Table 2.
Self-Reported Needs of Culturally and Ethnically Diverse Surrogate Decision Makers, Selected Quotes from Text
| Surrogate needs | Gender | Race/ethnicity | Age (years) | Surrogate quotes |
|---|---|---|---|---|
| Lack of preparation and importance of ACP | Woman | Black American | 63 | “I am on that advance directive, DPOA. He did that seven years ago and I never even knew about the papers… He surprised me.” (Q1) |
| Woman | Black American | 59 | “The advance directive helps because everything's in black and white and when the person made a decision prior, they, you know, had a clear mind.” (Q5) | |
| Challenges initiating ACP conversations | Woman | Black America | 58 | “She [my mother] got frustrated. She didn't want to talk about it no more.” (Q7) |
| Woman | Asian American | 61 | “We didn't brood. We don't talk about dying; we talk about the future.” (Q8) | |
| Needing guidance to learn patient's values and preferences | Man | Asian American | 81 | “I want to know what the framework is. What do you look at first and what is the last consideration? You know, where does the family come into this and acknowledge, “Yes, let's go through with this.” (Q10) |
| Man | Asian American | 60 | “I managed to talk to my father a few years before about a DNR and he said no and, you know, that was the extent of how much I knew what his wishes were. The other stuff we were guessing at.” (Q11)17 | |
| Needing guidance to communicate with clinicians and advocating choices | Man | White | 80 | “Having a good doctor who saw the value of counseling was important because I met so many doctors that tend to just tell you and then walk out of the room. They are very impatient.” (Q13) |
| Woman | Black American | 58 | “And the thing with advance directives is that they can change at any time. But somebody needs to know. Somebody needs to be close enough to you as to say that, ‘No, she changed her mind about that. So, I don't think that's what she wants’.” (Q14)17 | |
| Needing guidance about how to make surrogate decisions | Man | Latinx | 65 | “To see [my son], his siblings, and my wife suffering, it was too hard. The decision [to remove my son's life support] was made because we couldn't do anything else” (Q17) |
| Woman | Black American | 71 | “My husband, because of how I feel about him, I may deviate depending on what's going on at that time.” (Q20) |
ACP, advance care planning; DNR, do not resuscitate; DPOA, durable power of attorney.