Recognition and Resolution of Ethical Barriers to Palliative Care Research

  • Sarah Gebauer
  • Perry Fine


Palliative care research can be defined as research related to understanding and improving the quality of life of patients near the end of life. There is a paucity of research in this field for two overarching reasons. Medical interest related to relieving burden of illness is relatively new, and patients nearing the end of life have either been marginalized (i.e., viewed as not worthy of “investment” of scarce research dollars) or viewed as too vulnerable to undergo the rigorous processes of formalized research. Concerns about such vulnerabilities have created an ethical paradox. In order to protect this patient population from potential harms, including coercion, exploitation, and the possibility of imposing additional suffering at the end of life, terminally ill patients have been deprived of the opportunity to participate in research afforded to other patient populations: the frank withholding of an ethical prerogative. As a result, innovation and empirical developments in the field have been seriously curtailed.

This chapter will explicate these barriers and misconceptions and address the ways in which research can and should proceed, following normative ethical imperatives. Patients with far-advanced medical illness provide a good paradigm to explore ethical concerns about vulnerable populations insofar as they embody some of the greatest challenges to unencumbered decision-making: a high symptom burden (including fatigue, pain, mood disturbance, nausea, dyspnea), cognitive impairment, and imminent mortality. As such, the tenets brought forth in this chapter may pertain to barriers to, and the provision of, ethical research in other vulnerable populations.


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Copyright information

© Springer International Publishing AG, part of Springer Nature 2018

Authors and Affiliations

  • Sarah Gebauer
    • 1
  • Perry Fine
    • 2
  1. 1.Department of AnesthesiologyUniversity of New MexicoAlbuquerqueUSA
  2. 2.Department of AnesthesiologyUniversity of UtahSalt Lake CityUSA

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