Essential Versus Nonessential: The Ethics of Conducting Non-COVID Research in a Population of Persons Living With Serious Illness During the COVID-19 Pandemic

The COVID-19 pandemic has created disruptions and ethical tensions in palliative care research; however, ethical principles must continue to be applied for evaluating the safety of conducting research with seriously ill patient participants and nurse participants in an acute care setting. This randomized controlled trial is conducted in the acute care hospital and tests the effects of a narrative intervention versus usual care on the primary outcome of patients' perception of quality of communication with their nurses and the secondary outcome of biopsychosocial well-being. In accordance with local and institutional COVID-19 guidance, research activities were temporarily suspended in March 2020, and when allowed to resume, some aspects of the protocol were adapted to maximize safety for all stakeholders: patients/families, nurses, and the research team. This article (a) considers case perspectives of all stakeholders involved in a randomized controlled trial conducted in the acute care hospital setting during the COVID-19 pandemic, (b) describes the ethical dilemma and ethical principles in the context of the case, (c) discusses lessons learned while resuming clinical research activities, and (d) provides an ethical framework for the decision-making processes around vulnerability and safety in conducting research during a pandemic with persons living with serious illness.