Appropriateness of End-of-Life Care in People Dying With Dementia

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.