Table 3 Questions, themes and patients’ quotes

HCP’s opinion

I: And why do you think he is better able to decide?

P: He knows everything about it [about dialysis], he knows the consequences, he knows the impact on your life. So, I am … I really like it when I ask for his advice, like, ‘“What would you advise, what do you think is the best thing for me to choose?” I like it when he answers honestly.

P: Yeah, he’s the expert, and he knows. See, I only have information from stories and books. And he knows what it actually does to your life. So, I like that. Yes.

- Female, aged 64

Medical options

P: I don’t know if … well, as a patient, you can of course have certain desires, but if that isn’t medically justified or possible, then that’s it, everything stops. And then there comes the input from the doctor, who says “Okay, that’s all well and good, but it probably won’t work for you”, or “We can start with that, but the question is whether we can keep it like that”. So there are other sides to the story too. I can have all those desires …

I: Yes, and not everything is possible.

P: Not everything is possible.

- Male, aged 76

Consider the environment

I: And do you ask for the doctors’ advice and take that in mind?

SO: Yes, I take it home and then we have a discussion at the table together.

- Female, aged 68

Type of provision of information

SO: And we’ve visited people, through the arrangements of the hospital. At home with a woman, who has been doing this [PD dialysis] for 2.5 years. […].

P: Yes, and we were received very nicely by these people. Absolutely great.

SO: That was a positive thing, of course …

P: They showed us everything, how it [PD dialysis] works in everyday life, no secrets. Fantastic!

I: Okay, well that’s very nice.

P: And after that [after the visit], you look at it differently, you look at it very differently.

- Female, aged 74

Timeline of SDM before starting treatment

SO: Yes, but you also thought it was a step further, that now you had to visit that vascular surgeon, that it [dialysis] is getting closer and closer.

P: Yes, and you asked the doctor, “How long could it take if it stays that way?” Then she said, “It could take another year [before dialysis starts]”. If nothing gets in the way.

SO: Yes, yes. It can take a year, but it can also be within a year [that dialysis starts]. They just can’t answer that. And they are very honest about that, I mean, if he gets sick [the patient], then dialysis could start right away. So they can’t say that [predict when dialysis will start] and they are honest about it.

- Male, aged 77

Take control during the conversation

P: Maybe I would interrupt him in the 80+ story, huh. That I would say, “Man, you don’t have to explain all that to me, that’s irrelevant in my situation.” That is maybe what I should have done during the conversation. Because he talked about it quite extensively [about conservative therapy]. So maybe I should have said “Yeah, but that’s not the case at all, so tell me more about the difference between haemodialysis and abdominal dialysis instead.” Maybe I could have been clearer about that because it’s still unclear to me.

- Female, aged 64

Ask (more) questions

P: Maybe, I would ask the doctor, “Okay, I’m too young [for conservative treatment]. But what is conservative treatment exactly, how does it work? What medication is required? What’s the prognosis? How many years can you live on it? At what stage? There’s so much I don’t know. Also, I don’t know what stage I’m at now, regarding my kidney function – I don’t know. I forgot to ask her that question because I don’t know.

- Female, aged 57

Take notes

I: Because, how do you do this when you forget things and sit at home and think, “What about that?”

SO: Yes, then we’ll ask these questions the next time. […] You don’t write anything down, and that’s actually a typical human error.

I: That you think you’ll remember what has been said?

SO: I have to write that down! Use a cheat sheet and take it everywhere with you when you go somewhere. Just like when going out for groceries.

- Female, aged 68

Be consistent and reliable when providing information

P: The information is correct, only I imagined when I got into this that I could only choose between three options. Namely doing nothing, home dialysis, or some other form of the two dialyses, abdominal dialysis, or in the hospital, right? But now he mentioned a transplant. But at the clinic, they told me transplantation was out of the question because I’ve turned 70 and that’s the limit. They said I didn’t stand a chance of getting a transplant. And now he suddenly provides me this option!

- Male, aged 74

Provide more information

I: Because, even if you were going to have dialysis, you would like to receive a timeline?

P: Yeah, rght, a timeline. For example, how long can I go on receiving dialysis until they say, “Well sir, your kidneys are now so bad that you need a kidney transplant.” And I actually missed that point; you do read a lot about that of course.

I: About transplantation?

P: Yeah, kidney transplants. And later on I thought, why hasn’t that been mentioned?

- Male, aged 76

Share responsibility in SDM

P: In itself, I am satisfied. Only, if they say I need to prepare for dialysis treatment, I’dsay, “What’s the best treatment for me?” Now I have to decide for myself what that is. Of itself, there’s nothing wrong with that, but they may say that won’t suit me.

I: Would you like more help with that? That they then go and see what suits you best?

P: Actually yes. In consultation with me, of course.

I: Yes, exactly. That you are really a team.

P: Yes. Now, as I see it, it’s like, “Well, you go ahead and choose.”

- Male, aged 74

Ask more questions

P: Maybe she should ask me, “Yes, why?” Ask me more about my reasons. Ask me why I say I don’t want dialysis. Dig deeper, like, “Why do you say that? How many children do you have? You have children, but do you want to see your children grow up?”

I: Yes, asking for the reason behind it.

P: Yes, exactly.

- Female, aged 57

Look at the patient more holistically during SDM

P: A tip for her is to look at the whole picture and ask yourself what else is wrong with this man. [Besides his kidney disease] Because of course, I only come here for the kidneys, but in principle, liver and heart and so on are all there too.

- Male, aged 66