Table 2:

Barriers to end of life decision making for ICU patients and families with LEP

Barrier	Quote
1) Clinician communication is modified and less frequent
-Routine clinical updates are less frequent	One physician noted: “It can be awkward and sometimes sadly unfortunate that if [the patient were] English speaking you’d just stop at the door, and you say, ‘Hi. How are you? We missed you this morning. Everything is stable. We talked to your family. We’re gonna be back on afternoon rounds in a little while.’ and you just move on. Whereas, you can’t say that if they don’t speak English at all. It’s hard to just give them that update.”
-Decision making conversations are less frequent	One nurse commented: “[After the family meeting], all those people leave and oftentimes we’re in the room and [the patient and family] have additional questions when an interpreter isn’t there. That’s where a lot of the important discussions really happen—so you lose that piece.”
-Clinicians avoid difficult and time consuming conversations	One physician said: “I do think there is more of a tendency to not engage when we might otherwise if they spoke English.”
-Infrequent communication leads to patient and family mistrust, distress, inadvertent misconceptions	An interpreter commented: “[Waiting for an interpreter] takes time and sometimes the patient is waiting. It causes stress and tension [for the patients].”
-Focus on language accuracy reduces likelihood that empathy is relayed effectively	A physician said: “Even if you want to try to connect, the interpreter may not have the same inflection of empathy or concern that you’re trying to convey.”
-Clinicians listen less and have Less direct communication with patient	An interpreter said “It’s easier [for physicians] to talk to the son who speaks English … I think it’s just easier to talk to the other part of the family than talking to the patient.”
2)Clinician ability to assess patient and family understanding is impaired
- Patient and family understanding of illness, treatment options, prognosis	A physician noted: “It’s harder to assess [the patient’s health literacy] because I can’t necessarily analyze the sophistication of their language.” A physician stated: “Sometimes I feel that the patient will just get a glazed-over look . . They may or may not be understanding, but they just keep saying, ‘Yes.’”
-Patient and family preferences and culture or faith	A physician explained: “How much of this [disagreement] is me misinterpreting or not understanding [the family’s] perspective … just not being a worldview or culture that I know anything about.”
-Patient and family situational dynamics	A nurse commented: “I did have a patient [who did not speak English] … and the patient started to get kind of upset, and … I didn’t know what to do … I could see that there was some sort of conflict there and I didn’t know what they were talking about.”
3) Relationship building is impaired
-Focus on language accuracy can impair usual patient/clinician therapeutic relationship	A physician stated: “You’re emphasizing precision of language rather than forming a connection and having a human interaction.”
-Need for third party (interpreter) affects usual patient/clinician therapeutic relationship -Discussion of sensitive topics more likely to be inappropriate and ill timed	A nurse noted: “[When using an interpreter], all that information passes through somebody else who is a stranger to you. That may circumvent the nurse/patient relationship you may develop with somebody.” An interpreter recalled” “Many times doctors and nurses don’t take into consideration when they’re asking questions about sexual preference, or … drug use, STDs or other kind of maybe legal problems that can come up when they’re asking questions. They ask those questions with the family in the room … I feel uncomfortable sometimes . . A gay person that family members didn’t know he was gay was in the ICU, and the partner was there. [The family] learned that that was a partner, not the roommate right there … that was difficult.”
4) Patient/ Family understanding/ of decision making concepts (e.g. palliative care) is impaired	An interpreter noted: “Do not resuscitate or resuscitate … [Patients and families] have no idea what the concept is. It’s a different concept [for them]. They’re always gonna say, do whatever you can.”
5) Treatment limitations are perceived to be unacceptable due to faith-based and cultural beliefs	A nurse stated: “I think a lot of times they [patient/family] can’t withdraw cares because that seems like they’re… actively taking (a) life.”
6) Patient and family decision making styles are different
-Families are not used to making decisions to limit life support	An interpreter stated: “[In my home country, the families always say to the doctor] ‘Whatever you think is the best, and it’s your decision…You know what you’re doing. Don’t ask me.’ It’s because, in our countries, we don’t have to … .make those decisions.”
-Many families prefer nondisclosure	A physician explained “There may be quite profound cultural differences that coincide with people of limited English proficiencies. Ideas around the illness and treatment and the role of who makes decisions and who information should be shared with.”
-More family members are involved in decision making	An interpreter said: “For Hispanic families, there are several family members. It’s just not immediate family. It’s just the cousins and the uncles and everybody’s there, and everybody—everybody’s opinions count.”