Table 3.
Salient quotes: Views of success, failure, and outcomes by decision-making model
| Paternalist |
| Role is to serve as patient’s “guardian” |
| Patient trust and respect valued over strict patient autonomy |
| Prioritizes improving patient health over patient autonomy in decision making |
| Tailors discussion of treatment options to maximize likelihood that the nephrologists’ recommendation is selected |
| On when to start KRT discussions |
| “It’s not so much cut and dry in my opinion, there’s an art to this, and you kind of have to know your patient too. And if you know them, you know how their body is reacting to certain things; you can kind of get a sense for when you need to potentially start having those discussions” (ID 39) |
| On nephrologists’ roles |
| “I would say paternalistic is the best word to describe it. [With] some people you have to be more confrontational to, you have to be paternalistic in a different way, you have to be somewhat browbeating, you have to be, treat them like your 10 yr old son or you know where ‘you need to do this,’ you know you have to lecture them. And that doesn’t always work. In fact, more often than not, I would say it doesn’t work, that approach, but you have to do it. You have to say, ‘you don’t realize it, but a year from now you’re going to be, you know, horizontal, you’re not going to be vertical if you keep this up’” (ID 48) |
| On patient autonomy |
| “People really rely on you to help make your decisions. There’s a whole group of people that will follow along. ‘You tell me Doctor what to do and I’ll do it,’ and those are a win, but it puts you in an uncomfortable spot, because they are relying on you to make their decision. So while in a way those are the easiest … it’s a heavy burden, because they don’t really want to make their own decisions” (ID 48) |
| Views of success |
| “People that follow our instructions … I think an early placement of a fistula whether or not you go onto dialysis is really important” (ID 48) |
| “Do they feel better? Did they improve clinically? Did their symptoms improve? That’s the most important thing—did they get better” (ID 39) |
| Views of failure |
| “I guess the unsuccessful one might be the patient who doesn’t want to talk about it at all. Where it’s so frightening, or imposing, that they can’t even deal with it and refuse to discuss … I haven’t had a lot of people who think it over and say, ‘I don’t want to do any of this, you know, give me the palliative treatment and let me go’” (ID 93) |
| Informative |
| Role is to serve as patient’s “information broker” |
| Prioritizes patient autonomy in decision making and accepts patient’s treatment choice |
| May tailor discussion on the basis of patient’s values, beliefs, and wishes |
| On when to start KRT discussions |
| “If they’re approaching … CKD stage 4, I often want to ask sort of if they had to make a decision today … which way are they leaning, and if patients say that, ‘I’ve lived a long life and wouldn’t want anything done,’ then I again I’ll refer them to the kidney class and I’ll say, ‘I respect your decision; if that’s your decision, I will respect that and support that, but I do want you to make sure that you understand what’s involved.’ … I also mention that this is not a hard and fast decision, so if they change their mind they’re welcome to as well” (ID 14) |
| On nephrologists’ role |
| “I hope they understand what the kidneys do and what some of the basic problems are if their kidneys are failing, and therefore, I hope they then in turn understand what dialysis will and won’t do for them. I hope they understand that we’re trying to work with them on a timeline that will not feel rushed and will allow them to make decisions for themselves” (ID 42) |
| “I hope I can help them clarify their goals. So … what do they want for themselves, and then, once they make that decision, I hope I can facilitate that transition, to whatever that is, and help them through that process” (ID 72) |
| On patient autonomy |
| “[The] ultimate choice of kidney replacement therapy (if it progresses to that point) is something that the patient will look back and appreciate that they made that decision” (ID 14) |
| Views of success |
| “I think that patients have a sense of what works best for them, and I think that sometimes patients know their diagnoses even before we’ve made the diagnosis. So listening to the patient really has been very helpful, and I think the outcomes are better or at least the patient experience is better” (ID 94) |
| “If somebody leaves the room feeling sort of fairly supported and that they can ask additional questions … moving down a path based on sort of a shared decision” (ID 42) |
| “I think the successful discussion is when you really have a conversation with both parties that are equally engaged in it, and … when the patient really understands what’s going on with them and what will be best for them” (ID 58) |
| Views of failure |
| “I think there’s probably a whole bunch of unsuccessful discussions we’re not aware of, because we don’t really understand what people took away from what we’ve said” (ID 3) |
| “I guess a failure of a decision would be a patient that we [nephrologists] are making [KRT] decisions, even though I’ve had a long relationship with them, we’re making those decisions in the hospital setting, inpatient setting, rather than the outpatient setting … [T]he unsuccessful ones are the ones that patients either come to an early closure of decision or have not thought of any decisions … and by early closure, I mean like they say, ‘I don’t want anything done’ is a traditional thing that I’ll hear” (ID 14) |
| “[C]ertain times, you know people get angry at what they’re hearing and sort of not involved in the decision making” (ID 86) |
| Interpretive |
| Role is to guide a patient to an optimal treatment selection on the basis of a patient’s values and goals |
| Develops a strong rapport with a patient to facilitate guided decision making |
| Tailors discussion of treatment options on the basis of a patient’s values, beliefs, and wishes |
| On when to have KRT discussions |
| “I begin with discussions in early CKD [stage] 4 … when GFRs are 30, but usually when it’s in the 20s … [I] approach it slowly, have them think it over for a little bit, come back, talk with family members, and come back again. How have I modified [my approach from] earlier on: I had been fairly aggressive with saying, ‘OK, now all we need to do is set you up with the vascular surgeon, I’d like you to talk about this, I’d like you to go visit the centers.’ I think [patients] probably pushed back quickly … and I’ve backed off a little bit over the years” (ID 81) |
| On nephrologists’ role |
| “I will certainly tailor the information that I’m providing. I’m hoping tailoring them to an appropriate level of education, literacy, etc. … Sometimes, I find that patients are looking for me to have a larger role in the decision-making process in the sense of giving perhaps more concrete guidance. If that’s the case, then I will try to do so in a, still making clear to them that it’s their decision, but perhaps … to frame the decision a little more discretely or concretely” (ID 7) |
| On patient autonomy |
| “I want the patient to decide what is best for them. It’s not like one size fits all. It’s their life, sometimes they don’t want to do dialysis, which is perfectly fine. I mean, the patient’s choice comes first” (ID 5) |
| “It’s important to have a sense of that they’ve been informed to the extent that they can be about what their choices are and that they are making choices that are consistent with kind of where they’re going in life” (ID 26) |
| Views of success |
| “I’m happy if they’ve come out together … we’ve come out with an informed decision of what works best for the patient and their sort of lifestyle and what they want” (ID 19) |
| “The most important outcome is that they receive the care that they have selected, so particularly if they have selected not to receive dialysis and to have conservative care, that they do not end up on dialysis [in an emergency admission]” (ID 7) |
| “I that that the best outcomes is where they do complete that [advance directive] and have discussed it with their family, and then even better is if the family and the patient feel some relief on having gone through the process” (ID 63) |
| Views of failure |
| “A suspicious patient who, who doesn’t believe that they truly need dialysis, an unengaged patient, a patient who holds false belief systems, somebody believes that prayer will correct their renal failure, they don’t need to engage with the discussion. A situation where you haven’t developed trust” (ID 68) |
| “If they’re not accepting, that makes it harder. There’s a handful of patients I have that have never told their family members as to what’s happening, so family members don’t even know that they’ve been seeing a nephrologist, and they’ve been coming every 3 or 4 mo, and they’re at the point that they need to make decisions” (ID 91) |
| Institutionalist |
| Role is to treat patients within the norms and culture of a practice group or institution |
| Cites time as a key challenge to discussions with patients with CKD |
| Tailors discussion of treatment options to patients |
| On nephrologists’ role |
| “You’re aware in the sense a major part of the revenue comes … from the dialysis unit. So obviously I want people to go on dialysis, not but I don’t want the wrong person to go on dialysis. So that’s something which … although I say that I don’t want the wrong person to go on dialysis, but still I feel that I’m doing it” (ID 28) |
| “We talk about quality of life to the patients; we try to gauge what is important for them. But I do believe we do a poor job because of the limits of time that we have with the patients. There are the pressures of seeing many patients, and we don’t have the luxury of setting aside an hour for each follow-up visit, at least in our health system … Trying to align the modality choice, if it’s dialysis or not dialysis, to what they want, what their expectations are, what, what their goals are, but again, I think that we don’t fully explore that because of the limitations of time” (ID 83) |
| On patient autonomy |
| “We try to discuss with them why this is important and uh, that their participation is key, that uh you know, that it really has, that what our goal is try to align whatever we do with what they want or what they desire out of their lives. I think we do, I do think we selectively push some modalities more than others or some depending on the individual” (ID 83) |
| Views of success |
| “The dialysis staff … play a major role in the decision making … these patients and family members, they interact with those staff … more than their interaction with me … Definitely [patient] survival … the next thing will be the quality of life” (ID 28) |
| Views of failure |
| “I think it’s the patient is kind of beyond their denial. I feel so many of them are stuck in that or there is this wishful thinking that their kidneys will get better. There is this notion that if they don’t feel poorly, then there can’t be anything that bad, even if the blood tests show it … I would say that’s the biggest challenge initially, and it’s smoothest when the patients are accepting that they have advanced kidney failure and uh, will most likely at some point in time need dialysis” (ID 83) |
These quotes show differences in nephrologists’ approaches to discussions with older patients at key points along the clinical and decision-making cascade, starting with broaching the subject of KRT followed by perceptions of nephrologists’ role and patient autonomy and finally, their perceptions of successful versus failed encounters. These clinical decision points reflect key themes presented in Table 2, including patient autonomy, perceived role of the nephrologist, engagement and deliberation, importance of specific clinical outcomes, and institutional norms (captured in views of success, views of failure, and when to start KRT discussions). KRT, kidney replacement therapy.