More research in palliative care is urgently needed, but research in this field remains highly sensitive as it often involves doing research on palliative and/or dying patients or their relatives. What the concrete sensitivities for these patients are, is rarely researched. We, however, hypothesize that improved insight into the specific ethical issues raised by palliative care research could generate relevant knowledge on how to address potential issues and help promote the idea that clinical research involving palliative and/or dying patients is possible and highly relevant.
To investigate this hypothesis we will look at some key concepts in clinical research ethics (namely 'vulnerability’, ‘risk-benefit ratio’, ‘coercion’, and ‘exploitation’) and how they apply to research involving palliative and/or dying patients. Based on the these analyses, we want to find out what specific recommendations follow from the different conceptual analyses taken together, and whether these differ according to research design.
Next, we will review how the problems and recommendations identified in the previous parts of the research compare to the ethical requirements of palliative care research as they are perceived in practice by ethics committees. We do this by performing an interview study with ethics committee members.
The final goal is to bring together theoretical analysis and empirical findings to provide practical recommendations aimed at researchers and members of ethics committees.