Table 4 Questions, themes and HCPs’ quotes

SDM is a continuing process

N: But, you know, that really is the tricky part of this type of conversation. It’s not one conversation in which the decision is made. […]. Patients don’t have to choose at the end of this consultation. So, that is the actual context in which you assess or have to assess these conversations. […] You know, I am not having this conversation with the idea of ending with a decision having been made. An initial conversation with the patient is a bit of an inventory, testing, what have you heard, is it all clear, what are their thoughts. You then proceed from that point.

- Male, Nephrologist

Patients being aware of all options and risks

N: Yes, I think I am making an important decision here, in which I do try to take her along. But that’s difficult. If you, as a patient, have a completely different picture of what a treatment is and what the consequences are, then you first have to completely update that patient about that. You know, “What does that conservative therapy actually mean to you, it does mean that you die much earlier, do you actually realize that?” Otherwise, you will make the wrong decision. And the great thing about these conversations is that it doesn’t have to be decided right away. […] So here we have laid an important foundation on which to move forward.

- Female, Nephrologist

Explore and validate patient’s motivation for options

N2: The key thing in such conversations is figuring out why is this patient choosing this kidney replacement therapy, what are the reasons, and why not choose the other? And to see if the patient’s arguments are correct. And whether the patient has a divergent image that is not correct that I may have to adjust.

N1: Right. And I also think that the question you asked earlier – “What would you see as the best option?” – well, if patients choose that option, then that’s great. But if they choose something else, then you ask why. Why is this patient now choosing this option?

- Female and male, Specialist Nephrology Nurse and Nephrologist

Take control in SDM

N: So I sometimes think the questions you ask the patient have to be in depth to understand whether the patient got it. But at a certain point, it has to stop – in the sense that you don’t inadvertently project your own insecurity onto the patient, which also makes them insecure. [...] You try to push off your uncertainty, letting the patient decide. I’m not that kind of doctor. I think that if I can and must decide something, I will. But that’s also because I’m the expert. Then a patient can also rest assured that I am taking the lead. […] When it comes to complicated medical-technical matters, I think we as doctors should be in the lead.

- Male, Nephrologist

Knowing the patient

N: Yes, I spoke to him [the patient] at length afterwards, and also called him later on. So I think we are now getting to know this gentleman a little bit better and also understanding better what suits him and which stage he was in. Because he came here, a little unaware and uninformed, whereas he’s the kind of guy who wants to be in control, and I did not realize that at the time. So I think we are able to connect to him better now.

- Female and male, Specialized Nurse in Nephrology and Nephrologist

General characteristics of the patient

N: Yeah, I find people [before starting treatment] who don’t want to hear anything about dialysis at all, and we have them too. […] They really don’t want to hear about it, and only want to talk about it “when the time comes”. […] You don’t want anyone to instantly start a treatment they know nothing about, especially if you can already see it coming.

- Female, Nephrologist

Time available before consultation and start treatment

N: So, I like to take time for a conversation. But sometimes we have consultations, with an average of 10 minutes per patient, and then there’s that continuous pressure of a full waiting room. People always appreciate it, though, when you give them time, which I actually always do when necessary.

- Male, Nephrologist

Differences between patient and HCP

N: And with her, she didn’t want something completely different than what I had thought of, or what could be suitable for her.

I: And if it did, what would that have changed?

N: Well, if she was someone who had a very strong treatment desire, where I would think that it doesn’t seem sensible on medical grounds, those are difficult conversations.

- Female, Nephrologist

The organization of care in CKD

N: That makes it easier, having patients who know what they’re talking about. He also has been educated here about the different forms of dialysis. That’s the way we do it here: we have a certain way of educating, putting the doctor at the back of the process. And that has also helped and worked here.

- Male, Nephrologist

As team player

N: But I think that as a nephrologist, you can also do a lot in this [providing information about conservative treatment], but also as a renal failure team, as a dietitian, social worker, nurses … they all play important roles in this.

- Female, Nephrologist

As information provider and advisor

N: Well, especially in the beginning, before they actually start treatment, I already start giving information. And my experience is that people often also need it. For some, the clearance [eGFR] is not that bad at all, but then questions arise. And then I usually refer them to the website, to read more information about it first. Because when people enter care for advanced chronic kidney disease, the clock’s already ticking.

- Female, Nephrologist

Eliciting, checking and adjusting information

N: This is also something I often talk about with patients [the course of kidney failure], because in my experience, people just don’t really know what happens. And just like the patient, I also had a cat who died of kidney failure [the patient thought she would experience the same course of kidney failure as her cat], and I thought I had to adjust that image, because yes, she probably will not die like a cat. I was afraid she had all kinds of weird images in her head. […] I think she really had to know this, just how it goes.

- Female, Nephrologist

As coach being supportive

N: Yes, I think that I am coaching and acting as a sounding board for this gentleman, I think, in the sense that he himself indicates what wishes and limits are, and I can also indicate what our wishes are and state the limits of what is and is not possible. It’s also to find out how he actually sees life and what he thinks about it, what role he has in it and what form suits it best. So, I actually try to think along with him to find a solution. […] So it’s mainly about hearing from him how he sees things, and returning it to him. He’s the kind of guy who can decide for himself, but who does need me as a sounding board.

- Female, Nephrologist

As a practitioner taking responsibility

N: Yes, here I was being persuasive again because it appears that there is something that he hasn’t fully understood. And then I take on my role as a doctor and try to explain how it works.

I: But what exactly is persuasion?

N: Well, not so much persuasion, that’s not the right word, but that I explain the possibilities. So, I rise above the conservation, and explain, “No, but, you didn’t quite understand this”: I‘m taking on a bit of a leading role in the conversation again. […] But, that’s why I’m here, that’s my job, and that’s not negative.

- Female, Nephrologist

Let the patient talk (provide teach-back)

N: Look, on the one hand, I always really love to wrap up a conversation with some sort of summary and conclusion, also to check if we both have the same idea of what we have agreed on. Well, I did here [referring to the fragment from the video-recorded consultation], and on the one hand, you can also say that it was persuasive and I should have let the patient summarize what we decided.

- Female, Nephrologist

Ask the patient more questions

N: Well, he didn’t talk much and that gives me the feeling I was maybe talking too much [after looking at a fragment from the video-recorded consultation] […] Should I ask “What do you think about that?” more often. So, in between, give more back to that patient? Like, “We’ve now discussed this: is this clear to you?” That could perhaps be better – recapitulating every now and then.

- Female, Specialist Nephrology Nurse

Be clearer to the patient and take control

N1: Still, I should maintain control and provide structure in the conversation. Right from the beginning of the conversation too, saying “This is going too far for now; let’s discuss the basics first and then you can talk again with the nurse.” We should mention that earlier.

N2: Yes, maybe I should have said quite early in the conversation that we’d noticed they weren’t well-enough informed yet and we have to go back to providing information.

- Female and male, Specialist Nephrology Nurse and Nephrologist

Persuasion in information

provision

N1: I think – not so much in this conversation [referring to the video-recorded conversation] but rather in the process before that – that we could be a bit firmer. We [N1 & N2] already feel that PD would be a great option for this patient, therefore it is very important how you organize the provision of information about PD for him.

N2: […] If we determine that someone should be informed, then we have a form for the nurse conducting the provision of information, in which the nephrologist’s preference for kidney replacement therapy is indicated. In some cases, the PD education comes first and the PD education is more extensive than the HD education, being a bit persuasive.

- Female, Nephrologist in training

Taking time for SDM

N: This is something you generally do over a longer period [the SDM process]. Sometimes you don’t, because you don’t have a lot of time, caused by rapidly deteriorating kidney function. But if you have time, then you have the time to talk about that [about options for kidney replacement therapy], so I think you should take that time. On the other hand, you shouldn’t keep dawdling. […] So we will get through, we will continue, a decision will come, and it will be taken together in the foreseeable future, without us keeping running in circles.

- Female, Nephrologist