VU University Medical Center, EMGO Institute for Health and Care Research, Amsterdam, The Netherlands
Bregje Onwuteaka-Philipsen (1967) is professor of end-of-life research. She is program leader of the research programme ‘Quality of Care', one of the 4 research programs of the EMGO institute. Furthermore she leads the research line ‘public health at the end of life’ at the department of public and occupational health. Originally the research in this research line, as most end-of-life research, was predominantly performed by studying physicians, other health care professionals and relatives of the patients. An example is the nationwide monitoring of end-of-life decision making and euthanasia regulation that took place every 5 years since 1990. She was involved in this study in1995, 2001 and 2005 (the last two times as project leader). In 2001 this study was combined with a European study (EC 5th Framework), making it possible to compare end-of-life decision-making between countries for the first time. Since the patient perspective needs more attention to further develop end-of-life research, she started expanding the focus of our research programme to the patient perspective. The start of a large cohort of over 5000 people with one or more of four of the most current advance directives in 2005, was an important step towards achieving this. This cohort forms a quantitative framework in which several, mostly qualitative, projects studying patient preferences and expectations and the usefulness of advance directives are nested. The cohort also forms the basis for a project to further develop the concept of personal dignity at the end of life. In 2008 she received a career award from the Netherlands Organisation for Scientific Research (NWO, VICI scheme)for the research programme 'the patient perspective in end-of-life care: personal dignity, preferences and participation'.