Ethical and practical issues in designing and conducting clinical trials in palliative care

Family communication and decision making at the end of life: A literature review

“…One of the first is in regard to the vulnerability of terminally ill patients. Worries about terminally ill patients' participation in research include their debilitating physical and psychosocial symptoms, dependency on others for care, and potential cognitive impairment or inability to provide consent (Fine, 2003; Reyna et al, 2007). However, the concern over patients' vulnerable state and inability to participate in research has stunted the growth of evidenced-based knowledge about EoL care (Casarett, 2005; Gysels et al, 2012).…”

Ethical Challenges in Conducting Research on Dying Patients and Those at High Risk of Dying

“…In addition, there is considerable uncertainty when dealing with biological response and individual variability, and the limited knowledge regarding the efficacy of various treatments, making it difficult to identify patients who are candidates for research that only applies to the end of life (Agrawal, 2003). This difficulty in defining the phase of illness that should be considered end of life also creates practical difficulties establishing at which point in the illness trajectory the proposed research should be considered (Casarett and Karlawish, 2000;Reyna et al, 2007). Research in the early or acute stages of illness will often seek to modulate disease trajectory, requiring that research ethics reviews focus on patient safety, autonomy, and self-determination.…”

“…Conversely, researchers should strive to avoid a consent process that becomes overly burdensome to a palliative patient. the patient to feel valued for contributing to medicine and science, and to 'give back' to society so that others might benefit (Hopkinson, et al, 2005;Reyna et al, 2007). More data are needed to describe how dying patients actually perceive risk and benefits to help guide investigators and institutional ethics review boards.…”

“…There are several factors that can make dying patients a particularly challenging group to study (Reyna et al, 2007). They may be experiencing great psychosocial distress, and are often surrounded by family members who are desperate for any measures that might potentially change their prognosis.…”

Coping with cancer mindfully: A feasibility study of a mindfulness intervention focused on acceptance and meaning in life for adults with advanced cancer

“…Not all of the above interventions are easily accessible for this population. Ethical considerations in this particularly vulnerable group are clearly a major barrier to research (Agrawal, 2003;Reyna et al, 2009), with causes of attrition including loss to follow-up, deterioration in health and participants' death (Serfaty et al, 2019).…”