Table 2.

Overarching Themes Related to Firstborn Children in Surrogate Decision Making

Theme	Sibling	Race/ethnicity	Quote
Unspoken Expectations
	Eldest daughter	Latina #3*	“Because I’m the oldest, out of 8 kids, she put me in charge.”
	Younger daughter	African American #4	“I’m the youngest, but I’m smarter than my brothers and sisters by a far shot, but see, when my mom was ill, my brother became executor of health and my sister for finances. I stood back. I wasn’t going to fight them on anything.”
	Eldest son	Asian #18	“The philosophy of the Asian people –the eldest in the family makes the decision. It doesn’t have to be written down. It doesn’t have to be pointed out. You can say, ‘John Doe makes the decision.’ And no matter what happens, whether you blame the person, male or female, that’s the person that made the decision and it’s in accord with the person that is dying. So that’s it.”
	Son unknown birth order	White #48	“The oldest one makes the decision. It’s always the oldest.”
	Eldest daughter	Asian #37	“Because in the past, you (her parents) didn’t tell me that that will be happening, you know. ‘You’re oldest. You make the decisions.’ But you’re not telling us what you want. But you gave me this responsibility.”
Discussion of Death as Taboo
	Eldest son	Asian #28	“Yeah, the word ‘dead’ is not used at all. The oldest don’t use that term. They prefer to use ‘they left’ or ‘go’ or ‘they passed.’”
	Eldest daughter	Africanerican #46	“We didn’t know till she was actually in the hospital and every time the physicians would come in, she’d ask that they…put us out of the room. So, we never knew anything about the severity of her condition. I don’t know if it was just a Southern thing that you don’t communicate; you don’t tell, you know, your family.”
	Eldest daughter	Latina #36	“It’s difficult; nobody likes to talk about such bad things (death). I think that thinking about that, her defenses get lower. Because when an organism has stress or a person is tensed about something, their defenses get lower, they don’t work in an efficient way.”
	Eldest son	Asian #33	“My parents… they don’t want to talk about graveyards, but I think it’s something we should talk about. So I brought it to my mom’s attention. ‘Well, what? Are you telling me to go?’ —I say, ‘Well, that’s not why, why I’m doing it.’ —Like you’re trying to rush.”
Emotional Stress
	Eldest daughter	Asian #37	“Yeah, my standing in the family, being the oldest, it’s hard because some of my family lives in the Philippines. We have to look for a home for her (mother) and she don’t want to and – being the eldest, they all said,‘ You can do it.’ (take care of her mother at home) – but everyone got mad at me, you know, it’s the family, other relatives, the friends, the neighbors. They said, ‘You don’t know what you’re doing.’”
	Younger son	Latino #27	“The oldest daughter suffered a lot since she was in charge of him (her father). We gave all the responsibilities to her, because the mother was in the kitchen and I was working as well. It was very hard.”
	Eldest son	Asian #33	“I think it’s one of the double-edged swords of having a close family….because once relatives get involved, that’s where it gets…in arguments. It’s funny how the person who does all the work has to bear all of that. You know, and here the ones that don’t do any of it, they’re the biggest critics.”
	Eldest son	White #44	“The person that does have to make the final decision, if he’s going against another family member, he’s always going to hear about it and there’s always going to be somebody to press the guilt on you.”
	Eldest daughter	Asian #9	“I didn’t ask to be the oldest, you know.”
Feelings of Loneliness
	Eldest son	African American #14	“Yeah, like my momma, she was like the tree trunk or the whole tree. But when she had gotten to that state, the whole leaves start falling and drifting and the wind blew and everybody went away.”
	Eldest daughter	Asian #37	“You can’t even talk to no one, even to my family, especially if you are the oldest, too. You carry a lot of weight on your shoulders.”
Family Conflict
	Eldest son	Asian #30	“You know, the eldest one, the eldest son, has a kind of a family authority and the younger sibling, of course, should respect the elder’s kind of decision making.”
	Eldest son	Latino #2	“The doctor called my sister. Because I am the son…I told her (sister), “Don’t touch her. Send her here with me and I will take care of her.”
	Eldest daughter	African American #41	“My baby sister…she came in and turned into a different person. The woman dead almost. She didn’t want her to leave…and tried to change their mind for them. We don’t need that.”
	Eldest son	White #25	“I had ten brothers and sisters. When my mother went, you never saw (such) a fight in your life (about her care).”
	Younger daughter	Asian #21	“We got the do not resuscitate…Then they changed the power of attorney to my sister (the oldest) and so she gave the orders, but we did all the work. I mean we cleaned his butt…we slept on the floor and we listened. At 3:00 AM, he’d wake up and he needed water and I’d give him water, but somebody else is giving the orders, but you’re doing all the work.”
	Younger daughter	African American #4	“My mom wanted her funeral at one place; (then) they called someplace else and I lost it. Decisions that they were making, I would have never made them.”
	Eldest daughter	Latina #36	“In between sons or husbands or relatives, there are always discussions because one person wants to bury them somewhere, the other one doesn’t … and that’s a family problem.”
	Younger daughter	Asian #21	“Whatever you plan doesn’t take place because I’m not the oldest, but the other members did not really take care of him. Like my other sister didn’t talk to him for six years…and then she popped in and she said,‘You’re not the oldest. The eldest has to be the one.’ So she wanted it changed (the advance directive and DNR order). The doctor thought he actually had only two months. Then my older sister, she butt in.”
Potential Solutions to Prevent Conflict
	Eldest son	White #44	“If you start talking about it early, people get used to it and nobody wants to think about it, but it’s easier to talk about it when it isn’t inevitable than it is at a later date when it’s getting closer. So it’s better to start and talk about this when you’re relatively young and get the kids used to the fact that it’s coming.”
	Eldest daughter	African American #38	“Someone passes and families sometimes fall apart -- bring everyone together. Everyone is there. Everyone heard mom say, ‘My daughter’s going to handle everything.’ That’s it. But if she needs input or your help, I know that you guys are here to support her decision
	Younger daughter	Latino #35	“The family has to get together to decide. Because sometimes there are conflicts in the family, because they say ‘Oh they didn’t tell me anything,’ right? ‘They didn’t get my opinion or didn’t ask me anything,’ so it’s better to get together and make a decision.”
	Eldest son	Asian #11	“With my brothers now and my mom, I keep them involved. Even though I’m the closest proximity to her, you know, I can make the decision for her, but I let them know, you know, this is what we’re going to do; this is what mom wants. So they’re not caught in the dark and all of a sudden says - you know, if you’re the oldest - you get all the blame.”

^*Participant numbers were assigned at random. Illustrative quotes were obtained from 20 unique individuals. More than one illustrative quote was identified from 5 individuals.