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Transitions Between Care Settings at the End of Life in Belgium
To the Editor: Transitions between care settings at the end of life can be burdensome for patients and their families. They also pose challenges to the continuity of care, jeopardizing patient safety and quality of care.1 Previous research was limited to specific populations or settings or investigated single transitions (eg, hospital [re]admissions), often without specific end-of-life focus.1-3 To our knowledge, no nationwide studies have examined transitions between end-of-life care settings for a population-based sample of dying persons. This study investigated the prevalence, types, and timing of transitions between end-of-life care settings in Belgium.
Methods
We performed a 1-year nationwide mortality follow-back study in 2005. Data were collected within the Sentinel Network Monitoring End-of-Life Care (SENTI-MELC) study. This study monitors end-of-life care in Belgium via the nationwide Sentinel Network of General Practitioners, an epidemiologic surveillance system representative (for age, sex, and region) of all 10 578 Belgian general practitioners.4-5
All 205 general practitioners provided a weekly report of every patient in their practice older than 1 year who had died, registering each death immediately after being informed, using a standardized form. Practitioners were asked whether death had occurred "suddenly and totally unexpectedly." For all nonsudden deaths, the registration included place of death and up to 3 previous places of care for up to 3 months before death, as well as duration of stay (in days) in each setting. A transition was defined as a move between care locations (home, care home [elderly/nursing home], hospital, inpatient palliative care unit). Multinomial 95% confidence intervals (CIs) were calculated using the exact method in StatXact 6 (Cytel, Cambridge, Massachusetts). The study was approved by the ethical review board of Brussels University Hospital.
Results
A total of 892 nonsudden deaths (66% of the 1385 reported deaths) were studied (Table). Of the patients, 38% (95% CI, 34%-42%) were not transferred in the final 3 months of life, 37% (95% CI, 33%-41%) were transferred once, 16% (95% CI, 13%-19%) twice, and 10% (95% CI, 8%-13%) 3 times or more. At least 1 transfer was experienced by 73% of patients residing at home and 36% of those residing in care homes.
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Table. Characteristics of the Nonsudden Deaths (n = 892)a
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There were 48 distinct care setting trajectories based on patient location 3 months before death: 23 for patients at home, 8 for patients in care homes, 16 for patients in the hospital, and 1 for patients in a palliative care unit (eFigure). The most frequently occurring transition was from home to hospital (40% of all patients).
The proportion of patients in a particular setting on each day during the last 3 months of life is shown in the Figure. Closer to death there was an increase of patients in the hospital, decrease in patients at home, and increase in the use of palliative care units, mainly in the final 2 weeks of life. Of all transferred patients, 80% were transferred within the last month of life and 33% within the last week.
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Figure. Places of Care in the Last 3 Months of Life (N = 884)
The y-axis represents the aggregated proportion of patients in a particular setting on each day before death (x-axis). Error bars indicate 95% confidence intervals. Of the 892 patients in the study, 8 were missing data for all days; for 21 patients, the care setting trajectory in the last 90 days was incomplete (ie, there were more transitions than the registration included).
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Comment
General practice is highly accessible for all patients in Belgium; the Sentinel Network of General Practitioners is representative of all general practitioners and has had a long tradition in registration research. Therefore this database was likely to be representative of dying patients in Belgium. Limitations of the study include lack of information on appropriateness of transitions, retrospective reliance on general practitioners to describe all transitions (with potential underestimation), and possible lack of generalizability outside Belgium. While the care settings available to dying individuals in the United States and Belgium are comparable,2 accessibility to these settings might differ; for example, the Belgian social security system has low financial thresholds for all patients for all settings and types of palliative care.
The high prevalence and variability of end-of-life transitions, especially to hospitals in the last weeks of life, raise questions about continuity of end-of-life care in Belgium. Preventing unnecessary end-of-life transitions and ensuring continuous well-organized care at home and in care homes remain challenges. Further research is necessary to explore the effects of transitions on quality of care.
Author Contributions: Ms Van den Block had full access to all of the data in the study and takes responsibility for the integrity of the data and the accuracy of the data analysis.
Study conception and design: Van den Block, Deschepper, Van Casteren, Deliens.
Acquisition of data: Van den Block, Van Casteren.
Analysis and interpretation of data: Van den Block, Deschepper, Bilsen, Deliens.
Drafting of the manuscript: Van den Block.
Critical revision of the manuscript for important intellectual content: Van den Block, Deschepper, Bilsen, Van Casteren, Deliens.
Statistical analysis: Van den Block.
Obtaining funding: Van den Block, Deschepper, Van Casteren, Deliens.
Administrative, technical, or material support: Van den Block, Deschepper, Van Casteren, Deliens.
Study supervision: Van den Block, Deschepper, Bilsen, Van Casteren, Deliens.
Financial Disclosures: None reported.
Funding/Support: Ms Van den Block received a student grant from the Fund for Scientific Research in Flanders, Belgium. The Research Council of the Vrije Universiteit Brussel in Belgium provided financial support for this study, and the Flemish and French Ministry of Welfare, Public Health and Family provided financial support for the Belgian Sentinel Network of general practitioners.
Role of Sponsors: The sponsors had no role in the design and conduct of the study; the collection, management, analysis, and interpretation of the data; or the preparation, review, or approval of the manuscript.
Additional Contributions: We thank Nathalie Bossuyt, MD (Scientific Institute of Public Health), Katrien Drieskens, MD (Vrije Universiteit Brussel), and Sabien Bauwens, MA (Brussels University Hospital), for their contributions in study conception and design, support in data collection, and critical revision of the manuscript; Johan Vanoverloop, MA (Vrije Universiteit Brussel), for statistical advice; Joachim Cohen, MA (Vrije Universiteit Brussel), for comments on the final manuscript; Rita De Boodt (Flemish Ministry of Welfare, Public Health and Family) for categorizing the cause of death into International Statistical Classification of Diseases, 10th Revision codes; the participating sentinel general practitioners for providing the study data; and the Flemish Ministry of Welfare, Public Health and Family and the Brussels Observatory of Health and Wellness for access to their death certificate data. None of these persons received any compensation for their roles in the study.
Lieve Van den Block, MA
lvdblock{at}vub.ac.be
Reginald Deschepper, PhD
End-of-Life Care Research Group
Vrije Universiteit Brussel
Brussels, Belgium
Johan Bilsen, PhD
Bioethics Institute
Ghent University
Ghent, Belgium
Viviane Van Casteren, MD
Unit of Epidemiology
Scientific Institute of Public Health
Brussels, Belgium
Luc Deliens, PhD
Department of Public and Occupational Health and EMGO Institute
VU University Medical Centre
Amsterdam, the Netherlands
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ABSTRACT
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