Abstract
Objectives
Dementia is a progressive incurable life-limiting illness. Previous research suggests
end-of-life care for people with dementia should have a symptomatic focus with an
effort to avoid burdensome interventions that would not improve quality of life. This
study aims to assess the appropriateness of end-of-life care in people who died with
dementia in Belgium and to establish relative performance standards by measuring validated
population-level quality indicators.
Design
We conducted a retrospective observational study.
Setting and Participants
We included all persons deceased with dementia in 2015 in Belgium. Data from 8 administratively
collected population-level databases was linked.
Measures
We used a validated set of 28 quality indicators for end-of-life dementia care. We
compared quality indicator scores across 14 healthcare regions to establish relative
benchmarks.
Results
In Belgium in 2015, 10,629 people died with dementia. For indicators of appropriate
end-of-life care, people who died with dementia had on average 1.83 contacts with
their family physician in the last week before death, whereas 68.4% died at home or
in their nursing home of residence. For indicators of inappropriate end-of-life care,
32.4% were admitted to the hospital and 36.3% underwent diagnostic testing in the
last 30 days before death, whereas 25.1% died in the hospital. In the last 30 days,
emergency department admission varied between 19% and 31%, dispensing of gastric protectors
between 18% and 42%, and antihypertensives between 40% and 53% between healthcare
regions, with at least 25% of health regions below 46%.
Conclusions and Implications
Our study found indications of appropriate as well as inappropriate end-of-life care
in people with dementia, including high rates of family physician contact, as well
as high percentages of diagnostic testing, and emergency department and hospital admissions.
We also found high risk-adjusted variation for multiple quality indicators, indicating
opportunity for quality improvement in end-of-life dementia care.
Keywords
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Article info
Publication history
Published online: February 07, 2020
Footnotes
This study is part of a research study funded by the FWO, Research Foundation Flanders (grant G012414N). The FWO had no involvement in the study design, writing of the manuscript, or decision to submit the manuscript for publication.
The authors have no conflicts of interest to declare. All individuals who merit authorship are included as authors.
Identification
Copyright
© 2019 AMDA - The Society for Post-Acute and Long-Term Care Medicine.
