inspiring discussions on the preliminary results. Prof Irene J Higginson is an NIHR Senior Investigator. The Collaboration for Leadership in Applied Health Research and Care (CLAHRC) South London is part of the National Institute for Health Research (NIHR), and is a partnership between King’s Health Partners, St. George’s, University London, and St George’s Healthcare NHS Trust. The National Institute for Health Research (NIHR) Biomedical Research Centre (BRC) is based at Guy’s and St Thomas’ NHS Foundation Trust and King’s College London. This publication is independent research supported by the CLAHRC South London and the NIHR BRC. The views expressed in this publication are those of the author(s) and not necessarily those of the NHS, the National Institute for Health Research or the Department of Health.
© 2016 The Author(s).
- Children and young people
- End of life care
- Palliative care
- Place of death