Table 3.

Barriers Relating to Hospice Care

Barrier	Exemplar Quote
Waiting to meet hospice criteria	When they finally called them, I-I mean, it was like, oh, my gosh. Finally. You know, that’s a horrible thing to say, but finally, we get hospice… It seemed like a long time before he met those criteria of hospice. (5, wife) The first hospice said, no, he’s not—“We won’t take him,” essentially. They didn’t think that he met the guidelines. And so, there was another hospice that said yes. So, he was in hospice for, I would say, about six months before he died. (21, wife) They saw the writing on the wall, and I think they knew that he was destined for hospice, but because at that moment, which was M—early May, h-he didn’t meet all of the criteria at that time to be— admitted. It wasn’t another two weeks until he finally got admitted, so mid-May. He was in hospice maybe two, three weeks, and he passed… The doctor called them in, and [the hospice provider] came and she said, “Oh, yeah, yeah, yeah. It’s just a—it’s not today. It’s just a matter of time.” Well, I could have used you today. You know, I coulda used that little extra support… I think if hospice sees the writing on the wall, is two weeks really gonna matter? I mean, seriously, is two weeks really gonna matter when you see folks kind of struggling? (23, daughter)
Poor coordination	Well, what it came down to was that was the way we could get him morphine. And I had to literally drive like the wind to get to the pharmacy as fast as I could to get him the morphine, but we couldn't do that until hospice was contacted and said, "Okay. Get him the morphine." So it was it was a madhouse. I was calling, calling, calling, and trying to get somebody to okay this fast. (15, wife) And supposedly, that-that was the group that would come in at the end, the last few, um, wh-when he was really in the dying stage, and be there 24 hours. And so, I chose that. It turns out that I was very, very unhappy with the kind of response that they had… He had a-a huge, huge, blister on his heel. It took me two days finally actually having a fit, crying and everything, on the phone, before they would—they sent somebody out to take a look at it… And I couldn’t get them to respond. And finally, they sent out what they needed to send out. It was just—it was one incident like that after another… The last incident was—the, uh, the last four days. So, he died on Thursday. So, Monday night, the director of the summer house… finally called [hospice] and she said, “You need to bring somebody in here. This is now the time to do the 24-hour.” And finally, they brought somebody in that-that, uh, Monday. (26, wife)
Staff inconsistency	One of the things that I thought that hospice should have done is they kept giving me different nurses all the time. And I thought that, that it would have been nice to have the same nurse, the same— continuity. (21, wife) And I found that in a situation like that there were too many people that he came in contact with, and the—everybody’s way of doing things were different. And he had all his life been a fearful person…. So, um, he would give them a very hard time. (30, wife)
Needing more education from hospice about what to expect	I think if I understood a little bit more about the medication and the hospice flow, how that goes,— right? Is it—is it, “Initially we do morphine, and then for three days—and then this”? Like, is there some sort of protocol?… This is actually a point that I wanted to share with you—I wanted to have—I tried to get a hold of the head nurse for hospice… I just was kind of not understanding what to do next. (12, husband) I feel like we had a little lack of information as far as meds and how it goes. You know, as the days progress, we’re assuming that her kidneys are shut down and they’re gonna hurt her, so we’re give her more morphine, or—yeah, how does that—how does that go down? I think that would be helpful. (14, daughter) There was no real discussion about, you know, this is what likely to happen over the next, you know, number of months. (16, daughter) It was very surreal, actually. The hospice team was nice. It was a little shocking because we didn’t realize that my dad wasn’t gonna like be eating or drinking there. (19, daughter)
Difficulty with hospice medications	One of the bad things that happened, um, repeatedly for my mom is that they kept messing up the morphine level… the coordination of care, there were a couple of different errors that happened, you know, well-meaning people. (2, daughter) He looked at the strings hanging down from the overhead lights and he thought they were a noose. I mean, it wasn't anything you know, anything I was worried about. I was just relating to [the nurse] how things had been going. And she suggested Haldol. And I didn't research it… About two, two and a half hours since he had his Haldol… He was suddenly sitting upright… Every muscle in his body was clenched. His mouth was clenched. It was opening and closing, opening and closing. His tongue was thrusting out. He almost bit his tongue off at one point and he was groaning and moaning, and he was in terrible pain… His temperature skyrocketed… From there, his kidneys shut down, and he was gone by Tuesday morning. (17, wife)