Perceived Benefits and Risks of Research Involving Terminally Ill Patients: Physicians’ Perspective

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Abstract

Background Terminally ill patients are a particularly vulnerable group in healthcare research. Their participation raises ethical concerns about informed consent, therapeutic misconception, and potential exploitation, yet their exclusion limits evidence generation for improved end-of-life care. Few studies in low- and middle-income countries have examined physicians’ perspectives on this issue. Methods We conducted a qualitative study using descriptive phenomenology to explore physicians’ views on the benefits and risks of involving terminally ill patients in research. In-depth interviews were held with 24 physicians across two tertiary hospitals in Enugu State, Nigeria. Interviews were audio-recorded, transcribed verbatim, and analyzed thematically with NVivo software. Results Most physicians (75%) supported including terminally ill patients in research, citing opportunities to improve symptom control, enhance clinical management, and expand the knowledge base for future care. Reported benefits included stronger physician–patient relationships, deeper understanding of disease progression, and altruistic contributions by patients. However, concerns were raised about patient vulnerability, risk of emotional distress, unrealistic expectations, and ethical dilemmas in balancing protection with inclusion. Key barriers included inadequate funding, limited time, lack of research training, and constrained infrastructure for palliative care research. Conclusions Physicians in this study recognized both the value and the ethical complexities of research with terminally ill patients. Their insights highlight the urgent need for context-specific guidelines that respect cultural norms, safeguard patient dignity, and support ethically sound research in resource-limited settings. Strengthening these frameworks will enable equitable participation of terminally ill patients while advancing palliative and end-of-life care.

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