Table 2.
Moments of communication and relationship-building in a patient’s ICU journey
| Moment and/or milestone | Definition | Quote about interaction between EDDI at this moment and/or milestone | Summary of context |
|---|---|---|---|
| First ICU interaction | The first time the ICU team, the patient, and/or a loved one meets, communicates, and/or interacts. | "… an Indigenous man who was stabbed … I remember the physician went up to the family and … said … ‘I don't think there is anything that we can do here.' And the dad was like, ‘That is my son, you will talk to me' … He [the father] said ‘ … Be professional, you need to introduce yourself' … You need to treat these people with respect." (Nurse 2) | A nurse described a scenario where a physician informed an Indigenous family that their loved one was dying without introducing himself first. |
| Transition into the ICU | Moments leading up to and including the transition period into the ICU, including very early moments of the ICU admission. | " … especially with Indigenous [peoples] … it's like … ‘Why didn't you call me and tell me, my loved one was being moved to ICU?' … when people have a bad experience with the health care system … that just can keep filtering down … " (Allied Health 3) | An allied health professional described a situation where an Indigenous loved one was not informed about a patient being moved into the ICU and reflected upon how bad experiences using the health care system can influence perceptions and trust. |
| When the loved one(s) are asked to step out of the room | The health care team requires the loved one(s) to be physically distanced and/or separated from the patient. Loved one(s) may be required to leave or not enter the patient's room while the ICU team completes a procedure or provides care. | "I had this one experience where they told us to step out of the room, and … they didn't tell me why it just seemed like such a big rush … I understand that … was an emergency … even after … that happened, nobody really explained to us what really happened …" (Loved One 3) | An Indigenous loved one described a situation where they were asked to step out of the room without clear communication as to why. |
| When the patient needs to be relocated | The patient is moved from a familiar location to another (new) location for a definite or indefinite period of time, during the patient's stay in the ICU (i.e., distinct from transition out of the ICU). | " … sometimes moving a patient, in my opinion isn't always necessary. And it depends on the person in charge … usually, it's a good reason you need an empty … private room, and your patient is the only one that can move somewhere … and then there's other times where you might feel that it's not necessary for your move to be made … maybe there’s a family situation … that needs to be sorted out before we can move them …" (Nurse 1) | A nurse described the potential for inequitable decisions about which patients are given private rooms. |
| Period of patient stabilization | Interval of time that occurs after the ICU team has addressed acute life-threatening conditions, but the patient remains in critical condition and long-term health outcomes remain unknown. | "I sat [child] down and we had a pretty deep and honest conversation about what our next few days could look like … The possibility of mom not making it … Can't imagine any father wanting to have that conversation." (Loved One 2) | A loved one describes having difficult conversations with a patient’s child when outcomes were unknown. |
| Huddles with ICU team | Regularly scheduled or unscheduled information-sharing gatherings, which include the ICU team, patients, and/or loved one(s) and may occur in-person or at-a-distance with technology (e.g., phone). | " … there's still elderly individuals that would never know how to … login on a WebEx or Zoom to talk about their elderly partner who's in ICU." (Allied Health 4) | An allied health provider describes difficulties in connecting with elderly loved ones using video conferencing technology during rounds. |
| Request for one-on-one communication with ICU team (member) | A patient and/or loved one requests in-person or technology-enabled at-a-distance communication with a specific member of the ICU team, any member of the ICU team, and/or the ICU team as a whole. | " … we get a lot of patients … from northern communities … or rural and, people can't just make it to come to [City] and be at the bedside … just finances and the distance can be a barrier … " (Allied Health 3) | An allied health provider describes finances and distance as barriers to ICU bedside presence for loved ones residing in northern and rural areas. |
| Patient and/or loved one(s) gives health information or advanced directive to ICU team | A patient and/or loved one(s) provide information about the patient's health history, health beliefs, and/or end of life wishes (i.e., advanced directives), which directly impact health planning, intervention, and decisions. |
“About a month ago, there was a family that their health literacy … was not very high … they were having a tough time even understanding the question itself … trying to figure out … what medications the patient had been taking.” (Allied Health 5) “… you have to be able to build relationships and rapport very quickly, so people are willing to share that information … especially if there's things around … substance abuse …, addiction … mental health … that you're asking, and some of those pieces are critical to the patient's … ICU stay or where things are at.” (Allied Health 3) |
An allied health professional described how low health literacy can make collecting important health information challenging. An allied health professional described how it is important to build relationships to understand health conditions, particularly conditions that are stigmatized (mental health, additions), to ensure ICU care is responsive. |
| ICU team gives health information to patient and/or loved one(s) | The ICU team provides information and related education about the patient's status, prognosis, treatment/intervention plan, and/or options. | “… [a] language barrier can be very, very challenging … in a sense, there's already a language barrier when … we’re talking … the language of … health care words and health care discussions … you throw on top of that … someone who doesn't have English as their first language, it becomes very, very difficult.” (Physician 3) | A physician identifies how medical jargon is a general language barrier which could be made more challenging if the patient and/or loved one(s) are English language learners. |
| Decision-making junctions | The ICU team and the patients and/or loved one(s) must make (shared) decisions and/or set direction for care, which could be especially challenging given the life-or-death nature of the decisions to be made. | “… if you have someone that's used to having … their cultural basis, their family experience is to have five or six people in the room making a decision supporting each other all the time, if they're now by themselves doing this, because they're, you know, legally, the person that's been decided is the decision maker … that that can be very challenging to … watch.” (Allied Health 5) | An allied health professional describes a disconnect between the legal requirements for substitute decision-making and the process of making health care decisions in differing cultural contexts. |
| Meaningful connection (e.g., physical, emotional, communication) | The patient, loved one(s), and ICU team are connected physically (touch), verbally/nonverbally (communication), and/or emotionally. This moment is not specifically related to an aspect of identity. |
“… depending on how confused the patient is, sometimes it [a video call] can make it worse. … especially … for people with children … the children come on the video and their family member is … sedated and paralyzed and tubes and everything coming [out] … so we tried our best to say, ‘Dad can still hear you' and … ‘Maybe you want to sing Dad's favourite song' … or ‘Tell us about what Dad likes' … But it can be a scary experience.” (Allied Health 2) “… I needed to … we were all missing being able to touch her to tell her that we love her … I'm a farm boy, we used to AI [artificially inseminate] cows all the time … if there would have been like a hole in the wall and they could have taped that glove [long rubber glove from fingers to elbows used in AI]. And I could have stuck my arm through it sterile on that side. And I could have just held her [the patient's] hand or … if [child's name] could have just held her hand and had a little speaker box or something to be able to talk directly to her … ” (Loved One 2) |
An allied health professional describes video calls between patients and their children and how the team tries to encourage children to share about their parents to make the experience less scary for the children. A loved one applies his experience from artificially inseminating livestock to try to find a creative solution to hold his wife’s hand while she had to stay in sterile conditions. |
| Affirming patient and/or loved one identity, beliefs, and/or values | Specific aspects of cultural, religious, social, intersectional identity, values, and beliefs are acknowledged, and/or affirmed. |
“Smudging is tricky because our beds don't fit in the smudge room. So, we can't get them up there. But I will ask if that's something that they want. They can smudge a pillowcase and then I'll put the pillowcase on the pillow. And then at least they have the smell of the sage and stuff so … it's not ideal, but … it's something … ” (Nurse 2) “Don't medicalize everything. Understand that Indigenous population has their own type of healing and try to incorporate that into … their health care, and that includes diet … a local Indigenous diet when people are in the hospital … and traditional healers … Indigenous medicines to be open to that … ” (Physician 2) |
A nurse describes barriers to smudging for Indigenous patients and how the team respectfully tries to incorporate cultural beliefs. A physician describes how ways of Indigenous healing can be incorporated into health care. |
| Patient and/or loved one(s) are or are not safe or comfortable to be emotionally vulnerable | The patient and/or loved one(s) are comfortable to communicate, engage (or disengage), and/or act in a manner that is meaningful and/or aligned with their emotions/emotional state. | “… they had an Elder on call … And I just felt like I had a.. person there to talk to when I was feeling really low … I was able to call this Elder anytime of the day … And they would come to me and talk to me … we'd meet in this … special room, and we smudge … And it really helped my spirit be strong through that time … ” (Loved One 3) | A loved one describes how having an Elder on call helped them feel safe and able to connect with their beliefs when they were navigating a challenging time alone. |
| ICU team connects their own emotions and identity to patients and/or loved one(s) | The intersectional identity of a member of the ICU team facilitates meaningful engagement, personal connection, emotional investment, self/team reflection, and/or closer relationships with the patient and/or loved one(s). | “… she [the patient] was maybe five or 10 years older than me. And she had two daughters. And I remember … just feeling like, this could be me.” (Allied Health 4) | An allied health professional reflects on similarities between themselves and a patient. |
| Transition from the ICU | Preparation, planning, coordination, and decision-making related to a period of transition out of the ICU to either a step down unit, palliative care, another unit/ward, another facility, death, and/or home. | “… culture has a huge part of grieving … some are very vocal, some are very quiet. Some are communities, some are very isolated … it's so interesting to see … the ritual after that person passes … depending on their faith, what that looks like and what you can … do and can't do with that person once they go.” (Nurse 2) | A nurse describes diversity in grieving practices and rituals surrounding death and dying. |
| Follow-up communication after ICU stay | Communication and coordination that occur after the patient has left the ICU with loved one(s), caregivers, health care professionals, and/or community-based supports. | “… they [the health care team] communicated information to him [the patient] … And I was his next to kin … I don't know why they told him because he was still not feeling too well … I think they should have told me instead of him, because … I don't think he was thinking clear about a lot of things.. they did kind of write down … his after plan, but they weren't really detailed. So, I … had to phone in and … get more details from them.” (Loved One 3) | A loved one describes how a patient’s cognitive capacity was a barrier to them understanding discharge plans, which resulted in the loved one having to follow up with the team to get more information. |
EDDI = Equity, Diversity, Decolonization and Inclusion; ICU = intensive care unit