By Amanda van Beinum, Nicholas Murphy, Charles Weijer, and Jennifer Chandler

“…this study […] it was a way of […] making him live on, in certain ways, or be able to say, ‘hey my dad did this’ you know, we did this, and maybe some good will come out of it…”

Intensive care units can be unfamiliar and confusing environments for families, and the sudden illness or injury of a family member is often accompanied by acute emotional distress. Unsurprisingly, adding a request for surrogate consent to a patient’s participation in research has been portrayed as a recipe for further family hardship.

Yet, recent findings suggest that this expected outcome may not be the case. Our interview study of family experiences of nontherapeutic research involving an imminently dying family member in the intensive care unit found that, in at least some cases, families interpret research participation as a meaningful opportunity. As the above quote illustrates, far from compounding burdens, the prospect of a dying patient’s participation in research allows some families to find meaning in loss.

Research on imminently dying patients in the intensive care unit is difficult to conduct. Intensive care units are busy places where clinical care of patients is the priority. Further, imminently dying patients are vulnerable, and such research takes place during an intimate time for patient and family. For these reasons, nontherapeutic research with imminently dying patients in the intensive care unit is uncommon. Not much is known about how families experience it.

Curious about the (unexpectedly) high consent rate achieved in pilot research on imminently dying patients in intensive care, we interviewed 33 family members who provided consent on behalf of patients who participated in a subsequent prospective, international observational study on the process of dying following withdrawal of life sustaining measures. Conceived to inform the appropriate timing of organ recovery in organ donation after circulatory determination of death, this minimal-risk study involved physiological monitoring before and after withdrawal of life-sustaining measures from patients in the intensive care unit.. The results of our interviews with participants’ family members were illuminating.

First, family members who agreed to participate in our interviews did not perceive research on the imminently dying patient to be intrusive or burdensome. This may have been due to perceptions that the physiological monitoring in the research was minimally invasive.

Second, some families appeared to have difficulty distinguishing between research, organ donation, and routine clinical care. This speaks to the need to allow families time to process information and to ask questions, something that merits further study.

Third, while all could offer reasons why they provided consent on behalf of patients for research participation, some family members had difficulty remembering having done so. This could be due to the time that had elapsed since the patient’s death, the emotionally charged experience of having a family member in the intensive care unit, or both.

One of the most important findings in our interview study is that families are key stakeholders in research with imminently dying patients in intensive care units. Family members explained to us that providing surrogate consent for research allowed them to affirm the intrinsic value of the patient’s life. Research on imminently dying patients is important for improving practices in organ donation, the care of future patients, and understanding the dying process. Consenting on behalf of the patient to research participation afforded some families an opportunity to find meaning in loss and to transform tragedy into a positive story of altruistic contribution to science at the end of life. As one family member stated: “…anything we could possibly do to help with awareness or anything that could benefit other people, we would do to help […] to bring as much positive out of this as we could.”

The research that families consented to on behalf of imminently dying patients was minimally invasive. Moreover, we only spoke to families who provided consent on behalf of a patient. It is therefore unclear how generalizable our interview findings are. Nonetheless, our results are certainly suggestive. Might not soliciting consent deny families a benefit that could help with their bereavement?

In research on imminently dying patients in the intensive care unit, researchers and research ethics committees rightly give primacy to the benefits and harms of research participation for the patient. Insofar as families are considered, the focus is on the burdens of approaching them for consent on behalf of the patient.

We believe it is time to expand the conversation and think more about overlooked benefits to families in research. The results of our interview study highlight that offering families the opportunity to consent on behalf of imminently dying patients to participate in minimal risk research may allow families an opportunity to find meaning in loss. In the interest of families involved in future research, we should take note of its transformative potential.

Paper title: Family experiences with nontherapeutic research on dying patients in the intensive care unit

Authors: Amanda van Beinum [1], Nicholas Murphy [2,3], Charles Weijer [2,3,4], Vanessa Gruben [5], Aimee Sarti [6], Laura Hornby [1,7], Sonny Dhanani [8], Jennifer Chandler [5,9,10].

Affiliations:

1 Children’s Hospital of Eastern Ontario Research Institute, Ottawa, Canada;
2 Department of Philosophy, Western University, London, Canada;
3 Department of Medicine, Western University, London, Canada;
4 Department of Epidemiology and Biostatistics, Western University, London, Canada;
5 Faculty of Common Law, University of Ottawa, Ottawa, Canada;
6 The Ottawa Hospital, Department of Medicine, Ottawa, Canada;
7 Canadian Blood Services;
8 Children’s Hospital of Eastern Ontario, Ottawa, Canada;
9 Bertram Loeb Research Chair, Ottawa, Canada;
10 Department of Medicine, University of Ottawa, Ottawa, Canada

Competing interests: CW receives consulting income from Cardialen, Eli Lilly & Company, and Research Triangle Institute (RTI) International.

Social media accounts of post author(s): @NB_Murphy @charlesweijer @jnfrchandler