Monitoring Quality of End-of-Life Care
Background
The number of people living to an old age is rapidly increasing in Western countries. Furthermore, technological developments in diagnostic techniques and therapeutic possibilities have increased the survival time of the terminally ill. As a consequence, medical decisions to start up different supportive care technologies (e.g. artificial breathing support, artificial administration of fluid and food) imply also more and more decisions with a potential or certain life shortening effect. In recent studies, incidence of medical decisions with a possible life shortening effect have been estimated at about 40% of all deaths, in Flanders as well as in other European countries (NEJM 1996, Lancet 2000, Lancet 2003). This means that in 4 out of 10 deaths in Flanders, and elsewhere in Europe, the dying process of the terminally ill is surrounded with medical technologies, and death of a patient is preceded by at least one end-of-life decision. To start up different supportive care technologies towards the end of life imply also ethical dilemmas for the patient and his family, and for the care providers. Furthermore, although there is a great need to identify the barriers that hamper the delivery of good end-of-life care, it appears also that in the terminally ill, the delivery of end-of-life care and treatment of symptoms has been poorly studied and evaluated. Although mortality is traditionally one of the most reliable health indicators, the quality of end-of-life care is poorly evaluated in Western countries. Therefore, research should develop quality indicators of end-of-life care, as well as systems to monitor the (development of) quality of this care, for the overall society, but also across care settings, as well as across patient populations.
Research Framework
The development of representative databases and analysis tools (Vertical research axe)
Policy oriented analyses (Horizontal research axe, based on different databases)
Subprojects
End-of-life care policy in nursing homes (POLICY)
Sentinel network Monitoring End-of-Life Care (SENTI-MELC Belgium)
Medical End-of-Life Decisions in Flanders (adults) (ELD 3 Adults)
Medical End-of-Life Decisions in Flanders (Minors) (ELD 3 Minors)
Sentinel Network Monitoring End-of-Life Care (SENTI-MELC The Netherlands)
Evaluation study of the euthanasia consultation project "LEIFartsen" (LEIF)
Analysis of notification procedure in euthanasia (NOTIFICATION)
Analyses of laws and regulations (LAWS)