Maximizing benefits and minimizing risks in palliative care research that involves patients near the end of life

Title

Maximizing benefits and minimizing risks in palliative care research that involves patients near the end of life

Creator

Fine PG

Publisher

Journal Of Pain And Symptom Management

Date

2003

Subject

Humans; Terminally Ill; Risk Assessment; Research; Ethics; Palliative Care/ethics; Biomedical and Behavioral Research

Description

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

Rights

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).

Type

Journal Article

Citation List Month

Backlog

Pages

S53-62

Issue

4

Volume

25

Citation

Fine PG, “Maximizing benefits and minimizing risks in palliative care research that involves patients near the end of life,” Pediatric Palliative Care Library, accessed November 28, 2021, https://pedpalascnetlibrary.omeka.net/items/show/13007.

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