Does the ethical principle of vulnerability prevent equity and fair research participation in palliative and end-of-life care?

Background: Research ethics is the analysis of the ethical issues that may occur when conducting research. It ensures that research is performed with high ethical standards. Nevertheless, when conducting research in real world clinical practice, particularly in palliative and end-of-life care settings, many ethical challenges occur and need to be properly addressed. Patients in palliative care represent a vulnerable population deserving special attention when developing, implementing, and evaluating research. Due to their increased vulnerability, these patients are sometimes prevented from being included and participating in relevant studies, potentially leading to inequities and unfair participant selection. Aims: To provide an overview about the ethical principle of vulnerability, systematize different categories of vulnerability and discuss how these categories may affect participation in relevant research. Methods: This presentation is based on different international research projects, combining theoretical frameworks with empirical research findings. Results: Ethical frameworks with a pragmatic contour and implication are needed to protect vulnerable patients from potential harms and ensure their optimal participation in palliative care research. Important ethical challenges and issues in palliative care research occur due to patients’ increased vulnerabilities. If handled thoughtfully, they will not pose insuperable barriers to research. If ignored, they can slow the research process, alienate potential study participants, and cause harm. Conclusions: Ethical considerations in research involving patients in palliative care, particularly at the end-of-life, primarily concern the representation of their interests as participants and protection of their vulnerabilities and rights. Yet, preventing these patients from participating in relevant research due to their vulnerability might exclude them from accessing high-quality and evidence-based care and interventions.