The use of quality of life (QOL) outcomes in clinical trials is increasing as a number of practical, ethical, methodological, and regulatory reasons for their use have become apparent. It is important, then, that QOL measurements and differences between QOL scores be readily interpretable. We study interpretation in two contexts: when determining QOL and when basing decisions on QOL differences. We consider both clinical situations involving individual patients and research contexts, e.g., randomized clinical trials, involving groups of patients. We note (...) the ethical importance of such understanding: proper interpretation and communication facilitate health care decision making. Communication that facilitates interpretation is of moral significance since better communication can attenuate ethical problems and inform choices. Much of what is communication worthy about QOL assessments is determined by the particular QOL instrument used in the assessment and how it is administered. In practice, these choices will be driven by the purpose of the assessment, but, it is argued, to maximize understanding, we should combine the information garnered from traditional standardized QOL instruments, from individualized QOL assessments, and from a recently proposed dialogic paradigm, where QOL is determined by shared conversation regarding the interpretation of texts. And, while some studies can surely succeed using abbreviated methods of administration (e.g., postal surveys may suffice for certain purposes), we will focus on methods of administration involving interviewer–respondent interaction. We suggest that during the QOL elicitation process, interviewer and respondent should engage in a two-way conversation in order to achieve a shared understanding of the “answers” to QOL “questions” and, finally, to reach a shared interpretation of the individual’s QOL. (shrink)

Following Bernheim,1 we examine aspects of 'felicitometrics,'2 the measurement of the 'quality' term in Quality of Life (QOL). Bernheim argued that overall QOL is best captured as the Gestalt3 of a global self-assessment and suggested that the Anamnestic Comparative Self Assessment (ACSA) approach, in which subjects' memories of the best and worst times of their lives are used to anchor a Visual Analog Scale (VAS), provided a serious answer to the serious question, 'How have you been?' Bernheim compares and contrasts (...) the ACSA to multi-item questionnaire QOL instruments, such as the SF-36, concluding that the ACSA has a number of advantages. His discussion assumes that the use of QOL outcomes in clinical trials is both relevant and appropriate. In the present paper, we document the reasonableness of this latter assumption,4 contribute to the characterization of the similarities and differences between multi-item and individualized QOL instruments, and point to some other individualized instruments that may be used in clinical trial contexts. These 'other individualized instruments' differ from the ACSA in fundamental ways; but they are individualized in that the subject defines those areas in his/her life that are most important, and these may vary from subject-to-subject. (shrink)

This article analyses domestic and foreign reactions to a 2008 report in the British Medical Journal on the complementary and, as argued, synergistic relationship between palliative care and euthanasia in Belgium. The earliest initiators of palliative care in Belgium in the late 1970s held the view that access to proper palliative care was a precondition for euthanasia to be acceptable and that euthanasia and palliative care could, and should, develop together. Advocates of euthanasia including author Jan Bernheim, independent from but (...) together with British expatriates, were among the founders of what was probably the first palliative care service in Europe outside of the United Kingdom. In what has become known as the Belgian model of integral end-of-life care, euthanasia is an available option, also at the end of a palliative care pathway. This approach became the majority view among the wider Belgian public, palliative care workers, other health professionals, and legislators. The legal regulation of euthanasia in 2002 was preceded and followed by a considerable expansion of palliative care services. It is argued that this synergistic development was made possible by public confidence in the health care system and widespread progressive social attitudes that gave rise to a high level of community support for both palliative care and euthanasia. The Belgian model of so-called integral end-of-life care is continuing to evolve, with constant scrutiny of practice and improvements to procedures. It still exhibits several imperfections, for which some solutions are being developed. This article analyses this model by way of answers to a series of questions posed by Journal of Bioethical Inquiry consulting editor Michael Ashby to the Belgian authors. (shrink)

University students are at elevated risk for psychological distress, especially during the COVID-19 pandemic. The aim of this study was to warmly contact our students and investigate the psychological impact of the COVID-19 pandemic on the subjective wellbeing and levels of psychological symptoms of university students in Belgium. All bachelor and master students of the Vrije Universiteit Brussels were invited for a brief structured telephone interview in March, 2021. In total, 7,154 students were assessed by a structured interview, based on (...) the Kessler Psychological Distress Scale and the Anamnestic Comparative Self-Assessment. Compared to a representative sample, students considered their life during the pandemic as less satisfying compared to their life before the pandemic. Overall, all students have suffered from COVID-19 and the measures taken to contain the pandemic. Twenty percent of our sample of 7,154 VUB students scored above the K6 cutoff, indicating a heightened risk for having a diagnosable mental illness severe enough to cause functional limitations and to require treatment. This study highlights the need for psychological support for all students, during the COVID-19 pandemic. (shrink)