Article Text
Abstract
Experiences of substitute decision-makers with requests for consent to non-therapeutic research participation during the dying process, including to what degree such requests are perceived as burdensome, have not been well described. In this study, we explored the lived experiences of family members who consented to non-therapeutic research participation on behalf of an imminently dying patient.
We interviewed 33 family members involved in surrogate research consent decisions for dying patients in intensive care. Non-therapeutic research involved continuous physiological monitoring of dying patients prior to and for 30 min following cessation of circulation. At some study centres participation involved installation of bedside computers. At one centre electroencephalogram monitoring was used with a subset of participants. Aside from additional monitoring, the research protocol did not involve deviations from usual end-of-life care.
Thematic analysis of interviews suggests most family members did not perceive this minimal-risk, non-therapeutic study to affect their time with patients during the dying process, nor did they perceive research consent as an additional burden. In our analysis, consenting for participation in perimortem research offered families of the dying an opportunity to affirm the intrinsic value of patients’ lives and contributions. This opportunity may be particularly important for families of patients who consented to organ donation but did not proceed to organ retrieval.
Our work supports concerns that traditional models of informed consent fail to account for possible benefits and harms of perimortem research to surviving families. Further research into consent models which integrate patient and family perspectives is needed.
- informed consent
- research ethics
- research on special populations
- death
- vital organ donation
Data availability statement
All data relevant to the study are included in the article.
Statistics from Altmetric.com
Read the full text or download the PDF:
Other content recommended for you
- Ethics of non-therapeutic research on imminently dying patients in the intensive care unit
- Feasibility of conducting prospective observational research on critically ill, dying patients in the intensive care unit
- Informed consent for functional MRI research on comatose patients following severe brain injury: balancing the social benefits of research against patient autonomy
- Learning from stakeholders to inform good practice guidance on consent to research in intensive care units: a mixed-methods study
- Professional-patient relationships and informed consent
- Exploring the experiences and perspectives of substitute decision-makers involved in decisions about deceased organ donation: a qualitative study protocol
- Presumed consent in emergency neonatal research
- The problem of informed consent in emergency medicine research
- Are positive experiences of children in non-therapeutic research justifiable research benefits?
- Informed consent in medical research: Journals should not publish research to which patients have not given fully informed consent–with three exceptions