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Family experiences with non-therapeutic research on dying patients in the intensive care unit
  1. Amanda van Beinum1,2,
  2. Nick Murphy3,
  3. Charles Weijer4,5,
  4. Vanessa Gruben6,
  5. Aimee Sarti7,8,
  6. Laura Hornby1,9,
  7. Sonny Dhanani1,10,
  8. Jennifer Chandler6,11
  1. 1 Critical Care Research, Children's Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada
  2. 2 Sociology and Anthropology, Carleton University Faculty of Arts and Social Sciences, Ottawa, Ontario, Canada
  3. 3 Philosophy, Western University, London, Ontario, Canada
  4. 4 Philosophy, Western University Faculty of Arts and Humanities, London, Ontario, Canada
  5. 5 Medicine, Epidemiology and Biostatistics, Western University Schulich School of Medicine and Dentistry, London, Ontario, Canada
  6. 6 Common Law, University of Ottawa Faculty of Law, Ottawa, Ontario, Canada
  7. 7 Medicine, Ottawa Hospital General Campus, Ottawa, Ontario, Canada
  8. 8 Critical Care Medicine, University of Ottawa Faculty of Medicine, Ottawa, Ontario, Canada
  9. 9 Deceased Donation, Canadian Blood Services Organ Donation and Transplantation, Ottawa, Ontario, Canada
  10. 10 Division of Pediatric Critical Care, Children’s Hospital of Eastern Ontario, Ottawa, Ontario, Canada
  11. 11 Medicine, University of Ottawa Faculty of Medicine, Ottawa, Ontario, Canada
  1. Correspondence to Amanda van Beinum, Children's Hospital of Eastern Ontario Research Institute, Ottawa, Ontario, Canada; avanbeinum{at}


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.

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Data availability statement

All data relevant to the study are included in the article.

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  • Contributors AvB, VG, AS, LH, SD and JC contributed to the conception and design of the project. AvB, VG, AS and JC participated in the acquisition and analysis of data for the work; NM, CW, LH and SD additionally contributed to interpretation of data for the work. AvB, NM, CW, VG, AS, LH, SD and JC drafted the work and revised it critically for important intellectual content and gave final approval of the version to be published. All authors agree to be accountable for all aspects of the work in ensuring that questions related to the accuracy or integrity of any part of the work are appropriately investigated and resolved.

  • Funding This project was partially funded by the Bertram Loeb Research Chair and by the Canadian Donation and Transplantation Research Program.

  • Competing interests CW receives consulting income from Cardialen, Eli Lilly and Company and Research Triangle Institute (RTI) International. LH is a paid consultant for Canadian Blood Services.

  • Provenance and peer review Not commissioned; externally peer reviewed.

  • Supplemental material This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

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