Table 4.

Selected patient statements on what they would have changed about the decision-making process

Nothing that I wish differently

Being informed and prepared for dialysis over time

‘I don't think she could have done anything differently. I think she did it well. She worked with me. She kept me informed.’

‘No. Everything was fine. From the beginning, it was explained step by step to me. So, I already knew what I was going into.’

Sense of fatalism

‘Nothing. You've got to make a decision and then you have to live with it.’

‘Nothing. I don't think he could've done anything differently. I had no choice in it.’

I wish…

Desired more information to get a full picture

‘I wish he would have discussed the chance or, I don't know what I'm trying to say, but the part about it, that you will not live a full life expectancy or some of the side effects of dialysis. I learned that as I, you know, as I went along on dialysis.’

‘I'd like to have known what was going on, and why I was needing this and how long it was going to last, you know, um it kind of helps you plan a little bit. Get your head wrapped around it before you are on it three days a week for the rest of your life…I would just like to have had the information, but not in a three inch thick book. Now, as far as I can tell, I'll be on dialysis, period. If I decide to stop, I'll die. It's just relatively straightforward. But I know now something else can happen and you die.’

A better way to break bad news

‘For him to come and say, “If you don't get on dialysis, you're gonna die.” I just thought that was the most despicable thing a doctor could ever have said to me. It's like telling, “You have cancer” and then just walking out. That's how I felt, like he didn't care. Like “Oh, well, you're just another patient.” So, I was very upset and started crying. And he said, “I'm gonna call a social worker” and then left.’

‘It would be to be more understanding and more compassionate towards me, the way it was announced to me. If he could've explained to me like, this is what happened to you, and this is the treatment or whatever. But I didn't see that. I didn't feel that. All he said was, “You are going to have to be dialyzed.”’

Being powerful enough to resist or delay

‘I should have found out more about it, read up on it, Googled it somewhere before you know, because I went straight from his office to having a shunt or whatever. So I wished I would've just waited. But I was tired, nervous and he was like, acted like I was gonna die tomorrow if I didn't, you know, go ahead with it. So I just went on with it.