Missing data on where people die: a death certificate study by world region, age, gender and cause of death.

Abstract

Background/aims: Improving the quality of data on place of death (PoD) provides better evidence to assess if people’s preferences are respected and where palliative care is most needed. We aimed to examine recent trends in the level and type of missing data on PoD, by world region, age, gender and cause of death. Methods: We sought national PoD data from vital registries of 47 countries varied in United Nations (UN) regions and Quality of Death Index. We describe the distribution of ill-defined PoD categories (unknown, unrecorded, “other”) from 2012 to 2021, examining variations by UN region, age, gender and cause of death (ICD-10). Results: Among 26.1 million deceased (57.2% aged 70y or more) across 22 responding countries (covering 8 UN regions in 4 continents), information on PoD was missing for 7.0%, with a decreasing trend from 2012 (8.0%) to 2021 (6.7%). In 0.7% of cases, PoD was recorded as unknown, in 1.1% it was unrecorded and in 5.1% it was coded as “other”. Per UN region, ill-defined PoD data ranged from 1.1% to 9.8%. It was highest in those aged 11-17y (16.2%), and people dying from dementia (5.3%; compared to cancer, and COVID-19 for 2020-21). Conclusions: Globally, there is a considerable share of people dying in places not captured by current classifications and/or unknown. Since this event is not equally distributed, a more comprehensive global PoD classification must include categories responsive to groups of deceased for which PoD is comparatively less known.