Abstract
BackgroundEnd-of-life care has become an issue of great clinical and public health concern. From analyses of official death certificates, we have societal knowledge on how many people die, at what age, where and from what causes. However, we know little about how people are dying. There is a lack of population-based and nationwide data that evaluate and monitor the circumstances of death and the care received in the final months of life. The present study was designed to describe the places of end-of-life care and care transitions, the caregivers involved in patient care and the actual treatments and care provided to dying patients in Belgium. The patient, residence and healthcare characteristics associated with these aspects of end-of-life care provision will also be studied. In this report, the protocol of the study is outlined.Methods/DesignWe designed a nationwide mortality follow-back study with data collection in 2005 and 2006, via the nationwide Belgian Sentinel Network of General Practitioners (GPs) i.e. an existing epidemiological surveillance system representative of all GPs in Belgium, covering 1.75% of the total Belgian population. All GPs were asked to report weekly, on a standardized registration form, every patient (>1 year) in their practice who had died, and to identify patients who had died "non-suddenly." The last three months of these patients' lives were surveyed retrospectively. Several quality control measures were used to ensure data of high scientific quality.DiscussionIn 2005 and 2006, respectively 1385 and 1305 deaths were identified of which 66% and 63% died non-suddenly. The first results are expected in 2007. Via this study, we will build a descriptive epidemiological database on end-of-life care provision in Belgium, which might serve as baseline measurement to monitor end-of-life care over time. The study will inform medical practice as well as healthcare authorities in setting up an end-of-life care policy. We publish the protocol here to inform others, in particular countries with analogue GP surveillance networks, on the possibilities of performing end-of-life care research. A preliminary analysis of the possible strengths, weaknesses and opportunities of our research is outlined.
Highlights
End-of-life care has become an issue of great clinical and public health concern
Important gaps in knowledge include: (1) who takes care of the dying, how often are specialized multidisciplinary palliative care teams involved and which factors affect their involvement; (2) how much time is spent in different care settings at the end of life and how often are patients transferred between care settings at the end of life; (3) what type of care is provided to patients at the end of life: what are the main goals of medical treatment, and how often is patient care focused at palliative care as recommended by the World Health Organisation [1,2]?
In case a specific concept could not be measured with an existing instrument, questions were developed on the basis of relevant literature and in dialogue with the Belgian Scientific Institute of Public Health and with a counselling project Advisory Board consisting of 5 MDs, a palliative care physician, 2 psychologists, a medical sociologist, a health scientist, an anthropologist and a representative from a home care nursing organisation
Summary
The objectives of this nationwide study are to describe end-of-life care provided to patients who had died nonsuddenly in Belgium, and to investigate patient, disease and healthcare characteristics associated with variations in end-of-life care To realize these objectives, a mortality follow-back study with data collection via the Belgian Sentinel Network of General Practitioners was set up. Possible weaknesses of the mortality study are the retrospective data collection approach making reconstruction of all care provided in the final three months of life difficult [35] and the reliance on GPs to report care and decisions at the end of life, including care delivered to patients in hospitals or decisions taken by hospital physicians. It will be possible to make practice and healthcare policy recommendations on the basis of this information
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