Table 2 Dialysis discussions

“So my job is to start the process and tell them how to get more information on the time that we’re not together, and then continually follow up with them until they feel good about the decision.” (Clinician #3)

“The nephrologist should 100% be the-- I think we have the best sense of what that [dialysis] kind of entails. Of course, if there are other physicians and other people, part of the team, I think getting a sense of the patient’s overall goals and functional status and comorbidities is very, very relevant, but this is something that we will ultimately be prescribing and managing. So, I think we should have the central role in it.” (Clinician #2)

“Yeah... I bring it up in almost all cases. And then if there are glaring issues that I think a patient would suffer more than benefit from dialysis, I point those out because most patients are aware that dialysis is an option. So, I think never bringing it up is not part of my practice because they’re going to wonder about it.” (Clinician #8)

“I have never had someone who refused to go through dialysis for quality of life purposes.” (Clinician #1)

“I think the primary care doctor kind of understands the most about the patient’s social situation and I think my role and a primary care doctor’s role is to kind of help patients through the initiation of dialysis, actually, and through the kind of challenges of getting the treatment.” (Clinician #6)

“So, I’ll be thinking about their whole illness, their whole life, how these things would fit in. And I can help them understand kind of what life would be like if they go on dialysis and how I would still be involved in their care.” (Clinician #12)

“There are, however, other situations where I’ve had this same patient for many, many years and now maybe I referred them to nephrology, but I know the patient better. I know the patient’s family. I know the patient’s trajectory of how this has all developed and I think in those settings, I mean, I think the primary care doctor can always offer knowledge of the patient and the patient’s goals and contribute that to the conversation.” (Clinician #13)

“The nurse … went over everything with us. They gave my mom a little booklet, which was very good information in it. She explained it would be three times a week. We talked about a fistula, that her getting that, and she did mention that my mom could do it at home, but it would be four times a day and my mother didn’t want to do that.” (Caregiver #25)

“Only that they’re going to be putting fluid into my belly. It’s an input and output, so you put in the fluid and you take it out, and you put it in.” (Patient #23)

“I know dialysis is something that you have to-- I think insurance only covers it for three days a week. And so, you have to go every other day, and then you can’t miss it, really. And I guess that’s about it, yeah.” (Patient #18)

“I’m disappointed that-- I got to do what I got to do.

I don’t have a choice.” (Patient #19)

“I don’t know. I’ve never really thought about it. Well, all I know is that I have kidney failure, and if you had no kidneys, what are you going to do? You’re just going to die. So, the only alternative is dialysis.” (Patient #31)