Table 6.

Supporting Decision-Making

Strategies	Exemplar Quotes
Interpretations of Findings: FM described the nurse providing information that included some level of indication of what that information means for the patient’s prognosis for survival and/or quality of life.
Avoid False Hope Make Comparisons Describe the Severity of the Illness Hint at the Prognosis Honesty Say Patient is Likely to Die Verbalize Uncertainty	So I think they wanted us to know what had improved, but they still wanted us to know the reality of the situation. Like they didn’t want to give us false impressions that she’s doing better…I don’t think that’s a bad thing; I think that’s actually good. I wouldn’t want them to lead us to believe that everything’s going to be okay… if it wasn’t so. Of course I want to hear how she’s improving, but I don’t want to …I don’t want to leave at night thinking ‘she’s definitely going to be here.’ (Granddaughter of P14, Single Interview, Day 6)
	They constantly let me know that she is very sick…They [want] me to know that this disease…is a disease that hits hard…I think what they want me to just keep in mind, that if for some reason the medicines do not work, or if her body is not strong enough to accept the treatments, just to keep me informed that it’s the disease, and it’s not my fault, and it’s not her fault, but it’s just what she’s up against and what she has to fight against. (Daughter of P15, Second Interview, Day 10)
	It is [very reassuring]…to know beforehand what the possibilities are…because when they do happen, then you’re not in shock. You can kind of prepare for things. Well I mean they’ve been candid enough to tell me that the possibility is always there that she could not make it through this. They’ve been up front with me. But at the same time, they give me hope in saying she may have enough to do that; we just don’t know yet. So like I said, I just couldn’t ask for it to have been any better as far as communication and the caring for my mom and me. (Son of P14, Single Interview, Day 5)
Negative Avoid EOL discussions Give False Hope	The main thing they [nurses] are doing is just sitting there…I’m not criticizing them but they will…say, “everything is about the same.” …I don’t know who…but it’s time, that somebody…told her it’s time to start dwindling him off. I think. Am I wrong to think that? Do you get how long this has been? (Sister of P5, Second Interview, Day 13)
Discuss Nature of Decisions: FM described the nurse discussing the decisions, including their consequences and meaning
Describe What to Expect Discuss Code Status Discuss Options Discuss Trade-offs Explore Values Reframe Hope Say Do Not Want to Inflict Pain on Patient	When that time should come, if it comes, what is the protocol for the patients and the family, are we able to…stay in that room…is he taken to a private area.’ They just explain, ‘no, you will probably stay in that room’…Pull the curtain, he would not be receiving as much care, like checking his blood pressure every few minutes, and that they would pull the curtain and just allow us to be there with him. It’s not something I want to have that conversation about. But, it’s a conversation I needed to know. It gives you time to think about what to expect if it gets to this point down the road, and you’re not just suddenly there. [It was helpful because] I don’t want to just end up there and go,’ okay what now?’ (Wife of P11, First Interview, Day 4)
	The way they explained it is that what would happen is if we take him off antibiotics, which he’s on now, if we take him off platelets, if we take him off the blood pressure medicine and all that, we can keep him comfortable, he just won’t have any help in continuing life. And they said, ‘is this what you want because if this is what you want, and you tell the doctor then you know…’ (Sister of P9, Second Interview, Day 5)
	Yeah the nurse let me know how her condition was and just said ‘you don’t have to let go of her; you let nature take its course and leave it up to God,’ and he/she said, ‘as long as I’m here taking care of her, I’m going to do everything that I can to make her as comfortable as possible…It helped a lot…I guess I came to a point where I’ve got to accept it… I felt very very…comfortable; I even slept better at night knowing that he/she was here with mom and stuff, so I felt better. (Daughter of P15, Third Interview, Day 14)
	[The nurse] was just saying how he/she didn’t want to inflict any more pain on her; they were saying about changing out those lines and stuff and [the nurses] was like that’s going to hurt-it’s painful because it’s in her neck…so I don’t want that, so I was appreciative of them telling me that .. It was hard to hear them say that, but them being honest it helped…Yeah, it did [help with decision] because I was thinking ‘please just do whatever you’ve got to do’ I was thinking ‘I don’t care what you do, do what you’ve got to do’ but when they came in and was like Sharlene, ‘we don’t want to keep inflicting pain on her; she done been poked so many times, and she gots these lines and stuff in her; we don’t want to keep doing that and seeing her hurt and suffer.’ And you know they the ones that have to do it, so I understood what they were saying, and it just showed that they cared a little more than a nurse would so. (Daughter of P15, Third Interview, Day 14)
Remain Unbiased: FM described the nurse discussing decisions without bias
Accept decisions Avoid Unsolicited Recommendations or Advice Leave Decision to Family Member	It was comforting to know that we had made that decision and that, based on Roger’s personality and his degree of agitation, that he would not have wanted that in his throat. [The nurse] didn’t say yay or nay; we explained…his degree of agitation when he gets tired of something. And [the nurse] laughed and said, ‘I have gathered that’ And it was reconfirming that, what [the nurse] saw in Roger and what we explained to him/her that he/she thought that we had made a good decision. (Wife of P13, Second Interview, Day 14)
Negative Lack of Support for Decisions Render a Personal Opinion  FM described the nurse avoiding giving recommendations.	Um I guess maybe an opinion about…‘well, if it were my family member’…‘my mother has power of attorney for me and she knows exactly what I want.’ Well, I also discussed this with my husband when we got this… [I thought] Um that’s fine for you but, you’re not me and, everyone is different. And I don’t really care what you want to do with your life and your family. It’s like questioning you. (Wife of P5, First Interview, Day 5)