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.
The development of representative databases and analysis tools (Vertical research axe)
- Work package 1 = Study of medical end-of-life decisions, via the Death certificate method with a sample of 6000 deaths (ELD 3).
- Work package 2-4 = A permanent three year End-of-life care registration, via Belgian Sentinel Health Network of General Practitioners (SentiMelc).
- Work package 5 = A permanent End-of-life care registration, via Dutch Sentinel Health Network of General Practitioners (SenitMelc NL).
- Work package 6 = Problems and needs in consultations for euthanasia, via the Flemish physicians network on information and consultation in euthanasia, the “LEIF-artsen” (LEIF).
- Work package 7 = Policy-survey of Hospitals and Elderly homes (POLICY).
Policy oriented analyses (Horizontal research axe, based on different databases)
- Work package 8 = analysis of laws and regulations on palliative care and euthanasia
- Work package 9 = social inequalities in end of life care (palliative care and end-of-life decisions)
- Work package 10 = analysis of (non-competent) minors
- Work package 11 = trend analysis of end-of-life decisions 1998-2001-2006
- Work package 12 = review of the reported cases of euthanasia and notification procedure
- Work package 13 = systematic comparative analysis between Flanders and The Netherlands
- Work package 14 = analysis of quality indicators of end-of-life care and monitoring systems (cross patient populations, and cross care settings)
Prof. Dr. Luc Deliens, Prof. Dr. Johan Bilsen, Dr. Joachim Cohen, Dr. Isabelle François, Mevr. Carolien Vantournhout
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)
Agency for Innovation by Science and Technology (IWT)