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Palliative care research protocols: a special case for ethical review?
Tony Stevens1, David Wilde, Silvia Paz
1Academic Palliative Medicine Unit, Royal Hallamshire Hospital, Sheffield, UK.
Palliative Medicine
|October 7, 2003
Summary
Multicentre Research Ethics Committees (MRECs) in the UK generally review palliative care research protocols based on ethical principles. However, MRECs noted challenges with specific methods and identified vulnerable patient groups requiring careful consideration.
Area of Science:
- Medical Ethics
- Palliative Care Research
- Qualitative Research Methods
Background:
- Palliative care research is crucial for improving end-of-life care.
- Research ethics committees (RECs) play a vital role in safeguarding participants.
- Understanding REC perspectives on palliative care research is essential for ethical review processes.
Purpose of the Study:
- To ascertain the attitudes of Multicentre Research Ethics Committees (MRECs) in England, Wales, and Scotland towards palliative care research.
- To identify any unique ethical challenges posed by palliative care research protocols.
- To explore the experiences and concerns of MREC members regarding palliative care studies.
Main Methods:
- Semi-structured interviews were conducted with Chairpersons and Vice-Chairpersons of MRECs in England, Wales, and Scotland between October 2001 and May 2002.
- Interview transcripts were analyzed using a grounded theory approach.
- Four main themes emerged from the qualitative data analysis.
Main Results:
- Most MRECs reviewed palliative care protocols based on individual merits and broad ethical principles.
- Respondents were equivocal about whether palliative care research presented unique challenges compared to other specialties.
- MREC members reported reviewing a small number of palliative care protocols and expressed less experience with certain methodologies, particularly qualitative designs.
- Key concerns included safeguarding autonomy and justice, protecting patients during research, researcher influence, participant impact (intrusion, distress), and the vulnerability of specific patient groups (children, elderly, bereaved, ICU patients, ethnic minorities).
Conclusions:
- While MRECs apply standard ethical principles to palliative care research, specific methodological and participant-related challenges exist.
- There is a need for greater awareness and potentially specialized training regarding the ethical review of palliative care research, especially concerning vulnerable populations and qualitative methods.
- Ensuring robust ethical oversight requires addressing concerns about participant protection, researcher conduct, and the unique needs of patients in palliative care settings.