Table 3 Dialysis decision-making

“I mean, the typical patients who are not great candidates typically have other illnesses that would-- that are either so life-limiting, or would kind of compromise the feasibility of doing dialysis in them. And probably the one I come up with the most is people with dementia.” (Clinician #2)

“And so, for example, I would bring it up and if the individual has multiple comorbidities.” (Clinician #8)

“Again, because they [PCPs] usually have a longer-standing relationship with the patient that they can help basically negotiate what would be the best decision-making at this stage of the patient’s clinical condition and at this stage in the patient’s life.” (Clinician #7)

“[PCPs] to, I guess be a sounding board. And if the patient has questions or if the patient goes to a primary care doctor and it doesn’t seem like they’re getting what’s going on, I’m hoping that the primary care doctor sort of has their ears open for that and can feed that back to me, so we can get the patient more education.” (Clinician #3)

“And then I think yeah, I’m not the ultimate decision maker, so trying to serve as the liaison between the nephrologist and the patient if there’s any disagreement on what might be best going forward.” (Clinician #10)

“I struggle with this [dialysis decision] because I’m a primary care doctor...Well, I would say if I’m not sure that they’re going to ever need it, if I don’t have the clinical confidence that it’s going to be offered to them. If I don’t think it’s going to be offered, I’m not going to start a conversation about it. So, I guess, usually, the reason that would really keep me from talking about it would be the feeling that the nephrologist is not going recommend it. Yeah.” (Clinician #12)

“Yeah. You know, in the primary care setting … I think that often these discussions for the average patient are sort of had serially, where the patient goes and talks to a nephrologist, the patient comes talks with the primary care provider. I think that whenever there’s some more complicated decision-making process, for instance dialysis is not clearly of benefit, it is something the patient may opt against reasonably, then that often prompts a more directed discussion with the nephrologist. And the logistics often for folks require some discussion between primary care and nephrology as well.” (Clinician #11)

“How long it’s going to be. That’s my concern is, is this going to be once I start it’s going to be forever?” (Patient #20)

“Well, it affected me. I think of a lot of different things. I feel as though I’m going to lose a lot of my freedom. If I wanted to travel or something, I’m concerned about that. There’s a lot of concerns that I don’t see any real positive outlook on.” (Patient #18)

“It’s scary. You really don’t know what to expect. Hopefully, it will help her instead of do nothing.” (Caregiver #25)

“That he’s going to get sicker and issues could happen. I read some different horror stories of different dialysis centers. So, I just hope he gets better and not worse.” (Caregiver #32)

“Well, I gain that I’m able to live normally, I mean, to the extent where I have to go every other day.” (Patient #18)

“They told me it would be-- help me out, make me better, hopefully live longer.” (Patient #21)