Understanding Decision Making in the Intensive Care Unit: a National Study

  • End date
    Mar 31, 2022
  • participants needed
  • sponsor
    Centre hospitalier de l'Université de Montréal (CHUM)
Updated on 25 July 2021
Michaël Chassé, MD PhD FRCPC
Primary Contact
Centre Hospitalier de l'Universit de Montr al (CHUM) (3.6 mi away) Contact
+8 other location
brain injury
step 2


Given how central Substitute Decision Makers (SDMs) are to the process leading to end of life decisions and sometimes, organ donation, it is striking how poorly understood this decision-making process is. A 2017 scoping review on the topic of soliciting SDM consent to organ donation reported on more than 168 studies covering a broad range of topics, including: SDM characteristics and predictors of consent; the process of soliciting consent; and the effect of the decision on subsequent process of care and on family well-being. An unexplored area, however, is factors - including modifiable factors - that influence SDM decision making at the end of life, which organ donation is part of, such as: responses to stress, support from extended families and friends, and personal beliefs about the ongoing medical conditions. This project seeks to fill this clear and important gap.

In the ICU, at the end of life, SDMs are under incredible emotional distress, have often not eaten or slept properly for days preceding discussions about end of life and organ donation, and are also in the midst of grieving for their loved one. The time pressure poses challenges for SDMs' decision making. Thus, this study will investigate novel, potentially modifiable reasons for end of life decision so that we may better support this personally challenging and important decision, especially if organ donation decision interferes with the decision process.

Primary objective: To investigate beliefs and experiences of SDMs involved in the decision-making process around withdrawal of life sustaining therapies .

Secondary objective: To inform efforts to improve support for SDMs with the aim of improving the decision-making process end-of-life decisions, including when organ donation is involved.


A national multicenter multi-methods study with SDMs will be conducted in two steps. In Step 1, a semi-structured interviews with SDMs will be conducted. The sampling frame will balance interviews with those that were approached or not for organ donation, and consented or not to organ donation. Interviews will be informed by two complementary theoretical frameworks. Building on Step 1 results, in Step 2 a national telephone survey of SDMs will be conducted to test which factors are associated with end-of-life decisions.

Condition Organ Procurement, Organ Transplantation, Organ Transplant - Pediatric, Organ Transplant
Treatment Step 1: Semi-structured Interviews, Step 2: National Telephone Survey
Clinical Study IdentifierNCT03850847
SponsorCentre hospitalier de l'Université de Montréal (CHUM)
Last Modified on25 July 2021


Yes No Not Sure

Inclusion Criteria

Substitute decision maker (SDM) and patients with at least 18 years old
SDM(s) of patients in the ICU with or without brain injury for whom withdrawal of life-sustaining therapies is considered or has been discussed
SDM(s) of patients for whom death is expected to occur within approximately 1 hour after withdrawal of life-sustaining therapies
English or French speakers SDM(s)
SDM(s) reachable in ICU

Exclusion Criteria

SDM is not reachable after pre-consent in ICU (after 5 initial attempts within a 3-week period)
SDM asks to postpone the interview more than 3 times
SDM unable to provide informed verbal consent for any reason
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If you are confirmed eligible after full screening, you will be required to understand and sign the informed consent if you decide to enroll in the study. Once enrolled you may be asked to make scheduled visits over a period of time.

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Complete your scheduled study participation activities and then you are done. You may receive summary of study results if provided by the sponsor.

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