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Table 4 Processes of advance care planning

From: Caring for older patients with advanced chronic kidney disease and considering their needs: a qualitative study

NephrologistsPrimary care physiciansPatients and caregivers
“I usually kind of put that [advance care planning] in the hands of the primary care physician. I would say I think that’s the cultural norm for a variety of reasons that makes sense. They theoretically are looking at the broader scope of the patient. We tend to be sub-specialists who are consulting. Someone referred the patient to us for a pretty specific reason, mainly kidney failure, or whatever, and so we try to stay within our assigned role of that.” (Clinician #2)
“I just don’t feel comfortable and I don’t-- I also don’t want to duplicate or maybe contradict if the patient has already discussed this [advance care planning] with a primary care physician or some other providers. They come to see me for nephrology care primarily, so I focus on nephrology with patients. If somebody asks to me to do this, I’d be happy to, but I don’t particularly do it-- actually, I’ve never done it.” (Clinician #4)
“So yes, I have done some of that. Could I do better? Certainly …. They’re doing that more and more on an inpatient basis. I think the primary care doctors could do a better job because it’s pretty consistent that our patients have not discussed that.” (Clinician #8)
I mean, often. I usually do it many times. I mean, I see patients at annuals and follow ups. And usually, at least at their annual, we talk about some of these aspects.” (Clinician #13)
“Again, like I said before, having a relationship. Again, I think primary care doctors are in the situation where they have hopefully established trusted relationships. I think the nephrologist, as someone who’s sort of seeing somebody for the first time, it’s always hard.” (Clinician #16)
“The family and the patient and me. And with the backdrop of the nephrologist having given me the information and possibly-- so if you’re asking should the nephrologist be the first person to raise it that is often not the right circumstance …” (Clinician #15)
“Absolutely. I think anybody who’s going on dialysis, especially late in life or with significant comorbidities, it’s a helpful trigger for doing some advance care planning.” (Clinician #11)
“Not really. My husband and I have talked, but no one else has talked.” (Patient #21)
“We haven’t done one yet, but because she told us that because I’m his wife then I would have a say in it.” (Caregiver #27)
That was many years ago that I filled that out. I’ve been in and out of the hospital for years. I’m sure that it’s just part of the process.” (Patient #31)
“I guess if it has to be, it has to be done.” (Patient #26)
“I think it’s a necessity. People should know and should have the right to go the way they want to go.” (Caregiver #34)
“When you’re at the point that you know something like that is happening, I guess. If it points that way, I would want to have it before it was too late, I would say.” (Patient #33)
At the doctor. At the kidney doctor, really. The doctor I see really.” (Patient #20)
Okay. And so where should this conversation occur? In the kidney doctor’s office …” (Caregiver #27)