Palliative Care Research: Ethical Challenges

Abstract

With the progressive aging of our population and the increasingly number of patients with chronic advanced illness, Palliative Care is becoming significantly more important. In order to improve the quality of life of these patients it is essential to create more evidence, through research, on how to better manage their symptoms and treatment. However, due to several ethical concerns, this field of research has forested a debate with little consensus so far. Four main arguments are being presented as the source of the discussion: 1) Palliative Care patients' vulnerability, 2) struggle in obtaining a valid and adequate consent, 3) difficulty balancing the role of health care provider and researcher and 4) defining an acceptable risk threshold. The real question that arises is what unique challenges are raised by these apprehensions and what is their impact. Assuming that Palliative Care research creates new ethical concerns, it is undeniably critical to develop recommendations, restrictions or guidelines. The first three arguments have already been addressed in other research fields and, therefore, the ethical principles that guide any other form of research should also be applied and adapted for this field. Indeed, only the fourth argument - defining an acceptable risk threshold - creates a new ethical challenge, making the development of distinct guidelines, recommendations and restrictions indispensable. Properly addressing this ethical concern will enable researchers to conduct improved investigations, allowing protection but not preventing research participation by the patients, developing the much-needed evidence in this field.