Table 2.

Sample quotes

1: Prior experiences with ACP
 Prior discussions with dialysis team or family“Yeah, it [ACP] was really something to think about. But when you have to say – take her off [dialysis] and she’s not going to be with you anymore. You know you really have to think about that. And this is something I have to live with. I have to say… I don’t want to see my wife suffer any more than what she is, but I also don’t want to have a guilty conscience.” [interview 6, family, male, white, health care proxy for patient with cognitive impairment]
“Well, I try to be as honest and…sometimes that’s the problem everybody don't like to hear. I try to set up what my wishes are. I told them I don’t want a funeral. They don't’ want to discuss that. I’m like we got to get that planned so the last time I tried to bring it up they all started arguing with me and crying. I’m like this is something to needs to be discussed.” [interview 8, patient, male, Hispanic]
“I’ve talked about it with her [daughter] as well and if something happens to me she knows what to do. My grandchildren on the other hand they’re not trying to hear anything because they’re still young, still invincible.” [interview 1, patient, female, Black]
“I have a DNR.” [And who did you speak to about this?] “My wife. She knows it.” [interview 11, patient, male, white]
“…I made a lot of… preparations… the house I live in. My wife and I bought it some years ago
and I put the house in my sons’ names, insurance is in their names, just about everything, I have a car, everything is in their names.” [interview 3, patient, male, white]
“As a retired Service man... we’ve already talked about burial.” [interview 2, family, female, white, patient with cognitive impairment]
 Role of the primary care physician“She’s [primary care physician] the one that listens to us…. She’s the one that really pushed to…find out what was going on with his kidneys… the one that has really pushed a lot of things.” [interview 13, family, female, Native American]
2: Factors that may affect perspectives on ACP
 Dialysis experiences
  Positive“I don’t worry about it [ACP]… adjust it [dialysis] and run day by day and work with these nice people. I’ve been very happy here – never consider making a change.” [interview 5, patient, male, white]
“Well, I couldn’t believe because he [nephrologist] lives in XXX – quite a little drive out there and he came to see me [in the hospital] on a Sunday…he came in there that evening and he sat down and we just spent an hour talking.” [interview 13, patient, male, white]
“They’re [social worker and nutritionist] very open and honest and you can catch one of them when they’re going by or make an appointment to see them. They’re both very responsive to your questions and very helpful. XXX has helped me a lot over the years with different things… I would find difficult to do—for instance helping me with transportation. Yeah, they’re very easy to communicate with.” [interview 4, patient, female, white]
  Negative“And these nurses are so busy all the time. Many times I’ve been in conversation with them and it just gets started and a bell goes off. They have to go take care of that immediately and they can’t always come back to listen to me or anybody… they just don’t have the time.” [interview 7, patient, male, white]
“… [You] can tell when you start talking to people that they’re not really interested [in what you are saying] by their actions. So, no I don’t talk to too many people [on the dialysis team] about it [stress related to dialysis]. It kind of turns them away.” [interview 14, patient, male, white]
“…[S]he [charge nurse] used to work on the unit but I always felt that she didn’t really like [me]… I don't know maybe my own personality, maybe I didn’t joke enough. She’s never actually talked to me unless she was in charge of the unit and then she would have to ask if I had any problems. I feel there’s a lot of favoritism.” [interview 12, patient, female, white]
“The social worker gave me all the numbers to call [to get services for brother on dialysis], but they wouldn’t listen to me…you needed a title.” [interview 10, family, male, Native American]
“There’s things that happen to you that’s a whole new territory because it’s a subculture and the thing that I would like to see happening is a better educational kind of thing. For example, they told me I had to be on dialysis because… I had too much creatinine in my system, but nobody ever gave a class on Medicare.” [interview 3, patient, male, white]
“I’m not an educated person by no means and I dropped out of high school and stuff, but there’s some ignorant people that are taking care of you [on dialysis unit]. I mean they know exactly what they were told and nothing else.” [interview 13, patient, male, White]
“And so I was always grief stricken to death over how rude, how desperately rude everything [in the dialysis unit] was.” [interview 12, patient, female, Hispanic]
“It didn’t make sense to me [family not allowed on dialysis unit] because I think he would have been more comfortable and I would have been more comfortable when he first started to have been there and seen the process and been part of the process and being able to say—OK, now I understand where you’re coming from. Because when he tells me stuff I’m sitting there going—no frame of reference. I don’t even know what that back room looks like. I know you got TV and that’s all I know. I don’t even know what the machine looks like.” [interview 14, family, female, Native American]
 Life experiences and patient traits“I told you my dad was on it [dialysis]. He had a stroke…Well, they had to put him on a feeding tube and then—you want to know what that sheet of paper [DNR status] is good for? We sit around, me, my brother and… my two sisters and hashed over at what point are we going to take him off this stuff. And we’re sitting there…and my mom’s sitting there… this has gone on for 2 weeks. She hands us a piece of paper and it says right there—Do not put him on a feeding tube and we felt sick. But she —she had never read it…We said—well, he’s answered our questions…and within 42 hours [of stopping life supporting measures] he passed.” [interview 13, patient, male, white]
“I see people here—they’re blind… they don’t have hands and feet. A lot of them can’t walk, a lot of them have diabetes in addition to the dialysis and I’m looking at them thinking— uh, thank you god [crying].” [interview 7, patient, male, white]
“I’m an easy going person. I don’t worry about it too much. I just do it and that’s it. I say anything personal here it is so easy for me that it’s really a pleasure to work with ‘em you know.” [interview 5, patient, male, white]
“I’m a happy-go-lucky character as far as I'm concerned. Enjoy all the things that a typical older male would enjoy—or a younger male because I feel young…” [interview 3, patient, male, white]
“I don’t question a lot. I feel that they [doctors] know more about what they’re doing than what I know… if it’s going OK, if it’s not too painful, I’m good.” [interview 1, patient, female, black]
 Relationships with family/friends
  Independent with active support“I go by what he thinks. He doesn’t look back. He looks forward ... I just go along with him and help him as much as I can.” [interview 2, family, female, white]
  Independent with limited support“Most people here [at dialysis] have their sons or daughters. I don’t have a [social] support group, so I’m on my own here.” [interview 9, patient, male, Pacific Islander]
  Dependent“I do 95% of the talking [for patient] because … he forgets things a lot. I remember virtually everything…I have to remember everything: doctor’s medications, appointments, my day calendar is my lifeline.” [interview 14, family, female, Native American]
“She [wife] works with them more than I do because I get pissed off or I get angry… I say the wrong thing. It’s best…if I got a question I ask her [wife] basically.” [interview 14, patient, male, white]
  Estranged“And there really is no family member right now. My mother and three siblings have died in 18 months... My family was already not close in any way… and then when that happened, there’s just a war going on…it really is like a lonesome time. I don’t feel anything with them. “ [interview 12, patient, female, Hispanic]
“Especially around the holidays. Christmas, Thanksgiving—last year I was alone for those two. On Christmas I cried a lot.” [interview 4, patient, female, white]
 Potential threats to trust“If you are traditional Native born and raised on the Res., if they tell you to do this you’re going to do this. They tell you to do that you’re going to do that. Whatever you’re told to do is pretty much what you’re going to do because that’s just the way you were raised.” [interview 14, family, female, Native American]
“Some of these patients out here have a problem standing up for themselves so they’re burdened by all the shit that happens, but they won’t do nothing about it. They’re worried more about getting kicked out of this place [dialysis unit] and not having treatment after that.” [interview 14, patient, male, white]
3: Recommendations for discussing ACP
 Who“The conversation with the doctor would need to get to the point where I feel comfortable telling him anything that was on my mind and right now I don’t have a doctor that I feel comfortable talking to other than Dr. XXX [primary care].” [interview 3, patient, male, white]
“For me I would like to hear it first so then if I have to tell it to my wife and my mom…it would be better…coming from me and then maybe have them meet with the doctor or the social worker or the nurse… So they know what’s going to happen. If I tell them—OK, we going to do Do Not Resuscitate, at least they know that’s my wishes and they know the doctor or the nurse or whoever knows already…” [interview 8, patient, male, Hispanic]
“I would like to sit down with a physician who is compassionate but direct. Give me the fine points. That way I can make a good decision. Know what she [mother] wants. Hearing what’s available.” [interview 1, family, female, mixed]
“… I wish there was somebody that could play the role I play on your [patient’s] behalf for each patient, that can ask [the patient] tough questions in a compassionate way and say—you need to deal with this. In regards to your family [conflicts] you need to deal with this... So I wish that there were a social worker that…had their own file on every patient and was able to go and routinely ask tough questions and give you answers like—you really need to get to a lawyer and do this. And you need to go to your minister or your church and do this. You need to go to XXX mortuary and do the advance package there…you need somebody that’s objective to the situation…third party that’s not a family member. Walking people through checklists of end of life.” [interview 12, friend, female, white]
“In my mom’s case I think a family member should be invited [to ACP meetings] because of her hearing and she can’t really read. We have to read for her… she won’t say nothing if she doesn’t hear.” [interview 15, family, female, Hispanic]
 What, when, and where“A lot of these things [prognosis and ACP discussions] doesn’t come up and you just don’t think about them. It’d be good to learn about a few of these things and keep them in mind.” [interview 5, patient, male, white]
“I would like to know [my mother’s prognosis] and I would think there would be somebody to communicate with me knowing that—you got my number, give me a call somebody.” [interview 1, family, female, mixed]
“…[C]an there be a spiritual aspect to all of this? I would have a very different conversation with someone who very much fears death and is looking to cling to any hope of kidney transplant and life…as opposed to someone who’s okay with it so would want someone counseling me to take that into account. It is very different to talk to someone who is scared to death to die and someone who is at peace about it.” [interview 12, patient, female, Hispanic]
“They say he’s [nephrologist] here on Wednesdays, but he’s probably busy on Wednesday so how you going to barge in if he’s busy? So an appointment would be better.” [interview 15, family, female, Hispanic]
“There’s no doubt that my wife and I waited too long to have that discussion and part of that is—my wife is very quiet. We never really communicated that well, I mean we got along fine we’ve been married for 55 years. So we never really had that discussion. And before I realized it was kind of too late. [interview 6, family, male, white, health care proxy for patient with cognitive impairment]
“…[B]ut make it as an initiation, not something later… but part of —let’s go over your plan. It should be part of your care plan.... What do you want us to do—a DNR isn’t offered and should be and explain to people that’s what it should be. I had to do my own. They have them, but it’s not offered.” [interview 11, patient, male, white]
“… at least 15 minutes [to discuss ACP]. They could do three or four each visit [to the dialysis unit]. You wouldn’t have to do them all at the same time.” [interview 4, patient, male, white]
“It probably would be [best to do in the dialysis unit]…Personally I don’t like to go out evenings and do things like that.” [interview 5, patient, male, white]
“I would guess in the office…private…. Don’t make it like it’s a death sentence. Somewhere comfortable…like a doctor visit or something.” [interview 8, patient, male, Hispanic]
 How“I would certainly suggest not having it in a group. Talk to the individuals like we are now because I think a lot of people are afraid to express their personal feelings about things or about people in a group. I think that’s pretty natural. I would certainly suggest doing it individually.” [interview 7, patient, male, white]
“I think it really does have to be organized and it really does have to be concerted and it really has to be serious and it really has to be paperwork and a true official document… who will do that here [dialysis unit]?” [interview 12, patient, female, Hispanic]
“I think that discussion should come before you get to the critical point… Yeah, things are going good OK, but things could turn too. At the jump of a dime things could turn so I think the more prepared you are the better you could handle things when situations get tough.” [interview 1, family, female, mixed]
“… [I]n my mind the only way that you’re going to reach… people is to reach them on a personal level. You need to get to know them. They need to get to know you and that’s… critical. You can get to know them if you can get them to talk about themselves. Usually it’s pretty easy to get somebody to talk about themselves, but they need to trust you… It takes time. It just flat-out takes time and many, many conversations. And when I say conversation I mean exactly that—two ways. Not just talking—a conversation.” [interview 7, patient, male, white]
“… I would like my doctor or somebody to ask me —and they [doctors] do more than social workers do —… How’s my care at home? …How’s your daily life going? Are you happy with your treatment?” [interview 9, patient, male, Pacific Islander]
“A questionnaire might be good. Then it would be very private, but with me I am very open and if they just wanted to come and talk to me about it that would be all right. But I’m sure most people would like a survey.” [interview 4, patient, female, white]
“So grandma may be taken back there and told this, that and the other thing and she may not be understanding what they are saying. And she tries to tell granddaughter or grandson who’s taking care of her and they may be the quiet type born and raised on the Rez. [reservation] and they’re not going to question it. In my opinion when you ask… about engaging people on the prognosis I think it has to be a group effort really.” [interview 14, family, female, Native American]
  • ACP, advance care planning; DNR, Do Not Resuscitate.