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

Abstract

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.

All‐cause mortality rates and home deaths decreased in children with life‐limiting diagnoses in Denmark between 1994 and 2014

“…Thus, there may be an unmet need for extended specialised palliative home care for selected children and families. A previous study with a much shorter observation period than ours found large cross-national variations in the place of death for children in 11 countries (22). Another study found that children in Belgium and the Netherlands had significantly higher chances of dying at home than, for example, children in Italy (23).…”

Paediatric palliative care: a systematic review

“…Paediatric palliative care is often lacking in paediatric care in general 5. In addition, hospice and services aimed for adults are not designed for the care of children 2.…”

“…It is especially important to highlight that hospital is still the most common place of death for children, although this does vary nationally. There is a need for strategies to provide alternative locations of care for children in palliative care 5. The results in our literature review include home-based care and community-based services for children,16 29 30 32 50 53 which make it possible for children in need of palliative care to stay at home.…”

“…The introduction of palliative care is more common in cancer than in paediatric care for other complex chronic conditions 5. In cancer care, children, youths and parents should be introduced to palliative care early in the disease process, regardless of disease status 58.…”

“…This is especially challenging for children with complex chronic life-limiting conditions in need of paediatric palliative care, where the lack of knowledge and resources can be an obstacle. Worldwide, children belonging to this group are reported to account for anywhere between 24% and 74% of all deaths between the ages of 1 and 17 years 5. To meet the needs of these children, a paediatric palliative care is recommended, encompassing active total care of the body, mind and spirit of the child, with such care also involving support for the family.…”