Table 3.
Qualitative Themes, Subthemes, and Quotations Related to Perceived Preparedness Organized by Transformed Category
| Theme | Very prepared |
In between or very unprepared |
||
|---|---|---|---|---|
| Subtheme | Quote | Subtheme | Quote | |
| 1. Spokespersons' perceived preparedness is influenced by their experiences during ACP conversations | 1A.i. Conversations increased knowledge or confidence because it reinforced what they already knew or clarified specific elements they were not sure of previously | “Absolutely, [the conversations] helped, because there were some things that I just never even thought to ask myself. And it makes me more comfortable to know the type of things I may be faced with.” “[The conversations helped] because they clarified some fine points even though we've had these discussions before” |
1A.ii. Conversations introduced uncertainty or confusion (“surprise”) | “[The conversations] made me realize how unprepared I was and how I need to be a little more mindful of this because I realize she does have health conditions that could lead to some of these things. So, I just need to continue daily to try and wrap my mind around it and I don't know in the situation what I am going to do.” “I was surprised at one or two of the things that she had put on the advance directive, like that she didn't want a feeding tube. Which surprised me because it just seemed like that was a minor intervention. It's one thing to say, you know, ‘don't put me on a ventilator for six months’ but it's another thing to say ‘I don't want a feeding tube.’ So that surprised me, I'll be quite honest it did. And we have to kinda go through that in a lot more detail” |
| 1B.i. Conversations not necessary because knows patient well | “I think because I've always been [very prepared]. I've been in this role with [loved one] from the beginning” | 1B.ii. Conversations led to concern for conflict or that loved one does not fully understand their condition or circumstances | “…some of the answers kind of disturbed me a little bit. And he said, ‘what do you mean?’ and I said, ‘well I mean I just don't understand why you would want [to be] revived in all these circumstances where your quality of life would be terrible or you'd be in a lot of pain…I feel like it sort of puts me in a kind of bad place because I don't know that in these scenarios, if he gets to that point, that I would want to agree with his wishes…I was really very surprised and upset by his answers…I think it helped me realize his lack of reality. Like I really didn't think he was very grounded, and I think he's even less grounded than I thought” | |
| 1C.i. Conversations revealed change in patient wishes | “She used to say she did not want resuscitation, but she has changed her mind. And she said she didn't want a feeding tube, colostomy bag…but she has changed her mind… the reasoning is she wants to live” | 1C.ii. Conversations revealed a disconnect between loved one's wishes and spokespersons' understanding of wishes | “I always assumed he wanted dialysis, but when we [completed the ACP intervention] I gathered that he either changed his mind about dialysis, maybe because he has cancer. I am a little unsure [now]” | |
| 1D.i. Conversations not upsetting or uncomfortable | “I'm very comfortable with the kind of conversations that we need to have” | 1D.ii. Conversations are upsetting or uncomfortable | “If I think about it, I'm going to get stressed out. I won't be able to work…I got responsibilities, I got a house, I got girls and I got a wife I got to take care of” | |
| 2. Spokespersons' perceived preparedness is shaped by their comfort with uncertainty | 2A.i. Comfort with not knowing all specifics or nuances of potential end-of-life scenarios and how they may impact patient's preferences | “There's probably wild card scenarios I'm not prepared for, but I think common sense and knowing her directives or wishes, I could probably figure out what she wants. But I mean, I would never say I'm totally prepared because [laughing] I don't think you could be totally prepared for everything.” “I think I have a fairly good understanding. I mean I think you can never be fully prepared because life throws all kinds of curveballs at you” |
2A.ii. Discomfort with uncertainty; preference for knowing situational specifics | “It's not as black and white … I don't want this or I don't want that…I would have to ask the doctor more when I'm making that decision…I'd have to get a little clearer in my mind to be able to [make decisions] according to [patient's] wishes” |
| 3. Spokespersons' relationships with their seriously ill loved one, their other family members, and/or the medical team influence their perceived preparedness | 3A.i. Being entrusted to assure loved ones' wishes are carried out contributes to feeling prepared (i.e., sense of duty) | “I'll stand up to anybody and say, ‘No, this is what she wants.’ She's the important one here.” “I want to do what it is that she wants…if I could be a vessel to make that happen…that's where I am.” “I just have to, so to speak, tie my shoelaces, tighten my belt, and do what I have to do as a father and a husband for my kids and wife” |
3A.ii. Mistrust of medical team or anticipating conflict with medical team or conflicting information from medical team | “Sometimes the doctors don't respect you, either, when your family seems to me like they should have the most say. You come in with your papers. Is it [the Advance Directive] going to hold up? That's my concern.” “[After patient's last admission] now I know that it doesn't really matter what you know about your husband's choices…if the information conflicts. You don't know what you're working with. So while I could say in this situation, he would want this, one physician is saying, “oh this is all gonna get better,” and another is saying, “don't know anything put him right in hospice.” What are you supposed to do? So a little real life experience made me decrease my confidence in the ability to carry out his wishes” |
| 3B.i. Supportive family members will relieve some of the burden | “Ultimately the decision isn't just up to me. There will be input from others in his family” | 3B.ii. Anticipating conflict among family | “It would be a fight between her family trying to hold on and me saying, ‘well, that's not exactly what she wanted’” | |
| 4. Spokespersons' perceived preparedness is shaped by personal characteristics (e.g., personal tendencies) and/or personal experiences with surrogate decision making | 4A.i. Personal tendencies influence perceived ability to make surrogate decisions | “I've had no problem at all making decisions for [loved one]. If she was at the point where she couldn't really understand or was unconscious I'm bold enough” | 4A.ii. Personal tendencies influence attitude toward need for ACP conversations | “I'm non-confrontational. I don't really deal with things that I can't affect or change. I just kind of brush them off and don't think about them, and I'm really more of an optimistic person so she's got kidney failure and I'm like, ‘well you know, it'll be alright” |
| 4B.i. Past experiences increased their confidence for surrogate decision making | “I had that experience…[my girlfriend] had cancer. She and I talked real clear…she didn't want to suffer through cancer treatment again and it had metastasized anyhow. It was a good experience for me. I saw it play out, so I see it can work” | 4B.ii. Past experiences or experiences of others increased their awareness of how difficult surrogate decision making is | “I think I faced the issues previously with other family members and observed friends [facing these issues] and it's not an easy one, so although I thought about it and I do think I know his wishes I would hope that I could do what he would want” | |
Quotes have been minimally edited for brevity or clarity.