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Open Access Highly Accessed Research article

Dying at home in Belgium: a descriptive GP interview study

Kathleen Leemans1*, Lieve Van den Block12, Johan Bilsen13, Joachim Cohen1, Nicole Boffin4 and Luc Deliens15

Author Affiliations

1 Ghent University & Vrije Universiteit Brussel End-of-Life Care Research Group, Brussels, Belgium

2 Department of Family Medicine, Vrije Universiteit Brussel, Brussels, Belgium

3 Department of public health, Vrije Universiteit Brussel, Brussels, Belgium

4 Scientific Institute of Public Health, OD Public Health and Surveillance, Brussels, Belgium

5 EMGO Institute for Health and Care Research, VU University Medical Centre, Department of Public and Occupational Health, Amsterdam, The Netherlands

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BMC Family Practice 2012, 13:4  doi:10.1186/1471-2296-13-4

Published: 19 January 2012

Abstract

Background

While increasing attention is being paid to enabling terminal patients to remain at home until death, limited information is available on the circumstances in which people at home actually die. Therefore this study aims to describe patient characteristics, functional and cognitive status and physical and psychological symptom burden in the last three months of life among Belgian patients dying at home, according to their GPs.

Methods

In 2005, a nationwide and retrospective interview study with GPs took place on people dying at home in Belgium as reported by Sentinel Network of GPs in Belgium. GPs registered all deaths (patients aged 1 year or more) weekly and were interviewed about all patients dying non-suddenly at home, using face-to-face structured interviews.

Results

Interviews were obtained on 205 patients (90% response rate). Between the second and third month before death, 55% were fully invalid or limited in self-care. In the last week of life, almost all were fully invalid. Fifty four percent were unconscious at some point during the last week; 46% were fully conscious. Most frequently reported symptoms were lack of energy, lack of appetite and feeling drowsy. Conditions most difficult for GPs to manage were shortness of breath, lack of energy and pain.

Conclusions

Many people dying at home under the care of their GPs in Belgium function relatively well until the last week of life and cognitive status seems to be preserved until the end in many cases. However, symptoms which GPs find difficult to control still manifest in many patients in the final week of life.