The ethics of end-of-life research
Humans; United States; Qualitative Research; Research Design; Research; Ethics; Practice Guidelines; Palliative Care/ethics; Ethics Committees; Decision Making/ethics; Human Experimentation/ethics; Clinical Trials/ethics; National Institutes of Health (U.S.); Terminal Care/ethics
A notable and welcome increase in palliative care research has led to a multitude of ethical issues and concerns for researchers, clinicians, patients (subjects) and their family members (who also might be subjects), granting agencies, and professional journals. This edition of "Palliative Care Pearls" summarizes the recommendations from a work group that met at the National Institutes of Health in September, 2002. The primary purpose for that meeting was to explore the unique characteristics of this research population and the ethical concerns that might require tailoring of "standard" clinical research processes. The proceedings culminated in a document from which open discourse and a more formal set of guidelines might emanate to both foster more and better research, while providing protections for research subjects. This 62 page long monograph was published as a supplement to the Journal of Pain and Symptom Management (April, 2003). It includes six "plenary" papers, each that focuses on a distinct ethical domain of palliative care research and concludes with a set of recommendations and research questions. These might best be viewed as hypotheses that need to be tested or further explored.
2004
Fine PG
Journal of Pain and Palliative Care Pharmacotherapy
2004
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1080/j354v18n01_06" target="_blank" rel="noreferrer">10.1080/j354v18n01_06</a>
Maximizing benefits and minimizing risks in palliative care research that involves patients near the end of life
Humans; Terminally Ill; Risk Assessment; Research; Ethics; Palliative Care/ethics; Biomedical and Behavioral Research
Research in end-of-life care is constrained more by pragmatic, social, cultural, and financial constraints than ethical issues that preclude the application of typical research methodologies. When normally accepted and ethically sound protections for subjects (especially for those who lack independent decision-making) are in place, exclusion of patients with far advanced disease from research is in and of itself unethical. Involvement in research may have a therapeutic, anticomiogenic effect on dying patients and their families. Institutional review boards must be educated to evaluate research protocols involving this group of vulnerable patients with an eye toward assuring that ethical safeguards are in place, conflicts of interest are transparent and minimized, and that the proposed methodology has duly considered all practical exigencies so that resources and peoples' time and emotional investments are not squandered. Investigators and research review committees must be knowledgeable about placebo effects and under what types of circumstances their use is justifiable, preferred or requisite to fulfill both ethical and scientific imperatives. Examples of investigations using various research methodologies, along with their respective ethical considerations are provided.
2003
Fine PG
Journal Of Pain And Symptom Management
2003
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/s0885-3924(03)00056-3" target="_blank" rel="noreferrer">10.1016/s0885-3924(03)00056-3</a>