Issues using linkage of hospital records and death certificate data to determine the size of a potential palliative care population

BACKGROUND: Studies aiming to identify palliative care populations have used data from death certificates and in some cases hospital records. The size and characteristics of the identified populations can show considerable variation depending on the data sources used. It is important that service planners and researchers are aware of this. AIM: To illustrate the differences in the size and characteristics of a potential palliative care population depending on the differential use of linked hospital records and death certificate data. DESIGN: Retrospective cohort study. SETTING/PARTICIPANTS: The cohort consisted of 23,852 people aged 20 years and over who died in Western Australia between 1 January 2009 and 31 December 2010 after excluding deaths related to pregnancy or trauma. Within this cohort, the number, proportion and characteristics of people who died from one or more of 10 medical conditions considered amenable to palliative care were identified using linked hospital records and death certificate data. RESULTS: Depending on the information source(s) used, between 43% and 73% of the 23,852 people who died had a condition potentially amenable to palliative care identified. The median age at death and the sex distribution of the decedents by condition also varied with the information source. CONCLUSION: Health service planners and researchers need to be aware of the limitations when using hospital records and death certificate data to determine a potential palliative care population. The use of Emergency Department and other administrative data sources could further exacerbate this variation.