Box 3.

Theme 3: Standardized versus individualized approach to CKD

Quote	Quotation [source]	Participant
3a	There are no symptoms, per se. They check my blood. The tale is told in the blood. That’s why they take the blood every time I go see them. They can tell if I’ve got certain things going on. [patient interview]	30
3b	I think my numbers are going to make my decisions actually. If I get down below 13 much, she wants to start doing [dialysis]. [patient interview]	35
3c	You’re down to 10%, you’ll get the dialysis. So, how do they set up the 10%?…Right now I’m about 15. I feel okay…But if to the point, I said, “I feel so sick, why do you say it’s not yet?” [patient interview]	34
3d	Everything is quicker in meetings with the nurses or the doctors…it’s more black-and-white--”Here is what you do. Here’s the thing that you’ve got to do. Here’s how you have to go on these…“ They’re more interested in physical feelings. Am I tired? Am I whatever? They’re looking at it from a medical point of view…It’s all statistics and results and things like that. When they talk to patients, they’re using that type of information. That’s all fine and dandy, but life isn’t just cut and dry. There’s a little more to it. I don’t get the impression that it’s something they really want to hear. [patient interview]	19
3e	Empty your teacup and you’ll be able to learn. If you want to taste my tea, and you have a teacup full of your tea, you’re not going to taste my tea. If you want to taste my tea, empty your teacup, let me pour some in. But if you mix it with yours, you’re not going to taste it, you’re going to say it tastes bad…“Loosen up, empty your mind and listen to me, then think about it,” that’s what I like to say to doctors. [patient interview]	13
3f	We recommend the standard of care and I show them the guidelines, if they want to see them. [clinician interview]	20
3g	It is my goal to provide them with all the information that I can. For me then, to understand what is important to them, based on that information, and then help them navigate this very difficult journey. [clinician interview]	22
3h	She is interested in peritoneal dialysis and would like to learn more about peritoneal dialysis. However, given multiple abdominal surgeries, may not be a candidate. [medical record]	L
3i	We’re working with patients and scrutinizing them closely for the development of uremic symptoms…But then also talk about goals of care, I would say, almost impossible within a 25-minute visit…It’s not something that I would say is in my wheelhouse of strengths, working on advance care planning. [clinician interview]	2