Table 5 Examples of reasoning about identical/changed card choices

 P9

Not being short of breath

(4). My uncle, he wasn’t a bad person but he believed that he… he had rock hard military discipline and when I didn’t obey, then I was locked in a warm and damp closet they used for drying laundry. And it was behind a stone wall, so it was always hot and it was pitch-dark in there. And after that I’ve always been terribly afraid of not getting air.

(1). I’ve always been afraid of suffocating. It started when I was a child, I was with my aunt and uncle and was locked in a warm and dark closet when he thought I was…They didn’t have children and he had principles.

 P18

To have a human touch

(2). This with touch is very interesting. I could have a lecture for you now (laughs). But really, if you’ve read books by people who can’t take care of themselves, how you are touched… That is, physically touched when someone touches you. Warm hands, cold hands, heavyhanded and gently. You understand, so… So touch is very important.

(6). And to have a human touch, that’s very important. I’m trained in tactile massage [a form of massage developed in Sweden, consisting of light touch and pressure], so I know what touch does with us.

 P53

To pray

(1). Yes, since I’m religious and have prayed every day, well maybe not absolutely every day, but really mostly every day, and found it to be a…an absolute support in life.

(2). Yes, but just this, my faith in God and just having the possibility of having that contact and at the same time also prayer, it is… Evening prayers have become much more important as time has passed.

 P7

To be cared for by staff I feel comfortable with

(7). And if I’m going to be cared for by staff, I want to get along with them and that they see me as the person I am.

(8). I really believe that we staff, and staff and those around create more problems than benefit. This with humanity, it’s important to be able to see a person and like, who am I there for. Because staff and friends and relatives maybe also, create stress in the environment so it’s not beneficial for the person who would really need to have calm surroundings.

 P45

To have those I am close to around me

(8). This might be important, but it may… Yes, but I mean, you just don’t know [how it will be]. If circumstances are favorable, that can be the case, but you can die alone also, if you die quickly, and so that’s that.

(8). Yes, I would really like some of them to be there so they can see what it’s like when someone dies, they’ve never experienced that, I think.

 P42

Not being a burden to my family

(8). No, you don’t want that. You just have to hope there’ll be room in a care facility when it’s needed.

(−). Yes, that’s important, that you’re not [a burden]. For example, when you start to be in such bad shape that you need to live in a care facility, that you really get a place there.

 P18

To be mentally aware

(−). To be mentally aware, that also feels important. I’ve thought about it when I’ve worked with those who are both very physically ill but mentally aware, and then I’ve worked with those who have a serious dementia but a healthy body, and that’s worse, as I see it. Because if you are really sick you can still communicate how you want things to be.

(1). To be mentally aware, yes please [short pause]. Yes, if I can wish. Because it is…that is, my experience is like this, if your mind is clear and your body is sick, you can still take things in and you can understand. You have a really hard time. But to not be mentally aware, to be… […] I think that seems like it’s worse.

 P10

To die at home

(−). I absolutely don’t want to be at one of those…yes, like an old age home or… […] And then it says it’s rehabilitation. I’m so (curses) tired of that, and I don’t want [laughs]. […] And I want to live at home, yes, that’s what I want as long as possible […] And I want to participate in the decision about when and where I will move, yes, that’s what I want. And if I’m in the kind of shape where I can’t, then I just want to die.

(2). I would prefer not to be cared for at all. And to die at home. I really don’t have any desire to die in some hospital you know.

 P53

To keep my sense of humor

(−). [No reasoning recorded].

(7). This came about one evening when I came home, and was both angry and sad, and so… I called a neighbor who lives next door and we talked about it, and an image came into my mind that I told him about, and I laughed about it myself. And then afterwards I realized how good it was to remember your... to have your sense of humor left, because I remembered how it eased things and helped me.

 P33

To trust my doctor

(7). [No reasoning recorded].

(−). Yes, you see what a difference…this about trusting the doctor. I think I had a good doctor at that time.

 P18

To be free of pain

(−). Ehh…if I summarize this about having difficulty breathing, anxiety and worry, and being painfree, if I summarize it by saying if I have confidence in my doctor, that he’ll fix that, then I remove these three cards.

(3). As I said, if I keep these five physical cards [To be free of pain, Not being short of breath, To be clean and neat, To be free of anxiety, To have human touch], because I believe so. If this is taken care of and you know there is a plan. If I have more pain, then I’ll get more pain medicine… If I have more anxiety, then I can have some medicine or just someone to take care of me.

 P42

To have my funeral arrangements made

(10). Yes, before I’ve gotten to the point about how I want to be buried, I was going to say, I hope you get care so that you’re not just lying there in pain.

(−). All that…that’s already planned you know.

 P53

To have an advocate who knows my values and priorities

(8). [No reasoning recorded].

(−). I: That this is… it’s settled already.

M: There’s someone that can speak for you?

I: Oh yes, and we’ve spoken about this [puts the card in the less important pile].